Friday, May 30, 2008


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.

Wednesday, May 28, 2008

HUS Results Minus dictation...

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


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.


Sunday, May 25, 2008


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:


Friday, May 23, 2008


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


Wednesday, May 21, 2008


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)


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


Tuesday, May 20, 2008


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!!

Monday, May 19, 2008


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


Wednesday, May 14, 2008

Kaia is just the best

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.


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.



Monday, May 12, 2008


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



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.

Saturday, May 10, 2008

5.10.08 Stepdown Unit!!!

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!)