PICU Day 18 ~ Full Update

~Smiles after being told we were going home!!~

Today started like every other hospital day with the Lovenox shot at midnight, a bottle, a few hours of sleep, and then labs and another bottle at 4:00a.m.  I was especially anxious to get this particular set of labs over since they were planning on doing an arterial stick in the hopes of getting a more accurate reading for the blood gas.  The arterial sticks are more difficult than even the regular ones they take each day; and at Baptist, the nurses are not allowed to do them.  So a respiratory therapist came and tried once, failed, and they decided to simply do a regular blood draw from the vein.  Thankfully, we had a good nurse who had been able to do it in one try the previous night and again got it in one try this morning.  We were especially looking forward to these results since they would tell us the CO2 level in her blood and let us know whether or not we were on our way home.  Mid morning brought an x-ray, but this was different than all the other x-rays which we had had done at the bedside (with a machine they wheel around the hospital).  Instead they brought in a wheelchair with an attached oxygen tank, had me hold Noelle while seated in the chair, hooked Noelle up to the tank, and then took us up one floor to the radiology lab to have a fully detailed x-ray done.

~Final hospital snuggles with Daddy~

~Almost ready to go...~

Poor little Noelle did not know what to think when they strapped her to a board with her arms above her head and took pictures with her lying flat and then on her side (she was strapped to the board and her face was quite funny as she was "suspended").  Late morning, the medical team finally made their rounds and had three great things to report to us: 1. The CO2 level was still on the high side but was significantly better than the previous day, 2. The blood clot in her leg was completely gone and thus the Lovenox shots would not be required any longer, and 3. We were going home!!!  That news was music to our ears, but we could not rush out the door as there were reports and prescriptions and final procedures to complete.  The news of the blood clot was an extra special praise to us as it could have been quite serious and caused some damage, but it was also a praise since it meant we would not be required to continue those shots at home (which I was dreading, even though I would have figured out some way to deal with it...without doing it myself!).   It was also one less thing to concern us and to watch closely, amidst the many other issues

~A friendly reminder to well-meaning people~

for which we were already facing extra doctor appointments and close following.  The rest of the day was spent with the typical feeding schedule, vital signs, filling prescriptions, speaking with various specialists and other medical staff, visiting with a dear friend from church, getting discharge instructions, scheduling follow-up appointments, and packing up everything from our 2 1/2 week stay.   By the time we had done all of that, signed our discharge papers, made multiple trips to the car with our stuff, connected Noelle to our own portable oxygen tank, and situated her in her carseat, it was after 8:00p.m.; but we did not care since we were going to be going home!!  With some final snapshots and a few goodbyes, we were on our way; and walking through those hospital doors to the outside world felt like true freedom.  I had not stepped outside that facility in five days and had made it home only a few times during the entire 18 days, so I was especially looking forward to having my family all together in our own space once again, with no more midnight shots, no 4:00a.m. and 4:00p.m. labs, no more x-rays or ultrasounds, and so many other things.  The sleepless nights would continue~that is just part of being a parents; but we would still get more sleep than we did in the hospital, and it would certainly be more restful.  We made it home around 9:00p.m. and

~Fully enclosed & ready to ride~

~Ready to leave our room~

connected Noelle to her oxygen machine and pulse oximeter, unloaded our vehicles, fed her, and readied for our first night home.  It was an adjustment~mostly because the pulse oximeter decided to false alarm multiple times through the night.  However, Noelle rested very well without the usual interruptions she was used to experiencing, and the smile she gave me first thing the next morning melted my heart and made me so thankful to God for bringing us through this event in the manner that He did.  It was not without fears or struggles or tears; but it was also never without true peace, and the fears and struggles were dealt with best when left at His feet. 

~Sweet smiles after the first night home~

So now what?  We continue to make the adjustments of being home with a baby that is on oxygen, a monitor, and multiple medications while also making multiple trips a week to various doctors; but while challenging, it is worth every effort~especially when we consider the alternative.  This trip through the ER and PICU was certainly not easy, but we also saw many other children in those places who did not walk out the hospital doors and who will not walk out those doors with the same results which we did.  It keeps things in perspective for us, even as we walk our own road.  We have been warned that more hospital stays are likely in our future, given the severity of Noelle's lung condition; however, we also know that we will not end up there again without God's sovereign allowance.  So we walk through these days with caution, with protection, and ultimately with trust, knowing that He has gone before us; and we look forward to the days when we can "relax" and deal with the "easy" things such as teething, trips and falls, stitches, broken bones, and the various emergencies that "normal" children and parents face on a daily basis.  In the meantime, we do not take one day for granted and continue to thank God for this precious miracle that grows more and more dear to us each passing day.  May God richly bless you for your fervent prayers on our family's behalf.

PICU Day 16 ~ Full Update

~Chilling before the swallow study...hungry & sleepy~

Today was a very busy day with various tests and changes, but it was encouraging to move forward with some things in an attempt to seek answers, as opposed to simply waiting for some other symptom to surface.  The day began at midnight with the Lovenox shot, but Noelle actually settled quite quickly afterwards and was able to sleep until they needed to draw labs at 4:00a.m.  Unfortunately, her central line was no longer pulling back, so they had to stick her separately to obtain what they needed; but of course, it took three times to secure the full amount required for the tests they needed to run.  Thankfully, I was allowed to give her a partial feed with her bottle and distract/console her and then spend some time cuddling as well.

Actually, the consoling is probably more for myself than for her as she recovers quite quickly now that she is feeling so much better.  It still takes a toll on her, but our happy girl bounces back and often has smiles for everyone as soon as they are done messing with her.

~Sleep finally won out~

Through the night, the nurses had been carefully recording all of Noelle's desats for the pulmonology department to review, but she had had only a few and had self recovered quickly.  However, two hours after her early morning bottle, she starting desatting back to back, giving better insight into some of the things I had described previously to the doctors.  While I do not like to see these things happening, I am thankful that it is happening while we are still in the hospital so the medical team can see for themselves what I have seen and suspected for weeks.  7:00a.m. brought the need to obtain a blood gas; but she was so tired that she simply showed some discomfort but did not open her eyes and settled back into a deep sleep after they were done.  

~These echocardiograms are not so bad!!~

The large concern presented here as they discovered that Noelle's CO2 levels were significantly high, but other things were on target so it puzzled the medical staff greatly.  We reviewed things again through morning rounds, and the cardiologist decided to further consult with the GI and pulmonology departments for the various issues we were still experiencing.  The determination was to send her for a full swallow test to be certain she was not aspirating while feeding, as well as to see if they might possibly detect any signs of reflux (this is not the test used for reflux, but they can sometimes see indications).  This test was amazing to watch!  We traveled to a different floor (which is no easy task with a baby on oxygen and monitors...the equipment they can attach to her hospital crib is impressive!!), and entered a radiology room that had a very large machine.  They put Noelle in a little seat behind the machine, and I was allowed to sit a distance away and watch the results on a computer screen.

~Sporting a new headband from Auntie Em~

~Early Morning Bottle~

They put a small amount of dye into her milk and then fed her as she sat in the baby seat, all while the machine took an x-ray video of her progress.  The x-ray video portrayed on my computer screen and literally showed the milk in her mouth, the swallow motion, and the milk coursing through her little body down to her stomach.  It was incredibly enlightening and was fun to watch!!  Thankfully, she passed the swallow test with flying colors, but they did see signs of reflux (for which I was thankful...we have known for months that she is refluxing but were not sure of the severity).  That gave a pretty definitive answer to the desat episodes; and they decided to switch her medication in an attempt to better control the issue.  From there, we traveled back to her room and met the ultrasound technician to perform her echocardiogram, on which we hope to have results back today (we are looking for better function of the right side of her heart as well as lowered pulmonary pressures).  We consulted with the pulmonology department in the afternoon, and they are puzzled by this high CO2 level and are not willing to let her go home with this issue unsolved.  Unfortunately, because it is so unusual, they are trying some different therapies/treatments but are not sure of the cause or the solution for this issue.  Consequently we started some PT chest therapy and albuterol treatments for 24 hours, and they will recheck the blood gas at the end of the day to see if any changes have occurred. We then were informed that although we are still sorting through these final issues, Noelle was stable enough to move to "the floor" (which is really only a few doors down from where we were currently), so we made the transition to the much larger and more private room.  The evening was spent doing laundry (yes, we feel we fully live here now!!), and getting back to Noelle's regular feeding schedule as well as the therapy schedule for the night.  Of course the amount of time that needed to occur between the feeds was different than the therapy, which was different than the shot, which was different than the labs.  So needless to say, it was an eventful night; but thankfully, Noelle seemed to rest very well in between all of the interruptions.  We are hopeful that after getting back to full bottle feeds and the repeat blood gas that we will be cleared to go home and continue care as an outpatient.  We are so thankful for the little things that God allows to happen to encourage us and strengthen us along this path and are excited at the possibility of going home very soon!  Thank you for praying along with us.

NICU Day 65 ~ (February 10th)

After a bit of a rough night last night, Noelle recovered well and had a pretty good day today.  Her acid reflux is still causing issues, but they were able to give her something to help clear out her intestines last night, and that seemed to help her for now.  She had a busy night with x-rays and lab work, but the results from both of those came back normal, so we're grateful that she seems to be feeling better today.  Many have wondered about her acid reflux and what might affect her, but after much discussion with the medical staff, it is not related to my diet.  The acid reflux is caused because she is so tiny, and her stomach just has difficulty handling all of that milk at one time.  She needs all that milk to grow, and yet the high amount causes the acid reflux, so "we can't win for losing" on this one.  Thankfully, she is continuing to grow and now weighs 870 grams / 1 lb. 14 oz.  We are getting so close to 2 lbs. and are excited to be reaching another milestone with her!!  Our time with her today was really special.  She is becoming so alert and responsive to us, and I thoroughly enjoyed watching her respond to Tom as he read to her this afternoon.  She completely turned her head toward his voice and just stared with eyes wide open.  It was incredibly sweet to watch such a tiny little person respond like that.  She definitely knows her daddy!!

~Listening to Daddy Read~

We also discovered today that "when the parents are away, the nurses will play!!"  Noelle has a little stuffed giraffe given to her by Kaci, one of our nurses' daughters, and it sits on her isolette.  We have commented before, that she is small enough to ride it, but last night our nurse decided to have some fun and play with Noelle and her giraffe.  The result was a CD of pictures for us entitled "Rodeo Noelle,"  and the pictures are just too cute not to share.  We love our nurses and are glad they have fun with our little girl while they are taking such good care of her.  

Thank you for continuing to pray for our sweet little girl, and we look forward to sharing more of these moments that God gives us with her.

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.

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.

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 5 (December 12th)

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

The roller coaster ride continues. Noelle was stable today, but the Dr.'s are carefully monitoring a couple of things. One is her glucose levels. She will have a couple of normal range levels and then it will drop. Right now they are attributing it to her size, but if it continues they will have to consider and endocrine problem. Also, today her tiny abdomen was a bit distended. An x-ray was ordered and revealed she had gas in her intestines. They stopped the feeding tube and ordered another x-ray for this evening to see if the gas is moving thru her intestines. The gas had moved tonight and they will check again in the morning. There is a serious concern for NEC--Necrotizing Enterocolitis. This is a disease to which especially preterm infants are susceptible. NEC involves inflammation and infection that destroys the bowel. It usually occurs after milk feedings begin because the infant's intestinal tract is so immature. If an infant gets this it requires emergency surgery to save them, but at this point surviving the surgery is questionable.
They were happy with the x-ray results this evening and we are praying that the x-ray in the morning will show continued movement in the intestines.
Another battle is how fragile Noelle is. Her skin is so thin and not fully developed. She bruises easily and is so very fragile.
On a good note she is responding to light and opens her eyes. It has been noted that she really responds to Jill and Tom talking to her. They continue to use a very low dose of Fentanyl to calm her just enough so she does not fight the ventilator.
Jill is home now and beginning a daily schedule of going to the hospital early in the mornings for grand rounds then going home for a while to rest in the afternoon and then she and Tom will go up in the evenings after he gets home from work. My sister is there this week helping and their church family is also helping tremendously.
Pray as they wade through all the paperwork that has to be done for such a birth and hospital care.
God Bless All Our Family and Friends