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.