Showing posts with label Discharge. Show all posts
Showing posts with label Discharge. Show all posts

Monday, July 16, 2012

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.







Thursday, July 12, 2012

PICU Day 18 ~ {July 12, 2012}

A full update will be coming sometime in the next few days, but we did want to thank people for praying and let everyone know that we are home!!!  God was gracious in so many ways, and you will understand more when we have a moment to share details.  We still spent a full day at the hospital today and arrived home around 9:00PM and are quickly trying to adapt again to being attached full time to oxygen as well as a pulse oximeter amidst the other adjustments of things such as administering all of her new medications according to the proper schedule.  However, it is worth every single "inconvenience" just to be home with our sweet girl.  Thank you for praying so earnestly for us, and we look forward to sharing the details very soon.  To God be the glory....great things HE has done!!!

Sunday, April 22, 2012

NICU Day 123 ~ (April 20th)

~All dressed up for the trip home!!~
 After all the confusion on Thursday, I was fully prepared for a lengthy discharge process on Friday; but it was not necessary.  With one signature, a change of outfits, and the packing of a just a few items, we were out the door and on our way home!! 
~"Thank you for taking care of me!"~
We said good bye to her nurses, a couple of which had been her nurses the first time she was here in February.  She was only half her current size at that time (less than 2 lbs.), so they had enjoyed seeing how much she had grown in the previous 2 months.
~Final Goodbyes~
We did get stopped quite often on our way out due to her little tutu and headband, custom made by our sweet friend, Emily Curtis (http://www.etsy.com/shop/EmmysBB).
~Ready for the ride home~
I thoroughly enjoyed the trip home, knowing that our precious bundle was in the backseat sleeping contentedly.  She is now settling back into her own surroundings, and we are loving being mobile and able to carry her around home without being attached to machines.  While I would never wish the ER experience on her again, we are incredibly grateful for the way God orchestrated the surgeon He desired to perform the surgery, our neonatologist Dr. Tatum to be on service, and the ability for her to come off her oxygen.  In the end, it made this last week worth it and allows us to remove that surgery from the list of things to still be performed. 
~This one is a little fuzzy but too cute not to share.  Happy to be home!!~
We were very aware of your constant love and prayers this past week and thank you for your persistence in prayer on our behalf.  We look forward to sharing more milestones in Noelle's life in the days to come.

***Again, now that we are home, I will post only once or twice a week as we settle into a new routine and enjoy time together as a family***

Sunday, April 1, 2012

NICU Days 115 & 116 (March 31st & April 1st)

~Sanding the hutch for Noelle's clothes & baby items~
The last two days have been a bustle of activity as we prepared for Noelle's home coming scheduled for tomorrow.  Thankfully, we had obtained her crib early in the pregnancy but had taken it to a friend's {the Shaws} home to paint it and then ended up storing it there after our first ultrasound revealed initial bad news.  We moved to a new place only a few weeks before that sad day and once we had the first news report, we decided not to put together a room to which we would have to close the door for an amount of time if things went as the doctors said they would.  Things began to change only a few short weeks before Noelle was born; and then once she was here, we practically moved into the NICU and have lived there the past nearly 4 months.
~Alex helping Uncle Tom~
Needless to say, we never did get things painted or her room put together, so we spent Saturday performing prep work on the furniture pieces.  We are moving some things around in our home, painting them, and re-purposing them to work for our needs.  I look forward to the day when we can reveal the final results, but we were excited at how much we were able to accomplish yesterday.
~Sanded and ready for the next step~

After finishing the sanding, we met the oxygen care people at the hospital for our training on Noelle's oxygen support and apnea monitor.  We're hoping she will be free of these things after gaining a couple of more pounds, but we are thankful to have these items for our transition home.  Then came the fun part for which we have waited many days.

~Noelle getting set up on oxygen in the parenting room~
We had the privilege of spending the night in one of the parenting rooms with our little girl.  Ironically, we were assigned the same room in which we had stayed during the week in January when she had become extremely sick with pulmonary hypertension.  Thankfully, we will have more pleasant memories of that room as of last night since Noelle did very well through our trial run; and we are looking forward to our first night at home with her.
~Settling in for the night in the parenting room~
If all goes well, we will be home with her by late tomorrow afternoon and are filled with anticipation and excitement for this new path in our journey.  Simultaneously, we are saddened at the thought of saying "see you later" to our NICU family who has embraced us and taken such wonderful care of us these past many weeks.  We are so grateful to God for not only bringing us through this trial but for the way He has brought us through this trial and for the lifelong relationships we have established along the way.  We will miss everyone tremendously!!
~Amanda: Noelle's Admit Nurse & Discharge Nurse~
~Amanda admitting Noelle on December 8, 2011~
The plan tomorrow is for Amanda to be Noelle's nurse and walk us through the discharge process after morning rounds and the discharge orders are written.  This was special news to us as she was Noelle's admit nurse on the day she was born and has taken wonderful care of her at different points through the past nearly 4 months. What a bittersweet day it will be!!  Thank you so much for your continued prayers.  We know this new path will not be without its own bumps and hurdles, but God has promised to never leave or forsake us, and He will finish the work He has begun in us.  We look forward to continuing to share His goodness and declaring His glory!!

~We will certainly continue to update this blog.  I will probably cut back to once or twice a week {depending on what is happening} but will certainly continue to update everyone on Noelle's progress.  Thank you for praying!!~
~FOX 8 News is running a home coming story tomorrow evening at 10:00p.m.  We will post the link and pertinent information tomorrow evening before it airs~


Monday, February 6, 2012

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.