The Preemie Mile

Blog closing...

2009-06-27T18:37:00.001-07:00

I think Im going to close out this blog.. I dont post on it anyway. I had intentions of it and I did keep it quite updated but Ive taken to posting all of the updates on Life as A Convert.. which is my other blog and covers more than just my kids. I planned on posting here only when there was some majour updates with the kids healths but havent really needed to post any in a while. The kids are doing well.. Alo is facing surgery in Sept for some teeth work but thigns are good. So hop on over to Life as a Convert and follow along there.

Alos Uro appt

2009-02-27T16:42:00.001-08:00

Took Alo to the doctor today.. It was a follow to get the results from his last Urodynamics study and his last VCUG... Things were ok as expected... The only real problem with the tests were that he had to poop during the VCUG so it looked like he was constipated.. Oh trust me he isnt! He goes regularly which is a good thing with the spina bifidia.. He has orders for Milk of Magnesia as needed but I dont give it to him If he needs anything I go for a more natural approach and just give him some FSO. He does better with it anyway.. Anywho... they did say that he probably has something wrong with his sphincter which is making him leak and not be dry between his caths. (We were cathing him every hour at one time trying to see if he would be dry between his caths and he wasnt)... So with his next urodynamics study they are going to do another test and see how loose or tight he is.. Depending on that they will talk about surgery to fix it so he can be dry... but the good news is that surgery wont be until a few years from now!! Woohoo!!! As it stands right now this is the 3rd surgery in his future. They increased his muscle relaxer to see if that will help his bladder grow any... Not this past study but the one before that showed a LOT of growth (holding 120-130 compared to 30).. Still high pressures and super early leaking (around 30) but it is progress in the right direction. And I was really hoping we would get the results of his MRI but we didnt.. Neuros werent there. Only Uros. And we got there 7 hours early!!! Woops!!! I thought we were supposed to be there at 9.30 but we were supposed to be there at 4.. That sucked.. but luckily they let us do the basic stuff first (like weight and seeing the nurse to answer questions) so all that was left was to just see the doctor. We left and then went back at 4..

All in all I would say it was a good appt. Im crossing my fingers that his bladder grows more and stops the leaking.

Oh yeah and he lost more weight. He is back down to 12.95.. though I think that might have been an increase from his last visit with that scale I cant remember.. I want to say he was 12.7 last time though.. Eh who knows.

Guess who is a big girl??

2009-02-19T19:32:00.000-08:00

Aybra!! She is now officially sitting by herself.. She topples over some but all in all I call it sitting.

More pics on the regular blog : Life as a Convert

M Preston Pant on LAAC

2009-02-07T20:06:00.001-08:00

Im hosting another giveaway on Life As A Convert. This one is for a M Preston Pants. Come check it out.

Aybra appt..

2009-01-30T12:51:00.000-08:00

Aybra had her routine follow up with the High Risk Newborn Clinic. This is the place where all of the doctors/therapists/etc get together in one appt (saves us many repeat visits) and do their work. Today she only had to see the doctor. Why? Because she is doing so darn well. They asked if I wanted to see nutrition regarding her being EBF still and I told them no. A nutritionist will not change anything. She will continue to be EBF until I feel she is ready and she is past 1 year (corrected). FWIW She isnt even sitting up now, so she is not ready.

Also, the doctor was fine with the no vaxing stuff and has no issues with it but the nurse seemed to have some issues with it. She asked me if I was going to homeschool her.. I thought Hmm this is a new question but I answered "Yes." She tried to tell me that Aybra wont be able to go to school if she isnt vaxed.. Bullcrap :) Im no dummy. As a parent chosing alternative, or rather non-mainstream, lifestyles I am well informed of my choices as a parent.

Anyway on to the other stuff..

The stats:

16.8#
25 inches

Her alkaline phosphatase level is still elevated but going down so they feel no need to continue the calcium or retake her levels! Yes!!!! This means that she can go back on the breast FULLTIME! NO MORE BOTTLES!!!! Now.. the only thing is getting her there :( Her calcium was to be mixed into 6 bottles throughout the day. That was pretty much all of her feeds.. She became quite used to the bottles and now is starting to refuse the breast Argh!!!! Please pray that she will take back to the breast now.

Does synagis prevent RSV?

2009-01-23T16:38:00.001-08:00

NO!! And any doctor who tells you this should not be a doctor! Synagis does not prevent RSV. Synagis is an immunoglobulin. It helps to "boost" the immune system so if your child does get RSV it takes less of a toll on them. Synagis works much like the chicken pox vaccine. Even with the "vaccine" you may still end up with the chicken pox.

Aybra update..

2009-01-17T17:14:00.001-08:00

This is going to be very brief as there is not a whole lot of new news. I guess that is a good thing though. Aybra is doing great after her little sickness. She has recovered and is back to her normal pre-sickies self. She had an appointment yesterday for synagis and according to their scales she was 15# 15oz but that was with a wet diaper, t-shirt and socks. Im guessing she is 15.5#. I really should weigh her on my scale but that just seems like so much trouble.

She has found her voice and she loves using it. She used to play quietly but now she plays quite loudly. She likes to scream and holler with her brothers. I figure it is only a small amount of time before she joins in on the screaming matches her brothers compete in on a daily basis.

Her brothers give her the world and she just eats it up. She never does anything by herself. She is not self serving at all! Everything must be handed to her or she is not happy. She refuses to even reach a few inches to get her toy. She wants somebody to do it for her. I find it quite funny but her brothers are happy to do everything for her, especially Alo. He loves his sister very much and every morning upon waking must crawl over to wheverever she is and give her a kiss. The only time she gets mad at him is if he takes her bottle but I dont blame him. That mama milk is some good stuff!

I realized I dont have many pictures from recently so over the next few days I will be snapping heaps of photos and will eventually post some here.

Woes and more Woes

2009-01-10T17:22:00.001-08:00

Things have been rather hectic around here lately (I tend to say that a lot)..

Alo had to make an ER trip last Friday for some respiratory issues and a high fever. Everything looked ok so they got the respiratory distress under control and sent him home.. Come Monday the fever was just going away but he started having more respiratory issues so again I rushed him to the ER where this time they could not really get a good handle on his issues. They admitted him and did lots of "pulmonary hygiene" (increased IPVs and bopping).. Turns out part of his left lung was collapsed and he had pneumonia again. He stayed for a few days and was released on Thursday. He ended up missing an appointment for an MRI (I was kind of looking forward to seeing the results from it) so it has been rescheduled for mid Feb. He is back to his normal self now. As I type this he is in his room throwing toys all around.

Aybra had her first little trip to the ER. Monday night as soon as Alo was taken to a room Fallon brought Aybra to the hospital so she could be seen in the ER as well. She was having some respiratory issues when I left with Alo but they got worse as I was gone. So, the doctors examined her and said that she has what brother has (duh!). Depending on what her X-ray looked like they were going to admit her but turns out her x-ray looked fine. She was sent home with some respiratory treatmeants. Today is the first day she has really felt fine.

Kaia ended up seeing the PCP on Wednesday. He has the same junk as the others. Surprise surprise.. He got some medicine as well and has been acting better. I would probably say that he was the first one to really get it but he is much bigger and stronger than the little ones and didnt need as urgent care. Alo was hit the worse by all of it but it only makes sense. After a few days in the hospital though he was sounding better than Aybra.

Kiddo updates

2008-12-29T20:53:00.000-08:00

Aybra is well. She has learned how to wiggle around and now does it everytime she is put in the floor for tummy time. She will wiggle and wiggle until she is off of her blanket. She likes to watch TV and if the boys are watching something then she watches too. She is a very distracted nurser lately. She is just too interested in everything going on around her. She will suck for a few seconds then pop off and look around. Its making feeding very hard. Also she is getting to where she prefers her bottles. Hopefully she can get off of this darn medicine soon and get back to 100% breast. This pumping for her and Alo is killing me. Its not that bad too just pump for him but with her I never know when she is going to eat. Lets see... She jabbers a lot.. Like a TON.. Oh and she spits a lot.. probably more than she jabbers. She is very happy and thinks everything is hilarious. Her brothers never cease to amuse her.

Alo is Alo.. He got his AFOs and his KOs. The AFOs are soooooo tiny and then to think his leg and foot is even tinier than that! He doesnt seem to mind wearing them too much. His KOs he hasnt worn all that much yet but they are to help stretch his knees and position his legs better so he will wear them mostly during bedtime, but they have a lot of support and make it easier for him to do weight bearing so he will be using them for PT as well. He is getting better with pulling himself up. He is much much MUCH louder when he yells... If you have never had boys then you wont udnerstand but him and Kaia like to have yelling matches. They just sit and yell and yell and yell... Tis the life with two boys.. Im sure Aybra will be joining in soon.

He was a bit sick during the Holidays but recovered quickly and on his own! Woohoo! We are still holed up for the winter. Only a few more months to go and we will be free!!!!!

Kaia got a guitar for Christmas and is singing a lot of cute songs.. Two of them go like this:

Number 1:
"When I was a little boy I had a boat and I went to the river to see if it would float. It sinkeded so I went back home and my feet were wet from the water so I took my shoes and socks off and my feet were nasty and stinky"

Number 2:
"Twinkle twinkle little star, what did you have for breakfast? Did you have a poptart? Did you have spiderman? Did you eat the whole house? Twinkle little star what did you have for breakfast?"

He is doing extremely well with his school work and memerized his landline within 5 minutes, no joking. Papa taught him his mobile # but Kaia forgets some of it still. Kaia has graduated most of his PK work and is working on K stuff. Ive had to change a lot of my plans and goals for him throughout this year because of how fast he has learned things. This is one of the great things about homeschooling. He doesnt have to be bogged down with work that is too easy on him. Instead I can work in things that suit him.... like following directions. Hes not quite learned how to do that yet but Im guessing he might be an adult before he really learns that..

Spina Bifida Clinic

2008-12-11T14:58:00.000-08:00

Alo had spina bifida clinic today.. That means we did urodynamics, vcug, ct, shunt series, ortho x-rays, then saw ortho, saw neurology, saw PT, saw rehab and saw nutrition.. I HATE these days. They are sooooo long.

But I have good news... Alos last urodynamic study his bladder maxed out at 34ccs but started leaking around 28... This time he held 120!!! That is HUGE!!! Still not what its supposed to hold but that is a huge jump.. Also he doesnt have to see neuro or Ortho for 2 years!!!!! The bad news is if his fonatel is still open then they will talk about skull reconstruction. Yikes!!

Right now his fontanel is open from his forehead going back towards his ears... Its about 3 inches wide and 6 inches long from front to back.. Its closed a lot in the past 2 years but still has a ways to go. About 2 years ago it was probably 9 inches long, 3-4 inches wide and went from near the back of the top of his head to his eyebrows and he had an open spot on his forehead between his eyebrows... so he has made progress.. and hopefully will continue to make more.

And of course still no weight gain... Holding steady at 12.8k

Bracing, etc

2008-12-05T20:26:00.000-08:00

Alo has been needing AFOs and some stretchers for quite some time now but we have never really gotten around to doing it.. Well Mr Steve from Snell Prosthetics and Orthotics came and cast Alos legs for the braces on Monday. Alo didnt seem to mind too much but gave him a few funny looks towards the end. Kaia got to pick out the colours. He wanted hot pink at first but ended up getting a truck theme with blue velcroe and multi coloured padding for the AFOs and the stretchers are going to be a sea theme with black padding and dark blue velcroe. Alo will have them in approximately 2 weeks.

Make A Wish

2008-12-05T11:23:00.000-08:00

I think I may have found the wish for him... I said before nothing like Disney World because I planned on taking him there anyway (once he was older and more "stable")... I didnt want his wish to be something that I was going to do anyway. I mean whats the fun in wishing for something that you can do any time, right? I wanted it to be something that he would never get to do otherwise and be something that he will remember... Well the remember part Im not so sure but Im pretty sure Ive found the wish.. I just have to get it approved by the wish granters and funded.

This is it: http://www.gktw.org/pre/default.asp?p=welcome

Its a park in Florida dedicated to special needs kids.

Emergency Diaper Bag, anyone?

2008-11-26T12:42:00.000-08:00

As a parent we probably all have one. I d a couple of them. Each one served its own purpose. One was for supplies that were often needed but too bulky to carry everywhere. One was for supplies that were very rarely needed And then the other was a mix of the two. Today I slimmed them all down into one.

Here is the list of whats in the bag that serves as an Emergency Diaper Bag. Some of these items are very rarely needed but very important if we were to need one and others are there as backups because we use so many of them but do not have enough room in our everyday bag.

Diaper Area
5 caths
1 tube of Surgilube
2 prefold diapers
1 set of diaper pins
1 bottle of water
5 cloth wipes

Trach and Vent
1 Trach Tie
1 4.0 Ped Shiley Trach
1 Travel Vent circuit
1 PEEP valve
3 O-rings
4 Noses
1 Vent filter

Suction
20 suction caths
1 Yaunker
1 Suction Machine filter
3 Saline bullets

Clothing and Accessories
1 Outfit per each child
1 Hairbrush
1 Blanket

Feeding
1 Sippy cup
2 packets Simply Thick
1 Feeding Extension Tube
1 Feeding Bag
1 10ml Syringe

Misc
1 CPT Bopper
1 bottle hand gel
1 Pacifier
1 thermometer
1 tube Bactroban Cream
1 tube Nystatin Cream

Alo is home!!

2008-11-20T18:00:00.000-08:00

Throw the confetti and blow the horns!! Alo got to come home yesterday with PO antibiotics. He was thrilled to get back home. He has been doing well and as long as sick people stay away *ahemhisnurseahem* then he shall continue to do fine!

Alo update..

2008-11-17T14:52:00.000-08:00

He is in the hospital but should be getting to come home within a few days. He has a few things going on, but antibiotics should take care of all of them. Please keep him in your prayers!!

Good news; Bad news

2008-11-15T17:09:00.000-08:00

First off the good news...

Aybra has had a few appts since my last update on her. She was off of all of her meds but now she is back on one of them, which is bad news but hopefully within a month she will be off of it. She is off of her monitor though. That is great news. Her last weight was 13# 9oz at the doctor. She is 22 inches. She is still only rolling from front to back but I think she might start rolling the other way soon. She smiles and laughs a lot and is starting to get interested in toys. She loves to play with her brothers. She thinks they are a lot of fun.

Kaia has just been Kaia. He is quite a happy, outgoing little boy. He is very smart, sometimes too smart for his own good. He is doing well with his glasses. He doesnt mind wearing them, but will often take them off so he can play dress up. He is doing fantastic in his school work. He can now write his name "Kaia" and the numbers 1-5. His 3 looks more like an "M" but we are working on it so I think he will have it down in no time. His speech is improving, though strangers still have a hard time understanding him. I admit some of that is my fault because I do not approve of him playing with some of the children around here in our complex so I keep him away from them. (Their parents allow them to play with toys that I do not allow Kaia to play with and they play too rough and are much too mature for Kaia.. I would rather Kaia not play "spitting on each other") So, his main source of interaction with children is from Alo (and he doesnt talk) and from my nephew. I really do not have a problem with it though. I would prefer Kaia to be more into imaginative play than the spitting, or weapon play. Children these days are forced to grow up too fast so Im just letting Kaia be a kid for as long as he can.

Alo is good and bad news. Bad news first.. He is sick. He has the trach heebie jeebies. He had an appt last week and they took a culture, but it has gotten much worse this week and tonight he started running fever so if he doesnt make improvements with that then we will have to take him to the doctor. I never talked to the doctors after the culture so Im not sure what, if anything that he grew out from last weeks culture. Im just praying that he will improve and we will not have to go to the ER. He has been doing great for almost a year. His last hospitalization was 10 months ago. This is the longest EVER that he has been out of the hospital. The good news is actually excellent news. He has been working with PT as I mentioned in prior blogs.. He started about a month and a half ago and already is making great strides. He is able to put some weight on his feet. He is tolerating his stander very well and will actually use it to support himself in a standing position without crying! He is also learning how to pull up and stand at the coffee table, though its kind of a half-stand as his arms are doing a lot of the work, but even just a few months ago I did not know if he would even be able to do that. Ive got a video of him doing it but will have to wait until later to upload it.

Alo - PT Eval (LONG)

2008-10-15T21:51:00.000-07:00

Alo had a PT eval done on the 8th of September, 2008. I got the report in the mail today.. I expected pretty much everything that it said, but I did not expect to see a few things.

Here it is the Bold parts are the different sections of the eval. The quotes are direct quotes and the rest are my comments.

History, Birth History, Medical History - A bunch of stuff here... not really relevant besides him being preemie, hospitalized numerous times and having spina bifida.

Then it goes on to state Social History... Where he lives, his nursing (or lack thereof) and some concerns and needs for him..

Standardized Testing
It explains the type of testing they used to evalutate him. (Peabody Developmental Motor Scales and the Pediatric Evaluation of Disability Inventory)

According to the PDMS He is in the 1 percentile.. I guess the good news about that is that 1% of kids his age are right there along with him.. The bad news of course is that 99% are more skilled than him. Below are the categories and raw scores for PDMS.

Reflexes - 23
Balance - 11
Nonlocomotor - 52
Locomotor - 11
Rec. and Prop. - 0

And the Basal Age Level - 6-7 months
Ceiling Age Level - 10-11 months
Age Equivalence - 7 months
Percent Delay - 82% (Hey, at least he is 18% non-delayed)

Now for the PEDI scores:

Functional skills - 15 - < 10 - NA - 37.1 - 2.4
Caregiver Assistance - 15 - 20.8 - 3.5 - 49.8 - 3.8

Clinical Findings/Observations:

Now for the fun stuff...

Range of Motion

"Aloshua demostrates deficits in PROM in his lower extremities, particularly knee extension and ankle dorsiflexion"

Why yes he does.... He holds his legs very tight.. He has very poor muscle or shall I say lack of muscle along the back of his legs making it very difficult (and painful) for him to straighten his legs out.. Due to nerve damage he is unable to point his ankles. He can flex his feet up but can not point his toes down.

"He also demonstrates decreased trunk and cervical ROM with all movements"

I'm not sure I would go that far, but I guess that is why they are the experts.

Strength

"Aloshua exhibits general decreased strength throughout his trunk, neck and extremities. He is able to perform anti-gravity movements in supine for hip and knee flexion bilaterally (with left increased over right).."

While hs isnt all that strong, he has great strength in his arms and he can kick the crap out of somebody by swinging his legs up. His arms are obviously much stronger than his legs. His neck is extremely strong considering the size of his head. The right side of his lower body was affected more from his spina bifida..

"He is able to maintain his head and trunk upright and in midline while W-sitting for several minutes"

Yeah.. That is the only way he sits. He is a pro at it.

"Formal manual muscle testing was not performed due to Aloshua's young age and inability to tolerate appropriate positioning"

Muscle Tone/Spasticity

"Aloshua demonstrates low muscle tone (hypotonia) through his trunk, neck and extremities. No resistance to rapid movement at major joints or clonus was noted at the time of this evaluation."

Again, Im surprised they say he is weak in the neck... I couldnt imagine them carrying around a head like his and having low tone...

Supine

"Typical Posture: When lying on his back, Aloshua tends to keep both hips abducted and externally rotated, and both arms abducted to each side."

Very common with preemies, though most outgrow it.. I believe this to be due to many reasons.. One being he just prefers it because it feels better.

"Other Observations: In supine, Aloshua is able to turn his head freely to either side."

A feat he reached around 15 months!

"He is also able to bring both arms/hands midline to reach a toy, and is able to cross midline with either arm/hand to reach a toy"

Another that he learned around 18-20 months. He is really good if its food he is reaching for ;)

"He is able to flex both hips and knees through partial range; however his right leg tends to pull into abduction toward the end of his available active range of motion 9AROM)."

Again.. a spina bifida thing for him

Prone

"Typical Posture: When lying on his stomach, Aloshua tends to keep both hips abducted and externally roated, and both arms abducted and slightly retracted."

Again, same reason as above.. Also I believe part of the reason for this (especially on his stomach) is that his trunk is very wide due to a few different things. His extremities are small and it is harder for him to keep his arms under himself as he should.

"He is able to turn his head left and right but tires before fully orienting."

Again... A head issue here. Its just too dang heavy to lift! All of his doctors and specialists think that once his head is more proportionate to his body that he will be able to do many more things. Right now he is just very top heavy.

"Aloshua tends to spend minimal time on his stomach, as he prefers W-sitting."

Cant argue there... He can see the world and come as close to standing as he can by W-sitting.. The therapist hates it.. but its the only way he can sit up.

"Rolling:
prone > R > supine: independently
prone > L > supine: independently"

He is pretty good at rolling. This was how he got around for many months before he figured out the crawling business.

"Transitions Floor > Sit: Aloshua requires assistance to transition to sitting as he prefers to W-sit. He maintains unsupported sitting less than one minute"

Well if they arent considering W-sitting to be "unsupported sitting" then yes, he can not sit up on his own. W-sitting is the only way he can sit up.. It gives him a wider bottom to sit on.. If he sits with his legs out in front of him we run into that head issue again. (He is like an upside down weeble.. as soon as you let it go, it tips back over)

Moves us right along to Sitting

"Typical Posture: Aloshua prefers W-sitting and is able to maintain this position independently while playing with toys and exploring his environment. He is not able to transition independently into tall kneeling from W-sitting or quadruped."

Well Im not so sure about that... While he can not tall kneel as tall as they want him to I do believe that he can transition into quadruped (of course he is froggied, but at least its quadruped)

"He currently requires assistance to transition to sitting with his legs and feet in front of him"

And if he is let go then he topples over. Sitting like this is uncomfortable for him. His legs are very tight in the back and this forces him to stretch them much more than he is comfortable with. And yet again, the head issue

"He was able to tolerate unsupported sitting for 30-45 seconds before tiring and supported sitting up to 5 minutes during testing before tiring"

He tires very easily with everything.. Mostly due to lung/airway issues.. Its the reason he is so small.

"He was able to maintain his head upright and in midline well during supported sitting He was able to track to either side, but would lose his balance with any attempts to look behind his shoulder"

At least he got part of it right...

"Transitions up from Sitting: Aloshua transitions from sitting to W-sitting or quadruped in order to creep"

Ok.. Creep, different from crawling, though I would call what he does crawling. So.. this means he DOES get into quadruped..

"He is not ambulatory nor does he attempt to pull to stand at surfaces without facilitation"

First off, he IS ambulatory.. He doesnt walk; true, but he crawls (or creep as they say) and by gosh he gets to where he needs to go... He is not ambulatory outside. Regarding the pulling to stand; I wouldnt say he did it with facilitation either.. He bears no weight and has no interest in it.

Orthotics/Adaptive Equipment/Assistice Devices

"Aloshua currently utilizes a tumbleforms feeder seat that was donated to him for supported upright sitting time."

He received this chair after much hassle with medicaid when he was younger so he could sit up. He had other chairs but they positioned him funny and he was unable to breathe. This was pre-trach.

"He has a standing frame, but has not used it."

Well, it is being used as a makeshift end table!! He does not like to use the stander.. It is uncomfortable with him, but hopefully as PT works with him more he will be able to tolerate it.

"Aloshua's mother reports he "stands" in a baby walker to eat, but requires assistance to propel the walker in order to explore his environment."

I wouldnt really say he explores his environment, but I guess we all chose different words... While sitting in his baby walker (we call it his "chair") he will attempt to put some weight onto his feet and push himself backwards while doing so. He is unable to move himself forwards.

"His mother utilizes a standard double stroller for outing to transport Aloshua and his respiratory equipment, and he uses a standard card seat for transportation"

This eval was done before he got the wheelchair but it would be nice if that fancy wheelchair we just got could be used now instead of the stroller!! The stroller is big and bulky and when loaded down with his stuff makes it very hard to get to things (like his vent if its beeping).. Re the carseat, his is currently in a Scenera which is FF or RF dependig on who is driving the car. I prefer to keep him RF for safety but thats not possible if Courtney (the Giant) is driving.

"Aloshua's mother has been given a prescription for bilateral AFO's through the spina bifida clinic at ACH; however, he had not been evaluated at Snell at the time of this evaluation."

PT will be working with Snell (the orthotic place) to get him the AFO's.. They want him to use the AFO's for weight baring activities (like the stander).

Strengths
"- loving and devoted network of family and caregivers
- very playful personality and enjoys interacting with others
- able to creep reciprocally to explore environment"

Sometimes he is a little TOO playful and doesnt want to do his work. He would rather play.. For many months during Speech Therapy he would only play peek-a-boo instead of doing his work.. Cute, but not what they want of him :) I still find it crappy that they say "creep" instead of crawl!! Does this mean we need to work on crawling still??

Concerns

"- hypotonia
- decreased strength
- decreased AROM
- dependence for transfers
- delayed mobility skills"

I think he quite likes to be carried around.. Like today the little bugger wanted me to carry him ALL.DAY.LONG! .... And he has great strength.. Just piss him off or try to suction him when he is mad.. He will demonstrate it then.

Lastly it says the Informed Clinical Opinion and Recommendations which basically say that Alo is delayed and needs therapy and the therapist thinks that Alo would benefit from therapy.

And the Physical Therapy Goals

Im not going to list them all but pretty much things to try and get him to a 10-11 month level... Bearing weight on his feet, sitting, quadrupred, tolerating activities, and lifting his head more while prone

Wheelchair pics + other pics..

2008-10-10T22:59:00.000-07:00

Somebody was wondering why they could not just add a vent tray to this wheelchair.. Long story short..When they ordered the wheelchair they "forgot" that he was vent dependant and needed a vent tray.. Because they did not think about this (even though it was in his dang chart) they ordered the smallest chair they had. The chair they ordered for him is not big enough to hold a vent tray. The vent would make it tip over (Because the vent is heavy as heck). Once Alo outgrows this chair he can get another one with a vent tray but chances are he wont need it then. He needs it NOW and that was the whole point of getting the dang chair!!!

Anyway, we cruised around the compound earlier and crossed the street to a little trail. Alo loved it. He was just smiling the entire time.

Then later this evening Kaia came home, put his Power Rangers costume on and we went outside to play. I took the little kids out with me, Alo in his chair, and we went on another walk. Its such a big difference pushing this than the stroller. With the stroller it took a lot of effort for it to start moving forward.. This chair you barely have to push and it starts moving.

Alas, here are pics of the first walk.. They didnt turn out too great.

Going for a walk outside:

And again: (He was looking at the elevator because the door opened)

And inside:

And I dug these pants out of some stuff that was put up. They are a size 12 months but fit Alo perfect. His pants that fit in the legs are too small in the butt and the ones that fit in the butt are too long in the legs. I was surprised that these fit him in the butt and legs.

About that wheelchair...

2008-10-10T14:09:00.000-07:00

Here in Arkansas kids have to be 2 years old in order to qualify on Medicaid for a wheelchair.. It doesnt matter what conditions they have or what medical equipment they have, they must be 2 years old.. We knew this so we started filling out the information in Dec of 2006 knowing that it would be a few months for them to do everything. Alo wouldnt turn 2 until May of 2007 but by having the paperwork in early we would be able to get the chair sooner, because it takes a few months to custom make it.. So... they get the paperwork and deny it.. We knew they would do that becase he wasnt old enough.. So the moment he turned 2 we reapplied.. At this time we also tried to get a stander for him..

For those that dont know Alo has spina bifida and can not bear weight on his legs. The stander was to help him get into a standing position and get him to start putting some weight on his legs.. He has movement in his legs but his legs are very weak and the muscles along the backs of his legs do not work.. When he moves his legs it is because he is working the thigh muscle. Anyway.. The stander was for him to build up strength in his legs in hopes that it will help them get stronger and eventually walk. Alas.. When we applied for the stander and the wheelchair at once they denied both of them saying that if he needs a stander he does not need a wheelchair as well... I guess they expect him to stand up all day long in a stander. What about when we were out and about?? We couldnt take a stander there. We needed the wheelchair to take him places. The stander cant do that stuff.. Anyway.. They got all of that sorted and the stander was approved but the wheelchair was denied.. The reason this time was that he did not weigh enough and that I should be able to carry him where he needs to go.. Are you serious? What about his vent, vent battery, trach go bag, suction machine, oxygen, diaper bag, my purse, and my other kids?? Carrying him was not the problem.. the problem was carrying everything that went with him. So... they get all of this sorted and FINALLY getting somewhere. The plan was to order the wheelchair with a vent tray to hold all of his stuff.. I got the call yesterday that his wheelchair was going to be delivered today. WOOHOOO!!!!!

They came out today to deliver it. WOOHOO!!!! Its the cutest chair ever. Its soft, and comfortable for him, but no vent tray!!!! They have a battery tray for the vent battery but no tray for the vent itselt.. Anybody who has ever lifted an LP10 vent knows how heavy it is.. The vent alone is like 30#.. The vent battery is at least 15#. It is literally the size and weight of a car battery (and those things arent light).. So now, we have a wheelchair but no way to carry Alos stuff on it..

While I am teeved about this at least it is now instead of when he was on the vent all day long. Now, we can go out and not have to have the vent with us, but just a few months ago we had to carry the vent everysingle place we would go. He was sprinting before but not enough so that we could leave the vent in the car. He is pretty much only on the vent at night now but he still has days where he needs to be on it during the day. I just hope one of those days does not come when he is in the wheelchair. I guess we will continue to lug around the double stroller until we are certain that he will not need the vent during the day.

Anyway the whole point of getting the wheelchair was to be able to carry his stuff easier... I guess that just isnt going to happen now.. Im going to go take him for a walk around the block and test it out to see how he does in it.. Ill post pictures and stuff later.

Kaias New Glasses

2008-10-10T12:46:00.000-07:00

29 weeker no known history of ROP (Eyes were never checked in NICU)

-250 in the left Eye
-185 in the right Eye
Astigmatism in both..

And cute as ever in his new glasses:

You better believe it!!

2008-10-09T12:33:00.000-07:00

I got the call this morning that.. (Are you ready).. Alos wheelchair came in!!! FINALLY!!!! After 2 years of waiting!!! They are going to deliver it tomorrow and as long as everything is ok we will get it tomorrow but if it needs adjusted then we will have to wait longer.. Im so excited for him.. Its going to be great not having to worry about his giant stroller... but at the same time I dont want everything that comes along with a "wheelchair".. I kind of like the stroller and how it makes him seem like a normal kid..

Free Newborn Diaper Lotto

2008-10-06T15:07:00.000-07:00

For more information on the lotto go to Life as a Convert.

I will let this lotto run for 10 days. The deadline to enter will be Thursday the 16th of October at midnight CST. On the 17th of October I will randomly select a winner. The winner will be announced on Life as a Convert as well as contacted for further information!

RSV and Synagis Ingredients

2008-10-04T21:58:00.000-07:00

What is RSV?

Respiratory syncytial virus (sin-SISH-shul VI-rus) (RSV) is a very common virus. Usually, RSV causes mild cold-like symptoms, such as a runny nose and fever, in adults and children. But premature babies or those with lung or heart problems have a high risk of getting very sick if they catch RSV. This is because premature babies do not have fully developed lungs. Also, because they were born early, they may not have received enough virus-fighting substances from their mothers that help them fight off RSV and other viruses.

Each year, an estimated 125,000 babies in the United States are hospitalized with severe RSV infections.1,2 In some cases severe RSV infections cause up to 500 childhood deaths annually. RSV may also be associated with more long-term health problems, such as asthma.3

RSV season usually starts in the fall and runs through the spring. But it can vary in different areas of the United States. Ask your child’s healthcare provider when RSV season occurs in your area.

Symptoms of an RSV Infection
Usually, RSV causes mild, cold-like symptoms, such as a runny nose and fever. However, in some babies, the symptoms can quickly get worse.

Call your healthcare provider if your baby has these symptoms:

Persistent coughing
Wheezing (a whistling sound when breathing)
Rapid breathing
Problems breathing or gasping for breath

Be sure to ask your doctor about getting the synagis shot for your little one(s). For more information on the synagis shot please click here

What are the ingredients in Synagis?

Synagis, also known as Palivizumab, is an immunoblogulin commonly given to preemies and high risk children during RSV season (Fall to early Spring depending on where you are located). Synagis DOES NOT PREVENT RSV!!!! Many parents assume that these shots will prevent RSV but they are mistaken. The shot only helps to lessen the severity of RSV if the child were to get it. The ingredients in Synagis (Palivizumab):

Medicinal
- Palivizumab

Non-Medicinal
- Glycine
- Histidine
- Mannitol

Palivizumab is the active ingredient.

Glycine is an amino acid. It is not an essential amino acid. It is often used as a sweetener, neurotransmitter or dietary supplement. Glycine is used in Synagis as a stabilizer.

Histidine is an amino acid found in foods high in protein. Histidine is converted into histamine by the body. Histidine, is thought to be a detoxifier, removes heavy metals from the body, produces gastric juices, helps protect the body against damage caused by radiation, and helps the body to know when an allergic reaction is happening (by the histamine). Histidine is available as a supplement. It is used in Snyagis as a stabilizer.

Mannitol is another sweetener. It is poorly absorbed by the body so many junk food companies like to use this. Mannitol is also a diuretic. It is sometimes used for patients with brain injuries. Mannitol is used in Synagis as a stabilizer.

Each 100 mg single-dose vial of Synagis liquid solution contains 100 mg of Synagis, 3.9 mg of histidine, 0.1 mg of glycine, and 0.5 mg of chloride in a volume of 1 mL.

Each 50 mg single-dose vial of Synagis liquid solution contains 50 mg of Synagis, 1.9 mg of histidine, 0.06 mg of glycine, and 0.2 mg of chloride in a volume of 0.5 mL

Synagis is latex free and is available in a powder or liquid form and is made by Abbot Laboratories.

Through the ups and the downs..

2008-10-04T20:43:00.000-07:00

WE CAN PLAY BASEBALL!!!!

Alo may be small compared to his peers, he might not be able to reach things as well as the others, he might not be able to run, but he can still play baseball (tee ball, whatever) *Videos at the bottom*

And two videos:

Alo hitting the ball

Kaia hitting the ball

Happy 1/2 Birthday!!!

2008-10-01T23:02:00.000-07:00

Wow wow wow!!!! How in the world did this happen?? My baby is 6 months old!!!

We made sure to have a small "party" with cake in her honour.. She slept through the cake but if its anything like bananas and breastmilk then I am sure she enjoyed it later.

Some recent pics of Aybra and the boys to celebrate.

Sitting pretty in her dress

Her and the boys

Kaia trying to get her to smile for the camera... One of these days I will catch a smile on camera

Shout-out to my "Homie"

2008-09-27T22:15:00.000-07:00

ip98-163-122-26.dc.dc.cox.net - 28.09.2008 - 01:50:47

GET OVER IT!!!

2008-09-22T11:11:00.000-07:00

Why waste your time posting comments that I will not approve. GET OVER YOURSELF!!! MOVE ON!!!! STALK SOME OTHER PERSONS BLOG!!!!!!

Pictures...

2008-09-20T15:14:00.000-07:00

Cheese!

I love you this much

Pouting

Alo getting a treatment playing a game

Alo taking the dolls pulseox

Aybra...

2008-09-20T12:41:00.000-07:00

Well Ive been meaning to post this for a while now but I wanted to do the 100th Post post first...

Aybra had an eye appt about 2 weeks ago and her diagnosis is now ROP - Resolved!! Woohoo!!!!!!! She still has to have some follow-ups for other stuff (Strabismus, etc) but she is pretty much in the clear. Her next Appt is in Octber. Her RT came and downloaded her monitor the other day and is going to talk to the clinic before her Appt to see if we can get rid of the monitor...

Pulmonary schulmonary

2008-09-17T22:02:00.000-07:00

Alo had a visit with Pulmonary today.. They are worried about his lungs and heart. He is working too hard to breathe and needs to be put on the vent more so he can start doing better. He still has a lot of growing to do. More tests and more visits... Though his oxygen requirements have been great. He is able to come off more now as he tolerates it and he has been tolerating it really well as of late. They increased his feeds again to hopefully help with the weight gain. He was getting 30cal per ounce. They upped it by 5 cal.

Another day in the life of Alo....

100th post!

2008-09-16T19:00:00.000-07:00

Bring out the confetti and cake; this is my 100th post on this blog...

Since starting this blog so many things have happened.. In celebration of the 100th post I will post 100 things that happened this past year.

1. Aybra was born.
2. Kaia started a second year of Pre-K.
3. It has been 5 months since Alo's last hospital stay.
4. Alo turned 3!
5. And even worse Kaia turned 4!! My babies are growing up.
6. Kaia officially potty learned (though he has been having some accidents lately).
7. I am back down to pre-Alo-pregnancy weight!
8. I got a new van.
9. I renewed/restored my faith in Jesus Christ.
10. Going with #9 I met some lovely Church people.
11. I met and lost a person I love.
12. I have become more modest.
13. I met some awesome mamas on Preg.org and MDC through Aybras DDCs
14. I saved roughly $50.00 a month by Cloth Diapering.
15. And I helped convert a new mama to cloth.
16. I dealt with some horrible nurses/doctors and reinforced my belief that hospitals suck.
17. I learned (again) that Mothers and Parents truly do know what is best for their children.
18. I learned to fight hard for your children because nobody else will.
19. Kaia learned how to type his name
20. Kaia then learned how to write his name.
21. I got rid of some of Alos problem nurses..
22. But ended up gaining more.
23. I learned more truths than I care to know about vaxes
24. I reinstalled Diablo and got a Sorceress to level 50
25. Then Kaia deleted it!!!!!!!
26. Alo made improvements with his therapies.
27. Alo FINALLY had a PT eval.
28. Alo got a stander.
29. And SHOULD be getting his wheelchair sometimes this year.
30. I have learned to embraces Alo's "problems" (I hate that word)
31. Alo learned how to throw some massive tantrums.
32. Ive gained more patience (It helps with the tantrums)
33. I found some old friends and caught up..
34. and learned that some old friends passed away.
35. I learned how hard it is not to take things for granted.
36. I have cherished my children even more than before.
37. I realized that some people who have things so great do not appreciate it.
38. I learned that children will do things in their own time.
39. Aybra learned to smile.
40. She can also roll.
41. She overcame many NICU difficulties and is so far doing better than Kaia did as a baby
42. Kaia learned more about his father
43. Kaia seems to think that his father lives everywhere besides with Heavenly Father.
44. Kaia learned how to pray to Heavenly Father..
45. and thank for him the trees, and the houses and the floors and the doors and the carpets and the roads and the bridges and the water and his Baby Sissy and Bubby and Baby Hayden.
46. Aybra got a swing!!
47. I overcame my own supply isues...
48. Then I donated some precious breastmilk and helped a few babies and mamas.
49. I pissed a few people off with my hardcore Breast is Best beliefs..
50. I missed out on the birth of my dreams..
51. I had the worst c-section ever!
52. I started a new blog.
53. I started some new traditions with my family.
54. I ventured out more with Alo (This is a HUGE thing)
55. I watched a few good movies.
56. I started my 72 hour kits
57. and sadly had to use some stuff out of them from the lovely Hurricane Ike
58. I also started my 1 Year Food Storage
59. I created human life!
60. I completed more Kaplan terms
61. I educated people on the importance of NOT circumcising.
62. I got Baptised.. That is kind of important
63. I took a lot of pictures of the kids.
64. Alo adjusted well to having a new "Baby Sissy"
65. Kaia became Mr Mum.
66. Kaia learned how rain works (every.time.it.rained)
67. I got my very first sewing machine. I dont know how to use it still, but I have it :)
68. I gave many things to charity.
69. I got brave enough to walk the trail by our house.
70. Alo wore shoes... He would never wear shoes before but now he has one pair that he wears. (SID issues)
71. Ive been blessed to have a great nursing6 r7ue8il9aot0pionship.
72. Aybra has become one heck of a champion breastfeeder.
73. I was able to shop for baby girl clothes!!!!
74. Alo started eating more fo5768o9ds by mouth.
75. Kaia started learning about different foods.
76. Kaia took an interest in video games (Bah!)
77. Alo took an interest in watching Kaia play games.
78. Kaia figured out how to work a computer..
79. And beat the mouse on the desk in frustration when "it ain't working"
80. Alo got his very own fridge.
81. Kaia learned how to say "Aloshua" and has become very proud of it. (A-yash-a-wah)
82. Ringworms.. Need I say more.
83. We went to the zoo..
84. Kaia played many racing games with Unc Ney (as in Uncle Courtney)
85. I saw some good people turn bad and some bad people turn good.
86. I learned things about my friends I never knew.
87. I re-found Aloshua the older...
88. I baked my butt off.
89. And in the process found a great new bread recipe.
90. I reflected on (and experienced) some of the best moments in parenting.
91.Alo became interested in the computer.
92. I counted my blessings that, while I have had some bad boyfriends in my past I never had any like Heidi had, namelySpencer from The Hills
93. Oh yes.. The Hills addiction grew stronger.. Who doesn't love The Hills??
94. My PISA gave out on me
95. I righted some wrongs.. Some really really wrongs.
96. And Im sure I made some wrongs even wronger (oh yes it's a word baby!)
97. I talked on the phone like a teenager.
98. Kaia broke my laptop and gave my computer viruses..
99. I opened many new doors in my life and closed out a few chapters.
100. I actually made it to 100!!!

2 month Corrected Pics + some others

2008-09-03T20:18:00.000-07:00

First the 2 month correcteds... Pics are clickable

And it leaves much to be desired but its a start

Time flies!

2008-09-03T19:30:00.000-07:00

Today Aybra is 2 months corrected.. Where has the time gone!!!

I havent taken her pictures yet but I will get some tonight and post them later..

She is growing like a weed.. Like a whole army of weeds! She is near 10# now. I weighed her the other day. I forget the exact g/kg but it was 9# 9oz... She is eating so much though so its no wonder she is getting so big Im having to pump a ton to keep up with her and Alo. She is nearly taking as much as he is!! She is getting stronger everyday. She will push up with her hands whilst on her stomach and look around. She can roll over from her belly to her back (then gets mad because she cant get back over). She is smiling more everyday and beginning to make some little sounds.

Speaking of Alo he has been doing great... No real problems.. He has been his typical self doing things he shouldnt then smiling and being cute so he doesnt get into trouble... He has been going to nursery at church and he loves it. They play and sing songs and colour. He has a blast. He isnt going to be going much longer though because RSV season is coming up.. Dreaded dreaded RSV season.. Im not even sure that I will take him to church (or any of the kids because of the risk to him)... But we will see...

Kaia has been Kaia. He is loving school (and Alo loves helping him).. He has been having some issues with his eyes and head though. I have to get that checked out. His speech is getting much better but its near time for him to have another eval to see if he can get some services.

Free Diaper and Shirt Lotto

2008-08-22T20:30:00.000-07:00

This set is being lotto'd off over on Life As A Convert

Comments...

2008-08-22T19:35:00.000-07:00

I have taken the "Registered" restriction off of the comments. Now anybody can post a comment (even anonymous). Comments are still being moderated though.. Just a heads up.

Its Official...

2008-08-19T19:50:00.000-07:00

At least I guess.. I mean if the announcement makes it official or anything then it is.. Otherwise.. AYBRA WAS BORN A LONG TIME AGO!!! (Picture is clickable to see larger version)

Blog Changes...UPDATE

2008-08-18T20:36:00.000-07:00

Im changing the layout of the blog and need to resize all of my pics so they are fully visible.. Might take some time but wanted to give a heads up.

***Update***

Well Instead of resizing all of the pictures (because then you cant see them) I decided to just resize the link.. All pictures (at least the most current ones) are clickable to see the bigger picture. Ill put reminders on the posts.

The Little Kids

2008-08-15T19:36:00.000-07:00

Aybra was wearing her bib correctly but after a few swings of the hand this is how she ended up wearing it

Alo with one of his favourite games (He also likes Candy Land, and Operation... He likes to carry the cards around)

)

Remember this doll? .. Well here is a more recent shot with it:

And this is how she got that way!

Weigh to Grow Aybra!!!

2008-08-15T13:00:00.000-07:00

3870 grams
3.8 kg
8# 8oz

More Pictures

2008-08-13T15:15:00.001-07:00

Aybra in a skirty

Sleeping

Alo and Aybra.. Alo trying to pick her up and her giving him a "WTF" look.

Alo gets on these kicks where he carries things around... Flash Cards, memory cards, and the latest CDs.

Aybra yesterday.. Such a big girl!

How could I forget this one?!?! Aybra was having some tummy time and kicking her feet and swining her hands around.. Her hands happened upon this candy bracelet that Alo made so she grabbed onto it and into her mouth it went. She was sucking on it. It was so cute but so nasty. But, what does any good mother do? Take a picture before taking it away of course :)

And the best one for last

Aybra vs Alo

2008-08-13T15:09:00.000-07:00

This requires a post all its own..

Alo at 10 months old, or 7 months corrected.

And Aybra at 4 months old, or one month corrected in the same pillow...

Picture overload...

2008-08-03T20:19:00.000-07:00

Just a lot of random pictures from lately.

Aybra is like a freaking weed! I bought a scale for postal stuff and I use it to weigh her and she is averaging 200 grams per week. She is getting close to 8# now. She had an appt on Friday and it went extremely well. A few changes but nothing too drastic.

She had her first zoo trip yesterday. It was hot but she did well.

Kaia said Im going to run really fast and you take my picture.. This is what I got

Playing pacman

Alo wanting to play pacman

Taking a bath.. She loved it. She sat in there for a while just kicking her feet around

Baby Shower Gifts.. POAB

2008-07-22T20:56:00.000-07:00

Here are the promised pics of the Baby Shower gifts. The women who came were so kind to Aybra.

And some pics of the boys

Kaia learning how to do a back walkover

Alo asleep on his new "bed"

And an Aybra fluffy booty pic (Alpha Omega One Size Diaper)

Aybra is now 3180 grams (roughly 6# 15oz) and still transitioning to the breast. She is taking most of her feeds by the breast but still taking some fortified (with skimmed breastmilk) bottles. Aybra had an appt today but we had transportation issues so I had to cancel it.

I never gave an Alo update (that I remember) but at his most recent appt he was taken off of two of his meds (CELEBRATE!!) and was given the go ahead to sprint during his naps. He was pretty much doing that anyway. Here is to hoping that he will gain lots of weight and be able to sprint more.

Kaia is just typical Kaia. His birthday is this Friday. He will be 4! It is so hard to imagine him being 4. Im hoping to get together with some kids from the ward and let him play with them and get to know them better. He played with one the other day and had a blast.

Aybra update...

2008-07-21T16:46:00.000-07:00

She is still doing well at home. She is learning how to nurse better so Im hopeful that I can do away with all of the bottles soon. Im going to weigh her again today to see how much she weighs.

Last Sunday Aybra got introduced to the ward and then this Saturday was a baby shower for her from some ladies at the ward.

Is there a baby in there?

2008-07-15T18:11:00.001-07:00

Today I had to go to my apartment office to get a package and I had Aybra in a ring sling... I had the tail (as I always do) draped over her so none of her was showing (and so nosey people cant try to touch her).... Anyway the woman that was giving me my package said "I just have to ask, but is there a baby in there?" I dont know how but I almost forgot that Aybra was even in there.. She is just so light. It took me a minute to figure out what the lady was talking about. I told her Yes. She commented on how great that "thing" was and that Aybra was so tiny. She asked how old she was.. You know how people are with babies.. They want to know everything. I told her that she is almost 4 months. You know what comes next.. She is so tiny... Which leads into the She was early conversation... Then on the way out the woman said well you look great to have only had her 4 months ago... I told her Thanks.. She was joking that her kid was 6 years old and was pointing to her stomach... On the way back home I was thinking well no ****.. She was only 1#. Its not like my stomach was sticking out to Egypt! So.. It made me wonder... People have made that comment a lot, after Kaia and now after her (I was fat after Alo).... Did any of you ever get those kinds of comments? I would much rather have the "Wow youre fat" comment and have a healthy baby than to have a "great body" with a tiny baby. I guess these people dont realize that when a baby is a few months early that they are really small and that the mama doesnt show very much... I mean this woman saw at almost 4 months how small Aybra is.. I just wonder how big she thought she was when she was born.

BTW.. The package was a postal scale I ordered for shipping and to weigh Aybra :) I weighed her today butt naked and she was 2953 or 6# 7oz... Ive been BFing her as much as I can and I was thinking that she was losing some weight but Im not sure. (If she is Im pretty sure its because she is getting mostly foremilk) Anyway, this is the starting weight Im using and Im trying to weigh her before and after every BF session to see how much she is taking in. Im not using formula to fortify her milk. Ive been skimming like 15 ounces per day of my milk and using that in her bottles. Now that she is taking more breast Ill have to use the make-shift SNS to give her some of the skimmed stuff.

Aybra pictures!

2008-07-14T15:21:00.000-07:00

Comment Moderation... The drama continues...

2008-07-14T14:54:00.000-07:00

That "Cheryl AKA Kimberely Van Buren" person NEVER goes away... I try to turn Anon comments off so she goes to another blog... turn them off there and then she comes back here with a registered name.. Seriously.. SHE HAS ISSUES!!!

She claims I called her materialistic because I told a group of people that anybody who wanted to be a SAHM could be, they just had to budget their income better and get rid of unnecessary things.. Because she was unwilling to get rid of some of these things (like cell phone, high speed internet, etc) she claims that I called her materialistic.. The conversation went something like this:

Person A: Posted a message saying they were feeling guilty because they were going back to work and were putting their kid in daycare..
My response: Is there anyway you can be a SAHM and readjust the budget?
This lovely comment person: You (talking about me) are making her feel guilty by asking that..
Me: There is always a way.. You just have to be willing. Some people dont even try and claim that there is no way.. If they would try they would see that there is a way.. Its all about budgeting and getting rid of things that are not need (like high speed internet, extra phone and cable features, extra car notes, etc)
The comment person: Blah blah there is no way for me because I spend $400 a month in gas so I can go to all kinds of places and Im not giving that up....

She goes on to say that since I stay at home with the boys that I am lazy.. Yeah right.. Let me see her take care of Alo, let alone Alo and Kaia!! I do not stay at home so I can be "lazy". I stay at home so that my children (especially Alo) will live.. Live as in not die. No daycares will take Alo because of his condition. Its not like I could just throw him into any daycare and go get a job. If I did that he would die. He HAS TO HAVE trained people to take care of him.

So now.. She somehow finds my blog and instead of ignoring it she brings up some old drama that didnt even happen on this blog.. It happened on a yahoo group.. Can she not just get over it?? Does she really have nothing better to do than to come and bring unwanted drama here???

So, anyway comments are on moderation until this idiot goes away. Mind you, this person is 20 years older than me yet acting 20 younger...

Since Im so mean....

2008-07-06T17:01:00.000-07:00

To those who leave the anonymous mean comments.. I really couldnt care less that you think I am a "mean" spirited person... You dont like me, then dont read my blog! You go through what Ive been through and try not to complain a few times.. And actually I dont think 4 or so complaining posts out of 70 is bad. If you want me to care about your comments then perhaps you should sign them with your name instead of anonymous!

*****
Follow-up....

And they keep coming back! Seriously.. Have you nothing better to do than come and leave nasty comments on my blogs?? GET A LIFE!!

P.S. I turned Anonymous comments off. I dont need to read any more crap from people like that.

Back to your regularly scheduled blogging

******

Another update!
It never ends!

I turn anon comments off on this blog so they go to my other blog. I have a very good feeling about who this person is because the crap they are posting they have posted at another place.

"Since I cannot leave comments on your other site. I will leave them here. You are religious? Please....How come someone is nasty if they point out something a person is doing wrong? I am concerned for your children. I think your children see all the confrontation that you give out. You make confrontation over cloth diapers! OMG! I do have experience with preemies. I have one. What does that other person think I am doing on a preemie site?!!! You are judgemental. I have experience with you before and happened to stumble upon your blog. You keep having preemies over and over. How many do you need? How many times are you going to put your children through health problems? A Jehovah, well that does explain a lot. Remember God does not care what religion you are as long as you believe and worship him. Doesn't Jehovah believe in the sanctity of marriage by the way? I had a friend in high school who was a Jehovah and it was a sin just to hold hands out of wedlock and you are making children. You judge others but cannot handle it when someone points out something you are doing incorrectly with your children. Hypocrite! I am sure you with get people to back you up. That is what the weak do. They cannot stand up for themselves without back up. There will always be someone there that will support someone who is sining. The world is full of you!"

Lots of pictures

2008-07-01T14:33:00.000-07:00

Her last weight was 2690

Woohoo Im in the final step-down

Nanny feeding Aybra

So pretty in my dress

Doing my carseat test

Silly baby

Playing with the silly baby

My going home outfit

And again

Going out the door

In the car

Closer look

On my way home

Getting out of car

Home at last!!!!! 92 days and I didnt even get a t-shirt!

And some fluff

6.27.08-2

2008-06-27T18:23:00.000-07:00

Just a lot of random pictures from recently..

Kaia feeding Aybra (She ate sooooooo good that night.. I said Im going to start taking him to feed her if she does that good with him)

Alo wanting the camera

Cheese Mummy!

Kaia growling at me

Alo passed out under the coffee table

Aybra doing non-nutritive breastfeeding for the first time

6.27.08

2008-06-27T15:05:00.001-07:00

Well today I talked to a good nurse.. One that is on my team and trying to get her home within a few days.. Yes DAYS!!! I will only believe it when I see it though.. She told me I had to call the supply company.. Hmm Normally they do that stuff.. So I called (mind you the supply company that Im going to be using had literally JUST left my house from switching out Alos ventilator).. Anyway the supply company said that the hospital had to call them which is what I figured.. So I called the hospital back and told them that they had to call.. So they were going to fax over the information and we are waiting on the prescription from the doc for the monitor.. Then the supply company has to come out (Maybe Monday) and do the "teaching" on the monitor. After that the hospital makes me to room in (thought it isnt mandatory)... They just want to make sure that I can handle the monitor.. so instead of rooming in I can just go up there and spend the day which is much better than rooming in.. Then she will have to do the carseat test on her monitor and after that she should be ready to come home. Even though the nurse said a few days Im still thinking it will be longer because obviously the doctor has the make the choices and they like to make her out as being sicker than what she is.

6.26.08

2008-06-26T22:28:00.000-07:00

I had the nurses write a note last week that I wanted to speak with the Eye doctor. I wanted to discuss what he saw on the exam as well as some other things. Well the eye doctor did another exam this week (said her eyes were looking better) and supposedly said that they will not talk to the parents unless surgery is required.. What??? You mean to tell me that a doctor that is doing tests on exams on MY child does not want to talk to me unless she needs surgery? What the hell kind of practice is that?? Ive never heard of a doctor say something like that before... So instead of the eye doc calling me they had the neo call.... He said "Blah blah blah the eye doctor looked at her eyes blah blah blah...." He didnt tell me anything I didnt already know. I wanted to ask the eye doctor questions.. NOT the neo! The neo would have no freaking clue what I was talking about anyway.

BUT!

I asked again about breastfeeding and the neo seems to think that breastfeeding is not a good idea right now (whatever) so I asked about non-nutritive nursing... He started back on the "no breastfeeding right now rant".. Alas, I won the battle. I can do non nutritive nursing now... That is the good news. The bad news is that I cant really do it. I mean I can but its hard because she has to be awake and she is always asleep. The only time she is awake is when it is her feeding time, which BTW she has been PO feeding all of her feeds lately (besides one where I asked if they could NG her so I could do some non-nutritive). Within the past 48 hours I think she has only NG'd one feed maybe two.

And another battle won! They are now using cloth diapers! Woohoo!!! Their stupid "We have to weigh the diapers" and "Its a health violation" excuses ran out.

I have some pictures of when I tried some CDs on her, but none from when she actually started wearing them (tonight) but I did leave one of the CDs on her the other night when I left. (I truly think this is what helped me win the CD battle... They saw that its super easy).

I have other pictures but they will have to wait until later... I have to put them on photobucket.

And here are some other pictures that I thought I had posted but obviously didnt..

P.S. Sorry about the serious slacking lately.. Everybody was sick this past week and the week before was midterms!! Busy busy.

Toys boys and their babies... Alo only gets to hold the baby doll. He doesnt like to even touch Aybra.. (And he swings the baby doll around by its legs and arms)

6.25.08

2008-06-25T15:35:00.000-07:00

It has been a while since I have updated but I had some good news and didnt want to risk jinxing myself (or Aybra) by prematurely posting it.

She is much closer to coming home, but still a few weeks ago. On Saturday she was taken off of the nasal cannula and as of today she is still off and doing well. She is having desats but she is brining them up on her own. The majority of her desats are with her feeds.

The feeding is going well. She was increased today to 48ml. She is on 100% breastmilk fortified with the stupid human milk fortifier. She is tolerating it very well. She is PO feeding almost all of her bottles now. Today she had PO fed all of her feeds so far. That is really good news! In a few more days she should be moved from the unit she is in now to another unit that is the final step before going home.

They keep telling me that I will have to room in with her but Im going to do everything I can to NOT room in with her.. I just find it ridiculous. I mean, I have a child on a ventilator at home.. I think I can handle a baby with just a monitor ;) Its not like I havent had a preemie before, let alone a preemie that is and was much sicker than she is or has been.

I do have some pictures but I need to transfer them first.

Common NICU Terms

2008-06-20T21:19:00.000-07:00

Ok Im just copying and pasting this list from the Preemie Chatter website Some of the terms of abbreviations used on this blog are not listed below so when I come across one I will add it to the list below.

* Anemia: Low level of red blood cells.
* Apnea: A prolonged pause in breathing. This is a common problem in premature infants and may require monitoring or medication.
* Aspiration: Inhaling a foreign substance into the lungs, such as formula or amniotic fluid.
* Bagging: Pumping air into the baby's lungs using a rubber bag. This is a temporary measure to help a baby who needs help breathing.
* Bilirubin: A yellow-pigmented waste product that forms when the body naturally eliminates old red blood cells. It may make the skin and eyes look yellow.
* Blood gas: Blood test used to monitor the level of oxygen and carbon dioxide in the blood.
* Blood transfusion: Procedure in which a small amount of blood is given slowly through a vein.
* Bradycardia (Brady): A slowing of the baby's heart rate.
* Care center/radiant warmer: An open bed with an overhead warmer used to maintain baby's body temperature.
* CAT scan: Special x-ray examination.
* Chronic lung disease (CLD): Previously known as bronchopulmonary dysplasia (BPD), this is chronic changes in the baby's lungs.
* Continuous positive airway pressure (CPAP): Maintaining low pressure in the airways to keep the lungs expanded.
* Cyanosis: Blueness of the skin as a result of decreased oxygen levels.
* Echocardiogram: Special ultrasound that enables the cardiologist to get a picture of the heart.
* EEG: A test to record the electrical activity of the brain.
* EKG/ECG: A test to record the electrical activity of the heart.
* Endotracheal tube (ET tube): A tube that passes through either the baby's mouth or nose into the windpipe (trachea) to allow oxygen into the lungs.
* Fontanel: Soft spots in the baby's head where the skull bones have not yet joined together.
* Gavage feedings (tube feedings): Providing nutrition through a plastic tube passed through the baby's mouth or nose and into the stomach.
* Gram: A unit of weight (i.e. 28 grams = one ounce; 454 grams = one pound).
* Hearing screening: Method to screen for hearing or hearing loss.
* Heel stick: A blood sample obtained by pricking the baby's heel.
* Hypoxia: A low level of oxygen in the baby's blood.
* Intravenous (IV) therapy: Nutrition or medication given through a vein.
* Intraventrivular Hemmorage (IVH): Another term for Brain bleed, Grades are I-IV with IV being the first
* Isolette: A type of enclosed bed for an infant who is not mature or well enough to maintain her body temperature in an open crib.
* Jaundice: A yellow skin color that develops in most premature babies and in some full-term babies.
* Kangaroo care: Skin-to-skin care where the baby is placed on the bare chest of the mother or father.
* Meconium: Dark-green material found in the baby's intestines. It's the first bowel movement after birth; it's occasionally passed while the baby is still inside the mother.
* Murmur: An extra sound heard in the chest that results from abnormal blood flow patterns. It may be due to structural heart lesions, though most have no significance.
* Nasal cannula: Small prongs placed in the baby's nose that delivers oxygen.
* NPO: Latin abbreviation for "nothing by mouth." If the baby is kept NPO, all feedings will be give intravenously.
* Oxygen: Part of the air we breathe. Ordinary room air contains about 21 percent oxygen. Sick or premature infants often need extra oxygen, sometimes even 100 percent pure oxygen.
* Oxyhood: A clear plastic box that's placed over the baby's head to provide additional oxygen and moisture.
* Peripherally inserted central catheter (PICC line): Special intravenous (IV) catheter used when IV therapy or antibiotics are administered for a long period of time.
* Phototherapy: Treatment of jaundice using ultraviolet lights. The baby's eyes must remain covered for protection.
* Pneumonia: An inflammation of the lungs. In newborns, this is most commonly due to infection or aspiration.
* Pulse oximeter: A machine that measures how well the blood is being oxygenated.
* Reflux: A backward flow of stomach contents, generally referring to a type of vomiting, spitting up or regurgitation common in premature infants.
* Respiratory distress syndrome (RDS): Lung disease that is caused by lack of surfactant (lubricant in the lungs) and is a common cause of breathing difficulty in premature babies.
* Retinopathy of prematurity (ROP): A condition that develops in the eyes of some premature babies where the retina buckles and pulls away from the eyeball.
* Seizure: A brief period of increased electrical activity in the brain. The baby's body may tense up and she may lose consciousness for a few moments.
* Sepsis: An infection somewhere in the baby's body.
* Small for gestational age (SGA): A baby who is small at birth because of poor growth in the womb.
* Spinal tap/lumbar puncture: A procedure in which a needle is inserted into the lower spine to obtain spinal fluid.
* Suctioning: The process of removing secretions from the baby's nose, mouth or lungs by using either a bulb syringe or suction catheter.
* Surfactant: A lubricant that lines the small air-filled sacs in the lungs and keeps the lungs from sticking together.
* Tachycardia: A fast heart rate.
* Tachypnea: A fast breathing rate.
* Tremors: Shaking or trembling of the face or limbs.
* Ultrasound: A diagnostic test that uses sound waves to look at the structure of internal organs.
* Umbilical catheter: Catheter inserted into the baby's umbilical cord that is used to either draw blood or give IV fluids.
* Ventilator: A machine that helps an infant breathe by pumping oxygen into a tube that goes into the lungs.
* Wean: To take away gradually. In the NICU or SCN, it is often used to describe the process of removing an infant from a ventilator or isolette.

6.20.08

2008-06-20T21:16:00.000-07:00

Last week was really busy, but this week should be better. I had midterms last week. The boys are both sick. Alo woke up last weekend with a cold and its still kind of lingering, then Kaia got it on Tuesday. Alo is almost over his though. Kaias is just now at the point where its getting better so he should be good in no time as well :)

Aybra is doing well also. These last two days she has done really well with her bottles. Not well enough to really call it a TON of progress but its progress. This is the best she has done ever so Im proud of her. I think it will still be a few weeks (2 at the least) until she comes home. She isnt really anywhere near taking all of her bottles but she is getting closer and starting to take more. Still havent been able to breastfeed her and Im sure the doctors are going to give me trouble with that so Im not even pushing it right now. Im just trying to let her do what she needs so she can come home and then I fill focus on breastfeeding her then.

I updated briefly earlier about the ROP.. Of course they didnt even bother to tell me about it. I had to ask them. But in their defense the dates of her exams were written down wrong so they thought her last one was in May and her "next one" would be in July but actually they have been examining her every week because her eyes have been getting worse. I dont really think she will have many more problems with them though. I think where she is now is where she will stay but then again I didnt think she was going to have the IVH either. Anyway I do have some pictures but it will have to wait until tomorrow to upload those.

ROP

2008-06-20T17:22:00.000-07:00

Bah!

One week ago
Stage 1 Zone 1 Plus 0
This week
Stage 2 Zone 2 Plus 0

Next eye exam is in a week.

Majour Rant...(With an update at bottom)

2008-06-13T13:06:00.000-07:00

I am so pissed off right now it isnt even funny. The other day I was talking to the nurse about some of the changes they were doing with Aybra.. They keep doing things and then undoing them. She obviously isnt ready for some of the changes and instead of waiting until she is ready they are trying them out anyway. I couldnt understand and still cant understand why they keep doing this stuff.. For instance with her feeds. Her respiration is supposed to be below 60 for her to nipple feed. Well it rarely is below 60. She went from taking maybe one or two bottles a day to them pulling her OG tube out and making her take ALL of her feeds by bottle. She was not ready at all. She dropped weight and had some problems from it. So they put the tube back in. It never should have been taken out in the first place... Around that same time she was having quite a few desats. They decided to take her off of her cannula... Well if she was having the desats ON the cannula then what makes them think she will do better OFF? She didnt even last 24 hours and was put back on it. Again, she was not ready. If the doctors would pay attention to what was in her chart they would see that she was not ready. I questioned the nurses on it and they kept giving me stupid answers so I asked them to have the doctor call me. Well he called today... I talked to him about this and still didnt really get a good answer but I had some other issues I needed to discuss with him too. Now, the one I talked to today was not the one that delivered Aybra but he has been working with with her and the other doctors since the beginning..

Anyway, my majour bone to pick today was the eye ointment. On my birth plan I specifically stated DO NOT GIVE MY CHILD THE EYE OINTMENT! While I was on bedrest I signed papers saying DO NOT GIVE MY CHILD THE EYE OINTMENT! They had papers in her chart and they discussed it with everybody. The doctor I talked to today was actually the one that came into the room to discuss my birth plan and to discuss some of the things they could not do (like lotus birth)... The eye ointment he gave me trouble about and kept going over and over all of these "risks" of not getting it. I told him I understood everything but that I still denied it.... So fast forward a few months and what do I see in her chart? "Mother desired not to use eye ointment but it was given to baby anyway".... PISSED is not even close to what I was when I saw this. The night I saw it spoke with the nurse and she was supposed to get me an answer as to whether or not she did in fact receive it... Well I never got that answer and today was the first day Ive gotten to talk to any doctor since then.. So I asked him. His respone "Why did you not want it?" It does not matter WHY I did not want it. The point is that it says in her chart that she got it after I specifically said DO NOT GIVE IT! So his next question "Well what are you doing to do if she did get it?" It is none of his business what I am going to do. He could not tell me for sure whether she got it or not because he didnt see anywhere in her chart where it said that she did. So today Im going to go mark the spots (yes more than one) where it states that she got it and Ill be sure to have the nurses show him. We got into words about this. He told me that there is nothing they or I can do about it and that I should get over it. He was very rude to me about it and I got very rude right back.

There was also a discussion about the breastmilk issue. They keep starting breastmilk in her feeds and then stopping them for bullcrap reasons. I asked him today what the plan was for getting her onto ALL breastmilk.. His question.. "Well do you have enough breastmilk?" How about asking the milkbank that or how about not even wondering if she has enough and just assume that she does and write the damn orders for it! YES THERE IS ENOUGH. The hospital has over 200 ounces. They did start adding breastmilk back on the 4th but didnt think it was important enough to tell me until about the 10th even though I ask them every single day about ANY changes and ANY new orders. I let the doctor know today that I was not pleased with the reports that I am being given where the nurses just "forget" to tell me things.. Like yesterday. The hospital stopped using Neocate because it was "too expensive". Instead they started her on Elecare which is similar but certainly NOT neocate. The nurse didnt even mention it to me yesterday. I found out last night from a different nurse. This also made me mad because I specifically told them if you MUST use any formula then NEOCATE ONLY!!!! I dont care how expensive it is. That is not for them to judge.

He did not see what the big deal was about the eye ointment. I told him as a parent in the NICU you already dont have much control. But there are some things that I just refuse to do and some things that I must control... like the eye ointment. He pretty much said that he thought I did not understand the risks of her not getting it so they gave it to her anyway.. It doesnt matter if I dont understand the risks.. I REFUSED it and they gave it to her. In a world where I can chose to pull the plug on my childs life and take them off of a ventilator I can not chose to refuse some eye ointment?? I told him that the "big deal" was that I was never told about this and that if I couldnt trust them to follow my wishes with that then what makes me think that they arent doing other things I told them not to.

Anyway the doctor told me that if I was that untrusting of them that I should think about transferring her. I told him I didnt even want her in that hospital in the first place that I wanted her at the Childrens Hospital. So he just lit my fire to get her moved. He tried to make it seem like they were very accomodating to my wishes for her.. Umm right. The only thing they are doing that is on my birth plan is not using any Johnson and Johnson products on her. Everything else they have went against. They cant do cloth diapers because its a health violation... As in.. they cant put a poopy cloth diaper in a bucket WITH A LID but they can put a poopy disposable diaper into a trash can WITHOUT a lid.. Yeah makes a bunch of sense. Their other excuse was that they had to weigh the diapers... I planned on bringing them a few dozen preemie prefolds and prefolds all weigh the same before they are used just like sposie diapers... So that excuse doesnt make sense either. Instead of them just saying we dont want to do it they are giving me a bunch of reasons why they cant do it and they dont add up.

***Update***

You will never guess what happened right after I posted this... I called to check on Aybra and guess what they did? They stopped the Elecare and started her on Alimentum.. HELLO!!! I specifically said NO ALIMENTUM! So Aybras nurse had me talk to another nurse who seemed a bit peeved that I was not happy about this... The funny thing is the doctor made this order BEFORE he talked to me and he didnt even tell me about it... So the nurse was trying to play a guilt trip on me and asking me "Even if she tolerates this you do not want to use it?" No! I dont want to use it. There are other things that she will tolerate. That is not the be all end all. Is it really that hard to make an order for breastmilk? She asked me what formula I wanted then and I told her Neocate. She said they cant do it. I told her I know. So she asked again. I told her I dont want any formula. If they must use one then use neocate and again they cant use it. I told her I know and I told her that if I brought the Neocate up there myself that they would STILL have issues with it and wouldnt be able to use it.. So she says well maybe we can make an exception and get the Neocate for Aybra.... Ok making a little progress here... but she is still on the damn Alimentum!! She keeps asking me what formula and I tell her none. Especially Alimentum or ANY soy based formula. She says ok and calls the doctor.. Too bad I missed that conversation. Im sure he wasnt thrilled and Im sure she probably said some nasty things about me as well as him. Guess what? I dont care. She called me back and lo and behold the doctor wrote an order for ALL breastmilk.. Was it THAT FREAKING HARD TO DO???? Do they seriously think that switching formulas to a million different ones is going to work when they KNOW that breastmilk works and they could just do that? I mean Im not a stupid person but I just dont get why instead of using all breastmilk they want to use part breastmilk and the rest formula. They want to find some formula that magically works instead of just using all breastmilk... They still have to fortify it with formula but at least they arent using some crappy chemicals as a feeding substitute. Oh and Im guessing that she wont "tolerate it" and they will find some excuse to switch again..

Im such a bad blogger..

2008-06-05T20:30:00.000-07:00

Ive been meaning to update but I didnt want to until I had some pictures... Well here it is.

She is at 2325 up from 2258. Thats 5#!! Today they tried to turn down her flow some but she didnt tolerate it well so they turned it back up. She still isnt eating much by bottle. Her breathing is too fast. When she does eat she isnt finishing the whole ammount. I believe she has only finished a complete bottle once. But she is slowly making some progress. I found out the other day that she will be coming home on an apnea monitor. So far no word on the oxygen but from the looks of it she might be coming home with some oxygen too. Ive requested ENT come in to look at her but Im going to have to talk to the doctor about that since they dont have one at this hospital. Ill probably have to take her once she gets home. Im actually a little peeved that they wont do anything before but Im just the mother.. I dont know anything.

Anywho...The other night when I went in the nurse was messing with her.. Changing her clothes and stuff. It was right at her feed time and she was HUNGRY! She was eating her hands and everything.. She was breathing too fast to PO feed but they let me feed her anyway. She took half of it and I think if she had a faster flow nipple she would have taken more.

Here she was crying...

You will never guess what happened to some of my milk!! Ive been donating it... This past Monday I shipped off a small shipment to a woman with a newborn.. Ok newborns dont take that much milk per day right? According to this woman her baby took about 15-20 oz per day.. Pretty typical.. Well she was pumping herself but has a low supply.. So she was needing the milk to supplement one or two feeds per day... My point? The small shipment was 100 ounces... And it would have lasted for a long time... Well the dang USPS broke the box that the cooler was in AND broke the cooler AND broke open some of the bags.. So the once frozen breastmilk was no longer frozen and it had leaked everywhere!! Im so pissed.. Pissed at PO for screwing it up.. And pissed because it had to be wasted. Thats liquid gold!!!!! And its not like I shipped some flimsy little box. For Petes sake, if Fedex can ship the box and not mess it up then surely the PO should be able to... WRONG!!! Needless to say 100 ounces got wasted! Anyway.. if you are in Maine or know of anybody in Maine that has extra breastmilk let me know!

Her first Dolly

The boys had to break it in first ;)

Her and her Dolly (which Kaia named Baby Sissy)

Some of her clothes at the hospital

Sis, Kaia and Me

Her first longies

Her (now) too small dress :(

Babywearing some more

And a face shot

The normal "I cant go to the hospital without Kaia wanting his picture taken" shot

My mum and Aybra

And a cute little bow

All stretched out

Check out those painted nails (fingers and toes)

5.30.08

2008-05-30T06:03:00.000-07:00

The HUS has been dictated and it is the same. No changes. The IVH is still there.... But... She is doing well. She hasnt been able to nipple in a while because the breathing is still too fast. She has been having more desats and bradies. Her oxygen has been bumped up some and her flow is still up. She now weighs 2091 which is up from 2051.

Pictures later... I lost my card reader so Im having to use my desktop and its a lot of trouble.

HUS Results Minus dictation...

2008-05-28T21:04:00.000-07:00

Grade 1 Right side... Its still there :/ They should have it dictated tomorrow and Ill know more then...

5.28.08

2008-05-28T16:16:00.000-07:00

Where to start...

Nothing really new. They have tried a lot of "new" things but they all failed.

They have been trying to nipple her but she just isnt doing too well. Her breathing has been too laboured for her to nipple.

She has been gaining weight. She is now 2018!! Shes a big girl now! The way she was going in the beginning she was supposed to have been coming home around this time :/ Instead she is still in there still waiting on some of the basic things.

They tried her cannula off of her but almost immediately she started desatting and hanging around the 60s so she is back on it.. It didnt even last half a day.. Today she was having more desats so they increased the flow.

Here is a video of Kaia holding her and brushing her hair... Notice how he is just rocking and rocking.

And some pictures

And this is how they fell asleep last night.. Alo crawled over to Kaia and snuggled up with him.

5.25.08

2008-05-25T21:16:00.000-07:00

On the 23rd I got to nipple feed her for the first time! She only took 8ml but it was a start! Yesterday and today she has been nippling.. They are going 1-2 per shift and she took half of her feed for one of them! Her feeds are up to 40ml now so that was pretty good.. It is still neocate.. and let me tell you, that stuff is HORRIBLE! I wouldn't drink that stuff for anything. Kaia doesnt even like it and Kaia will drink anything :) Its definitely not meant to be a PO drink.. GT maybe, but NOT PO.. (There is a reason why they make flavour packets for it)..

Then on the 24th Kaia got to do this:

Could he be any more proud?

And today Kaia got to do this:

Alo-shua just looked on.. He tried to poke her in the head a few times

Today Little Miss moved into this:

Babywearing!

2008-05-23T14:05:00.000-07:00

First.. the update so I dont have to write another one.. She hit 4# last night!!! 1832... Today they are trying to feed her via OG..So far so good.. She did have some residuals but they say it is "Ok"... Though 2 weeks ago the same amount of residual caused her to have to go back to TPT... So we will see.. Hopefully she will do good with eat, and get to start nippling!! Or at least trying to NNN (non-nutritive nursing)

And finally... Ive been looking forward to this day since I was still pregnant...

I had to stop BWing pretty early on with the pregnancy.. But we are back!!

Alo yesterday:

AND!!!!!!! AYBRA!!!!!!
So.. She wasnt too happy to be held at all (sling or no sling) but I did get some pics in the sling. She is my smallest BWer yet. I didnt start with Kaia until he was 6#..

And these are the ones from the other day that I was meaning to share..

Video of Alo and Aybra ... She was getting a bath

Alo sitting pretty in the chair watching his baby sissy

Aybra in the bath

5.21.08-2

2008-05-21T20:43:00.000-07:00

Awww Alo-shua is watching John and Kate with me and they were all clapping and saying "Yay" so Alo-shua says "yeah... yeah"

He went with me to the hospital tonight and he had a blast. He played with the curtain into Aybras room and he told this one nurse (only this one) "Hi" everytime she walked past. She thought he was cute.

Alo-shua got to watch the nurse give Aybra a bath.. He just sat in the chair and looked and looked. I kept trying to get him to touch her but he wouldn't. He doesnt really touch her much at all.. I have to literally force his hand to touch her.. So he just sits back and watches.. and plays with her bed (opens and closes the isolette door) Thats about as close as he gets to touching her.. I imagine its going to be LOADS of fun when she gets to come home

He lasted for a while but then started to get really loud and hyper.. banging on the window and yelling so I had to bring hiim home.

Aybra was good today and tonight. After her bath she was weighed and she had gained even more weight. She was 1798.. re-weighed and 1792. I think they took the latter.

Ill edit this later with pictures and video from tonight (have to upload it)

5.21.08

2008-05-21T16:08:00.000-07:00

The doctor called this morning to inform me of her HUS results.. He said that he thinks they just mis-read this last one and that there is no IVH. Both he and I agree that a bleed to show up this late is quite uncommon. He said he would literally fall off of his chair if it really was a bleed.. So I have hopes that the next scan (on the 28th) will show nothing. The waiting is going to be hard.

The NICU ran out of room to store my breastmilk so they sent home one bag last night.. While I was putting it up I snapped a picture. I dont have the room to store it so its all being donated.. But here is what they sent home (the bottles).. Its over 100 ounces. There is around 150 ounces in the bags that I have pumped and frozen at home. The hospital still has 6 bins of milk that they want me to take home :/ I have to get this stuff shipped off before I can bring anything else home otherwise I will have to dump it out. Alo has a freezer in his room and it is full too. It has about 300 ounces in it.

This is my stash for personal use if I need it. It is about 150 ounces.. Takes up a lot less space than the bottles

Aybra looking around and sucking on the evil binky while being held

And cute little baby feet

This was from last night (BTW She weighed 1760)

And this is from a few days ago

And my boys and their papa... Yep I like to dress them alike

5.20.08

2008-05-20T12:36:00.000-07:00

Bad news today.

She had a head ultrasound yesterday and I was fully expecting it to be fine since all of the others have been.. Nope. She has a Grade 1 IVH right side.. Its the lowest you can go but its still a bleed :/ Im praying that the follow-up HUS in a few weeks will show nothing else.

Aybra also had to be increased on her cannula because she has been desatting.

Her feeds are now 22cal per ounce.

Her last eye exam showed some immature vessels but thats all just part of being preemie. She will have another follow-up with that sometime.

Her weight last night was 1750 which was up from 1703 so she is still gaining really well.

She is really active and trying to escape from her isolette. Last night I was holding her and when I put her up I got her all situated in a comfy position.. I guess it wasnt comfortable enough because she kicked her little feet and moved herself up against the little hand hole.. I moved her back before I left but I guess throughout the night and today she keeps going to that same spot. The nurse said she almost got herself stuck between the matress and the side. Silly girl!!

5.19.08

2008-05-19T14:53:00.000-07:00

I am so slow in updating.. So Ill just jam everything into this..

Its been busy around here because little Mr Alo turned 3 on Sunday!! My baby isnt a baby anymore... at least not technically... Developmentally and stuff he still is.. He shocked a few people at Church.. They were asking how old he was and I told them three.. They gave me the "Are you sure?" look. Sometimes its hard to believe myself.

So.. On Saturday we went to the park and had lunch then went to the zoo.. Sunday we went to the park and played. Here are some pictures.

Me and Alo

The boys at the park

Eating cupcakes

The zoo

As far as Aybra news... A few days worth of updates:

Tolerating feeds well. Feeds are 35ml still TPT
Treatments are now every 12 hours
She is 1680
On and off of the cannula... I had walked in the other night and it was on top of her nose.. I wasnt sure if she had done it or if they had done it (because her flow was so low) so I asked them and they said she kept pulling it out so they tried it off of her.. She did good through that night but the next day she started desatting and had to get it back on. Her flow is really low though. She is still on room air with 1/4 - 1/2 lpm flow.

Pretty much.. We are waiting on her to be able to nipple all her feeds (She has to get off of TPT before she can try this), keep her temp up and grow.. By the time she is taking all of her feeds she will be big enough. So...Im guessing the feeds will be the last thing. (Normally is)

Pictures of Aybra..

She had pulled her tubes out:

Tubes back in

One with her cannula off

Kaia is just the best

2008-05-14T21:54:00.001-07:00

Awww This was just so sweet that I had to post it.. I just got done with the update.. Kaia is still not asleep.. He Says "Hey Mommy.. When you go to the hospital and see baby sissy and I stay here and you see baby sissy and you come home.. How was baby sissy?" He really loves his baby sissy.

5.14.08

2008-05-14T21:37:00.000-07:00

Im sitting here about to update while MSNBC is on the TV in the background.. Its some show about people in prison. The boys are SUPPOSED to be going to sleep but they are playing... The TV shows this guy with a lot of tattoos and Kaia starts giggling and says "Look bubby... Thats gross. He has a lot of tattoos"

So.. for the update.

Last night little Miss weighed 1510! That is Alos birthweight. Tonight she was 1540. Woohoo Aybra! She didnt really have many changes yesterday. Today they started feeding her through TPT again :( Apparently she started having some feeding intolerances. Her flow was down to 3/4 and now at 1/2 and they are trying to go down even farther. She seems to be tolerating it well.

The other night I asked them how much breastmilk I had up there. I am not taking any milk to her. I only leave what I pump at the hospital. Everything I pump at home stays at home. Alo gets about 40 ounces per day. Im freezing 20-40 ounces per day.. Everything that Im freezing is being donated. I have a good enough supply (obviously to be freezing that much every day) that I dont need and I dont have the room for it.... Back to my point.. I was asking them how much milk I had up there.. Because when she comes home I will have to make room for it.. There was 180 bottles.. Its probably over 200 now. Im never going to be able to find room for all of that!!! It would be nice if I could just donate it to the hospital. There are a lot of babies up there that dont have enough milk and have to use formula and it makes me sad for them and their parents :(

Tonight I got to give her a bath and she slept through it. The nurse was holding her up in the little plastic bucket. It was so cute but I couldnt get a picture since only the two of us were in there. I did get a few other pictures though... And our very first family picture.

Nevermind you cant really see her all that well but the room is TINY!!! (Didnt have much room to really take the picture)

What goes best with cookies?

Milk, of course!!

And a big Thank You! To Alison for the adorable longies.

5.12.08-2

2008-05-12T22:43:00.000-07:00

She held steady on her weight today... And she did ok with the wean to 1.25 so she is now at 1LPM on her flow.. And still at room air!! She was moved out of the Giraffe (it was too big for her room) and into a regular isolette. Otherwise things are pretty much the same.

Here are some pictures from last night and tonight...

To start off with her adorable little dress... (Dont mind the tape on the straps...)

Yesterday.. Kaia taking her temp

Getting naked ready to be weighed... If you noticed she pulled her feeding tube out.. She was working on it when I got there so I put it back in... then when me and Kaia went to pump she pulled it all the way out.

The weight

After the weight

And then before I left..

And from tonight... In her new bed

5.12.08

2008-05-12T14:04:00.000-07:00

Ok.. Ive really been trying not to complain about the nurses but the one today had me almost ready to scream at her... She was telling me that they stopped the breastmilk in her feeds and that she is only on neocate again.. They are trying to increase her volume so she will gain weight...

She is on 20 cal per ounce... Her feeds are 28ml every 3 hours and they want her to get to at least 30ml.. Ok.. No problem there.. But on Friday she was at 24 cal per ounce.. When they started putting the breastmilk in they bumped her back down to 20 cal per ounce.. Makes absolutely no sense to me... Instead of increasing the caloric amount they are wanting to increase the volume... Or in other words.. If they would have left it at 28ml every 3 hours at 24 cal per ounce she would be getting approx 192 calories per day.. At 30ml every 3 hours at 20 cal per ounce she is only going to be getting 160 calories per day.. Of course the math isnt exact but how is this supposed to help her gain weight? She is going to be losing an extra 4 calories per feed and they think this is going to help her gain weight? When I brought this up to the nurse I obviously was just a stupid parent who had no clue what I was talking about..

So they are also weaning her off of the cannula.. No problem there either.. She has been between 1.75 and 2.. Yesterday they went down to 1.5 and today they went down to 1.25 and depending on how she tolerates it they are going to get her down to 1... Thats good... BUT the nurse said as long as her heart rate and sats look good they will keep going down on it... Ok Ive been through this with Alo before too... They try to wean him.. he does ok with the wean but he works too hard to breathe.. but since his heart rate and sats look good they keep weaning him down thus making him look like death in the flesh... Literally because he would not gain weight... It seems like the same thing is happening again.. Dont get me wrong. Im happy that she is being weaned but I think they need to truly figure out if the weight loss is from the feeds or from the breathing before they start making changes.

Anyway she is doing good. Ill update some pictures later.

5.10.08 Stepdown Unit!!!

2008-05-10T22:12:00.000-07:00

First of all Im not sure if I will have time to post an update tomorrow or not but I wanted to wish a Happy Mothers day to everybody!!!

My conversation with the nurse this morning went something like this:

Me: Im calling to check on her
Her: She is fine... She is doing good
Me: Has anything changed?
Her: No. No changes
Me: Ok....
Her: She is going to stepdown..

HELLO!!!!!! Thats a CHANGE!!!!!

But Woohoo! She moved.. We are one step closer to going home. Her weight last night was 1440. She pulled her TPT tube out today so they fed her through her OG and she has been tolerating it all fine. They are FINALLY (as of yesterday) adding breastmilk back to her feeds. Hopefully soon she will start to nipple. They have notes saying I want to be there when they do the first one so you betcha if they do it without me Ill be posting a big rant about that..

On to the fun stuff

Her new home:

Before the move:

After the move:

And I got to hold her!!

And Alos birthday is coming up (on the 18th).. He will be 3 years old! Can you believe it??? Anywho I am not getting him any toys for his birthday.. None at all... Horrible huh? Instead Ive just been getting him some summer clothes and Im going to get him some new diapers... Here is a cover Im working on for the diapers... I will post finished pictures later but I thought that it was pretty sad I had to use tape to hold it on.. (And I didnt even realize it was on crooked until I had already sewn half of it on!)

Who will walk first?

2008-05-08T22:18:00.000-07:00

This is a conversation I have had a few times with different people...

Is Aybra going to walk before Alo? Or is Alo going to walk before Aybra?? My money has been on Aybra (not that I bet on my kids or anything) but now I might put a little on Alo..

Check this out!

Alo's new torture device.. It even comes with a table (the top can be removed and there is a bowl under it for toys or whatever he wants to put in it)

He FINALLY got his stander!!!!! Granted, he hates it but he got it! He has been in it 3 times for a total of about 2 minutes... The first two times was getting it all adjusted for him and then I tried him out today but he had a huge fit so I took him right back out of it. His legs are still really tight and its painful for him to be on them. Hopefully soon he will get loosened up a bit more and be able to enjoy being upright instead of on his knees. His poor knees are so roughed up from "standing" on them and crawling everywhere.

This device will hold him into a standing position and make him bear weight on his legs (which he does not do).. It is not a walker but it *might* help him to eventually walk.. Then again it might not... but we will not know until he can actually use his legs more and put more weight on them. We do know if he ever does walk that he will need braces at least up to his knees possibly much further.

Now to get the dang wheelchair.

5.8.08

2008-05-08T22:07:00.000-07:00

On the 6th Aybras nurse told me to "Come tomorrow prepared to hold her".... Yeah right... Since she pulled her vent out that whole plan fell apart.. But tonight.. the 8th.. she got to be held.. By Nanny!!

She weighs 1460 grams now... Her feeds are still 28ml but are now 24cal/oz. And she is going to be weighed every day now. They stopped some of her sedation too so thats good news. And of course since Im so negative Ill share some of the bad stuff... She had a pretty bad episode this morning.. but recovered nicely. HR dipped below 80, Sats dropped to 19! BUT!! I guess it was in the midst of a big poopie so they arent too worried about it... and she has been fine since.

FWIW The nurse I talked to today only told me about the episode and I specifically asked her if anything had changed.. I had to drill her for information about her oxygen needs... (What flow is she on... What %... How is she doing... etc) She never told me about the feed change or the sedation... So... Yes.. I will continue to complain about the nurses not telling me things when they have notes stating that I want to know.

Ummm Ok.. Whatever..

2008-05-08T21:42:00.000-07:00

So I got this lovely little comment....

"Lauren said...
Wow...I'm so glad a a NICU nurse I don't work in your NICU. It sounds like you don't even give them a chance on a day to day basis. You have to work WITH the nurses not AGAINST them. Your beautiful baby can pick up on your negativity. Trust that they have done this thousands of times before, and be proactve in her care. But if you don't work WITH them....it is going to be a very, very long 2-3 more months for you.
-a concerned NICU nurse"

How do I not give them a chance.. Isnt asking them "Has anything changed?" giving them a chance?? They might not think it is important to tell a parent that their child got an eye exam but as a parent of a preemie its pretty dang important. Ive been through this before.. Twice before.. My oldest is a 29 week preemie and my middle child is a 27 weeker.. and I dont know if you noticed or not but he has a lot of dang equipment.. This "very long 2-3 months" with Aybra is going to be NOTHING compared to what I have faced with said 27 weeker and still continue to face.

And you are damn straight that I am negative with what some of those nurses do... That does not mean that I am negative with the nurses. This is MY CHILD that they are taking care of.. Not THEIR child.. If it was their child then they could do whatever they want. It does not matter that they have done it thousands of times before. Just because my child is in their care does not mean that I am not her parent and not going to have a say in her care... Some parents might not care and might not ask for details but Im not one of those parents. I want to know what is going on with my child. I dont want to hear "nothing has changed" when something has changed. And if they dont tell me then I ask about everything... That is not fair. I should not have to ask "Has any of her vent settings changed?" or "How is she tolerating her feeds?" They should be giving this information to me when I call to check on her.

5.7.08

2008-05-07T22:32:00.000-07:00

Aybra had a pretty good day yesteday.. They weaned her vent down to 30... Today they weaned it down to 26 and her PIP to 19.. Kaia got to visit with her for a while last night and he loved it.. He just sat in the chair the entire time and held onto her hand.

Heres some pictures

BUT WAIT!!!!

Pictures from tonight...

Something is missing..

She pulled her vent out tonight

Me and Kaia were sitting in the chair beside her bed reading a book when all of a sudden her vent started beeping "apnea"... "Hmm" I thought... Her monitor was showing a pretty good RR... So the respiratory tech came in and sure enough she had pulled it out.. The nurse told Aybra last night that if she were to pull it out that the nurse would leave it out and see how she did. Well I guess tonight she decided to see if the nurse was telling the truth or not... So she is back on the cannula and comfort flow... O2 was around 30% but she needs the flow more than the O2.. Flow is 2LPM.

Last night she was weighed and she was 1410.. That was a pretty big drop.. Nurse weighed her again and got 1410 again.. So she waited for a few hours until her next care was due and weighed her again and this time got 1445.. Still kind of low but better than 1410.

Her PICC line is out! She now only has her feeding tubes (OG and TPT), her pulseox, apnea monitor, and cannula. We are backing on the "up" ride of the roller coaster.

5.5.08

2008-05-05T22:43:00.000-07:00

Feeds are still 28 ml... Still 2 on one off. They are fortifying now though.. a whole 1 extra calorie per ounce.

Ive been waiting for her to have her eye exam.. I swear I thought it was scheduled for the end of May.. Turns out it was the end of April.. So she had it on the 30th.. Just so happens to be the same day Alo had his appt... They never told me she had it.. So today I receieve a letter in the mail stating that she is being observed for ROP and a whole bunch of other stuff. The way the letter read was that she had it so I called furious to the hospital asking them if she indeed does hav it and why I was never informed that she even had the eye exam.. When I ask them "Has anything changed today" I expect to hear EVERY SINGLE ORDER... and EVERY SINGLE CHANGE... even the slightest one... I think an eye exam is pretty important... Nobody told me any results, good or bad from the first one.. I am NOT happy right now..

She is requiring a lot of sedation.. They changed it from IV to PO today... She is still kind of getting used to the switch.. As soon as the sedation starts wearing off she starts acting up.

They were able to remove her IV today so now all she has is one PICC line.

She looked so cute today all dressed up but I couldnt find my camera before I left so I didnt get any pictures :( I did get some of last night though.. Oh and the hospital took a picture of her today and made her another little scrapbook page. Its cute. Ill get a picture of it later (found my camera when I got home)..

So here are the pictures that was on it..

A picture of her vent settings from last night

A picture of her from last night

Kaia wanting to read a bedtime story last night..

Kaia and Nanny at the hospital last night

Alo last night waiting on Verda (his nurse)... with the worlds worst snappi job EVER (Green Earth Textile Indian Unbleached Infant Prefold trifolded inside a Gerber prefold) And look at his hair!!

And I dont remember sharing this one.. Alo in the pumproom with me the other day

5.4.08

2008-05-04T22:27:00.000-07:00

She is doing well... Well is not good enough for me.. I am wanting more and Im getting frustrated and angry and sad and all kinds of other emotions.. At frist she was doing sooo well... I expected some setbacks and they did not seem to be coming then all of a sudden they came with a vengence.. She had a few of them (the sepsis, vent, feeds, etc)... She has improved since then and I am thankful for it, but I just dont feel like it is enough.

Her feeds are at 28ml.. 2 hour on, 1 hour off. She is tolerating that well so that is really great...

She is on air control temp on her bed... Thats pretty good too.. She is holding her temp up more but she is getting chubby chubby... They got the excess fluid off of her but it really didnt help with the weight.. She was 1580 last night and 1590 tonight.. So 3.5#.

They started steroids on her yesterday. She hasnt really been on room air much lately. Shes been around 50% but tonight was able to be weaned to around 39%... So it seems like they are helping but her latest x-ray looked crappy... She has no heart visible :/ I had them show me all of her x-rays from around the 3rd of April until tonight and the one on the 3rd of April looked fantastic compared to todays.. It looked better than Alos x-rays and that says a lot cos his lungs are just not good at all.... Tonight though her x-rays looked worse than his. I asked the nurse when she thought they would start talking CLD diagnosis and she said she wasnt really sure, but she hoped that she would not need "all of that equipment" referring to Alo's stuff... I hope she doesnt need ANY equipment. Having two kiddos on vents now is hard enough even though one is in the hospital.. Having two at home would just be torture.. So say some prayers that she kicks this infection and gets off of the vent and o2 very soon. 36 weeks is coming up fast and thats usually when they start diagnosing things.

Oh and she got one of her PICC lines out today. Im sure Im missing other things but I will update them later.

5.2.08

2008-05-02T22:33:00.000-07:00

I just havent felt like updating lately... Aybra is doing good, but not as good as I would like her to be doing.

Vent settings:
PIP 20
PEEP 4.5
RR 32
O2 Varies..

Feed:Her lipids were stopped yesterday because 20ml was her "full feeds" and she got there and tolerated it fine but they will continue to increase it as much as she tolerates it.

She has been desatting a lot lately.. Having quite a bit of secretions.. They cultured her and she has some ureaplasma in her ET tube so they started her on antibiotics.

They wrote on her progress note the other day that she has a lot of jerky movements... She has been having them for a long time. It almost looks seizure-ish but I think they are only related to immature nervous system.. Im praying it is nothing more. Its funny though because if it werent for me having noticed it a long time ago I never would have known.. They did not bother to tell me... I just LOVE how they communicate (sense the sarcasm).. I have to literally ask them about every single thing in order to get an answer besides "She is doing good".. Even then they still leave stuff out so I just read her chart..

Anyway, they were going to weigh her again tonight so Ill post that weight tomorrow.

I didnt really get any good pictures of Aybra so I will share one of Alo from last night.... Passed out on Tad even though his pillow was only a few inches away.

4.30.08

2008-04-30T21:51:00.000-07:00

Feeds: 17ml.. Tolerating well... Woohoo!!
Vent settings... Good.. Rate has gone back down. Pressures are the same.. O2 still about the same..

Still slight edemic... She will probably get a dose of lasix tonight and I think that will take care of it.. But still not really clear on why she is swelling.. Maybe respiratory issues? Her kidneys seem to be fine. She looks about the same as she did yesterday so I guess that is good...

Alo was kind of irritating her today.. He was super excited about everything I guess and being kind of loud and she was making sure we knew she did not like it.. She has had a good day though and her night is going well also.

She was moved into a different warmer bed today because hers broke... It was not heating up..Bye Bye Giraffe bed... We will miss you

On with the pictures....

My poor bald baby :(

Courtney and Aybra

Nanny Fallon and Aybra

Me, Alo and Aybra

And leaning in for our close up

Belly pic progression...

2008-04-29T21:47:00.000-07:00

4 weeks:

6 weeks:

14 weeks:

Me and Kaia bellies.. 17 weeks:

19 weeks:

23 weeks:

24 weeks:

25.. The day before my water broke:

And an "After" pic... Woohoo, right?

Wrong!

Having my body back is nice and all... but not when she is supposed to still be in there!!!

4.28/29.08

2008-04-29T21:34:00.000-07:00

I didnt update last night... I wanted to so I could ask for some prayers but I was busy with Alo..

Anyway.. Here is the 28th and 29th all into one..

On the 27th I thought her head looked a little bigger so I measured... I got 27cm. I wasnt sure what her last one was so I had nothing to compare it to and before I got a chance to look I forgot.. On the 28th I looked and her last one (from a week prior) was 25.5.. So I thought my eyes were just playing tricks on me and it was because she was growing.. Well She had some swelling last night... So I guess my eyes were fine and it was just the beginning of balloon baby..

She was weighed last night and she was 1405.. HUGE weight gain (due to the swelling).. So in the middle of the night she was given some lasix... A lot of fluid is off today but she is still swollen...

Her feeds have been increasing everyday (quite quickly actually). She is up to 15ml now!!! That is OVER what she was taking before..

Her vent settings keep getting bumped up. He co2 the past couple days hasnt been all that great. (77, 74, 69).. While it is getting lower Id like to see much lower and lower vent settings.. Today they bumped her up to a rate of 32. Pressures are still the same (20 and 4.5)..

Overall she is doing well... I can't believe that on Thursday she will be 31 weeks GA! It just does not seem like it... I have this thought in my mind that she is having the typical preemie journey and while she is, I didnt expect her to be on the vent at 31 weeks especially since she was off before! It just seems like the other day they put her back on.. but I guess not.. Anyway Its great that time is flying since it means she will be home sooner.

Ive been busy getting everything ready for her to come home.. Carseat, clothes, diapers, etc.. The only thing really lacking is a coming home outfit... but I tend to put sleepers on for that and I think I will wait until we start talking discharge to find an outfit.. First girl means I can get a cute coming home outfit..

4.27.08

2008-04-27T21:38:00.001-07:00

Thank you Beth D. and the Grace United Church of Christ from PA for the adorable prayer doll!!

A picture from tonight:

When I visit her I will sometimes take something to do while she is sleeping.. This is one of the recent projects. A dress!

And a new diaper cover to match her dress! Too bad the dress is Micro-preemie sized and the cover is NB ;) Guess I will have to make a new dress.

The back:

And the front:

Its Sunday... Time for a rant!!

2008-04-27T14:27:00.000-07:00

So... This is 99% not Aybra related.... 1% Aybra related and a whole lot of rant...

I was informed by Eden that I Posted too much personal information on this blog.. Personal information about him.... You know what..?? I DO NOT CARE!!! I am entitled to post what I want.. If he has issues with it (which was his behaviour).. then perhaps he should change his behaviours... I gave Eden the blog link after that particular blog was posted.. Obviously if I was worried about him reading that blog then I would not have given him the link or I would have taken that blog down... If he is just now seeing it then that is his problem.. Not mine.. I am NOT taking that blog down...

Apparently the issue started because some person that he knows out of state has been reading the blog (Hi whoever you are... Id be interested to hear how you found the blog)... They called his family and was asking if that was him.. Umm YEP that is him.. He can deny it all he wants..But that is him and Aybra is his child... Anyway I guess he was confronted with some of the information in that post (Again his problem not mine)... And he doesnt want to look bad in front of his family... Oh I could go into much more detail but I will not.. I left a lot of the information that he sent in the email that I quoted OUT of the blog post to help "protect" him... But trust me... if I posted it his family would NOT be happy then he would have a real reason to complain... Anyway.. as I said.. That blog is staying...

(UPDATE Monday: So Eden read the blog.. Woop-Dee-Doo! Apparently Eden seems to think that I post about him to make him look like a bad guy... Wrong.. Or that I want sympathy.. Wrong again.... If I wanted him to look like a bad guy I could post a lot worse stuff... But to save him and his family I won't. Im not low like that..But his most recent request... Not to use his name when I post.. Um not using his name?? What is that supposed to do? Keep it a secret that he is the father? I will use his name when and where I want.. If he doesnt like the fact that he is the father then tough for him... If he doesnt like that I post crappy things about him then tough for him. I owe him nothing. He owes Aybra everything.. and 15 or 20 minute visits every other day is just not enough... To which he thinks "I will go to visit when I want and I dont owe anybody an explanation for the frequency or length of visits. I will be her father my own natural way with no conditions or dictations" Right... So he can chose to stay there for 15 minutes and that is his natural way of parenting... WTH are you going to teach a child with a 15 minute visit?? I surely hope he sees the wrong in this and wants to become an actual father figure to her instead of just a "visitor")

The Aybra related bit is a rant also.

Every morning as soon as I get up I call to check on Aybra... I call every 2-3 hours throughout the day and night and every time I pump and sometimes in between those times as well.. So yesterday morning I called and talked to Aybras nurse.. She asked me if I was planning on seeing her today... I simply told her yes.. Today she asked me again... and Im sure I was rude when replying but I took offense to it.. I am there EVERY SINGLE DAY to check on her... I call multiple times EVERY SINGLE DAY to check on her. Granted there are parents that do not care and do not bother to call or go visit everyday.. there are also those who CANT call or visit everyday.. I am not one of those parents.. I do whatever it takes so I can go and see my child in the hospital. So when I gave her my answer today I told her that I am there EVERY SINGLE DAY. I think she could sense the tone of my voice because she said "I thought I saw you everyday but I wasnt sure".... Now, I know she didnt mean anything by her question at all but my gosh... Look through Aybras records.. I have never missed a day and do not plan on it. There have been some days that the nurses did not chart some of calls or my visits but there is not a single day in her chart where absolutely NO call or visit from are shown. Every single day shows at least some of my calls and visits.

When Alo was in the hospital for 3+ months I only missed 7 days and my excuses are really dang good. 4 of those days I was sick and was not allowed to visit. One was car trouble and the other two weather related (If you live in Arkansas then you understand the weather issue). Alo was in a NICU an hour away yet I made the drive every single day (besides those seven). I never missed a single day when Kaia was in the NICU.

And just to make it more Aybra related...

Aybra had some desat episodes today.. They increased her feeds today.. The first three were 9ml then it was going up to 10ml... Woohoo! We are almost back to where we were before her setbacks... She is growing great, tolerating her feeds... Her vent settings are kind of back and forth... but things are looking good.

Did I post this picture before? (Sorry I take so many I cant remember what ones Ive posted or not). This was during KC on the 24th.. I was taking the picture myself so it isnt all that great but its the best one I had... I need to go transfer pics to my computer then Ill update some more pics from last night.

4.26/27.08

2008-04-27T00:21:00.001-07:00

A quick update:

Shes doing well..

Changed the ET tube last night because she was having some issues and the tube changed helped with the issues...

She had to get another transfusion.. Its going right now as I type this. I think this makes around 7 now.. I stopped counting.

Weight is 1235 grams... (2# 11oz or so)

Feeds are at 7ml and she is tolerating them well... She definitely has reflux. They tried to feed her in her OG tube and she just wasnt having it... Switched back to TPT and she did great.. So thats bad news... I hope it gets better before she comes home.

Pics to come tomorrow.

4.23.08

2008-04-23T21:59:00.001-07:00

First of all apologies for those who I scared with the lack of updates.. Nothing happened I was just really busy witht he boys and school. Im trying to catch up on 4 weeks worth of work..

Yesterday they started her feeds back!!! However, its only neocate this time.. They will not add the breastmilk until she is up to full feeds :( She is handling her feeds well so far, but she is only getting 1cc (They started her out at .5 yesterday)... One whole cc... She seems to like it though. She smacks her little lips and drools when she is feeding so I think she knows whats happening.

Day before yesterday she was weighed and was 1185. Tonight she was 1190.

On the 21st she had a blood culture.. And another one yesterday.. As of earlier today none of them had grown back anything.

Her vent settings are super low
PIP 20
PEEP 4.5
RR 14
O2 21%

Tonight she was awake so much and looking around. Everytime she heard something she would try to turn her eyes toward the noise. Most nurses sedate her as soon as she starts wiggling so it was nice to have one that let her be herself for a while. She was happy. Heart rate was fine and sats were fine.. She was just having a little party in her bed ;)

Picture of her eyes open and looking around (There is a link to a video right below this picture)

Video of her looking all around

And did I even mention on my last post that I got to hold her again? I cant remember if I did or not.. If I didnt mention it.. I got to hold her the other day.. If I did mention it disregard this ;)

4.20.08

2008-04-20T20:01:00.000-07:00

Nothing too terribly new as far as changes to report. She did gain weight and is now 2.5# (1150). Her X-rays look like she is developing BPD. She still has heart present but the ground glass look is getting worse :( She is doing great respiratory wise though.. Hopefully she will get off of the vent soon before it does any more damage.

Her heart.... Looks like she might be developing right ventricular hypertrophy.. Her next scan will show more..

Now.. on to the fun stuff..

Nanny changing Aybras diaper

Basket from the Church.. what church? I have no idea. It was packed full of stuff.... (small Bible, couple books, journal, toys, blanket, and baby stuff)

I rigged her bow so it would fit her better!

All stretched out..

4.19.08

2008-04-19T23:36:00.001-07:00

Too angry for an actual update... You can be sure I will rant later about it.. In the meantime here is a pic from tonight.

The long awaited un-edited Birth Story

2008-04-19T00:27:00.000-07:00

In order to help keep this as short as possible I did not include everything. Most of what is missing can be seen by reading back on the blog.

Thursday March 20th 2008 started as most other days had started. I did notice some extra discharge but just assumed it was the typical pregnancy junk, afterall I was 25 weeks to the day and knew that the discharge was going to be coming soon. I made a trip to the store to pick up some groceries and upon coming home started nesting. I had some back cramps the whole day but I assumed I had just overdone myself so I decided to take a nice long bath. That helped to "wash away" the discharge and ease things with my back. I went to bed feeling much better than I had during the day.

On the 21st things were going great. I had to wear a pantyliner most of the day because the discharge was back with a vengence. I really thought that I had a yeast infection. So, back to the bath I went... I washed up and then started sewing my first diaper on the sewing machine while I waited for Alos nurse Verda to come.. I was finishing the diaper right when she came. I gave her report then around 10pm headed into the living room to sit with Fallon.

We sat beside each other on the loveseat watching funny videos on youtube (one of our favourite pasttimes). Around 11:00pm I had to use the bathroom so I got up and went tinkle, came and sat back down to continue with the youtube funnies About 10 minutes later I felt the need to use the bathroom again. As I was standing up I felt a trickle of fluid and thought I was urinating on myself. I started walking to the bathroom and just stopped in my tracks not even 5 feet away. I was pouring fluid down my legs. I knew then that it was not urine. My water had definitely broken. I grabbed my crotch thinking it would really help it and told my sister that my water broke. I dont know how she reacted like she did but she jumped up, grabbed the telephone from Alos room and called 911. While she was on the phone with them she was looking around for a blanket for me to lay on in the floor so I wouldnt soak the floor. I asked her to find me a waterproof blanket (I had a specific wool blanket in mind but forgot that I had placed it in the washer that day).

She found no blanket but grabbed me a puppy training pad (like a chux pad). I layed on it in the floor while she was on the phone with 911. The entire time I was laying down I felt fluid just gushing out. When my water intially broke I did not even bother to change my clothes. As I was on the floor I started to feel some contractions. I started praying to myself "Please do not let this baby come right now. Please let me make it to the hospital."

About 10 or so minutes after the 911 call the fire department arrived. 3 fire fighters came into the house. The first one that walked in asked me what was going on. I told him my water had broken and he asked me why I had not had the baby yet. He was joking but I was very upset with his joke. My sister told him that I was only 25 weeks pregnant and he simply said Oh. The second firefighter started taking my vitals and the 3rd was just kind of watching everything. He seemed the be the "lookout" and kept going outside to wait on the ambulance.

The ambulance took a bit longer to arrive. Im sure it felt like much longer than it actually was. When they got to the house they brought in a stretcher and I got onto it. I was a little embarassed when I stood up because my pants were soaked and with every little step I could feel more fluid coming out.

I got into the ambulance and it seemed to take forever for them to leave the driveway. In reality it was probably just a few minutes before we started making our way to the hospital. Before that though they took my vitals again. I was pretty scared and nervous. My blood pressure was as high as it has ever been. It was 123/76.

The paramedic in the back of the ambulance with me was a guy and he was telling me all about his day and the calls he had been on. I must say he had a very interesting day and I laughed almost the entire way to the hospital.
When we got to the hospital I was taken straight to a Labour and Delivery room. It just so happened to be the exact same room that I delivered Alo in. It really brought back memories.

I got up off of the stretcher... More fluid leaked out... made my way to the bed, got undressed and into a hospital gown. Im normally not a fan of them in the least but it was a tad bit refreshing to get out of my soaked clothes and into something dry.

As I was getting into the bed the nurse that was going to be taking care of me used an amnisure strip, swiped it across my clothes and confirmed what I already knew. She said "You have definitely ruptured" as if it was not obvious enough from the amount of fluid on my clothes.

I was checked for dilation and was still the same 2cm I had been since around 15 weeks but I was now 60% effaced. I was hooked up to the monitors and was told I would be given an IV for mag and antibiotics and some steroids. I was very anxious to receive the mag despite the problem I knew it came with. It took almost 2 hours from the time I arrived for them to put in the IV, start the mag and administer the steroids.

Throughout the night I was very uncomfortable. On admission I was put into the trendelenburg position and was unable to move. I was having contractions every few minutes but could not get comfortable with them. I had started bleeding and was continuing to leak fluid.

The next day (the 22nd) things were still the same.. Contractions every few minutes and no way of getting comfortable. The mag was slowly increased throughout the day and I was given procardia to help stop the contractions.

What happened next was kind of a blur. The 23rd I remember my sister brining Alo to the hospital but I was so out of it from the mag that I could not even turn myself over in the bed. The contractions had slowed down but the mag was really taking a toll on me and wearing me out. My blood pressure was dropping really low (70/30's - 60/20's etc) so the procardia was stopped. My contractions had completely stopped by this time so they slowly started weaning the mag. On Monday the 24th I was moved out of the L&D room and into a room on the antepartum unit...It was the exact same room that I had been in only 2 weeks before. I was to remain in this room until my baby was delivered.

As I was being moved I just kept thinking to myself that things were going to change and I would be moved back into the L&D room but things seemed to be holding steady. When I got into the room and settled I rang for the nurses so I could use the restroom. One came in, unhooked all of my machines and told me I could get up to use the restroom... *SHOCK* I was not expecting that. I had been using the bedpan so I assumed I would continue using it. Needless to say I was pleased that I was able to use the restroom on my own but a little worried for my baby.

Anyway, on my way to the restroom I felt fluid running down my legs. When I got into the restroom I was turning around to close the door and noticed a puddle of blood on the floor. I thought to myself "Here we go" but nothing happened. I continued to bleed off and on, heavily then not heavily for the next few days.

Every few days I received ultrasounds and Biophysical Profiles. Twice a day I had to do NST's. The baby seemed to be tolerating everything well. My WBC was being monitored every day. It fluctuated but nothing too majour. I was still on the antibiotics so they just kept watching the WBC.

On the 29th I started having decreased fetal movement. It continued on to the 30th. A BPP was repeated and the score was lower than what it had been. The doctor wanted to wait the day out and see what the next day brought. I was expecting things to change and the baby to do better, but the baby only got worse. The heartrate started dropping and I still felt very little movement. The BPP was repeated on the 31st and the numbers were no better.

The decision was made to deliver the baby that day only 26 weeks and 4 days along. I had a very hard time with this choice because it meant a c-section, but I agreed because it was what my baby needed.

I called my sister to let her know but I could not get her to answer the phone. I called Courtney and asked him to call my mother and have her call me at the hospital. She called me and I let her know what was going on. I continued to call my sister for about 40 minutes when she finally came into the room. She had been on her way up to the hospital to surprise me and had no clue that the decision had been made to deliver that day.

The neonatologist came to speak to me about my care plan.. He gave me hell for some of the things on it but quickly realised that I was serious with everything in it and he backed down. He knew that I was not going to change my mind on some things.
The NICU nurse that had taken care of Alo when he was born came to speak to me as well as a whole slew of other people, mostly NICU related.

The anesthesiologist came to speak to me about epidural and spinal options.
Everything was falling into place for a smooth c-section delivery.
We were given a time of around 5.30 - 6pm but as things would go the doctor had to do a delivery at another hospital so we got stuck waiting. While I was in no rush to get my baby out I was anxious to get things over with. Around 7pm I was taken into the operating room. The spinal/epidural was put in and I layed back.. I was prepped for surgery then Fallon and Eden were allowed into the operating room. In my birth plan I had requested that if a c-section be needed that I be allowed to watch the entire thing, or for somebody to tell me everything that was going on as it occured and for the curtain to be dropped as my baby was being delivered so I could see it happen. Luckily they agreed to the first. I was allowed to watch the entire surgery and no drape or curtain was ever put up. I was positioned under a mirror. Fallon and Eden got to sit at the head of the bed and they could see everything as well.

Things were going great... then I heard the doctor say "footling breech". No big deal I thought.. Babies are delivered breech c-section all of the time... But this was not expected. The ultrasound earlier that day had shown the baby head down. The incision was not cut big enough for the doctor to deliver the baby breech. I was informed that the doctor was now doing a "T" on my uterus. My heart sank. I knew this was not good. The doctor just casually told me that because of the "T" I would never be able to have another vaginal delivery and that all future babies would have to be c-section. My mind was made up right then that there would be no more future babies. I would not have another c-section. I did not even want the one that I was in the middle of.

The doctor continue to cut away to try and free the baby. After a few minutes that seemed like many more the baby was delivered (8.28pm) and handed off to the awaiting NICU team. I heard little cries. My baby was breathing. I lay on the table trying to listen to every little cry I could... Then the cries stopped. My baby was intubated. This is when I overheard the neonatologist say "She" this and "she" that giving my doctor reports on how my baby was doing... My baby girl... I had a girl.. I was happy about that but very sad that they announced it without letting me find out on my own. I was very specific with that in my birth plan that nobody was to mention the gender until I found out on my own. Signs were hung in the OR and everybody was told... Apparently everybody but the neonatologist.

Around this time I was starting to feel a lot of pain as the medicines were starting to wear off and the doctor was still working on delivering my placenta which ended up being another problem as I placenta accreta and it was not detected with any of my ultrasounds. The problems did not stop there. My placenta was in pieces as it came out. Parts of it had literally dried up inside of me. No wonder my baby was having problems!

I started to somewhat dose off from the pain medicine they had given me. As I was falling asleep my sats started dropping so I was startled awake by the nurse telling me to take deep breaths. The doctor was still working on the placenta at this time and I was still feeling pain. The nurse that was helping the doctor asked me if I wanted to find out the gender before the baby was taken away.. I told her no that I had overheard the doctor mention it and then I started crying. One small thing that I wanted control of was taken away from. It was a minor thing compared to everything else but to me it was HUGE.

My baby was then walked around to me so I could tell her bye as she was being taken to the NICU. I could not see her face at all. The only thing I saw was the ET tube.
The doctor had removed as much placenta as he could and was just starting on sewing my uterus up so it was going to be a while still before I could get an even better look at her. About 30 minutes later he was finally finished and I was taken into a recovery room where I was made to wait about an hour before I was wheeled on a stretched into the NICU to see my girl.

She was perfect. The nurses assured me that she did not have spina bifida and that she was doing well. She was placed on a ventilator, given umbillical lines and a blood transfusion, all things very common with preemies.

Her weight was stated as 885 grams - 1# 9oz but turned out to be wrong. She *was* 885 grams but it translates differently. She was 14 inches long. After seeing her, making sure she was ok and getting the vital stats I had to be wheeled into my new post partum room so I could rest and recover from the most horrible c-section ever.

The entire c-section took about 1.5 hours. During the c-section I lost a bit of blood and a few days later had to have an iron infusion before going home from the hospital. A few hours short of being 2 weeks exactly from the time I went into the hospital I was released. I was so happy to finally be going home but the worst was yet to come. I had to leave my baby at the hospital knowing it would be months before I could take her home.

People who helped welcomed baby Edelyn "Aybra" Morgen:
Mother - Khourtniey
Father - Eden
Auntie - Fallon
Grandmother - Debbie
Uncle - Courtney
Brother - Aloshua

After a few days big brother Kaia and Grandpa Jerry got to welcome Aybra earthside.

4.18.08

2008-04-18T22:34:00.000-07:00

Poor Aybra had to get poked twice tonight for an IV :( Her scalp IV blew so they started another one. Pictures from before she was poked.. I got a few after but they didnt turn out all that great.

Thank you Julianna for the adorable preemie contours.

They almost make a blanket for her

And an upclose shot of her pretty bow (Thanks Kelly)

4.17.08

2008-04-17T23:20:00.000-07:00

Blood cultures came back this morning with yeast :( They started her on an anti-fungal for that.

Her PICC line has been pulled (because of the infection) and she was given IVs in her left hand and left foot.

She stopped tolerating her feeds as great as she was so despite having gotten up to 14ml them. Her tummy was also up 1cm.

She had to get another blood transfusion today.

After the transfusion her IV blew so they had to restart one in her scalp :( Her first scalp IV. :(

On the 15th she went to air temp but had to be moved back to skin temp today.

The only good news is she gained some weight. She is now 1120 grams (2# 7oz). Well that and her vent settings look ok. They were able to wean her pressures some.
Settings are:
PEEP 5.5
PIP 22
RR 45
TV 8
O2 21

I cant believe she is already 29 weeks GA!! Almost the entire time I was there she was sucking on her vent tubes. So cute :)

4.16.08

2008-04-16T22:20:00.001-07:00

Feeds are up to 12ml... Still tolerating fine.

Nothing else really new. She is stable. Vent settings arent horrible. She is doing fine on room air again and only needing to be bumped up for short periods of time.

Tiny baby feet

P.S. Didnt get a chance to talk to the doctor today about that "diagnosis".

"Who of you by worrying can add a single hour to his life" Matthew 6:27

Calls in the middle of the night.

2008-04-16T03:44:00.000-07:00

As a preemie parent you come to learn that when the hospital calls you it is never good especially when they call in the middle of the night. I just received one of those dreaded calls.

Aybra is back on the vent. A few days ago she started to become tachypneic. No real problem there as it was kind of coming and going in episodes.... Day or so later she had desat episodes throughout the entire day... Bigger problem but still nothing too bad.. Yesterday she started having apnea episodes and continued to desat with those...They just thought that maybe because of the tachypneia she was getting tired and it was just her way of taking a break well the apnea was still continuing through the night so they intubed her again to give her a real break and see how she does. They will be checking cultures for infection also.

So there is my bad news post. When I had checked on her last at 2am she was still having the apnea and the nurse had increased the flow on her NC again. I kind of thought they might do something when they kept increasing her NC flow but didnt really expect it.

4.15.08

2008-04-15T22:30:00.000-07:00

Thank you Stacey (MDC) for the first prayer bead:

(You can barely see the bead in the bag but its a super cute little pink flower.

And for the prayer:

"Lord,

Please bless and protect this Mother and Child. Grant them continued Strength and healing as You continue to show them Your love and mercy. Thank You for their presence among us as they reveal Your greatness.
Amen"

Two adorable outfits from Jodi (PO)

And one VERY excited big brother. He seriously adores his sister so much its unreal. He is going to be VERY protective over her. He already tells people how to handle her... "You can touch her but dont stroke"

And because this was very sweet I had to share it... Kaia was asking about the cover over the bed and the nurse was explaining that it was to help keep the light out... A little later Kaia started asking about the pattern on the cover. The nurse was saying that it was a baby and a mama giraffe because the bed was a Giraffe bed and that the little hearts were on there because the mama loved the baby... Kaia walked over to where I was standing, pointed to one of the hearts and told me that heart meant that he loved me.. I had tears in my eyes because it was so sweet. Then he had to point to all of the other hearts and tell me that each one meant that somebody else loved me. Can we all say "Awwwwwwwwwwww"

And for the update..

1040g! Woohoo! 2# 4 almost 5 oz.
Still tolerating feeds.
Had to have a transfusion today :( But doing really. Nothing too terribly new to report but I did see something today.. a diagnosis that Im not ready to repeat yet because Im not sure if its just a "risk of" and something they are watching for or actual diagnosis :( Im going to ask the doctor tomorrow to find out for sure.

4.14.08

2008-04-14T23:55:00.000-07:00

A pictureless update

I didnt have an actual update yesterday because I did not want to jinx anything.

Aybra has been having some breathing issues.. Nothing too majour but it could eventually lead to some setbacks (think CPAP, vent, etc) So far so good though and she is still on just the NC with mostly room air. Today though she had a lot of episodes. Almost every 2 hours she was doing something SPO2 wise.

Also her bili levels have been creeping back up. She might end up back on the lights but Im crossing my fingers there.

She is still tolerating her feeds well and is up to 9ml/90 minutes every 3 hours now!

She was supposed to be weighed tonight. They did not weigh her when I was there so if they weighed her it was after I left and everytime I try to call and check on her I cant get anybody on the dang phone!! With the amount of milk she is taking now she should be gaining great.. but then the breathing issues have me a little worried... However she looks really great... looks like she is putting on weight especially in her face. Even the nurse tonight commented on how great she looked and how it looked like she had gained a lot.

Ill update again in the morning with some pictures and a prayer from her first prayer bead.

What are prayer beads, and where can I send them?

2008-04-13T22:59:00.001-07:00

A few people have asked this so I thought I should answer on here as well.

Prayers beads are like rosary necklaces. Instead of holding the rosary necklace and praying the rosary you hold the beads and pray with them. Basically they are beads with good energy/prayers attached to them.

Any bead will work. It does not have to be anything fancy.

The address to send them to is

Schulist for Aybra
2300 Rebsamen Pk Rd A107
Little Rock, AR 72202

4.13.08

2008-04-13T19:27:00.000-07:00

Look at my pretty bow!

Oh no Mum! What are you doing?!? Dont undress me!

Actually, Mum.. I kind of like being naked

Waaaaaaah! Dont put more clothes on me.

Ok Are you done now?

No Mum! Not more pics!!!

Ahh. Much better!

4.12.08

2008-04-13T00:06:00.000-07:00

Not too many changes medical wise.. She went up on her feeds to 6ml but she didnt really tolerate the increase. She kept having residuals and her TPT tube kept occluding.. It *seemed* to be placed right though. She is having an X-ray tonight so they will check to be sure.

I got to Kangaroo her again today. She did great. There was a few little desat episodes but for the most part she tolerated it well. She got to stay up for 3 hours!

To pass some of the time I made her a little skirt. The nurse was super tickled with it and had to take some pictures. She also had to call in other nurses to see it. The night nurse printed the pictures off and made these signs. Nevermind her name is spelled wrong.. The pages are adorable. Alos NICU made signs and stuff but never anything like this. Me and sister always made him cute signs to hang up. Those following from PreemiesChat might remember what his ITU walls looked like with all of the beautiful cards they sent him.

Today was the first day Ive really seen her awake.. She is the typical preemie sleeping the day away but today must have been special since she stayed up a lot. She had her eyes open and was just looking around. I got a picture with her eye open tonight. And one of her sleeping :)

And one with Nanny!

4.11.08

2008-04-11T22:27:00.000-07:00

Aybra news!

Tonight (the 11th) she lost a bit of weight. She is at 930g.. She is being weighed every other day now.

She is up to 4ml every 3 hours TPT.

Im in the process of making her a cute little skirt. Ill be sure to post a picture when I have it all done. Its so tiny.

I did a horrible horrible thing tonight. I put J&J lotion on her :( (more detailed info on why its so bad here) It was the only thing she had at the hospital and she really needed something. Tomorrow morning Im taking her something better. I already had them throw out the J&J wash but I forgot about the lotion :(

Videos from today to be posted later.

C-sections increase the risk for Postpartum Depression

2008-04-11T00:29:00.000-07:00

Im certainly not surprised by that... Do I have PPD? No. I dont think so, but my world has crashed one too many times this year. I have handled everything well so far... Now I just feel sad... like how much more can I take.

Forgive me for ranting but...

Wow.. Is there any other word? Just wow.. Im numb... Hurt, sad, and still just..shocked. Things were going great. Or I thought things were going great. He is gone. Yes. Eden left. Back story a little...

He came and visited me in the hospital on Thursday the 3rd.. Friday I didnt see him or hear from him. Saturday he called me but I missed the call. Sunday he called.. He was very brief, very distant. He normally talks for a while, just asked how the baby was doing and then rushed off of the phone.. Monday I ran into him at the hospital. I asked him if things were sorted. He said they were. He gave me a hug. I hugged him back and told him I missed him. I told him he was a very hard man to get ahold of. I had been trying since Friday. I had sent him messages and tried to call his phone. No answer. No reply to my messages. Nothing. I told him I missed him and just wanted to spend time with him. Well in Aybras room he acted like things were fine.. Shift change was about to happen so I walked with him out. I was going to pump anyway and the pump room was on the way out.. Well I ended up walking him to the elevators. I tried to show affection. He showed me nothing. He wanted me to go outside with him. While waiting for the elevators he made it very clear that things were not "ok" and that he wanted me to go outisde so we could talk more. I had enough trouble walking to the elevators. I was already in pain from that short walk I did not want to go all of the way outside and be in even more pain and I knew that whatever I was going to hear was not going to be good news so I just told him bye, went and pumped, then went into Aybras room and cried. I knew it was over then. Monday night I sent him some text messages and some YIM messages.. Asking him what was up. No reply. No answer. Sent him an email telling him I was hurt. Tuesday same thing. No answer, no reply. Wednesday I sent him an email asking him why he was ignoring me.. He finally answered me today:

"That being said I would not ignore you but I can't be what you may want me to be. I know this breaks your heart but I have to make a decision I will not be given so many chances next time. So I hope we can talk about our child and help guide her to be a good person, without necessarily being at loggerheads. I have shown you my committment I was there with you through the whole process, let me be there as she grows. We will find a way to work things out, I know that and I hope you will forgive me if I have caused you some anguish. I will always love you and I will be there for you. I may not really have helped much financially but I think things will look better and I will help you if you let me do that. So I cant ignore you."

The whole process? Are you kidding me. This "process" is still going on. My little girl is still in the NICU. She is doing fantastic but we are not free from problems yet. Committment? Since when is committment leaving somebody when they most need the support. Committment is sticking it out even when things are tough. Sure, he came and saw me in the hospital almost everyday that I was there.. He even spent the night but now that things have gotten tough he has left.

And love? Correct me if I am wrong but you do not love somebody if you can hurt them how I have been hurt. I told him so many times the past month that I loved him and everytime I got no response. Perhaps that is because he did not love me.

All I want is a little family. My family. Instead I have my sister sleeping with Alo because I can't take care of him right now. I have a child in the hospital and now I have no SO. My family is broken. I can't even hold my child because the pain from the c-section makes it unbearable. Kaia understands as much as he can but he still doesnt "get it". He wants me to pick him up and play with him and I cant. I cant even drive myself to the NICU. Im having to rely on my BIL for that.

All I want is my childs father at the NICU to see her and to support me. I dont want another child growing up without their father. Its bad enough that Kaia will NEVER have a father and now Aybra is on the verge of having a father like Alo's. I dont see things getting better from here. I imagine he will slooooooowly start backing out of her life until he is completely out of the picture. All I want is for him to be there.

I want to go back to being pregnant and forget this whole birth experience. My baby was not supposed to be ripped out of my stomach 3 months early. What happened to the perfect birth? To everything I planned? I made sure to put some of the most important things in my birth plan regarding a c-section if I had to have one... like announcing the gender and even that was ripped away from me. Am I not meant to have a nice birth?

Am I not worthy of having a child that doesnt have to spend time in the NICU. Is my body that bad that I can not carry a child to term. Now I have these horrible scars, physically and emotionally from the worst c-section possible. I am in pain. I can't sleep at night from the pain.

Around 3am last night I called the NICU to check on Aybra.. The nurse asked me if I had gotten up to pump and I told her no I had not been to sleep yet. She asked me why and I just told her I couldnt sleep. How can I tell her that I cant sleep because I am in pain and that Im having a nice little pity party because Im a single mum.. yet again.

I have turned into a prescription drug whore. Ive never taken this many pain pills in my life but I am living on the ones I have now. I am taking medicine around the clock for the pain but it does not go away. The emotions are torture. My body failed. I failed. And now my baby is suffering. All of my babies are suffering and I am too.

I will never be pregnant again. I will never have the perfect birth. Thanks to my lovely hacked up uterus I will never have a VBAC. I will never even be considered a candidate for one and I refuse to have another c-section. All of this because I got involved with the wrong man. A man that I thought was different.. A man that WAS different at first.. But things changed quickly. And now I will always be reminded of that. I will never be free of these scars.

Now.. Back to the regularly scheduled Aybra updates... Kudos to you if you made it this far. I never intended for this to be so long but I had to get it out.