Most Recent Happenings / PICU Days 1 & 2 ~ (June 25th & 26th, 2012)

We will continue to post as we are able and will add pictures when possible, but Noelle has been admitted once again to Baptist as of yesterday.  She had not been herself for a few days, and I thought it was possibly due to her thyroid levels which we were having checked Monday morning.  Those levels actually came back too high {instead of too low, which I had wrongly suspected}, so yesterday afternoon I took Noelle to her pediatrician to address the lack of eating and constant drowsiness she was displaying.  However, when I pulled her out of her car seat at the pediatrician's office, she was a dusky purple color, fussing, and just not looking well.  They quickly grabbed some oxygen and a pulse oximeter {which proved her levels were very low} and called 911.  Within minutes, we were at the ED and being rushed through stabilization procedures and the admission process; and after an x-ray and echocardiogram, it was determined that her pulmonary hypertension is elevated once again and has caused the right side of her heart to fail.  This has also started leading to other issues such as swelling of her heart, slight depression of her left ventricle, fluid around her heart, and liver enlargement as well.   They do believe we caught it in the early stages, but it is unclear at this point how things will progress.  We are thankful that she has responded well to the treatment thus far (the same treatment she was given in January for this issue: milrinone and nitric oxide), and they are working on changing over this treatment to oral medications so that she can be managed at home after a few days and followed as an outpatient.  The large concern is that they are not sure what set things in motion for this to happen again, and this issue could go either way over time.  It could continue to get better and heal with time or it could worsen again and eventually need further intervention to keep her heart functioning.  Many things have been presented, but there are so many "what ifs" that we are just focusing on what we know and how she is currently responding in the moment.  She was acting more like her old self last night and this morning, although this afternoon she has reverted somewhat again; but we believe that is due to her large lack of sleep through the past 24 hours more than anything else.  Please pray for rest and strength...mostly for Noelle but for all of us, as well as continued wisdom for the doctors as they seek to understand what is happening, why it is happening, and how to properly treat what is happening.  Amidst the chaos, drama, and the multiple unknowns, there is still immense peace; and we know that God is continuing to shape and mold His plan for our little family.  Some lyrics from an old song kept floating through my head and were a comfort last night....

There is peace, there is calm in the midst of the storm,

The Lord is there beside me.

He gives grace, He gives power, He gives strength for each hour...

...

There is joy in my soul, for the Lord has control, 

And beneath are His everlasting arms.

Thank you for your faithful, constant prayers.  We will continue to update as we are able and as we have access to the internet.

Noelle's Evening with Daddy

Noelle absolutely loves her daddy and cranes her head towards his voice whenever she hears him talking to her.  He had some time this evening to devote just to her, and she thoroughly enjoyed their activities together.  The pictures say it all!!

~Daddy reading her a story~

~Looking at the pictures~

~Soaking up the snuggles~

~Catching a cat nap~

She currently weighs 3 lbs. 15 oz. and is in and out of doctor appointments right now for various observations and procedures.  They have postponed the biopsy for another month but now believe that it is probably unlikely that she has Hirschprungs disease.  It is definitely still a possibility, but it is encouraging that she is currently doing very well in that regard.  We also had encouraging news this week regarding her hypothyroidism and now understand that this may be a transient issue which she could outgrow.  If not, she will be treated with medication for the rest of her life, but we are thankful for the hope that this may pass and are grateful as well that it is a controllable issue, regardless of the final outcome.  Thank you for your continued prayers as we continue to wait and trust God for more answers regarding Noelle's health.  He has certainly brought us this far, and we know He will never fail us.  What a comfort in which to rest!!

NICU Day 106 ~ (March 22nd)

We are praising God that our precious little girl weighed in at 3 lbs. tonight!!  Not only that, but they also dropped two of her four medications today as she has now recovered from rickets and her labwork showed improvement in other areas as well.  The only medications she now receives are synthroid (for her hypothyroidism) and iron.  It appears that we are coming down to our final days in the NICU.  Everything hinges on the results of her intestine x-ray next week, but she is doing so well on all other accounts that they really feel that our home going is not so very far away.  The one main thing she must still overcome is the bradycardias (episodes of dropping her heart rate).  This is very common with preemies, and she seems to have outgrown the random bradycardias that she previously had; but she is such an aggressive eater that she sometimes causes herself to choke and drop her heart rate while she is eating.  She acts as if she has never been fed in her life and will never be fed again (although, who can blame her after she has been taken off her feeds so many times!!).  Thankfully, she had no episodes today, and she will have to complete 7 consecutive days of no episodes before she is allowed to leave the NICU.  She may still come home on oxygen; and to be honest, I actually would not mind that.  It would mean some inconvenience in that she would be attached to her cannula and a monitor, but that actually is a comforting thought for making the transition home.  I cannot imagine sleeping the first several nights without her hooked up to anything!!  If she weans off her oxygen before coming home, it will be great; but if she comes home with it, then that will be fine too.  So if all goes well next week, then we may be home by the middle of April!!  Mentally, we are preparing for setbacks (though none are anticipated at this point); but physically, we are in a whirlwind to get things ready for her to be at home with us 24/7.   We know this journey will simply take another turn when we reach that day, but we are excited for this "bend in the trail" and are looking forward to what God has in store for our family as we turn the corner.  Thank you so much for your continued prayers, love, and support!!

NICU Day 51 (January 27th)

Today was another really "boring" day in the NICU.  Noelle gained 10 grams, putting her at 1 lb. 8 oz so we are closing in on doubling her birth weight again.  She took her bottle like a champ today, but she mainly just rested and grew.  Her pituitary gland study was determined to be just fine, so we are thankful for that.  They are actually decreasing her thyroid medicine a little bit, so we are hoping it is a sign that perhaps she can eventually keep adjusting her body and grow out of the issue.  She may not, but we are hoping she does.  Other than that, it was a pretty uneventful day...the very best kind!!  As always, thank you for praying!!

NICU Day 50 (January 26th)

~Aunt Donna Holding Tiny Noelle~

Day 50 in the NICU!!  Wow!!  So many milestones have been reached.  First, we had to get through the first 24 hours and then the first 48.  After that, it was 2 weeks, then a month...now we are at day 50 and closing in on 2 months.  So much has happened during that time period and through it all, God has drawn us closer to Himself and made Himself even more real to us and taught us so much through this process, and we know it has only just begun.  Noelle was really sleepy today.  Normally, she will wake up every four hours with her diaper change, but today she would just kind of peek one eye and then go right back to sleep.  She was not lethargic...just sleeping deeply.  It is great to see because it means that she is growing and not burning calories moving around and being awake.  She was alert for a short time tonight but we got her put right back to sleep before we came home.  She gained 40 grams yesterday and weighed in at approximately 1 lb. 7 oz. so if she can keep on that path of growth and weight gain, we will be doing really well.  They are currently running some panels on her pituitary gland since she has had issues with her thyroid and blood pressure at the same time.  Hopefully the answers from that will give them direction on how to adjust her medication (if needed) and help her continue to grow.  She is doing well on her cannula, but she has not been able to wean down on that as of yet so we are praying that she can start doing that soon as well and get down to room air and breathe completely on her own.  We are so thankful to be reporting another good day with our little girl.  Thank you, Lord!!!

NICU Day 44 (January 20th)

Noelle had an absolutely fantastic day today!!  She graduated to the cannula for a short time and just had oxygen flow.  It was amazing to see her whole face without all the big tubes and hat and things wrapped around it.  We can hardly believe what we are seeing only two weeks after her last big dip in the roller coaster ride.  Everyone is amazed at her progress, and even some of her nurses have said that it could only be of God.  Incredible!!  We never dreamed we would be this far with her only two weeks after such a severe episode, and we know so much of it can be attributed to the power of prayer and cannot thank you enough for the part you have played in her tiny little life.  We still have a long ways to go, but the steps we have been able to take in the last couple of weeks are such an encouragement.  It is fun to dream about the day when she might come home and all the things that go along with that.  We did hear a teeny tiny little cry from her tonight!!  There never was a sweeter sound in all the world.  She is still a little hoarse and raspy from the tube being down her throat, but she is making tiny noises nonetheless, and they are music to our ears.  The main thing now is for her to grow.  She did lose some weight (part of that is due to the fact that she was extubated and all the tubes that go along with that), so we are hoping that she gets back up to doubling her birth weight soon (she is currently 640 grams).  Another prayer request is for her hypothyroidism.  Some babies outgrow this (as is our prayer for her) and others have it the rest of the their lives.  If she does have to deal with this the rest of her life, then we will take it!!  But if God chooses to heal her of this as well, it would be another added blessing.  Other than that, we just enjoyed our time with her today.  She will go back and forth from the CPAP to the cannula until she can just stay on the cannula until she is off oxygen completely (we hope and pray it goes this way...it should, as long as she does not have a setback).  I hope we can put up some great pictures tomorrow in which you can see most of her face!!  Thank you for sharing in our joys and our sorrows through this process and for praying accordingly.

NICU Day 10 (December 17th)

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

Thank you all so much for your prayers. Jill and Tom were able to meet at length today with the neonatologist who was on duty. He happens to be the one present at Noelle's birth and helped take care of her and has even checked in on her this week when he was off.
First off, one correction is that Noelle has hypOthyroidism not hyper--. That was a misunderstanding on the terminology. Anyway, the medicine they started her on for that seems to be helping. Her blood sugars have been stable the last couple of days.
Her breathing is doing very well. She has done very well with her oxygen levels even as they have stepped down the work that the ventilator is doing for her. We hope to see improvement soon in the one small area of lung that wasn't as developed.
Major praise today--Jill actually got to hold Noelle outside the incubator for about 30 minutes. Noelle just snuggled up and slept.
The doctor took Jill and Tom to an area where he could show them all the images of Noelle's brain and show them the area that was of concern. The big concern is for a brain bleed. He said they aren't seeing symptoms of that. The lateral ventricle (I don't know if just one or both) slightly larger than what they usually see. He said this may just be normal for Noelle and not mean anything. They are watching for a brain bleed and for fluid build up in the brain, but he said that if this were to be going on there would be symptoms and Noelle is not exhibiting any symptoms so they will just continue to monitor closely.
Her feeding tube was bumped up to 0.3 ml/hr today. She tolerated the 0.2 well the last 24 hours. Still a ways to go. They usually like to see babies this small be taking in 3 ml/hr. I figured out that at the 0.2 level that gets her 1 tsp. in 25 hours. At 0.3 she should get 1 tsp. in about 16 hours. I pray she continues to do well so this can step up to a more substantial amount, but she is tolerating this well and it is allowing her intestines to grow and start to function properly.
She weighed 440 grams today which is about 15.5 ounces. That is good. She had so much swelling and edema from the birth that they warned Jill and Tom that she would drop weight -- most likely below her birth weight (365 grams/13 ounces). The swelling/edema/retained water is almost gone, but her weight is still up. She did drop 10 grams today because yesterday she was 450 grams, but that is not anything of concern. We hope to see this weight continue to go up.
Lastly, Jill and Tom would appreciate your prayers for recovery, rest and calmness in the midst of stress. It's beginning to catch up a bit. (That's why I'm doing the update tonight). They are trying different ways to work their schedule to see what will work best and I know they would appreciate prayers for wisdom and discernment. Thanks to you all and my God Bless!!

NICU Day 9 (December 16th)

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

Today brought mixed emotions. Noelle is tolerating the reintroduction of the feedings very well. They were to increase the amount they are giving her sometime today. The amount they are raising to is the amount they originally gave her, but she has done well the last 24 hours so they feel her system may be adapting.
They are "bumping down" the ventilator setting. There is one area of her lung that looks to be "lagging" behind. It is believed to be because the ventilator is doing too much of the work and her oxygen saturation levels are good so they will back the ventilator down to do a bit less which in turn should make Noelle's lungs work more and thus continue to mature.
She is on the medication for the hyperthyroidism. Hopefully we will start seeing the results of this in the next couple of days -- blood sugars more steady, the slight "bulging" of her eyes receding, and her gaining more weight just to mention some. She has put on a bit of weight.
She was awake more today and looking around.
Major prayer concern (along with the regulars) is that a new doctor was on service today and expressed concern about the comparison of last week's ultrasound on the brain (which we've been told was fine) to this week's ultrasound of the brain. He is concerned there might be an increase in fluid in the brain -- which could be very problematic. He is asking for a pediatric radiologist to review it, but in the meantime Jill and Tom are in limbo and not really sure what this would mean nor what to expect. Lack of sleep, recovery from C-section and for Tom going back to work this week -- it's all a bit overwhelming. They are praying and just trying to stay focused and not react. The doctor that was the neonatologist present for Noelle's birth is on duty tomorrow so they are going to meet with him and go over some of this "stuff" in detail with him tomorrow (as long as he doesn't get called to an emergency delivery or such).
I know they would greatly appreciate everyone's continued prayers as all this continues to get worked out and figured out. Noelle is so far away from being "out of the woods" that it can be overwhelming not knowing what God actually has in store and like Jill said, "sometimes it's not even about you, but what God is trying to accomplish through you in someone else's life". It's just not always fun walking the road and even more difficult when tired emotionally and physically. They are doing well, but I thought I'd share a bit more so you all could pray a bit more specifically right now. Thank you so much and God bless.

NICU Day 8 (December 15th)

Today at 11:27AM, we celebrated one week of life outside the womb with our little Noelle!! I cannot believe we are at this day already--it still seems like yesterday that all the drama was going down, and they were delivering our baby girl. God's amazing grace has been so evident as we look back on that day--the timing of the details could not have been orchestrated by anyone other than Him. Noelle had another good day today and is still stable. The doctors discovered that she has hyperthyroidism and have started her on the medications for that, so hopefully that will help the blood sugar fluctuation and weight gain especially. It is not certain whether she had this in the womb and thus it contributed to her small size or if it's something she has since developed. Some preemies develop this as a "transient" thing and grow out of it. The geneticist also called today and said the fast results on Noelle's blood came back normal concerning her chromosomes...just like the amniocentesis. The full results won't be ready until the new year, but it was yet another encouraging sign that nothing is glaringly wrong. So, another day down. We are thoroughly enjoying our precious bundle--she is becoming more alert at times and is very responsive to our voices and touch. Thank you for caring enough to read these updates and keep up with our small family. Your expressions of love, your kind comments and thoughts and especially your prayers are appreciated from the bottom of our hearts. We wish we could communicate back to each one of you!! Thank you.