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.

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.