Thursday, January 31, 2013

6a.m.

Aubrey had two more little episodes early last night like the one she had while I was there yesterday.  They were right after her 6p.m. and 9p.m. feedings finished.  I think her belly is just more filled than it's ever been and it's shooting back up and choking her.  Not sure what this will mean--I guess I'll find out today if this changes the plan of "just wait and see what happens" or not.  She did well the rest of the night; the nurse said she slept pretty well.  I'm glad she's sleeping at night, because goodness knows she gets woken up enough during the day with people coming in and out and bothering her.  If I get there and she's sleeping, I just sit and watch her and let her sleep.  Isn't there an old saying, "never wake a sleeping baby?"  She might have to be woken up to eat in the future, but I'm not going to wake her up just for the sake of waking her up.  I'd be ticked if someone did that to me. ;)  Oh yeah--she weighs 6lb 7oz.  We aren't sure if there's a discrepancy between the scale at the old hospital and the scale at the new one...we'll just have to see if she keeps gaining like she has the past few weeks.

It's the end of January already?  Where did that month go?  It seems like I was just wondering what happened to 2012.   We've been in the hospital for 103 days and we're still a week away from Aubrey's original due date (well, as of yesterday).  The doctor from University that has been with us through this whole process called me yesterday.  I knew it was him before I answered, so I just said, "hey, what's up?"  He said, "hey, it's me.  I told you I was going to call and check up on you."  It's both comforting and a little depressing that we don't have to identify ourselves to the other when we answer the phone.  Anyway, he said he was glad that they were trying to feed into Aubrey's stomach and that she was getting looked at with a fresh set of eyes.  I think maybe everyone at our original hospital was a little scared to try some of the things that the new doctors are trying because they knew her history so well and what happened the last time they tried feeding her stomach (lots of milk shooting out of the nose and a blue baby).  He said he knew it was getting so hard to be patient, but just to keep at it for a little longer.  I'm trying.  What else can I do?  What else have I ever been able to do during these 103 days?  I can say quite honestly that I don't care how long it takes--I just want Aubrey to be ok.  But please, God, make it sooner rather than later, would ya? :)

-Keli


2p.m.

I met the nurse for today at the door to the milk room (they have a room where we drop off our breast milk with the person that works there and makes up all the feedings for the babies).  I was dropping off my milk and she told me that Aubrey wasn't getting breast milk now...they were going to start her on a rice formula to try and help with the spitting up.  It thickens up when it hits the stomach, so it won't shoot back up the esophagus as easily as thin, light breast milk.  She had been having her little episodes after her feedings, so they're trying this to see if it will help.  It makes me really sad that she's not getting my milk, especially when I know it's helped her grow so well (and that I've kept up the pumping for so long).  Maybe she'll be able to go back to it eventually, but in the meantime I really do hope this rice formula makes things easier for her.

I held her for a long time while her feeding went in, and she finally went to sleep and slept hard.  She was just wiggling and waking up when the ultrasound tech came in to look at Aubrey's brain.  They just wanted to look at what was going on in there since the doctors at the new hospital had not seen one of her ultrasounds...and it's been a while since she had one.  Hopefully everything is fine there.

Oh yeah---I forgot to add that the speech therapist came this morning and tried the bottle with her again.  She took all 10cc that they tried to give her!  Good girl!  But then the lady tried to burp her and she got choked and her sats and heart rate dropped. *sigh*

-Keli

having her big, pretty brain looked at on an ultrasound

7p.m.

She seemed to do well this afternoon with the rice formula--no spit ups or episodes.  I held her again and she was pretty wiggly for a while, then went fast asleep.  I was able to put her back in her bed before the nurse started her feeding and she kept on sleeping.  I didn't want to have to move her when her belly was full and get all that sloshing around in there.  The nurse turned her to the side she doesn't like to sleep on (you can tell she favors one side--her head is flatter on that side and has a little bald spot) and tucked her hands inside the blanket; she got all mad and wiggled back to lie on the side she likes and got her hands loose.  Figures.

-Keli

she's got me right where she wants me.

Wednesday, January 30, 2013

6a.m.

Another episode-free night on the books.  The nurse said she de-satted several times, but I told him that she does that...she holds her breath when she stretches or when she's filling up her diaper.  He said she gagged herself on her pacifier once--she sucked it in a little too far and that gag reflex went off.  Poor thing--it's so sensitive.  They increased her feedings a little bit; they are slowly working her back up to the amount she was getting into her intestine.  She's doing ok with it in her stomach still so far.  Keep it up, baby girl!

-Keli

2p.m.

Feisty Pants keeps making strides forward.  When I got there to see her about lunch time, the nurse had taken her cannula out of her nose and she hadn't been getting any extra oxygen or increased flow since 9:30a.m.  She was holding her own and keeping her sats in the upper 90s for the most part, which is where they are supposed to be.  She dipped a few times of course--she tends to hold her breath when she wiggles and stretches and when she's filling her diaper, but they always came right back up.  I held her while she got her 12:00 feeding; she alternated between dozing and wiggling until the feeding was complete.  Once her belly was full, she went right to sleep.  I'm pretty sure she has decided that she doesn't like feeling hungry and that it makes her rather grumpy (she gets that from her dad for sure).  I'm so proud of her for doing so well--even if she has to go back on the oxygen, the longer she stays off of it the better.  She's getting there.

-Keli

Sweet girl with no oxygen cannula on.  Such a beautiful face!

7p.m.

Well, the no-oxygen-cannula lasted until about 5p.m.  She was finishing a feeding, and I guess her belly was full because she spit up.  As soon as it ran out of her mouth I sat her up because I knew it was coming.  I called the nurse, and sure enough, down she went.  Her heart rate went down to about 90, which isn't too bad, but her oxygen sats went down to about 38%.  The episode didn't last very long, but we know for sure it was caused by reflux.  The nurse put the cannula back on, but it's still at the lowest possible setting.  The nurse practitioner said they wanted to leave it there just in case she needed some extra oxygen should she have another episode. 

Both times I held her today, she went to sleep.  The nurse said that's just about the only times she slept all day.  I think she likes me. :)

sweet little hand...her fingers don't look quite as long as they did when she was born...now that she has some meat on her bones.

Tuesday, January 29, 2013

6:30a.m.

Baby girl had a good night in her new place.  The nurse said she slept just about all night; he had to wake her up to change her diaper.  She spit up once but didn't have any episodes.  She was fed breast milk into her stomach every 3 hours.  I hope the stomach feeds continue to go better than they did the last time...milk shooting out of her nose isn't cute.  But, that was about a month ago--she has grown and matured so much since then.  I'm praying this works.
 
So yes, I was totally bummed about the surgery not being the answer to Aubrey's problems yesterday.  I guess I just had my hopes up too high that there would be a clear-cut solution.  So much of what has happened has been in the gray areas--nothing black and white.  It's making me crazy that we're just back to sitting and waiting...I know the new doctors are going to do some more tests, but really we just have to wait and see what Aubrey does.  Still, after 101 days in the hospital, I have trouble with patience.

-Keli

1442 hours. 2:42 pm

Cece, otherwise know as Claudia, Keli's mother, was in with Aubrey earlier while she was being fed. While the tube was filling her belly cece put her pascifier in her mouth and she sucked on it for about 10 minutes. That was good to associate milk with sucking. Then she got tired and spit it out. That's ok.

She has been having a very good day. She is continuing to take about 42 ml of breast milk in her belly and hasn't rejected it yet. That's great. They will slowly increase those amounts and get her up to about 50ml. No plans to change to thickened formula as moms milk is the best thing for her.

The speech therapist is coming by to try a little bit of milk thru the bottle to see how she reacts. Plus she will do some other tests and exercises and see how she does.

Next week she will have an EEG or a brain scan to see where we are at there.

She is back on the iron and daily vitamins.

Her oxygen is back down to 21% or room air, and its only a half a liter. They are keeping the nasal cannula on her so that if she has an episode they can turn her up and see more of what it takes to get her out of the episodes than just to bag her.

-adam

7p.m.

Aubrey continued to have a good day.  She stayed on feeds into her stomach; she spit up a little bit once and gagged a few times, but her oxygen sats stayed relatively stable--no dramatic drops or episodes.  The speech pathologist came by and worked with her.  She tried her with a pacifier first, and Aubrey got a few good sucks in.  Then she tried her with a bottle that had about 10cc (10 milliliters) in it; Aubrey was a little confused as to what to do with the darn thing at first, but she finally started to suck.  I think it surprised her when something actually came out of the nipple.  She gagged once or twice but did get a bit of a rhythm down with her sucking and breathing and swallowing.  She only took about 2cc (half a teaspoon) through the nipple, but the therapist said for one that hadn't ever bottle fed before it was pretty good.  She'll come back later in the week to show me some things to do with Aubrey and try the bottle again. 

We are still trying to get used to the new place and new people.  It's tough not knowing anyone; we know our nurse's name (and she's wonderful), but she won't be there every day.  I guess we went through this at the other NICU too, but it seems that we got to know everyone pretty quickly there.  As long as the new people take the best care of Aubrey they can, I won't complain.

-Keli

what do I do with this thing??

ohhhh...food...this might not be so bad!

.

Monday, January 28, 2013

0830 hours.

Transport team here now. They are packaging her now for movement.

She had a good night.

Adam

0900 hours.

We are at mcg. I know I know, it's not mcg but its written all over the place.

It was hard hugging everyone and saying goodbye but we did and we are here now.

Adam


1130 hours.

My allergies are playing havoc on my sinuses. Argh to them so I can't be in with her right now. They let us come back there and it is quite different than university. She is in a room by herself but it has a window. She is in that room for testing for infections and all. To enter that room we have to have gowns on and gloves. But so do the nurses. They are serious about germs. She is hooked up to nearly the same equipment as at university and stats are the same. The feeding tube is different so they had to pull it out and they will out their own in that is compatible to their equipment.

She is supposed to be enroute to the radiology unit which is on the 2nd floor. More of that later when I get more details.

I ran into another mother that had been at university when we were there that had a baby when we did. It was good to talk to her. I am sure we will see others here we will recognize.

Adam

1500 hours.

We have talked to some people regarding the surgery and are finally getting some answers. We are now in the radiology department in the hallway waiting for the next procedure. I forgot the name but its where they pour some contrast liquid into her and watch her through the X-ray machine and see how far she reflexes and if it really is reflux and all that. What this does is provide concrete evidence that the surgery is what will fix the problem.

Adam

1544 hours.

We saw the reflux. It wasn't just a little bit, it was a giant blob. Stomach is normal sized and intestines work. You could see the contrast liquid go down and straight into the intestines. Then it filled the stomach and shot up her esophagus. Now to talk to the surgeon about it.

Adam



1638 hours.

Quick meeting with dr. Surgery will be delayed for further testing.

More to follow after we talk to Aubrey.

Adam




1900 hours  (7pm)

Two emotionally exhausted parents are back home.

What a day. First let me back up and say that the first initial skin test for infections and MSRA came back clean. No more gloves in her room. We still have to gown up, but now we can touch her.

We had a long talk with the surgeon, Dr Pipkin. He explained the surgery in-depth to us and stated that he had the slot open for the surgery tomorrow, but that he wasn't totally convinced that what he was doing was 100% the answer to the problem. His opinion was to do some more testing to confirm that this procedure was going to fix the problem. He asked us what we wanted, we said we agree, wait and do more testing.

Here's the thing. All babies reflux. And we even saw the big blob heading up her esophagus. We can prove reflux. But is the reflux causing the episodes is the question. There could be other reasons, so let's take them out of the equation first. And meanwhile let the stomach grow a little more so that if we do find out that this surgery will fix the problem, the stomach will be big enough to do the wrapping.

(The surgery we are talking about is the tightening of the esophagus using a wrap of the stomach closing off the esophagus. Then insert a burp tube that will allow us to feed her and burp her. There are technical terms for all that but you get the point.)

Dr Pipkin has no evidence that she is gagging on lower GI stuff rather than upper GI stuff. She could be having problems swallowing her own saliva causing a gag and chicken neck reflex. That would cause an episode. And the episodes are so random that that causes a red flag too. The feeding now is continuous and there is nothing that changes, and she refluxes and overcomes it all the time, so why sometimes does she run out of oxygen and turn blue.

So they are going to do a swallow test. They are going to feed her breast milk in her belly. They are going to monitor what color the spit up is - clear, indicating saliva, or milky indicating milk. They are going to monitor her when she goes into an episode what caused it and what happens during it, and what brings her out of it. And some others but I can't remember.

The swallow test they usually do after she is full term. No word on when that test will be. But they have a specialist watch how she swallows and does analysis on that.

The milk in the belly is something else they are going to monitor more closely. Tonight they gave her a little less milk than she has been getting but all in her tummy. This should help stretch it out. It will be given to her over an hour and a half time span. Next, if she spits it up, they will give her a thickened formula (breast milk can't be thickened due to its makeup) over 2 hours.

All these different things are going to be tried and more information gleaned and a better assessment made. Dr Pipkin would feel better regarding the surgery when he has more information. We could still determine that surgery is the best answer and we will have lost no ground. If we don't have to cut on her, then lets not do it.

Me personally, I am greatly relieved. I just felt in my heart that this surgery was wrong for her. But I might be wrong.

Keli on the other hand, had her hopes up that this would fix all the problems. And now that there won't be a surgery, those hopes have been dashed, and she is very upset emotionally. I feel so bad for her.

I am so grateful for the Drs and staff at University Hospital. They have been calling MCG (or whatever that place is) and getting people to get information together and even schedule the surgery so quickly. The MCG Drs and nurses are always saying they heard from some one at University this or that. Even Dr Bartley, the Dr assigned to us at University, called Keli making sure that everything was ok this morning, and that he knew people at MCG that would make it ok if it wasn't.

So we wait.

Argh.

Adam

The bed used to transport Aubrey to MCG. It even has a seatbelt.

Still in the Giraffe bed, but that is only for ease of moving her around. They keep the heat on in case she gets a chill, but holding her is certainly allowed. Keli looks sexy in the gown.

So brave in such a big scary machine.

Children's Hospital of Georgia (of Augusta) which is part of Georgia Regents Health System (of Augusta), a Division of Georgia Regents University (of Augusta). Looks like MCG to me.

Sound asleep.

Sunday, January 27, 2013

Today is transfer day to MCG. I mean GHSU or is it GRU. Well actually it might be children's hospital of Georgia a division of GRU of Augusta. Anyways... We are waiting to hear that the transport team is here and ready to take her to the next hospital. It isn't far, only about a 1/2 mile as the crow flies. Last we heard it would be after lunch. So we wait. I offered to do a tactical walk all the way there but was denied. You know, the SWAT technique of walking while keeping your sights on target. I could hold her steady without bouncing her and keep it smooth. But they all smiled and said no.

Last night she had two episodes and weighs 6lbs 3 ounces. Her feeding level has gone up and she was alert for a while.

We got here about 0800 this morning and she was wide awake so we got to see her move her eyes all around. She grabbed Keli's finger at one point and grabbed so hard her fingers turned white for a while. She hung on a while then let go. Keli stuck her pinky finger into Aubrey's mouth to practice sucking and she did a few times. She is learning. She bit Keli's finger hard several times. It was fun to watch.

It's been a total of 100 days since Keli was first admitted. Time has crawled by so fast.

Adam

1300 hours 1:00 pm

Dr just notified that we will not be transporting today. Argh.

Adam


6p.m.

Just talked to the NICU clerk, and she said the transport team called.  She said, "I told them how upset y'all were!"  It's not that we were mad at the transport team, really--we know they have emergencies, and if our baby was the emergency we'd want them to bump everybody else too.  It's just that we had everything planned for Friday, then that got scrapped.  Then we had everything planned for today--Adam even took the day off--and that got scrapped at the last minute.  We had our hopes up and we had gotten our minds wrapped around leaving and then everything was up in the air again.  The two hospitals are about 3 blocks apart, so we're having a tough time understanding why they couldn't just pop over and get her and be done with it in about an hour.  I guess we aren't privy to all the info.  Anyway, the transport team now says that they'll be there first thing in the morning, which means 8ish.  We shall see. 

Aubrey had a good day with no episodes.  The nurse that had her today hadn't had her in a really long time, and she said when she unwrapped her this morning she couldn't believe it was the same baby because she was so big and filled out.  Looking back at pictures of her when she was first born, we can't believe it's the same baby either.  All the nurses are commenting on how awake and alert and interactive she is lately--she'll follow you with her eyes or turn her head towards someone that's talking or jump when there's a loud noise; all very good signs of development.

Let's hope tomorrow brings a peaceful transport!

-Keli

Saturday, January 26, 2013

7a.m.

I didn't go to work today, but I woke up at 6:15ish to pump.  I sent Adam a text to see if he had checked on Aubrey.  I sent him another one at 6:30.  Didn't hear back, so I figured he was busy.  I called the NICU.  The nurse said, "oh we just talked to dad a few minutes ago."  Oops.  Oh well.  They're so nice that they just explained everything to me again anyway.  And then Adam called me when I was in the middle of talking to the nurse.  Figures. ;)  Anyway, she had a good night, no episodes.  She desatted once while the nurse was weighing her, but she came back up.  She had a bath after a couple of diaper blowouts.  She weighs 6lb 2oz.

-Keli

7p.m.

Little miss had a good day.  No episodes.  Lots of sleeping since she apparently was awake for half the night.  Hope she isn't getting her days and nights mixed up like her shift-switching dad. ;)  My mom's parents came to see her today and we were able to get some 4 generation pictures.  They haven't seen her since shortly after she was born (my nana had pneumonia and was in the hospital herself for a while), so she looks like a totally different baby than when they last saw her in person.

We still aren't sure what time we're moving tomorrow.  I'm rather apprehensive about the whole process; I know the transport team has moved babies a million times, but never MY baby.  I'm just afraid she'll have an episode while they're moving her, even though I know they have everything they need to take care of that should the situation arise.  I guess, truth be told, I'm apprehensive about everything that's coming--the move, the tests, the surgery, the new place and new people.  But then I think about all the scary stuff we've been through so far, and I remember that this surgery is going to help Aubrey and I think we'll make it. 

4 generations

-Keli

Friday, January 25, 2013

7a.m.

Well, Adam and I had both planned to be off from work today so we could be with Aubrey for her move, but now we're both at work.  I'm a planner, and this changing stuff is throwing me off.  I guess, though, that the whole having a baby 16 weeks early should have cured me of the need to plan.

Aubrey had an ok night--she did have one episode (not one of the "bad" ones where she has to be bagged).  The nurse said she also spit up several times.  She gagged a couple of times yesterday but hasn't actually spit up in a while.  This just reinforces the need for the surgery on Tuesday.  She weighs 6lb 1oz.

-Keli

3p.m.

Aubrey's morning re-reinforced the need for this surgery.  She had two episodes this morning, one of them a pretty bad one. But then I was there for a couple of hours around lunch time, and she did fine the whole time.  I'll be back later so I can be there when Adam swings by after work...hopefully this morning she was just tired and this will be the end of the episodes for a while.

-Keli

7p.m.

Aubrey had a good afternoon and evening--no more episodes after the ones this morning.  She stayed awake with me for a while this afternoon while I read "Yellow Submarine" to her...but then she fell asleep about halfway through. :)  At one point, her oxygen sats dropped into the 60s and I saw her gag and get all red-faced.  The gagging means reflux is coming up, and the red face means she's either filling up a diaper or has gas.  Well, she got the reflux back down and then our noses told us that she filled her diaper. She tends to hold her breath when she does that.  They upped her feeding amount a little this afternoon.  The nurse went and got all of my extra breast milk that was in the freezer so I could bring it home since they wouldn't need it there anymore.  Just what I needed--MORE milk in my freezer. I barely had a spot to squeeze it all into.

I was told today that we probably won't know what time they are going to transport her to MCG Sunday until Sunday morning.  We had to say good-bye to more of our wonderful nurses tonight.  Sunday is going to be tough!

-Keli

she was awake while I read at first...

...then she got sleepy.

Thursdsay, January 24, 2013

7a.m.

Guess what?  We have a 6 pound baby. :)  Barely over 6, but still 6!  She had another good quiet night with no episodes...just a couple full diapers and a bath.  We should find out today what time we are moving to MCG tomorrow.

Yesterday evening as we were getting into the NICU and about to start our 3 minutes of hand/arm washing, there was a lady already there at one of the sinks.  She asked us how long our baby had been there, and when we answered with "almost 14 weeks" she asked how early the baby was.  I told her she was born at 24 weeks, and her eyes got big.  "My son's baby was just born at 24 weeks too!  How is your baby doing?  What does she weigh now?"  I told her she was doing pretty well, that she started out at 1lb 9oz and now weighed 5lb 14 oz (at the time).  This time her eyes lit up--she said her son's baby weighed that exact same amount and she was glad to hear that things would get better.

I hated to crush her little spark of hope, so I just smiled and said that I hoped things went well for them.  Yes, it's true that it will probably get better, but they have no idea of the road ahead of them--we sure didn't.  I wanted to tell her that they will be scared 100% of the time, even when things are ok.  That they will sometimes feel like running away screaming if they have to spend one more second in that NICU, but then when they do leave they will feel like they are abandoning their child and will be drawn back just as quickly as they left.  I wanted to look the mom in the eye and tell her that I know she is terrified and miserable and feels like no one on earth knows what's going on in her brain; I know she feels guilty for putting her child through this. She wonders that if something happens to the baby, will the rest of the family blame her?  I want to tell them not to give up, to ask questions and be nosy and talk the ears off of the doctors and nurses and be their baby's biggest fans.  That they have to stick together and not get upset with each other when stress makes them angry and anxious and unsettled. 

I probably won't get to tell this new family all of that--I'm not sure I would have heard and comprehended it had someone tried to explain it all to me right after Aubrey was born.  Each NICU experience is so individualized--there really is no way to compare one family's journey to another.  We still aren't done with our long road, though maybe we are seeing a light at the end of the tunnel.  I'm praying that the three of us get out of this dark tunnel soon and in one piece and that it means we can finally go home as a family.




-Keli

her eyes were a little red after they were checked

8p.m.

What a day.  Aubrey had a good one--no episodes.  The doctor caught me right as I got to the hospital and said that moving her to MCG tomorrow wasn't a sure thing--the transport team might have to go somewhere else to pick a baby up instead.  So then he called me right after I left the hospital to tell me that the move date was definitely being changed, and we'd move on Sunday instead of Friday.  He said they weren't going to do any tests on Aubrey until Monday, so we might as well sit and wait at University with people we know. ;)  So, we sit tight until Sunday, which is fine by us.  We had a tough time leaving the NICU tonight as the nurses that were there weren't going to be back until after we have moved.  They all hugged us and told us they loved us and would miss us, and that we had to bring Aubrey back to visit (and that I could still make them cookies if I wanted to). 

Adam claimed the heat lamp when Aubrey was done with it

The speech therapist came to work with Aubrey while I was there this afternoon and she showed me the exercises she does with her so I could do them too.  She stretched her lips and rubbed her gums and cheeks and tried to get her to suck on her finger and a pacifier.  I know Aubrey can do the pacifier thing because we've given her one before, but she was so put out with the lady's fingers all in her mouth that she didn't want to do anything for her.  After the lady left and I was snuggling with Aubrey, I put my pinky in Aubrey's mouth and she sucked on it just like she's supposed to.  I think she'll get it when she needs to.

do the wave!

The eye doctor came to check her eyes tonight.  He said that the retinopathy of prematurity had not progressed to where he thought it needed surgery.  They'll check her again when she gets to MCG, probably in a week. 

You know how we were sort of worried that we hadn't heard Aubrey cry?  Well, she cried twice today!  The first time, the nurse had her on her tummy with her bare little tush sticking up in the air.  She has a couple of red, raw places on her bottom and she was letting it dry out.  She had the heat lamp on her to keep her warm, and apparently Aubrey got too hot and let everyone know it.  Then the nurse said she cried again while the eye doctor was checking her tonight.  I didn't get to hear her either time; I hate that she cried, but I'm so glad to know that she can and will!  I guess she's just used to people messing with her in all manners and at all times, but she finally found something that made her mad enough to cry. 

-Keli

Aubrey's foot on Adam's pinky: on the left, October 21, the day after she was born; on the right, Jan. 24

Wednesday, January 23, 2013

7a.m.

The nurse said she had a very quiet night--no episodes.  She said Aubrey was awake for a long time and just looked around and checked everything out.  She gained 20 grams but is still 5lb 14oz.  We like quiet, uneventful days; those are just what we need to make it through to Tuesday.

-Keli

3p.m.

Little bit had a quiet day, too...well, right up until the time I got ready to leave, of course.  Mom was there and she was helping me untangle all of Aubrey's lines and cords to get her back in the bed, and we got the big tube to the nasal cannula up too high.  Since she is on the heated high-flow right now, water condenses inside that tube.  When it got up too high, water went shooting through the cannula and I watched it go into her nose.  She got choked and had a little episode, and it was unpleasant, but it wasn't as bad as we've seen thankfully.  She was fine again just a short minute later and looking at all of us like, "what's going on with y'all?"  

The speech therapist came to work with Aubrey while I was there.  Aubrey is not fond of the nice lady putting her fingers all inside her mouth.  The therapist massages and exercises her lips and works to help Aubrey get the sucking pattern down that she will need for bottle feeding eventually.  Aubrey likes to stick her tongue on the roof of her mouth and push the therapist's hands away, the little stinker.  The therapist did say that Aubrey did better this afternoon than she did this morning.  She'll get it.

The doctor said he would get in touch with MCG tomorrow to find out what time they would be coming to get her on Friday.  We're going to miss all of our nurses so much--they've all been so wonderful. 

-Keli

the speech therapist trying to get her to cooperate

burrowed down in her blanket

7p.m.

Aubrey had a good afternoon and evening.  We went back and hung out with her; Adam held her and read books to her.   She was not very impressed with "Big Dog, Little Dog." :)  We had to say goodbye to some of the nurses that won't be there tomorrow or Friday--it was really sad!  We love all of them, and it'll be hard to get used to a whole new set this late in the game.  They all made us promise to come back and visit and to let them know how Aubrey is doing.  One who lives nearby even offered to come and babysit for us in the future. :)

-Keli

reading with dad

Tuesday, January 22, 2013

7a.m.

One episode last night, and it wasn't one of the bad ones thankfully.  She just had to have her oxygen turned up for a few minutes.  Aubrey got a nice bath, and the nurse said she dressed her in a preemie onesie--for the last time.  She said Aubrey's legs were just about to stretch it to the limit.  Her newborn onesies are still sort of big on her--her feet aren't exactly in the footies and the sleeves are too long.  She weighs 5lb 14oz.  Adam and I are meeting with the doctor at 11:30 today.

-Keli

that reflux tastes nasty. :(

5p.m.

Alrighty.  So.  Lots of information today.  The doctor met us at noon and said he had talked to the surgeon's nurse at MCG and they asked for Aubrey's correct name and info, which meant moving her was in the works.  He came back a little while later and said that they wanted to move her to MCG on Friday, do tests to check her reflux on Friday and/or Monday, and the surgery is scheduled for Tuesday (no exact times yet on moving or surgery).  The surgery is called fundoplication, and it involves wrapping a piece of the diaphragm around the esophageal sphincter to tighten the sphincter so the milk/food won't come back up the esophagus.  It's a laparoscopic procedure--just a couple of little holes will be needed--they don't have to cut her open (thank the Lord).  She will also have to have a gastrostomy, which is basically a hole in her side with a tube to the stomach that they can feed her into and that she can "burp" out of (she won't be able to burp out of her esophagus at first because that sphincter will be so tight).  They'll teach her to take a bottle after that, and she'll be able to get rid of the gastrostomy eventually.  Please say a prayer that her episodes hold off until she gets the surgery, that the move and surgery go well, and that the surgery ends the episodes.  She'll have to stay at MCG for them to feed her and monitor her, and she'll come home from there (we had asked about going back to University, but once they move they usually stay at MCG). 

just look at that little belly!

The doctor said that we don't know for sure if the episodes are doing any damage, but he doesn't think so.  However, he called those bad episodes "life threatening events;" if one happened when she was at home with us, there is a good chance we would be doing CPR on her and she could die.  We asked if there could be something I'm eating that is transferred to the milk that could be making the reflux worse, but he said probably not.  He said he's proud of me for sticking with the pumping breast milk--he said he didn't think she would have done as well as she has if she was getting formula (that made me feel good because this whole pumping thing is tough). 

that looks like trouble. ;)

He said that they probably should have talked to us about this earlier, but we had to be aware that, because she was born SO premature, Aubrey is at a high risk to have developmental delays.  We knew that already.  He said that there is no way to know right now how those delays might manifest in the future.  She could be perfectly normal, or have delays that could range from walking and talking later than full-term babies to learning disabilities to cerebral palsy.  We'll take her to work with physical and occupational therapists and do whatever we need to do to help her if or when the time comes.  I can't think about the future yet--I just need her to get over the "life threatening events" and learn to breathe and eat and come home. 


-Keli

Monday, January 21, 2013

7a.m.

So after having a good day yesterday, Aubrey didn't have such a great night.  She had two big desats where she had to be wiggled and jiggled, and then one bad episode where she had to be bagged.  I'm just at my wit's end here.  What are these episodes doing to her?  Are they causing any permanent damage?  I'd really like to see the doctor today.  Something has to give.

The nurse said she had an absolutely amazing diaper blowout that went up her front, her back, and out the sides.  She said, "sorry about her little sleeper.  It needs washing."  That's ok.  It's what babies do, and I'm glad she's doing something normal.  She weighs 5lb 13oz.

-Keli

7p.m.

 The doctor called me this morning since he wasn't going to be in the NICU this afternoon when we got there.  He said he got in touch with the surgeon at MCG and was told that they couldn't take Aubrey until at least next week.  If they do take her, they'll do dye tests first to check out her reflux and see how bad it is before they decide on surgery.  The surgery would be laparoscopic (minimally invasive--a small hole as opposed to having to cut her open) but would be a little more difficult than normal because her stomach hasn't had food in it and is very small.  The doctor said we know the majority of her episodes are caused by reflux because we see her gag and spit up.  What we don't know is if some of them are still caused simply by her being so premature and her brain not being as developed as it would have been had she gone full term.  We're supposed to meet with the doctor tomorrow--we have lots of questions for him.

She had a good day today--no episodes since last night.  They put her back on the heated high-flow nasal cannula--she was on that before and it adds some pressure to the oxygen going in.  The doctor said he was just trying to think of anything that might help give her a break.  Another diaper blowout equaled another peed on outfit...she likes to keep the nurses on their toes. ;)

Sunday, January 20,2013

1100 hours. 11:00 am

She had two episodes during the night but they weren't all that bad. Her weight is up to 2630 grams. I will convert that later. Poor Siri wasn't able to figure it out this morning yet. Reckon she had not had any coffee. We sat with her before church this morning and she looked cute. And she did well. She only dropped her oxygen one time and recovered it on her own.

We will spend more time with her later. Today we are having a family get together in remembrance of Christen.

Adam.

1212 hours.

I stand corrected. She is not being moved to MCG. She is being moved to GHSU, I mean Georgia regents University of Augusta children's medical center. I know, same thing.

(For those not from around here or familiar with my dry humor there has been a local controversy regarding the name of a local hospital. Since 1928 it was called medical college of Georgia or MCG for short. Then it was changed to better streamline things in the last couple of years to Georgia health sciences university. Then to make things better a new director was hired and he decided to combine a local state university and GHSU and rename it to Georgia Regents University. But locals became so upset regarding the name change and that it didn't include the name of Augusta in the school name it was changed to GRU of Augusta as of this year. Still waiting to see if they are going to change the signs on the buildings from MCG.)

It's a great hospital with great children's doctors and specialists.

Adam

7p.m.




 Aubrey had a good day.  The nurse said she dropped her sats once but got it under control on her own. She had a great big gag/cough while we were there this afternoon and her sats dropped into the 50s...her heart rate stayed ok though, and she got everything back down and worked it out.  We both got to snuggle her for a while too.  She is so dang sweet and I can't wait to be able to just hold her as long as I want without any tubes connected and without worrying that she's going to turn blue on me.  She has so many wonderful facial expressions and baby noises.  I can't get a video to post on here, but I wish I could so y'all could see and hear her in action.

-Keli

They also upped her feeding. The biggest syringe is completely full so now they are filling more of them per day. She is using all breast milk and only a little fortifier giving her 2 extra calories per syringe. Now they are giving new syringe every 3 hours.

The phenobarbital was also increased.

Tomorrow we will chase down the dr and talk with him about what the next step is. Some inside information was that there are sometimes that they return babies back to university from GRU. But rarely. I think they should because they have had Aubrey for all this time and know how she responds to everything. So they should keep her. But then again is she recovers easily from surgery she could be sent home quick. We have lots of questions that I hope we can post the answers here.

So many prayer requests have been answered. No infections, good growth and the iv's held. Now we just have to pray for no reflux.

Adam

Saturday, January 19, 2013

8:30a.m.

We've been in the NICU 13 weeks now.  91 days.  I called to check on Aubrey, and she had just had a bad episode.  Are these things never going to end??  They are getting really, really old.  I just wish I could do something to help her, to make them stop.

-Keli

1420 hours. 2:20 pm

I was in training and Keli sent me a message. It wasn't only the content but how she said it. I went enroute immediately to the NICU.

Aubrey is having too many episodes. Total of 3 today and two of them they had to bag her. Dr is looking into moving her to MCG for surgery to tighten the muscle above the belly keeping the milk in. Don't know a time frame of when it will happen.

Of course mommy and daddy are having rough day too.

Adam.

Thinking about something...hopefully it's about how to breathe.

Poor Adam needed a nap.  He says he was teaching her how to sleep.

episodes make her sleepy.

5p.m.

Yeah, so today was not little bit's best day.  She had 2 episodes before I got there and then one right when I got there at 11:30a.m.   It was just too much.  I think this is the first day I've cried in front of one of the doctors. He came to tell me that he was going to talk to the doctors at MCG (the other hospital in the area with a top-notch NICU--it's also a med school so they have tons of specialists like pediatric neurologists and pediatric surgeons) and see what they thought about her.  She did ok the rest of the afternoon, but her oxygen was turned up higher than normal.  Something has to give in order for us to be able to take her home in the near future--the milk isn't even in her belly yet and she is refluxing like this.  Milk came out of her nose twice today.  The doctors were trying to give her a chance to grow out of it; maybe by giving her time the muscles keeping the milk down would work on their own as she got bigger and stronger.  It seems obvious now, when she would be 37 weeks gestation, that isn't happening.  So, now the next step.  I just want something to help her.

-Keli