In the PICU

I have been trying to write this update since Tuesday but was unsuccessful because I had no idea what was going on and all I could really tell anyone was that she was in the PICU. We know more now, so here we go.

Friday I brought Bailey to the ER for excessive sleeping and grouchiness. These are classic symptoms of a shunt malfunction. Because her fontenelle (soft spot) was soft they blew me off as a paranoid mom and sent me home after a CT scan that I demanded. They said she was absolutely fine and might have had a virus.

Over the weekend she wasn't sleeping well at all and was getting more grouchy. By Sunday evening she was showing signs of having a headache and light sensitivity. She started having trouble keeping her food down. She was crying and staring off into space and we were unable to regain her attention by sight or sound for several minutes at a time. It just got worse through Monday but every time I thought about bringing her in she started acting fairly normal and smiling.

Tuesday I decided to call her neurosurgeons office and was sent to the ER again. This time her surgeons met us in the ER. They ordered a CT scan that showed a slight evevation in ventricle size since Friday. Her fontenelle was still soft so they thought she was fine but tapped her shunt to test her csf just in case. They found an elevated white cell count and admitted her for observation. As a precaution they started inundating her with antibiotics. On Wednesdays morning nothing had grown in the cultures making it unlikely that she had an infection and imaging of various types showed no mechanical error of her shunt. What they did find was that the white cells were a particular type that generally indicates an allergic reaction or a very serious illness. They started her on steroids to combat it. The plan was to keep her here and on steroids over the weekend in hopes that it would suppress the immune response.

They kept teasing her with food. The would put her NPO (nothing by mouth) at midnight and not allow her to eat until the next day, sometimes well into the afternoon, and then put her NPO again at midnight or two a.m. She was miserable and grouchy. This is why they kinda ignored her grouchiness until Thursday night when she screamed uncontrollably for hours and hours.

The nurse was at her wits end and so was I. I had no idea what was hurting or how to help her and it was killing me. I was crying with her by the third hour. The nurse wrote some detailed notes about what was going on and started watching her pupils. They took her for a new CT Scan.

By nine a.m. Friday the surgeon was here informing us that her shunt was indeed starting to fail and that she was most likely allergic to the antibiotic coating on the shunt tubing. By nine-thirty they were wheeling her off to surgery. The entire shunt system was removed and replaced.

When she woke the first time she was already doing better. She smiled and played with her Daddy. She hasn't cried all night (normal for her not to really cry) even though she still can't eat and is very hungry. Her pupils are normal and she looks great. :) .

I am so glad I pushed for her as this could have gone really bad really fast had I listened to the ER doc on Friday. Watching her leave for surgery and watching as she woke up and was hungry and unable to feed her was and is torture but at least I know she is well and happy. A shunt failure can be devastating within hours of its occurrence. I am grateful to God that I had the intuition to know that something really was wrong before it showed up on tests.

So we now wait to see if she will go home today. There is a new DR. involved in her care now (infectious diseases) that may keep her here over the weekend as she investigates the source and cause of the white and red blood cells found in her CSF.  For now though all is well and we are hanging out and waiting.

2 Months and Amazing

2 months already!!!

So as yall know I prefer to end our posts with good news. That being the case we have to start this post with the bad news...
Bailey is having severe sleep apnea episodes. The alarms go off sometimes 3 times a night. Other times we go a week with no problems. We thought the apnea was being caused by the fluid on her brain. It is not... but that brings us to the good news.

Baileys brain is looking great. The neurosurgeon is very happy with yesterday's ultrasound. Her ventricles are within a normal range and she isn't showing any traditional signs of shunt complications.

This little girl has had an amazing couple of weeks and has learned some cool new things.  She has learned the pincher grasp. Yall most likely saw her picture on FB for that one. She has started talking (babbling) to her toys and sings with me when I sing to her. She has learned to hold onto our shirts as she is falling asleep so that we cannot lay her down without waking her. She is doing the crab scoot on her playmat to get to toys she wants. And then there is the super amazing thing she did....

SHE ROLLED OVER!!! From tummy to back. She has only done it once but she worked really hard to do it and her PT was really surprised that it didn't scare her, but instead she looked happy and proud. She wanted to do something and worked hard to make it happen! :D

This next bit isn't really an accomplishment for her, but she is doing it way early. This little doll is cutting teeth. 5 of them. 4 on top and 1 on the bottom. They are actually visable. Not just chewing and drooling but 5 visable teeth pushing on the gums. This is making her a bit cranky but for the most part she is handling it very well.

It's amazing how much she has learned and accomplished since our last update. Her head control is improving greatly and she can hold her head unsupported now for short periods of time. She uses her head to track objects now and not just her eyes. This is especially cool because it's something healthy normal 2 month olds do, it's not common for a baby with her diagnosis to be able to do these things yet. There is usually a marked delay due to head weight and size which causes weakened neck muscles in early development. She is powering through it all to accomplish whatever it is she has her mind set to do at the time. The stubbornness is strong in this one. I love it now (might be in big trouble in a couple years lol) and she smiles so big when she does something she was trying to do. Doesn't matter if the goal was to touch a toy with her right hand (huge deal) or get me to pick her up, once she does it we get a huge, full face, ear to ear smile. Makes my day every time.

We are so excited and proud of her and so very grateful to God for blessing her with the strength and will to do all of this. We are encouraged and excited to see what she will accomplish next.

On top of accomplishments she finally got to meet her cousin, and her Great Aunt and she seems to have made a new friend at church (a sweet little girl about 2 months older than her). She really seemed interested and happy around all of them. She is such a sweetheart and so much more social than her Mommy and Daddy.

She is doing her PT twice a month and now they have added OT once a week to help with the order of operations for eating (she gets confused sometimes) and to help with the fact that she doesn't like having her bare skin touched. (Hmm aversion to being touched... might have gotten that from me... NAH) The exception to this is bath time. She loves baths. Her last bath I allowed water on her face and she loved it. I have got to get her swimming soon...

Oh and speaking of eating; This little one weighed in at 9 pounds yesterday! She is growing like a weed and has moved into 0-3 clothes. She is too long for newborns now.

2 month pics will be up in a separate post hopefully tonight or tomorrow depending on how much she wants to cooperate. I am trying for tonight as I don't expect much cooperation tomorrow as she has her shots first thing in the am.

6 weeks

So Bailey is 6 weeks old. Not much new to report health wise. Her advancement is on track which is great news in it self.

She is rocking at just about everything she is supposed to be doing for her age. She is meeting or exceeding all milestones with the exception of making oohs and ahhs. She makes a lot of noises and will growl at you (taught by Daddy lol) but isn't making the "right" noises yet. She makes the faces for the noises but no matching sound. I think being able to mimic a growl is much better than oohing though lol.

She really is doing well and is starting to understand how to get things to her mouth, trying to hold her bottle and pacifier, how to reach and grab things she wants (not real coordinated yet but makes a great effort). Her head control and neck strength are really coming along and she is able to hold her head up for a few seconds and put it down gently once. If she tries a second time she flops down but she is showing great control, and more than anything, great will. She knows when she wants to do something and works hard to try to achieve it. I get the joy of praising her effort at least twice a day.

She is a happy baby generally and has a smile that lights up the whole house. It makes my day every time I see it. Unfortunately she won't allow me a picture of her gorgeous smile. She seems to be camera shy. I just can't figure out where she gets that from...

Awesome news

Today Bailey got an ultrasound and saw her neurosurgeon. We were given awesome news. Her shunt is working! Her ventricles are back to normal size and her brain matter is almost totally back in its proper place!!! And she got her stitches out of her head. :)

I knew it was good news as soon as the picture of her brain showed up on the screen. I had to ask where her ventricles were instead of where her brain was. It was such a feeling of relief and joy to see her brain on that screen.

No change in the missing white matter but the surgeon doesn't seem worried, he says that baby brains are elastic and can rewire themselves.

With her doing 4 month old stuff already, there is no reason right now to think her brain won't rewire and just work without that section I think.

He discussed her head shape with us and we are working on getting her to lay in a way that will help to reshape her head to a more rounded shape. If we can't successfully do it, then they are going to look into putting her in a helmet at 4 months to ensure her plates get back to where they belong before they begin to fuse together.

All in all we had an amazing day full of good news and new experiences for her. God has really blessed us and has shown us that not only are miracles possible but that miracles keep coming from miracles.

1 Month Old and Developmental Pediatrician

    Today my sweet Bailey is one month old. She started the day by causing absolute panic in Mommy who woke up 7 hours after putting her to bed. She was still asleep. Her bottle was still in the fridge meaning she didn't get up with Daddy at 3 or 4 like normal... she slept uninterrupted for 7.5 hours. We both needed the sleep but I wasn't ready for that one lol.

   We celebrated her one month birthday this morning by giving her the first tub bath of her life. She loved it. She seemed unsure at first but then just really settled into the warm water and smiled as I washed her.(little stinker wouldn't let me get a pic of her smiling) She especially liked having her hair washed, but she always has like water on her head. After she was all clean we took some pics but only one was really good.

    We had an appointment with the developmental pediatrician today as well. I am so happy with the outcome. They told us that because she was a preemie they only count her as being 9 days old developmentally. They count from her actual due date as opposed to the date she was born. Then they started working with her and watching her show off by trying to pull herself up, rolling over from side to side and belly to side, making noises, and all the other stuff that I thought was normal one month old stuff... The Dr. informed us that a lot of the things she is doing isn't normally done by healthy full term infants until about 4 months. She said she was definitely advanced. :) I was so happy and so proud.

My little miracle just keeps surprising me everyday.
   

4 Wks old but not quite a month LOL

So 4 wks ago tomorrow my little angel was born. To me 4 weeks means she is a month old but her Grandma reminded me that she won't really be a month old until Moday the 28th...  I don't know if I  am ready for her to be a month old already. So much has happened that the time literally flew away. She has only been home for 10 days and that seems like it should somehow be how old she is. It's crazy or I am, either way...

Bailey hasn't been feeling well the last 2 days and has some symptoms that say she has a cold and others that look like formula intolerance or maybe mild colic. I don't know so we are going to visit the pediatrician tomorrow just to make sure everything is okay. I don't want to be the crazy mom that takes her in for every sneeze, but I also don't want to make her suffer any longer than she has to if she is sick... If it's nothing than good deal and I can claim inexperience lol. If it's something, then hopefully they can help her feel better.

She is growing very quickly. Her closed hands can almost go completely around my index finger now. It's kinda funny how her tiny tiny hand looks so big... Her little feet are also growing quickly and don't fit into the feet of newborn sleepers and the rest of her is starting to fit into that size.

She met Draco our Bearded Dragon, (she wasn't allowed to touch him) they seemed fascinated by each other. It's so cool to watch her discover new things. I didn't realize she would be actively discovering new things so young. I guess I just expected her to passively lay around and look at things... She just amazes me every day. I am still in awe that we have her, let alone all the cool things she does as she discovers her world.

I  am just so grateful for her and every minute I get to be around her. She is truly the greatest gift that God has bestowed upon us. I know I have said that a lot lately but the amazement just stays with me and is renewed every time I look at her sweet face... Honestly I hope this amazement never goes away. It means she is growing in every way and that she is fighting and winning against a crappy  diagnosis and most importantly, that I haven't forgotten what we went through to get her here and how faithfully God answers prayers when we never stop believing.

6 pounds!

   Our baby girl has crossed the 6 pound mark! She is about a week behind when the docs wanted her to, but she is just suddenly sprouting like a weed. The clothes that she was swimming in last week (so big they were a safety hazard) are beginning to fit her. I am a very happy mama.

We follow up with the neurosurgeon next week and find out if she is healing well enough to get her stitches out. It will depend a lot on the swelling around her valve at the time of the apointment, but we have seen a great reduction in that swelling as long as we keep her at a minimum of a 45 degree angle.

She is becoming more vocal everyday and has begun making happy baby noises a lot. Of course with her new found vocal abilities we also hear more about what upsets her. Lol. I just love hearing from her either way.

I can't believe how normal life seems with her. I expected big changes and needing adjustment periods but that's not the case. Everything seems so right and normal with her here. (Don't ask me about this at 3 am, my answer may vary drastically lol).

No real new concerns this week. We are watching her left side as she seems to have so weakness in her left arm and leg and her left eye seems a bit droopy sometimes. We half expected this though because they think an in utero stroke caused everything. We will bring it up with her developmental pediatrician and her physical therapist in order to stay on top of any possible issues. But all in all I think she is doing well and had a great first week at home. :)

Home Again

Bailey was discharged again today from the NICU. She shows no sign of infection and looks and acts like she feels a whole lot better. The swelling has gone down a lot and the surgeon said he expects it to be completely gone within a week.

They removed her abdominal sutures today and we got awesome news. THE CARDIOLOGIST CLEARED HER. No narrowing artery, no required stint. Her echocardiogram looked so good that she doesn't need a cardiology follow up. Praise God.

Of course where one Dr. is removed  another tries to get added. They had a hemotologist look over her charts today and ordered some horrible test. ( I had to listen to her scream for almost 45 minutes and couldn't be there and comfort her) Depending on the results of those test we may have to be followed by said hemotologist. They suspect that her conditions may have been caused by a brain bleed due to the color of her CSF. We shall see...

We got her home though and she seems relaxed and happy, which makes me very happy. We have a ton of appointments to fill out our month though so she shouldn't miss seeing Drs. and therapists to much lol.

Doing well

Bailey is doing well and seems to feel much better. There has not been any infection in any of the cultures. There is still one going but at this point everyone expects a clean reading.

She got another echocardiogram today so hopefully we can put this possible heart issue to bed.

She has been on strong antibiotics all week as a precaution and if there was an illness starting in her, I believe they killed it.

She is not gaining weight as fast as they want and yesterday actually showed a 3 ounce loss overnight. They have added a calorie suplement to her evening bottles. If it helps she will have to have at least 2 bottles a day at home in order to up her caloric intake. If it doesn't help they will discontinue and see how she does at home. I think once she can eat on her own schedule when she is hungry and not being forced awake to eat, we will see rapid improvement.

We are looking at a possible discharge on Monday if everything stays where it is and tests come back clean. Hopefully we will be able to keep her home this time :)

Back in the NICU.

First let me apologize for taking such a long time to update. It has been a hectic week.

Monday night during her bath we noticed some minor swelling and seepage at Baileys shunt site. On the advice of the nurse line we took her to the E.R. to get checked out. By the time we got there the swelling had become superball sized and was visibly growing quickly. She was taking in for imaging that showed her shunt was operating properly and not broken. The fear is infection, but there is a chance that it's nothing and just happened because her skin is so thin and the fluid levels are to great for everything to drain from the shunt right away. CSF being liquid takes the path of least resistance and got in around the shunt. This of course is the ideal outcome.
But because we don't know and she was lethargic and grouchy she was admitted back to the NICU after only 30 hours of freedom.

They have her on aggressive antibiotics as a precaution and have taken every kind of fluid from her to culture for infection. So far nothing bad has shown up. There is some concern about the CSF they took as it shows elevated white cells. But day one of a 3 day culture was negative for infection. We still have to wait the full 3 days to be sure though. Because of the elevated white cells, they are going to re-tap her shunt resevoir and start another culture. So we know that we have at least another 3 days after today before she can try going home again... if an infection turns up she will need to have her shunt revised and of course that being a repeat brain surgery she will be here longer.

We got the results of her last echocardiogram and there was no change, so there is still some real concern from her doctors about whether her aortic artery is narrowing. If it is they are talking putting a stint (? The thing that opens arteries) in. I don't know what all that entails yet but am hoping it's fairly safe and easy and not actually heart surgery. Bailey has been through enough already.

The good news is that the antibiotics seem to be doing some good for her and she seems to be feeling a little better. She is awake for longer periods and a little less grouchy. They have her on Tylenol because she seems to be in pain, so hopefully that helps her improve further.
Until the results of all cultures come in, we are in a holding pattern here.

Baby girl is finally home!!!!

Our sweetheart came home last night. We are overjoyed to have her safe and sound with her family.  Praise God for my little troopers awesomely fast recover from surgery!

She had dinner with her family and cuddles with everyone who could be here. I am sure she is excited to cuddle with the remaining family members as soon as she can. :)

She had a rough night, sleep wise. I think she was over stimulated on top of the fact that everything was different. She needed a lot of extra cuddles, which I was only too happy to give, even if I did cuss under my breath a few times when my eyes had barely closed and she started again... I love her to pieces and she is more than worth the loss of sleep. It amazed me that Daddy ( who to be fair got up a couple times to help out ) was able to sleep through any of it. But he managed. He is exhausted too, but got a few more hours sleep lol.

We have to go today and buy her a new car seat as hers is just to big for her tiny frame. It's made for 4 pounds and up but she is lost and unsupported in there, even with the preemie positioner. We have to hunt down a wardrobe as well. Preemies are too big on her everywhere except length. She is about 2 inches to long for them... so the hunt is on for footless preemie clothes that don't pull on over the head. It's not been easy so far.

We have about a week to normalize and set a routine before all her appointments start. We already have a lot of them and her in home therapy, cardiologist and developmental pediatrician haven't been set yet. Plus once the insurance company is done taking their sweet time underwriting her policy we have to add a regular pediatrician to the list. I really hope that they hurry as she really needs to get set up with her pediatrician. They almost wouldn't let her come home because of all this delayed insurance stuff... We were really lucky that her neonatologist was willing to override the weekend on call doc, or she would have been there till the insurance stuff came through and she had a close appointment with her regular pediatrician.  Yesterday was a total emotional roller-coaster of " she's going home, she's not going home" over and over again.

Oh and we found out they don't think she was 36 weeks 6 days like originally thought. They think she is a true preemie at 33 weeks 6 days... that explains a lot that can't be explained by her diagnosed conditions.

But she is here now and starting to settle in. Cuddling her without wires is the absolute best feeling in the world. She is a true miracle baby and the second greatest gift from God that I could ever imagine.

Rocking through recovery

So Bailey is beasting through her recovery milestones. She is off oxygen, got her IV out and is eating like a champ and maintaining good blood sugar levels. As of today there have been no apnea episodes since her surgery and no spitting up food. Her x-rays and ultrasounds look good on her head and abdomin. She passed her hearing test. Showed improvement in strength and flexibility with the physical therapist today. We met with the developmental pediatrician and she impressed him.
Today was just full of good news. She was exhausted from all the docs and tests but still managed to stay fairly happy all day.
We had one bit of concerning news today though. They are watching her heart closely as there may be an issue with narrowing of one of her arteries. They are not sure yet but she may need to visit the cardiologist to have things checked out.
They have started talking to us about what she will need after she goes home and besides a ton of appointments with various specialist, she will need in home therapy for awhile to help with muscle tone, flexibility and to ensure that she is eating well and that her shunt is doing what it needs to do, along with other stuff.
We are happy about all of this after you go home talk. The rumor is Sunday as long as she maintains her appetite, continues to control her temperature and has no more apnea episodes. We have a long way to go but being able to be home and get on a schedule and normalize to our life will make things much easier on all of us, I think.
I feel so blessed. God has heard and is answering all the prayers for my baby girl.

Surgery went well, Recovery is murder

Baby girls surgery went very well this am. The doc had issues because she has no subcutaneous fat and her skin is thin, but he was successful and she now has a VP Shunt.
Recovery has been tough. She had to stay intubated longer than expected because her left lung semi collapsed. She woke up while the tube was still in and just cried and screamed except no sound came out and her little heart rate would jump above 200. It was all I could do not to cry with her. Her silent screams just killed her Daddy and I. This happened every time she woke up until the tube was removed.
They put her on oxygen for the evening. And finally ordered her some pain killers with evening rounds ( 14 hrs after surgery ) She wakes up crying and just wants us to hold her hand and stroke her cheek. It's all that will calm her. Hopefully her pain meds get up here quickly.
She should be allowed to eat again by morning, which will be nice because this little one has a voracious apatite and hasn't eaten since 1130 last night. She was HANGRY when we got here at 530.

As I mentioned last night her diagnosis was changed. Today we learned that there are only 1 to 3 cases per year world wide of congenital Colpocephaly. We wanted our baby doll to be her own unique person but this was more extreme than we were expecting as far as individuality is concerned...  There are ways to aquire the disorder but being born with it as the main issue is apparently exceptionally rare. There are very few studies and even less information readily available about it. The shunt will help but beyond that all that can be done is to treat any symptoms that may arise. We are praying for an extremely mild case with no noticeable symptoms. That being said we are prepared as we can be for whatever God has in store for our little family.

Change in Diagnosis & Surgery Prep

So the sweet peas diagnosis has been changed. They are now saying that it's Colpocephaly with Aquaductal Stenosis instead of Hydrocephalus. Because of the Aquaductal Stenosis a shunt is still required as opposed to a drain to just get out the excess fluid. So she will still have this lifetime commitment to this implanted device. :(

Colpocephaly is basically (as I understand it) where the white matter in the back of the brain either fails to form or forms more slowly than usual. This allows open space that allows the ventricles to dilate more in the back than the front. The prognosis is very different from that of hydrocephalus in that we are looking more at seizure and neurological disorders than mental or motor retardation. Because she is young there is a good chance that the white matter can still grow in once the excess fluid is gone or it won't. It's another wait and see deal. This is basically an untreatable condition, where symptoms are attempted to be managed. She may need a lot of physical therapy off and on as this condition can cause her muscles to tighten and shorten. It all depends on how her brain grows and responds after the excess fluid is gone.

There is still a possibility of brain damage like with the hydrocephalus because the fluid did and is pushing out her brain against her skull and causing pressure. Another wait and see.

We have spent everyday with her since she was born on Friday and I honestly don't see where she is lacking anywhere in her cognitive abilities or motor skills. I of course am not a Dr or expert in anyway. But I am greatly hopeful after seeing what she can do.

Her surgery is scheduled for 0830 this morning and she is already all prepped up. Her Daddy and I are just hanging out with her and hopefully getting to cuddle with her while we wait for the Drs. and anesthesiologist to talk with us and get us to sign various consent forms.

What a day!

Got up early today to pack up the room ahead of my discharge and so I could get to the NICU in time to catch her doctors and get test results. It was non stop all day between her floor and mine. Today she had physical therapy, neonatoligist, neurosurgeons x2, a pediatrician, ultrasound and xrays. If that wasn't a big enough day for her, she finally got to meet Uncle Will and Alex, and her Pa.
We had our first successful breastfeeding session, followed by an inability to repeat it for the rest of the day...
I ran between floors dealing with my nurses and Dr's  in between hers in order to get all cleared. I am exhausted.
The results of each test were good in their own way. The ultrasound was on her heart  and showed no issues. The xray was on her bowels and stomach. Whiles she is having eating problems, there is no physical cause of it. Another change in diet and temperature control experiments to keep her from freezing one minute and overheating the next. She is a little jaundice and the numbers there are creeping up each day so she may have to do the light thing.
The neurosurgeons think she needs a shunt but don't really think that it's hydrocephalus anymore. They think it's a similar sounding disorder that starts with a C but I can't remember the name. Treatment is the same but outcome and prognosis vary greatly. It's not as cut and dry and we had hoped, but no where near as bad as it could have been.
She was tired when she met her relatives today so they didn't get to interact with her, but she got to hear their voices and that's a good start.
Our good note of the day is that nothing new bad happened today  and while she did have some apnea episodes, she didn't turn purple all day.

A happy morning and stressful afternoon and evening.

So today started off great. Got down to the NICU to check on her and found out that she had kept her food down and blood sugar stable all night. That trend continues :).  She was off the warmer and we were allowed to put clothes on her. Her preemies are a little big still. We held her and interacted with her all morning long. I was in heaven.
This afternoon she had a little episode of what looked like sleep apnea. It was odd but not super concerning and the nurse showed us what to do. And then it happened again and again and again. We noticed that her temp was low and she went back on the warmer. The nurse was thinking that that was the cause of the apnea episodes. This was not the case and it continues to happen even though she is warm.
I left there tonight truly worried for the first time. Her night nurse is great and has been super attentive, so we know she is in good hands. She is going to try and get her down for an MRI over night so we can get results and information first thing in the morning. She has already called the overnight neonatalogist to make sure that he is aware and can spend some extra time with Bailey on his rounds tonight.
We are praying for a quiet uneventful night for her and that she is able to get into MRI tonight...
And because I like to end my day on a happy note. I finally got her to take a bottle for me. She took 9 ml. lol. Of course she then immediately took all the rest for daddy after quitting on me. Lol. I still count that as a small feeding victory for mommy.

Feeding Issues and Super Daddy

Our sweetheart is doing well overall. She is having issues with keeping her food down and her blood sugar up. Last night and this morning were really bad but after a change in how and what she is being fed things started to look up. She is being given a bottle with whatever  breastmilk I can pump and high calorie formula. She has 30 minutes to take it at her pace if she wants it. We then have to keep her sitting up for 30-45 minutes. Anything she didn't eat is loaded into a feed pump and administered through her ng tube over a 2 hour period.
She is still having issues with most feedings but for her dinner time feeding she took the whole amount by bottle and managed to keep it down. Major plus. Her bed time feeding was half bottle half feed pump. Hopefully it stays down. This has allowed her blood sugars to come up and stay in a safe range. It's on the low end but acceptable.
Right now we are not sure why she is having these issues but hopefully they clear up with the new formula and schedule. 
Tomorrow  (Sunday) we expect more of today just with hopefully no feeding issues. We are learning all the fun baby stuff like cleaning horrible diapers and puke, how to hold her for breastfeeding and bottle feeding and basically just getting comfortable moving her around. I know it sounds easy and simple but one of us (mommy) is afraid to hurt her head... Bobby got to help give her a bath and is an expert instinctively at all things baby care. It amazes me. I gained 50 levels of comfort with doing stuff with her today and still don't come close to being where he is with her. He amazes me and is an amazing daddy. Bailey is lucky to have him.

My baby doll is here.

Born August 28th at 8:06am. She is 19" and weighs 5lbs 9 oz. She wasn't going to stand for being told when to be born lol.
She filled my heart so much it feels like it will burst when I look at her.
She definitely has Hydrosepulus and her head is measuring 3 weeks ahead. There is good news though. The pressure inside her head wasn't as bad as expected. This means that while she still has to have the shunt surgery, she didn't have to have it as an emergency procedure, allowing the NICU team to do more test and try to pinpoint the exact problem. Her surgery is scheduled for Wednesday as of right now.
Other than the hydro, she looks great, all of her organs are functioning perfectly.
She is having some issue with sucking and had to be given a feeding tube. They are working with her and a pacifier to try to strengthen the sucking reflex. She is also having a bad time keeping food in her belly and throws up everything almost immediately. The nurse is hopeful that it's just from taking in to much amniotic fluid during birth and that it will clear up quickly  on its own. I hope she is right.
She already shows amazing personality. She has her Grandpa's temper lol, and already has her Daddy wrapped around her little finger. He has been awesome keeping an eye on her and constantly checking on her and talking to her. It's absolutely beautiful. She is going to be such a Daddys girl. Seeing him with her and anxious to get back to her when he has to leave her is amazing. His daddy instincts are so strong...
Hopefully today I will get unhooked from all the monitors and will be able to spend more time with her. My 2 short  visits yesterday just weren't enough.
Thank you everyone for all the prayers and please continue to pray for her. I truly believe that her being in better shape than expected is because so many of you interceded on her behalf. We have a long week ahead of us as they sort everything out and run all these tests and perform her surgery. She is strong and definitely a little fighter. God has given her the qualities she needs to fight through all of this and a beauty that fills my heart and gives me strength to stand strong for her. Not to mention I feel so much joy just looking at her that there is no room for anxiety or fear right now.
I will continue to update here with her progress and let yall know what the docs are saying.

One week to go

Our sweetheart will be here in a week and we are all so excited to meet her. Not much has changed since our last update but I wanted to share the last pic before we meet her in person. I may be biased bit I think she is absolutely beautiful. :)

Finally home, All is well

So our 24hr observation became a 48 hr as one of the test they were running got compromised at the last minute and we had to start over.

Bailey was a champ for the most part and put up with being on the monitor often even though she hates it. At one point her heart beat was going crazy from 119 to 180 and back rapidly. Bobby and I were worried at first, but my room was right across from the nurses station, and we could hear the charge nurse calling other nurses over saying, "look at baby Stelzer dance, she is such a happy baby." Made us feel much better without even talking to them.

We got to come home last night, my blood pressure is still high and fluctuating a lot but it's not pre-eclampsia, so we get to wait until the first to deliver. I can't wait to meet her, but the the extra two weeks can make a big difference in how well she will handle surgery and in her skin thickness for shunt placement.

Sleeping in my own bed was awesome and she seemed to be happier and calmer as well.

12 days to go...

Bailey's birthday has been decided.

Today is our 9th wedding anniversary and for the first time in 9 years He was going to be home. Unfortunately now I will not be... Bailey and I are hanging out for observation at L&D due to some concerns about pre-eclampsia. I don't think it's anything to worry about yet, but it if it is, Bailey will be delivered on Thursday. If it's not her birthday will be September 1st. The early delivery is due to my liver, not her health.
She is looking good all things considered and behaving for her NSTs. Other than her hydro she looks perfectly healthy. She is going to be baby doll sized and under 5 pounds at delivery if the ultrasound is right. Either way the 20th or the 1st she will be here before I know what happened. LOL. We are very excited to meet her.

Last visit to the MFM

    Today marks our last visit to the specialist. Baileys brain is looking pretty good all things considered. Her ventricles have grown but do not seem to have grown with the speed they were before. One side is at 25mm and the other is at 31mm. Her head looks like a football in the ultrasound but the doc says it's only  measuring 2 weeks ahead and that we most likely won't be able to see it once she is born. Oh and we got to see actual brain matter today!!! This is the first time it has showed up. In the past all we could see was fluid. Just knowing that all that grey matter is there was such a relief.
    Her growth overall has slowed down and she is down from the 36th  percentile to the 22nd but still looks healthy. She is practicing breathing non stop.
     I left that office today for the first time in months without crying. There wasn't really any good news but there was no new bad news, which is a first. I look forward to meeting Bailey  in a couple weeks. She of course will still need the NICU and the surgery but according to the doc she won't look like megamind... I take some joy in that.

She will be here in 3 weeks.

Bailey did well and cooperated with her non stress test today. Her heartbeat was running high for her but still in what's considered a normal range. 
My liver test did not come back as favorably as we had hoped, so it was decided today that Bailey will be delivered in 3 weeks. Any delay past that could cause my liver to poison her resulting in a still birth. No firm date yet but definitely in the 37th week. We see our MFM for what will most likely be the last time on Friday to get an update on how her ventricles are doing and her rate of growth. We are going to twice a week appointments to keep a close eye on her until she is delivered. Will update again on Friday or Sat after our last 3d ultrasound.

She seems to be very much like her Daddy

      Bailey was being stinker today for our appointment. We have to do non stress test every week and she refused to stay put with the Doppler on her. They spent 20 minutes chasing her around with no luck. We had to return after lunch for a Biophysical  Profile (BPP). This is an ultrasound based test where they have to observe her practicing breathing for 30 seconds and she has to move 3 times within 30 minutes. For this test she was sleeping and refused to move. (She has her Daddy's stubbornness LOL) She was practicing breathing the whole time but wouldn't move. If she fails to complete the test in 30 minutes we have to go to labor and delivery for overnight observation. My little girl finally decided to move with only 30 seconds left on the timer. :P
      Good news is that all looks well today. She has a good heartbeat and is moving as she should. She is still breach but we don't expect that to change. We had to do some blood test as there is concern about my liver function, but nobody seems really concerned at this point.
      Really cool point of today though was that I could see her hair on the regular ultrasound. We saw it on the 3D ultrasound back at 20 weeks but for her to have enough to show up on regular ultrasound seemed really cool to me. And while we were watching for her to move she tented her index fingers to her chin just like her Daddy does.

The Back Story

       I have started this blog because so many people are asking me about Bailey and how she is doing. I only expect this to increase after she is delivered and in the NICU. Its hard for me to physically talk about it all without breaking down so this is the best I can do for now. I will post updates here and anyone who would like to know whats going on can check here.
       Bailey is currently chilling in utero we are 33 weeks along as of today. She was diagnosed with enlarged ventricles at 24 weeks.The problem was on the high side of moderate. A follow up a month later showed an increase in fluid that has her now labeled as severe and diagnosed with Hydrocephalus. There was no evidence of a problem before the 24th week and her anomaly scan showed her to be perfect with the exception of being a little small. Her size was the reason for the follow up where the Hydrocephalus was found. We have had what feels like a million test run and no cause can be found. She has tested negative for any chromosomal issues, we both tested negative for any illness or virus that can cause the problem, she shows no signs or symptoms of Spina-Bifada and they don't think (but cant be sure) that its something like Dandy Walker Syndrome or a Charii Malformation. Right now they are saying its idiopathic and that she may have had a stroke. They of course won't know anything for sure as far as cause or prognosis until she is born and can have an MRI.
      What we do know is that it doesn't look good and she will most likely have to have brain surgery and have a shunt installed very quickly after birth. She is breach and will not be able to turn and her head is to big for a traditional delivery so we are guaranteed a cesarean birth. Immediately following delivery she will have an MRI to try to pinpoint the problem so that treatment can be started quickly. There is a very strong chance of brain damage although the severity can't be know until the fluid levels go down and her head returns to normal size, when she will get more MRIs to try and locate damaged areas. This can take a week or months depending on how bad she is at delivery. We saw a specialist yesterday who told that the prognosis was good as long as her head isn't swollen or misshaped. Unfortunately he had not seen the ultrasounds... Her head is swollen and kinda shaped like a football right now. So that didn't make me feel any better.
     We were able to check out the NICU, its a level IIIc so she will be receiving top of the line care and we really liked that one nurse is assigned to only 2 babies, so she will be watched well. They do not have facilities for me to stay there with her but I am sure I can find a way to nap in the waiting room so I won't have to leave her there alone.
      We are looking at delivering between 37 and 40 weeks. They don't want to deliver early unless they have to because she doesn't need anymore complications to fight against once she is born and because she is still on the small side. I will be pushing for the earliest safe delivery date in order to try and save her brain functions and additional damage.
       We are preparing ourselves for the worst outcomes as far as brain damage and function but we are still praying for a miracle. Please join us in prayer for her if you are so inclined.