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 Day 118 ~ (April 15th)

Yes, you read the title correctly, and we are counting NICU days again as Noelle had emergency surgery last night and was readmitted into the NICU at Baptist for recovery.  She is doing well overall, but the last 30+ hours have been quite the ride, and this post will be a little lengthy in catching up the details.  I have debated many times in my mind as to how much I should share, but ultimately we desire for people to pray specifically for Noelle and hope that these details will fade in people's minds as she grows old enough to understand herself all that has happened these first several months in her life. 

~The sweet baby cupcakes that Travis & Tawn made for our baby shower~

 Yesterday began with the joyous occasion of a baby shower for Noelle at the generosity of sweet friends from our church family, and I enjoyed a wonderful time with many of the women in our church while Tom stayed home with Noelle.

~Four Generations~

We then said "see you later" to my mom who had been able to visit while  out here for an event in Greenville, SC.  My grandparents had also come over for the morning so my grandma could attend the baby shower, so we were able to get some special pictures before everyone left.

~My grandparents & Noelle's great grandparents~

~Our little family~

Soon after that, we headed up to the NICU at Forsyth to deliver leftover cupcakes, to visit, and to also have Noelle's nurses check out her inguinal hernias.  Before we had been discharged on April 2nd, they had taught me how to reduce her hernias and what to watch in regards to them.  Last Thursday we saw a surgeon who was unable to reduce her hernia for the first time.  I had not had any issues prior but we left with the instructions to let her know if it still was not reducing in a few days.  I knew what else to watch from the Forsyth nurses, so when it started turning pink on Friday night and even more red on Saturday, it was time to get it seen.  We received confirmation on Saturday afternoon when her nurses took one look at it and told us to go get it checked out, thus beginning our "bump in the road" of the last 30+ hours.

~Waiting in our triage room in the ER~

We arrived at the children's hospital ER around 6:00p.m. and while we spent some time waiting through the next six hours, the majority of the period was involved with evaluations and many attempts to reduce the hernia.  Finally, after a combined effort on the part of several doctors and the pediatric surgeon, they determined that they had no recourse but to proceed with emergency surgery.  The concern was that something was caught {often intestine}, and when it reaches the point which Noelle's had, it usually means something has been compromised.  She went into surgery at approximately midnight and was out of surgery and into recovery in the NICU within 2 1/2 hours.  The surgery went well overall, but they did discover that one of her ovaries and fallopian tubes had been caught and twisted in the hernia and had died, requiring removal.  While the results saddened us, it honestly was good news in light of the entire picture and all the possibilities that had been present.  Had it involved compromised intestine, the surgery would have been much more difficult and the recovery much longer.  Her body should adapt and operate very well with only the one ovary, and we are very thankful for God's guidance and protection through the process.

~Noelle recovering after surgery~

We were able to see her shortly after she was admitted into the NICU, and it was heartbreaking to see her tiny body after so many hours of trauma.  She was extremely pale and still under the influence of the anesthesia, but she did hold onto our fingers and showed faint signs of her normal self. 

~Holding onto Daddy's finger~

~Holding onto Mommy's finger~

We went home and slept for a few hours before heading back up to the hospital and were encouraged to see more signs of improvement as the afternoon progressed.  They expect her to be extubated sometime tonight or early tomorrow, and we hope to be home by Wednesday at the latest.  Ultimately, we know that God had this timing already planned and had everything in place for her to receive the care He desired on this specific day.  We knew she would eventually need this surgery, we had just planned for it several months down the road and were not expecting this to happen in the manner that it did.  Still, we are very grateful that we can "check this off the list" of things to be accomplished in Noelle's tiny life and pray that she will recover quickly and be back to her normal self.

Tonight, she looked much better than she did nearly 24 hours previously, and we cannot thank you enough for your continued prayers.  Our biggest concern right now is her breathing and the need to come off of the ventilator as soon as possible.  She already has CLD {chronic lung disease}, and each day on the ventilator only adds to the issues with her lungs.  We will continue with daily updates while she is in the NICU and look forward to the day we can again bring her home.  Thank you so much for you continued love and support and your faithful prayers before the throne of grace.  God has been faithful to see us to this day and will not leave us for one moment of this process.  We are ever grateful that He holds our days in His loving hands.

NICU Day 72 ~ (February 17th)

Thank you so very much for all your prayers today as Noelle went through her eye surgery.  We spoke with the opthamologist shortly after it was done, and he said they were able to get an even better look at her eyes after she was sedated, and they were a little worse than they originally appeared.  He said that the surgery was definitely the right choice and that they felt they had caught the issue at just the right time.  We talked through some further logistics with him such as what to expect over the next few years and whether or not the surgery would ever need to be repeated (it is possible it may need to be repeated at some point); but for now, he was very happy with how things had gone and expects her to do well as a result of today's procedure.  It was hard to watch her get wheeled away to the OR today; but she was in great hands, and we were very comfortable with the doctor God provided to care for her through all of this.  She now receives drops in her eyes every hour for these first 24 hours and then the dosage slowly backs down from there.  She is intubated and on the ventilator at this point, but she is doing very well with that and will probably be off of that within the next couple of days.  They told us to expect her to sleep for the next day or two after coming through anesthesia, but only a few hours after coming out of surgery, she popped her eyes open!!  She was pretty "zonked" otherwise and not moving around much, but she was definitely awake and recognizing our voices again.  We actually just checked on her a bit ago, and she had somehow worked the tape off her face around her tube, so they had to reposition that again for her.  She seems ready to extubate herself already!!  We're so thankful to God that she is through the surgery and appearing to do so well.  They will follow up tomorrow and then on Tuesday but do not expect to see much progress within that period of time, so the "telling" eye exam will be one week from Tuesday in which we expect to also get the clearance to go back "home" to Forsyth.  We are already in countdown mode and cannot wait to get her back to her original environment.  The staff at Baptist has been very nice; and after today, we were especially grateful for the care she received, but we are also very ready to get her back into her normal routine in familiar surroundings with the people who love her.  God was so gracious today in giving us a definitive path to walk, and we cannot thank Him enough for that.  Thank you for lifting us up in prayer all day today.  We had true peace through this process and knew that we were far from being alone through this procedure today.  We will share some pictures and hopefully more good news tomorrow!!