PICU Day 9 ~ (July 3, 2012)

What a day!!  It all started in the wee hours of the morning as Noelle's peripheral IV came out and a new one had to be inserted.  The process took some time since she is a difficult stick, but they were able to obtain it in one try this time with a location on her head.  I have mixed emotions about the head IVs since I hate the location; but they usually last longer than the feet or hands, and she cannot rub it, pull it, kick it, swat it {you get the picture....she has lost more than one IV in these manners}.  I was happy she was stuck only once; but that was short lived when a few hours later, they discovered her head was bleeding out from the IV site.  Then began the long and tedious attempt for another IV insertion.  We have been through this process multiple times this week beginning in the ER on day one, when it took seven attempts to place the first IV.  Peripheral IVs last only so long and when they do not flush or they simply come out, another one must be placed; and because Noelle is such a difficult stick {due to so many IVs in the past as well as her small size}, this can mean multiple sticks before success is reached.  Counting the IV attempts, blood draws, heel sticks, and  toe sticks, I calculated that she has been stuck more than 50 times this past week; and by today, I decided that something better must be done and made my wishes clear to the medical staff {as graciously as possible, but with urgency and concerned, watery eyes}.  I know it is a necessary evil which we have endured probably a few hundred times through the last seven months {and that is not an exaggeration}, but she can only tolerate so much; and since our request for a PICC line was refused a few days ago, I found it ironic that it was brought up by the staff today as a solution to the problem of constantly sticking her.  {I will say that we have been very happy with her overall care this time around; but an extremely high standard was set at FMC, and our expectations are thus very high as well}.  One thing quickly led to another at this point, and when they informed me of some medication changes while rounding on Noelle a short while later, I started questioning the direction of her care plan.  Thankfully, the cardiologist was nearby, and they quickly called him over to explain their current decisions.  I believe a misunderstanding had taken place since we had never intended to halt the original care plan while seeking a second opinion from Boston, but that was the impression given.  So after a short discussion, we were told that Noelle's original procedure spot for today had opened up again, and we could proceed with the heart catheterization according to our original schedule, if we so desired.  We had hoped to hear from Boston just for confirmation, but Tom and I discussed it and felt strongly that we should not delay any further but proceed for the sake of Noelle's health and the need for a confirmed care plan.  Things again progressed quickly from this point and after enjoying some sweet smiles and snuggles with Noelle, the cardiologist arrived to discuss the procedure and sign the paperwork.  Just as he was arriving, the specialist from Boston called and confirmed that he felt the care plan was what they would do themselves and that the heart catheterization was the next move they would also take, but he did not see anything pressing that made him feel a transfer was necessary for them to do at this time.  We were especially thankful to God for this affirmation of our decision and proceeded with the cardiologist through the next steps.  It is daunting to listen to and discuss the process of such a procedure along with the possible risks and side effects, and it makes us even more thankful that Noelle ultimately never rests in the hands of her current medical team but in our great God who loves her even more than we do.  Not long afterwards, she was being wheeled away; and I was very grateful for some dear friends from our church who came to sit and visit with us as we waited.  They dropped everything they were doing and rushed to the hospital to be with us during a time that would otherwise have seemed to drag on continuously.  The procedure took some time, and they experienced some issues with her ventilation process that they did not expect and actually had not seen in other patients; but she still did well overall, and everyone was ultimately very pleased with the final results.  They were able to obtain a baseline measurement of the pulmonary pressures and are happy to say that she is no longer the severe case that she was upon arrival last week, but she is now a moderate case {although they still consider this very serious in the realm of pulmonary hypertension, it does display good improvement, for which we are grateful}.  The best news of all was that though her heart anatomy was a-typical and not what they normally see, everything still originates in the right locations and is directed correctly {although it does not take the expected path~surprise, surprise!!} and is within normal range and obviously normal for Noelle.  This came as a huge relief after the multiple issues through this past week.

~Puffy from the procedure but very alert and wondering "Why do these people keep sticking all these tubes down my throat and nose?!!"~

Noelle finally arrived back in the PICU and though she slept deeply for some time, she has already started waking up and showing some signs of a very alert state.  Based on what we have seen so far, there is a strong possibility she will come off the ventilator tomorrow, and we can begin the rest of the therapy needed to start managing her pulmonary hypertension and hopefully avoid another serious setback such as this one.  One other main concern tonight is that they believe she has developed a blood clot in one leg, have started treatment necessary to manage it, and are closely monitoring it at this point.  We are pretty tired after such a long week and an especially long day, but we are also incredibly grateful to God for the answers that He provided today through this procedure.  While we are just beginning to understand the seriousness of her pulmonary hypertension and the long road it will be, things could have been much much worse; and God graciously spared us during this time.  My little joy tonight?  They were able place a central line while she was under anesthesia this afternoon, and so peripheral IVs and blood sticks are unnecessary for a few days until they place a longer lasting PICC line (I wish we could steal you for that, Keri Prybolo!! {Keri was one of our nurse practitioners at FMC, and she placed Noelle's very first PICC line with one try when she was still less than 15oz.!!}).  No one will estimate how much longer they think we will be in the hospital, but all evidence shared indicates that it will still take some time.  Regardless, we just rejoice in the huge blessings God gave us today and thank and praise Him for all He has done.  Your participation through encouragement and prayers means so much and continues to point back to the great God we serve.

NICU Days 80 & 81 ~ (February 25th & 26th)

The last couple of days have been a little up and down again as we "climbed another small hill" with Noelle.  Her little tummy has always been on the large side, but yesterday afternoon it was distended a lot more than what is even normal for her (her nurses who are used to her tummy size were even scared that her intestines had possibly perforated).  She has had more x-rays on her tummy than I can remember through the past few months, but they did another one and thankfully determined that her colon was healthy, but there was a lot of trapped air that needed to move through.  So, her feeds were stopped yet again, a tube inserted down her throat, and glycerin suppositories were given to help drain the air.  In turn, it also meant that another IV had to be inserted so that she could receive fluids while she was not able to eat.  She typically is not a fussy baby, but she does cry when she is being poked and moved around sometimes.  However, last night, she was nearly inconsolable for quite some time.  She had been awake for hours and was overly tired and had also figured out that she was hungry.  It tore at my heart to see her crying so hard and yet be helpless to give her what I knew would comfort her.  It's a lesson learned in parenting in that sometimes we cannot give our children something good because it is not good for them at that present time.  I know God does this with me, and I do not often recognize it at the time.  Going through this with Noelle has shown us that God has a greater good which He is working out even while humanly it seems like a "bad" situation.  I shed tears with my daughter last night as I watched her struggle, but the mom in me still wanted and did what was best overall for her, and I am so thankful God does that for me over and over again even when I "cry" and do not understand.  Noelle finally fell asleep last night and slept almost straight through the night and then continued to do well today.  Her tummy is much better than yesterday and hopefully they will be able to start her feeds again sometime tomorrow.  We enjoyed holding her and spending time with her today and are praying that she gets past this issue very soon and continues to thrive again.  We so appreciate your continued prayers for our little family!!

~Here are some pictures of Noelle from yesterday before everything happened with her tummy.  Her nurse dressed her up for the day and let her wear her little doll shoes from her Aunt Laura and Uncle Josh.  We're excited to say that she has nearly outgrown them!!~

NICU Day 75 ~ (February 20th)

Wow.  Day 75.  If I had one word to sum it up, it would be "weary."  This past week has been the longest yet, outside of the week Noelle was so sick with her heart issues.  We have sincerely tried our hardest to adapt to our new surroundings and deal with her current situation as best as possible, but it seems that circumstances happen almost each day that make us anxious to get back to Forsyth.  Of course none of this is intentional, and all of the individual people which we have met or worked with here are really nice, but when it comes to your baby, "unintentional" just is not okay.  Everything should be done intentionally and should be closely watched.  The NICU is a field where human error just is not and cannot be tolerated like it might be in other fields.  Today, it was an infiltrated IV, and I cry every time I see her poor little arm, swollen to twice its normal size.

~Poor Little Swollen Arm~

Of course some of these things "just happen" at times, but often (like today), they could have been avoided had things been watched more closely or done differently.  So please pray for us as we talk with our neonatologist tomorrow about transferring back to Forsyth and having her monitored from there.  The same opthamologist would be examining her eyes in either place, and although it would mean a transfer back if for some reason she needed a repeat surgery, this seems less traumatic to us in light of the entire picture.  Please pray for gracious spirits and wisdom as we seek to have our tiny daughter in the best place possible for her care and growth.  Is God still sovereign over all that has happened?  Yes indeed.  However, that does not mean we have to stand idly by and let "whatever" take place.  I especially hate being put into positions to deal with things like this, but I am beginning to learn what the term "mother bear" means, and while we do not like the position, we will do whatever necessary to insure the best possible situation for Noelle.  Thankfully, God already knows what will happen tomorrow and how this will play out, and we can continue to rest in Him.  Thank you so much for your prayers.

NICU Day 30 (January 6th)

We continued to see small improvements with Noelle throughout today.  They are all "slight" and yet so significant to us, and the doctors have told us that it will still be a long process...that no drastic changes will be seen in a short time.  Still, there was improvement, and when we left tonight, she was down to 62% with her oxygen.  She hasn't been that low since Tuesday!!  The echocardiogram revealed slight improvement in her heart function, but again...they did not expect drastic changes.  She still has severe pulmonary hypertension, but her clinical condition has not been this good in days.  She weighed in at 590 grams last night (they weigh her every night at midnight), and we have to keep in mind that this includes her diaper (tiny as it is), heplock, pic line, etc....  It is down quite a bit from a few days ago but this is actually good because she had been retaining quite a bit of fluid through this whole process and is finally getting rid of all of it.  We continue to take it one day at a time, and the medical team will do everything in tiny baby steps with her--nothing gets changed suddenly or aggressively in her situation at this point.  She is also still sedated pretty well although she still is responsive and moving...just not alert and awake.  They need her just to rest so that her heart can recover without her fighting and pulling strength from it.  We thank you from the bottom of our hearts for your prayer and your continued prayer.  We're so thankful for the loving care God demonstrates to us through the body of Christ. 

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 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!!!