6.27.08-2

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

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

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

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

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

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

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)

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..

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)