NICU Day 28 (January 4th)

Today has been an incredibly difficult day.  I walked in the NICU this morning to see her sitting at 100% oxygen again and her saturation level still dropping.  It was reminiscent of Saturday all over again only she has not recovered as well today.  Saturday was a "bump" according to the doctor but he described today as a "hill" possibly turning into a mountain.  On Saturday, we knew that her ductus was open and causing issues, but today it is closed and they are unsure as to what is wrong.  She could be fighting infection or she could be struggling with renal issues.  They checked her abdomen for abcesses and NEC but those do not seem to be the issue.  They do think she may have pulmonary hypertension but it still is not certain.  As of an hour ago, the doctor said the next 24 hours are "touch and go" and they have given us a room here at the hospital to stay the night so we can be nearby.  Tom took the day off of work after they called us early this morning that things were not going well and has been at the hospital all day as well.  Noelle has had different procedures, x-rays, ultrasounds, etc...going on since 11:00 last night when things first started going downhill, and she has been awake for a good part of this even through most of today.  It's encouraging to see her alert and active and still fighting the nurses when they do a procedure--that is a good sign, and yet she needs to rest.  My heart broke today as I talked to her and she looked at me with eyes wide open.  It hurts to see her lying there with multiple things poked into her and tubes and wires all over the place and machines beeping; and yet as I poured my heart out to my heavenly Father tonight, I was reminded that He understands my heart beyond measure.  Not only did He watch His Son die, but He watched Him in agony leading up to His death as His Son begged Him to "let this cup pass from me."  What parent would not give in to their child's earnest pleading like that?  And yet God did not.  He loved us so much that He still gave His only Son so that I might have eternal life.  My hurt and pain right now can't even begin to compare to His.  And so we leave our hearts in His hands because just as He saw the "bigger picture" with His own Son and carried His plan through for His glory, so He will do with us.  This does not mean that everything will be okay in human terms, but it does mean that everything is okay because His plan will be accomplished, and He will be glorified.  Does that make our hearts hurt less as we travel this road?  No, but it does bring peace to know our Savior is in control and is with us each step of the way.  Thank you for continuing in prayer with us.

NICU Day 14 (December 21st)

Noelle had a good day overall today.  They still have her on the new ventilator and have not put her back onto the jet ventilator as of yet so we're hoping this will stick with her and she can graduate to the CPAP machine in another 10 days or so.  Her white blood count was lower today and no news has come back regarding an infection as of yet, so we're thankful for that.  Her blood sugar has been stable, and they are trying to adjust her different fats/nutrition that she receives to help her start putting on weight and growing.  We did find out today that she had what they consider to be a level 2 brain bleed.  They re-evaluated her last cranial ultrasound with a neurologist and believe they saw a small blood clot; however, this level is not usually anything that has long term effects, and she does not seem to have any side effects currently from it.  They will continue to do ultrasounds every week or two to monitor it just to be safe, but they believe we are past the worst danger point for her to develop anything further with it.  There still is a concern for her to develop NEC, and this will be the most crucial for the next month or so.  Currently, she is tolerating her feeds very well, and they bumped her to .6 today so we are thankful for that too.  Overall, a good day and another day down.  She will be two weeks old in just a few more hours!!  Thanking God for each day...

NICU Day 13 (December 20th)

Overall, Noelle had a stable day.  She was weaned off the jet ventilator which is a step down and another step closer to her breathing on her own.  She will have to do more of the work with the machine she is on, but she tolerated it well for the most part today.  Her blood gas tonight was not quite what they wanted to see, so they have told us not to be alarmed or surprised if we come in tomorrow and they have put her back onto the jet ventilator.  This could go back and forth for a bit.  Her right lung still has some areas that are not inflating as well, so they were hoping that her working more on her own would help solve that problem.  Tomorrow morning's x-ray will tell if that was true or not.  Her white blood count was elevated again--higher than the first time.  It still is within normal range, but they are testing her blood for infection to be safe.  They had to take blood from her line to make sure there isn't an infection in the line, and they also had to stick her and get blood from her directly.  I thought it was not fun to get stuck myself, but watching your tiny baby girl get stuck is 1000 times worse!!  The blood will be watched for the next 72 hours very closely.  Basically, no news is good news during that time period, so we are praying that she is not developing any kind of infection.  They bumped up her feeds again today as she is tolerating them quite well, so she is now receiving .5 milliliters per hour.  She lost 20 grams again--she has been fluctuating between 410 and 430 grams for the past week, and they aren't quite sure why.  They adjusted her caloric intake today and were evaluating her metabolics, so hopefully between all that they can figure out how to start helping her put on weight.  It takes a lot of time though during these first weeks, so we are just thankful that she never dropped below her birth weight even as she lost all the extra fluid that came from the delivery.  Again, thank you so much for continually praying for all of us. Good night.

NICU Day 12 (December 19th)

Noelle had a stable day overall for which we are very grateful. She currently weighs 15.2 oz. but we take into consideration that this includes her breathing tube and the heplock in her foot...either way, she has not dropped below her birth weight so that is a praise. She is tolerating her feeds very well, so they were able to increase them yet again...she is getting .4 milliliters per hour (we are slowly but surely moving toward the 3 milliliters per hour they want her to be receiving for her size). They had weaned her off the hydrocortisone today for her blood pressure, but her blood pressure started dropping again, so they are going to put her back onto it and wean her off over a longer period of time. Her adrenal glands need to kick in and figure out that they need to take over for her body. Hopefully the longer weaning period will help that. Her white blood count was slightly lower today. The white bands were still the same count, but overall it was a little lower, and the bands had not increased so we were thankful for that. They are still watching her closely for infection as she is off antibiotics now, but she has now been off of them for 4 days!! We know this could dip again, but we're grateful that for now she is not on them. She is still having a bit of trouble with one of her lungs--one small section seems to have trouble staying inflated, but her x-ray today did look a little better so hopefully that will continue to improve. As far as updates, we are trying to get a page going through "Caring Bridge" and hopefully will have that up soon for people to stay updated and continue to pray. We cannot thank God enough for your love, support and prayers.

NICU Day 11 (December 18th)

  ***Written by Chris McDowell, Jill's Mother***

Noelle did pretty good today. Things were pretty stable except for a couple of things.
One was her oxygen saturation levels were fluctuating and they weren't sure what was going on so an x-ray was ordered and they saw that the intubation tube was too low so they adjusted it.
The second thing was an increase in her band white cell counts. These are new white blood cells that are seen when the body needs to fight infections. Her count is still in the normal range, but it is higher than it has been so they are watching closely for any sign of infection. She just finished one round of antibiotics, but they have another round ready to go.
Jill and Tom are extremely exhausted so the prayer for them is to have an adjusted schedule that allows them to catch some rest in the afternoon even if it is just a power nap. Also prayer for added strength. Tom has gone back to work so he needs to be able to focus and Jill is trying to freeze milk for Noelle as they increase her feeds, but the stress of the surgery, the past week and lack of sleep is greatly affecting this.
They are so thankful for the past 10 days and even amidst the ups and downs they have been encouraged. God bless you all for your continued support.