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 27 (January 3rd)

We are thanking God for another good day with Noelle.  She was quite opinionated today and was letting everyone know that she wanted to be left alone!!  They think it's a good sign that she is feeling better while on the other hand, it is giving us a glimpse of what we're in for!!  We'll take it though!!  The echocardiogram revealed that she had a very small PDA (opening in her ductus); however, they did not hear a heart murmur today so they think it may have closed off and will check again in a couple of weeks to confirm it...HUGE praise!!!  She gained again and weighs 610 grams although they believe she will drop some of this as she is retaining fluid right now.  But, she is looking bigger and is not overly puffy so they think some of it is actual weight gain along with the fluid, so hopefully when she starts feeding again on Saturday we will really start seeing those numbers climb.  Overall, it was an uneventful day (and we love those!!).  The main goal of the doctors right now is to get her weaned off the ventilator.  It's important they do this soon as the longer she is on it the more likely she is to get lung disease.  Thank you so much for praying for our little girl!!  I hope we can report another good day to you tomorrow.

NICU Day 26 (January 2nd)

Today was an evidence of all the prayers for Noelle.  She is very stable and had a great day, for which we are very thankful.  She had the echocardiogram today so we should hopefully know for certain tomorrow whether or not the ductus is closed.  The tech did not see it on the ultrasound today, so the doctor wants the cardiologist to review it to be certain.  Clinically, her stats show improvement, and they are not sure if that is due to the ductus or the antibiotics fighting off an infection.  Either way, we are grateful.  She had a "lab holiday" today which means that she was stable enough for them to "leave her alone" and not get blood work for the entire day.  We especially love this because it means she is not getting stuck.  She was able to be weaned on her ventilator settings a little more today which was another great sign.  The longer she is on the ventilator, the more potential there is for lung disease/damage so the sooner she can get off of it, the better.  We know we still have many days ahead and the roller coaster is not finished yet, but we are thankful that we rest in the hands of a loving and gracious God who is guiding us each step of the way and who gives us these encouraging days amidst the ups and downs.  Thank you so much for praying for us.

NICU Day 25 (January 1st)

Noelle said "Happy New Year" to us with a much better day than yesterday!!  Her nurse this afternoon even made a comment on how well the afternoon went with her stats and attributed it to prayer.  She sees us praying with Noelle at different times and has heard us talk about how many people are praying for her, and it was a testimony back to us to see her recognize that prayer was playing such a huge part in Noelle's status.  It's just another reminder to us that people are watching even when we don't realize it.  It's easy to get caught up in our situation and become self focused with what is going with us right now, but God was just reminding us once again that this is still about Him, and all the glory needs to go to Him.  Noelle received her last dose of Indocin today and will receive another echocardiogram tomorrow to see if it has affected the ductus at all.  We are praying hard that it is working.  If it doesn't work, they may try one more round of Indocin; otherwise we have to consider the surgery which involves transferring to the children's hospital, a new team of doctors, not to mention the procedure itself.  If it happens, then we know that God has a reason for us to be there, but humanly we are praying that it doesn't come to that.  Other than waiting for those results, there is not much new to report.  Her stats did not swing nearly as much today, and she stayed around 50% oxygen saturation today (give or take some) which is MUCH better than the 100% she was at for a while yesterday.  So thank you for your continued prayers, and we hope to report good news on her ductus tomorrow.  Happy New Year!!!

NICU Day 24 (December 31st)

Today was another rough day in the NICU with Noelle.  We arrived at the hospital this morning to find her oxygen level at 100% (it should be sitting in the 20's or 30's...50's at the most if she is having a harder day), and her stats were still dropping even with that.  The doctor was extremely concerned that she was starting to fight an infection on top of her PDA.  The echocardiogram revealed that the ductus is still largely open, and the ibuprofen did nothing to help it close.  They are now starting her Indocin to help it close (they were unable to give this to her before due to all of her intestinal issues, but now that those seem to be resolved, they are going to try it).  They are also starting her on another round of antibiotics to help her fight whatever infection may be affecting her stats so much.  It could all be related to the PDA or it could be a separate issue altogether.   The doctor told us this morning that today and the next few days are critical days.  If they cannot get the ductus to close and her lungs continue to flood, then we will have to consider the surgery.  However, the surgery is controversial and questionable since Noelle is a micro-preemie baby and just so small.  When we left tonight, she was doing better with her stats--was more stabilized than earlier today.  We know that so many people are praying for her right now.  Especially meaningful to us is the children who come to us and tell us that they are praying for us and Noelle--it means that parents are sharing this in their homes and as they teach their children to pray, they are lifting us up in prayer and that means more than you will ever know.  While the road is scary at many points, we are so thankful that we have peace through the process.  As hard as it is to watch our baby girl go through these various procedures and feel helpless to assist in any way, it's comforting to know that she rests in God's hands, and there is no better place.  We look forward to this new year and seeing what God unfolds in the life of our family.   Thank you for your continued love and prayers, and we wish you a very Happy New Year!!!

NICU Day 23 (December 30th)

Today was a pretty stable day for Noelle, and we are so thankful for that after the last few days of dipping up and down on the roller coaster.  They did an echocardiogram today to check on her PDA and hopefully will have the results of that tomorrow.  They also did another cranial ultrasound to make sure that the blood clot in her brain is diminishing and resolving itself, so hopefully we will have those results tomorrow as well.  They took her off the jet ventilator today and then put her back onto it again as they are trying to figure out the best settings to help drain the fluid in her lungs that has collected because of the PDA.  It has its pros and cons both medically and comfortably for her as she does not like the jet ventilator as well and often tries to breathe over it (which they do not want her to do when she is on it....it defeats its purpose).  She also gets extremely agitated on it so they finally gave her a fentanyl drip to help her calm down, and she seems to be doing much better.  She was alert for quite a bit tonight, and it is fun to talk to her and watch her eyes follow our voices as we speak and read to her.  She definitely seems to recognize our voices--so we try to speak to her when things are calm and not when people are poking her--we don't want her associating us with pain and prodding!!  She also reached 510 grams today, praise the Lord!!  She is even physically starting to look a little bigger, and it's exciting to see the small amounts of growth in her.  We are so thankful for these past 3 weeks and thank God for each and every day that He gives us with her.  She has blessed our lives so much already, and we are ever grateful to Him for how He is using her to mold and change us and draw us closer to Him.  Thank you for being a part of that process with us!!

NICU Day 22 (December 29th)

Thank you so much for praying for Noelle.  The doctor reviewed her x-ray this morning and determined that there was nothing concerning as far as the trapped gas that had been seen previously.  The gas is moving through, so that is a great sign.  She dropped 20 grams today and is down to 480, but she is slowly creeping up so that is good news.  Clinically, she is stable at this point and is receiving her third dose of ibuprofen tonight for her PDA.  Tomorrow they will repeat the echocardiogram and determine if her ductus is closing or not.  We are praying that it is as we would really prefer to avoid considering surgery for her.  She did kick out her heplock this evening and bled out quite a bit so they had to do another transfusion to replace the blood she lost.  Consequently, they also had to put a heplock into her head, which as her parents, was tough to see, but we know it is a necessary evil at this point and are grateful for the various ways the doctors are helping her.  Thank you so much for your continued love and prayers.

NICU Day 21 (December 28th)

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

Your prayers were felt greatly on Tuesday and Wednesday.  Noelle has stayed stable for the most part.  She developed a sizable gas bubble in her intestines and the abdomen was distended.  The staff immediately began assessing her for NEC (necrotizing enterocoloitis) and prepared her for transfer to Baptist, if it becomes necessary .  If the intestines perforate and the gas goes into the abdomen it is immediate emergency surgery(which would have to be done at Baptist).  They started her on antibiotics and inserted a tube to draw the gas out.  Her xrays looked better Wednesday evening at 10 PM, while her abdomen was still discolored.
The jet ventilator has improved her blood gasses which, Lord willing, will help the PDA (opening in her heart) to reduce, but that won't be known for a few days.  She is more agitated when on the jet ventilator because it "wiggles" her whole body so she is on a very low dose of sedative.
Her chest xray looked a bit "hazy" Wednesday morning which suggested fluid in the lungs from the PDA.  She was started on diuretics which hopefully will help her body drain the fluid for now.
Noelle did reach the 500 gram mark on Wednesday morning which is a praise as far as her being the size the surgeons would want to see to perform the heart surgery to close the PDA if needed, but we are hoping and praying that is not needed at least for now.  She is so small and it would have to be the last resort.  She received her second dose of ibuprofen around 6 PM Wednesday.
They did take her off the hydrocortisone for her blood pressure.  They had gradually weaned her down hoping her own adrenal glands would kick in.  So far her blood pressure was staying stable.
Your love and prayers truly helped us navigate the ups and downs of Tuesday and Wednesday.  We can't thank you enough for all of your care and support at this time.  God bless you all.

NICU Day 20 (December 27th)

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

Yesterday the doctors noted a heart murmur which they were hoping was due to low hemoglobin.  She received her transfusion yesterday and was pretty stable.  pH level in her blood gases were just barely under the norm, but they were consistent with her heel stick which they said was good.  This morning they felt the heart murmur was a bit more pronounced and during morning rounds the nurse changed her diaper and there was some blood in the stools.  They quickly began ordering different tests to try and determine the cause.  The xray revealed that her intestines are fine (so no NEC at this point).  The echocardiogram showed that the ductus arteriosis (an opening in the heart that helps shunt blood away from the lungs and to the body when the baby is in the womb and begins to close within a few hours to a few days after birth) was actually more enlarged than it has been.  They knew it was open -- this can take a while with the preemies, but because it is more open it is shunting blood away from intestinal circulation (thus the blood in the stools).  If this does not improve to a certain level then Noelle is in danger of going into congestive heart failure.  One drug that helps with this also restricts blood flow so due to the fact that her intestines are already sensitive they will not use that.  She is not a good candidate for surgery at this point -- she weighs 440 grams and they have not done this surgery on a baby less than 500 grams.  At this point in time they feel their only option is treatment with ibuprofen (it's specially formulated).  It will be given once every 24 hours (over a 30 minute window) and for the next 3 days.  They also put her back on the jet ventilator which will help them regulate her blood pH levels which could help with the closing of the PDA (patent ductus arteriosus).
This is life in the NICU.  Things can seem to be going along nice and steady and one thing can tip everything upside down.
We truly know that God has given a gift of 20 days thus far and our prayer is if it be His will that He would graciously guide the doctors and through His strength Noelle's body would respond to the treatments. 
We appreciate your love and prayers so much. 
God Bless.