Monday, September 24 - The roller coaster continues (Day 9)

Today we met with the speech pathologist for the second time.  She fed Julia a bottle while observing how she is eating.  She said that Julia is working extra hard to get a small amount of milk, which is exhausting her.  She showed us how Julia sucks once, gulps to swallow several times, and then starts to get stridorous breathing - kind of like gasping for breath.  She said she shouldn't need to swallow several times if she has the correct eating pattern for babies, which is suck once, swallow once, and breath once.  She then ordered what we describe as an X-ray movie.  Essentially she will feed Julia a bottle of milk mixed with barium while an X-ray takes shots of her eating.  This will show the speech pathologist what is happening in her throat as she is eating.  She said she was slightly concerned that Julia could aspirate milk while she is eating (essentially she could confuse swallowing and breathing and get milk in her lungs).  So tomorrow Julia will have another scan (time yet to be determined) to show how she is eating.  Until that time she can breastfeed, but will not be bottle fed.  When Sara couldn't feed her Julia would get her feedings through the NG tube only. So a small step backwards, but hopefully the scan will give us and the doctors more information to help her eat and eventually released from NICU.

Eric also returned to work today, but his work was interrupted by the meeting with the speech pathologist.  He biked from campus to the hospital when we learned when she would be there (after working a whopping total of 30 minutes this morning).  Since he typically feeds Julia her bottles we thought it would be good for him to be there and hear what she had to say.  We then ate lunch together to talk about what we heard and Eric headed back to work while Sara stayed to give Julia her next feeding.

Last night Julia did not do as well with her feedings - the nurse said she averaged maybe 25 ml, which is a bit disappointing since she was eating better at night.  Tonight we won't be able to compare since she will not be bottle fed. Her feedings also increased from 83 ml to 90 ml.  The nurses said that the target feedings are based on age and size of the baby. I took that to mean that they are likely to increase each day, raising the bar slightly higher for her to come home to come home.

Sara spoke with Dr. Stratton (one of the neonatologists at Carle).  He wanted to do some bloodwork on Julia to look at liver, kidney and thyroid functions.  He also did a basic CBC.  He said that sometimes thyroid problems can be associated with babies having a large tongue and he wanted to check it out.  They have been monitoring liver and kidney functions throughout Julia's whole life ;) - If I understand correctly, some of those functions can go along with BWS (Beckwith-Wiedemann Syndrome) and can also go along with abdominal wall defects.  I called and got the results  and for the most part, everything looked good.  Her thyroid level was a bit elevated, but not concerning.  Her calcium and phosphorus levels were a little high, but again nothing concerning.  Her bilirubin level was a bit high at 13.7, but had gone down from yesterday's 15.4 so they weren't concerned.

Julia also got a new spot in the NICU.  She now has a room with a view- meaning she now has a window.  It is nice because it is a little quieter spot and a little more private for when I nurse her and pump.  I put one of her new blankets on her bed today and wrapped her in one of her new receiving blankets.  She looks pretty cute if I do say so myself. :)

Sunday, September 23 (Day 8)

Today will be a complete post.  We will try to keep the posts up to date and catch up old posts as we have time.

Today we went to church.  Oliver went to Sunday School and Parker went to the nursery - we were pleased to hear both had a good time.  We talked to some friends after church and went to IHOP for brunch.  After brunch we came back home.  Sara and Eric packed up to see Julia - we could give her a bath before her 2:00 feeding - so we were at the hospital by 1:30 pm.  Julia enjoyed her sponge bath (the second time we gave her a bath).  After her bath Sara fed her and she ate 14 ml.  By the end of the feeding she was fast asleep so we went back to see the boys.  We played with the boys and had a good time reading stories, playing GeoTrax, and just spending time together.  Sara and Margaret took Parker for a special trip to Toys R Us - he had a good time running from toy to toy spending time with mom and grandma.  While they were checking out toys Eric went to the hospital to feed Julia for her 5:00 feeding.  She managed to eat 16 ml from the bottle (out of 83 ml).  The rest of the milk is given through an NG tube.  Julia zonked out during the feeding so Eric took that time to cuddle up with her for a while.  After a while Coco, Kelli, and Sara visited followed by Margaret, Oliver, and Sara.  During this time Parker was being watched in the family lounge by the other adult not in the NICU.  He did not like missing out on the action.

We found out that Julia will need to eat at least 75% of all of her target feedings for a couple of days before she gets to come home.  Currently her target is 83 ml (~2.75 ounces), but it has increased every day. So, based on current progress, she has a long way to go before she gets to come home.  We will meet with the speech pathologist for the second time tomorrow to see if she will recommend any other feeding strategies that may increase her intake, because her feeding at 5:00 pm was ~20% of target.

Most importantly here are some pictures of Julia from today.

Julia relaxed after a feeding

Zonked out after a feeding

Her new belly button is already looking great!

Julia cuddled into dad.  This picture was taken by Oliver all by himself and I thought it was a very good picture so we should share it.

Saturday, September 22 (Day 7)

Again this is a quick update: Julia ate 39 ml last night and 28 ml from Sara!  A great achievement.  She was switched to size 1 diapers and experienced her first full day being IV free.  Oliver visited her too.

Friday, September 21 (Day 6)

This will be updated later with more information.

A quick update: She had her best feedings this night (averaged 40% of what she should have ate, which was spectacular - we were so happy to hear this).  Her eating amount was upped to 56ml.  She started regulating her blood sugar so they eliminated glucose tests - very exciting, because she was having a hard time keeping her blood sugar up.  Julia lost her IV!  We now do basic care for her (changing her diapers, taking her temperature, and feedings).  Oliver spent time in the NICU family lounge and we did FaceTime with Oliver and Julia.  We ate in the Cafeteria (Eric, Sara, Oliver, Parker, Margaret, Karen).

Thursday, September 20 (Day 5)

This will be updated later.

Wednesday, September 19 (Day 4)

We will update this when we have time.

A quick update for this day.  The surgeon said Julia could start eating today so she had her first feeding!  The surgeon also said we should treat her belly with "normal cord care" so she was able to wear her first outfit (unfortunately her parents weren't prepared - funny story that we will add later).  Julia was also upgraded from a warming bed to a crib - so she is essentially considered less critical.  This meant that we can hold her whenever we wanted!  She also lost her suction tube from her tummy.

Tuesday, September 18 (Day 3)

Again, we will update this later when we have time.

A quick highlight: Julia was baptized before surgery.  She also had an ultrasound of her kidneys and echocardiogram of her heart before surgery - both looked good.  Her surgery went well and the surgeon said that in about a year she should have a normal looking belly button.  Sara was discharged from the hospital so we spent some time and saw the boys, which was nice.