NICU Days 59-61 ~ (February 4th-6th)

Noelle continues to do very well, everything considered.  It is really getting fun as we spend time with her, and she has more wakeful periods of time in which she can interact with us.  It is also a huge blessing to be able to hold her so much.  She currently weighs 800 grams / 1 lb. 12 oz. and seems to be on a good trend of gaining weight and growing.  They have had to increase her oxygen flow in the last couple of days to help with the acid reflux, so hopefully that will help her recover from that more quickly and be able to start weaning down on her oxygen again.  She also received a blood transfusion over the weekend as her hemoglobin was low, and hopefully the added blood will help her digestion and consequently help the acid reflux as well.  She seemed to do better this afternoon with the reflux, so we're hoping that is a good sign of progress that will continue.  She will start receiving physical therapy soon.  Term babies "float" in fluid until they are born, relieving pressure from their limbs.  However, preemies are lying in a bed, and although they are switched in positions every few hours, they still often develop issues with their limbs.  The issue should hopefully resolve with physical therapy which we will need to continue daily with her even once she is home.  It's a little overwhelming some days as we start to grasp everything that is involved with bringing home a preemie baby, and yet when we think of how far God has brought us, we cannot help but continue to trust that He will sustain us and see us through all the issues she still needs to overcome.  He has been so incredibly gracious to us thus far, and we are thankful once again that He is sovereign over all things.  Thank you for continuing to pray for our family!!

NICU Day 57 ~ (February 2nd)

Noelle turned 8 weeks old at 11:27AM today, and it was a little ironic that we had "flashbacks" in the NICU today.  Her little "neighbors" have all switched over in the past few days...one even this afternoon.  It was amazing to witness the preparation and the process for another little one entering the NICU and be reminded of what would have been happening the morning that Noelle was born.  The team was prepped and prepared and was fully aware of what was happening upstairs, long before the baby was born and actually made it into the NICU.  The care and dedication is so evident, and we were thankful yet again for all the people that have cared for Noelle not only on the day she was born but through the past 8 weeks.  We have made true friends that we will have for life, and we are ever grateful for these new relationships and especially for how they have impacted our daughter.  We also were reminded of the "old days."  How quickly we forget things that we were still experiencing only a few short weeks ago...things like heel pricks and blood gases, PICC lines and heplocks, blood transfusions and antibiotics, PIP and PEEP (on the ventilator settings), and the list goes on and on.  Our tiny miracle now weighs 1 lb. 11 oz., is starting to take her feeds from a bottle, and is breathing on her own with some oxygen support.  Do we still have a long road to walk?  Yes.  Are we going home any time soon? No.  But by God's grace, we have come incredibly far, and we were reminded of that today.  Do the prayer requests continue?  Yes.  But for today, we are just going to say, "Thank you, Lord, and we praise You for what You have done and for what You will continue to do."

***As a reminder: if you are interested, Noelle's story is airing on our local FOX 8 news channel tonight at 10:00PM in the Bob Buckley's report.  If you are not local or do not have a television, you can watch it livestream online here: http://www.myfox8.com/news/livestreaming/ .

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.

NICU Day 19 (December 26th)

Overall, Noelle was stable today, but she has dropped 20 grams again putting her down to 14.8 oz.  This was the main focus of the doctors today as they are trying to get her over this plateau and get her caloric intake increased so that she starts gaining weight and growing.  It is a lot of adjustment back and forth with various fluids she is receiving along with the breastmilk so we are praying for wisdom for the doctors and good reception for Noelle of all her fluids so that she gets the most out of them and can start growing.  She also had to receive blood transfusion today as her hemoglobin was low again.  She did have a heart murmur as well, but they are suspicious it is due to the anemia from her low hemoglobin so hopefully that clears up with the transfusion.  Jill was able to hold her again for a short time tonight which was a special blessing~each time is a special treat and never long enough, so we are grateful for each minute that we are able to enjoy that with her.  So overall she is stable but really needs to grow.  Thank you for your continued prayers.  We hope you had a wonderful Christmas!!

NICU Day 7 (December 14th)

In the doctor's own words this morning, "Noelle is stable, and she is having a good day!!" We were so thankful to hear those words today and have an "easy" day in the NICU. Her blood sugar is still fluctuating more than they would like, but they are attributing it to her size and the fact that she is still trying to get rid of fluids from the birth. She had to have another blood transfusion this morning since her hemoglobin dropped a little low but she tolerated it well. Unfortunately, one of the lines into her through the umbilical cord has a clot in it, so they had to put a hep lock into her foot so they can give her transfusions and other IV fluids through there. They were able to turn the bili light off today as her jaundice level was good. That could go back and forth for a while, but it was fun to see her without her glasses today. She had another echocardiogram as well which came back good. She finally had a messy diaper today, so hopefully her x-ray tomorrow will show all the air out of her intestines, and she can start on her feeds again. She will be one week tomorrow, and we are praising God that we are reaching another small milestone at that point. Continuing one day at a time...thank you for your love and prayers!!!

NICU Day 6 (December 13th)

My mom did a wonderful job posting updates these past few days--she's incredible with the medical details, and I'm not sure I'll be able to communicate all of that as well, but we will do our best. Noelle is in stable condition today. The doctors still are not allowing her feedings to proceed due to ...the air in her intestines, but it does seem to be moving through so that is a good sign. Hopefully her x-ray tomorrow will show more improvement, and once that clears up and the discoloration seen on her tummy is gone, they will again resume feeding her and monitoring how she tolerates it. She received a platelet transfusion today as those were low, but her blood sugar and blood pressure were good today. She is still jaundiced a bit, but they have her down to one light (instead of the 2 she originally had) and hopefully will be done with that sometime tomorrow or Thursday. We were able to spend quite a bit of time this afternoon holding her in our hands without the blue light and her glasses on her face. She was very responsive to us and opened her eyes a lot and squeezed our fingers. She appears to have blonde hair!! Under the blue light, we always thought it was dark, but looking at it today in the real light, it is a soft blonde color along with her eyebrows and tiny tiny white eyelashes!! She has her daddy's nose and daddy's toes too. It's amazing to see such incredible details in her even as tiny as she is. I am home now, and we are adjusting to a new schedule and figuring out how to adapt to this new life...but we are ever grateful to God to be here. A few weeks ago, we thought we would be delivering our daughter stillborn at about this time. Today, she is living and while we have an incredibly long road to walk, we are so thankful for each hour, each day that we have with her. She truly is our Christmas miracle. Thank you so much for your continued prayers and love for all of us. It is incredibly encouraging to us--especially on those roller coaster days in the NICU. We thank God for all of you!!

NICU Day 4 (December 11th)

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

Noelle has had another "good" day. Her oxygen levels were stable. Her blood sugar has fluctuated quite a bit today. She also needed another transfusion of blood this morning. They had to give her fentanyl to sedate her a bit because she is fighting against the ventilator, trying to breath on her own and she is definitely not ready. They were able to start feeding her through a tube in her mouth. They are feeding her colostrum on a slow drip. She has tolerated it well so far. Jill was discharged today, but they had them stay in the hospital one more night. Tomorrow they will start working on their daily schedule of Jill being at the hospital early in the mornings for grand rounds to get the Doctors' updates and such, then go home for a while and then after Tom gets off work, go back to the hospital for a few hours. Jill is not in any shape to drive yet so she will have help. My sister is going to be there for several days this week.
We can't thank you all enough for your continued prayers and support as there are still many hurdles ahead.
God Bless You ALL.

NICU Day 3 (December 10th)

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

Praise the Lord--Another somewhat stable day for Noelle. Her oxygen levels were pretty consistent today. They had dropped a bit, but the medical team expected that because they put her on her tummy to sleep last night. She rested much better, but it is harder for her to keep a higher O2 level.
She did also bruise a bit from sleeping on her tummy-- she is so fragile, so she is on her back tonight. Her glucose was down a bit so they gave her something for that and it was back to normal range this evening.
They are going to give her another small transfusion tonight. It's hard for her body to keep up since they have to keep drawing blood to check different levels. Jill and Tom both have gotten to hold her briefly in their hands as the nurses have changed out the bedding and sterile foam "cradle" that couches Noelle. She likes to hang onto their fingers.
Any little imbalance is so crucial to her system, but they keep an extremely close eye on everything and God has been gracious.
Jill is expected to be released later tomorrow and then they will begin the daily treks to the hospital. Grand rounds start at 9AM so Jill will be there early each morning and stay through the morning, then probably go home to rest for a few hours before Tom gets off work and then they will go back up for several hours each day.
They are cherishing each day and thank everyone for their prayers, support and love.
God Bless.

NICU Day 2 ( December 9th)

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

Today was a "good" day. Jill is doing well and no problems with bleeding. They keep checking her blood and she has to still have a hep lock in for safety backup. Someone asked how far along Noelle is. She is 29 weeks, but last measurements a little over a week ago she was only measuring 22-23 weeks in size. She is the smallest baby this ...hospital has had. One baby born just a little bigger than Noelle just went home this week.
Her oxygen levels were doing so well last night they dropped her on down to 21% oxygen and Noelle's O2 levels began to drop so they bumped her back up to 75%. She responded well and they weaned her back down today and she is presently on 24% which the doctors are very pleased with.
They are still running detailed blood tests on her DNA, but so far the US showed mild fluid in the kidneys which they believe could even be resolved now because she has good output. The preliminary on the ultrasound on the brain is that everything looks good. The doctor just want to get one more specialist's opinion on it, but the doctor said they don't believe there is anything that they can see. The nurse told Tom tonight that they got the results back from the ultrasound on her heart and everything appears normal. They should get a full report in the morning when the doctors do grand rounds.
They have been taking blood to check oxygen levels and the genetics doctor took to run DNA testing so they will probably give her a tiny transfusion tonight, she was 1/10 of a point below the level they want a certain blood level at.
Her blood pressure has been running a bit low and they have been giving her a drug called Dopamine in small increments. This evening it was finally up to a level that they are happy with.
They are pumping all kinds of nutrients into her along with some "fatty emulsions". I guess last night she wasn't tolerating the fatty emulsions well so they have backed off for now and will reintroduce later. They hope to insert a feeding tube in the next few days and give her breast milk.
She appears to be very responsive to Jill and Tom's voices and continues to be called feisty by the doctors and nurses. They can't believe she is so active and responsive.
The medical team has been great, but they continue to lovingly share with Jill and Tom that because Noelle is so tiny she is still "very sick" and anything and everything can be a factor in causing her risk. It is minute by minute and they greatly appreciate everyone's prayers, support, love and care. They are thankful for every minute God has allowed them to have with Noelle.
Good night to all.