Saturday, March 21, 2009

Unwanted Friday Surprise

Where do I start? Yesterday evening we experienced a turn of events that have me overwhelmed with anxiety and fear.

Yesterday things seemed to be trucking along nicely as they had been for several days now. Jason was missing his babies dearly so decided to head over to the hospital on his way home. We were talking, trying to make a plan for the evening while he was on his way there. I decided that I would meet up with him after a while so we could visit til 6 then grab something to eat and go back when the NICU shift change was over at 7:30. So, I finished doing what I was doing at home and casually packed and collected the diaper bag and made my way up to the hospital. While on my way, Jason text me informing me that Blake and Jenna were receiving their eye exam.

When I made it into the bay, I was asked if I had been called to come in. I replied with a questionable look on my face, "No". In the same breath I asked, "Why, is there something wrong?". I was then told, "Well, one of your babies is going to have eye surgery". I don't recall her exact words but when I replayed that statement in my head I thought I heard "boy" in there. I guess I was already preparing myself for an unfavorable update as soon as I was asked if I had been called in. I replied with, "My boy?" and "now?!" Just then, Jason walked through the doors into the lobby area of the NICU. He had the look of shock, fear, disbelief and dread all rolled into one very discernible expression. Much like what I remember seeing on his face the night we were faced with the shocking news that we would be delivering our babies mere hours into out 24th week. Immediately tears fell. Facing unfavorable news is done in an unusual way once you've become long term NICU parents. You are always on alert for the unexpected so when you do receive shocking news, in a way, you are prepared and are half way expecting the "usual ride". Yet the sting of the actual news itself is just as painful as the last news you received, no matter how prepared you are. It is very hard to explain this experience. One that can not be explained really, just experienced.

Jason proceeded to tell me that during Blake's exam, the ophthalmologist found stage three plus Retinopathy of Prematurity (ROP) and that it was severe enough to warrant immediate surgery. The surgeon and anesthesiologist had been called and were on their way. Keep in mind, I had just received the text from Jason 20 minutes prior, stating that they were doing the eye exam! While Jason and I sat in the waiting room and he gave me what information he understood, the anesthesiologist arrived. At this point we were still trying to piece together what little understanding we had while the doctors and nurses were back in the bay prepping our precious little boy for the second major surgery he has undergone in his 2 months of life. This is NOT normal!!!! sigh. Just saying that brings tears to my eyes. My gorgeous, strong little boy, born 4 months too early already has undergone 2 major surgeries. Truly truly painful for Jason and I to accept. We were able to go back for a brief moment to see Blake as he was prepped for surgery. He was quickly drifting into a deep paralyzing sleep. As he fell asleep, he chewed on his breathing tube. He appeared very peaceful. Jason and I watched him and gave him a kiss before returning to the waiting room.

The anesthesiologist came over a few minutes later and informed us of what anaesthesia would be administered and what to expect. We were told that once the surgeon arrived, he would call us back for further explanation. We sat there, once again, attempting to process a shocking report. A bit later we were called back. The situation is as follows. Blake has/had stage three plus retinopathy of prematurity. ROP is when the blood vessels in the eye are not properly attached in the eye. Being born prematurely, the blood vessels in the eye can sometimes intertwine and grow in an unorganized manner causing a collection of blood vessels rather than straight pathways. If gone undetected or untreated, the collection of blood vessels can cause the retina to detach resulting in loss of vision. Blake's condition is referred to as "RUSH".

Blake has RUSH in both eyes. We were told that the surgery had a 50/50 success rate. He needed surgery as soon as possible. Hours could potentially make the difference between losing his sight and hopefully saving his sight. We were and still remain terrified.

The surgeon arrived and we were called back to speak with him. He explained the procedure. It would be a laser surgery that would destroy the twisted blood vessels, in attempts to take away the risk of detachment of the retina. The best case scenario is that if successful, Blake would be extremely near sighted and his peripheral vision would be effected but he would still keep his vision. We would gladly accept this outcome and pray that we would be left with such, considering what could be.

We were then allowed to see Blake again before surgery. Back again on the ventilator that he worked so hard at getting off of just weeks ago. We were assured that once he came to after surgery and was strong enough, he would be extabated and would return to CPAP same as he had been on before surgery. We kissed him and very reluctantly left the bay. We sat in the waiting room from about 6 to 7:30. At 7:30, we were told that the surgery went well. The surgeon was pretty confident that he got it all but that Blake's eyes were a bit over dilated so he would need to do a recheck on Wednesday. More agonizing waiting and not knowing. A cruel combination.

Jenna's eye exam revealed that she has stage 1 ROP in her left eye. She will be closely monitored. With the nature of how quickly this can progress, we worry for her as well.

We went back and sat with Blake for some time. After quite a while, we felt a little jitter of movement from his hand when we placed our finger in his hands. Still mainly out of it, the respirator breathed for him. While we were there, he began to take a couple breaths on his own. When it was time for his eye drops, he lifted his arms and put them to his face. It was good to see the movement but heart wrenching knowing that he was moving his arms to his face due to fighting the placement of eye drops. He began getting his color back when we decided we needed a little break and some food. Jason and I drove home to drop off one of the cars and went for dinner. While sitting in the restaurant I felt a real detachment from the reality that everyone else around us was experiencing. We sat there and commented on the extraordinary lives we are currently living. The fact that what our "norm" right now is, is so far from the average person's "norm". We often times are so into reaching the next NICU milestone that we forget that what our average day events play out to be are quite different than everyone else we know. We ordered food but by the time it got to us, we had lost our appetites and just wanted to be back at the hospital. We reluctantly ate. It was a bit surreal sitting there watching the families next to us go about their Friday night causual dining. I know this sounds drastic but I almost felt I was an outsider in other's reality sitting there. I just can't successfully explain this strange coping process. Jason and I finished dinner with moments of no conversation mixed with a few comments that elicited the need to kick back tears. As I sat there, I thought, maybe we should have eaten PB&Js at home.

After dinner we went back to the hospital. We stayed until about midnight. While we were there, Blake would occasionally move his arm or leg or fingers but for the most part remained still. We visited with our new friends and fellow "24 weeker" parents. It is amazing to have a couple to talk to who truly and most closely knows what we are experiencing. It is nice to talk with other NICU parents in deed, but having a couple live much of what we have and continue to live, in real time is a blessing we have found in this very trying time. When we left, Blake was still resting peacefully. We were told that he may not really come to until the morning. When we got home, we stayed up talking till until around 2, when exhaustion finally took over. We called again to check on the babies and attempted to fall asleep. It took some time as I was imagining what Blake's life (or Jenna's for that matter) would be like if he or she were to lose their sight. No parent wants their child to have to face such challenges. I forced myself to think positively and I fell asleep praying and thanking God that they were still with us.

I do not feel I am handling this situation very well. When I think about the possibility of my baby losing his sight, it truly tears me apart. I feel knots in my stomach and a real heaviness in my heart. We have been faced with many situations but this is one that is really causing me much fear. My babies have gotten much stronger now and the light at the end of the tunnel was becoming brighter. This is one of those unforeseen set backs that continue to make this "ride" true to it's nature. We have somehow always been able to find focus on identifying the next plan of action and milestone and putting our energies into positive thinking in order to help our little ones reach them. I will do the same this time. It just comes with much pain. I pray that I can quickly find the strength to overcome some of the anxiety and fear in order to be strong for Blake and Jenna. Very early in our NICU stay, we decided that this would be our plan; it's what HAS to be done, and no matter what it is the best thing we can do. I pray for strength.

I called this morning to check on Blake and Jenna. Blake had started to wake up and move a bit. He was beginning to breath on his own and is on about 21% o2 which is good. He tolerated his assessment well and although his eyes are puffy, he appears to be comfortable. Carol said she suspected he would be extabated later today. Jenna had a good night and is also on 21%.

Well, as I often times do, I've journaled rather than blogged. After re reading my post, it is clear to me that I am way stressed and am quite disorganized with so many different thoughts running around in my mind. But now that I am a bit more rested, I plan to refocus on the next milestone, continue to pray and just be there for my precious miracle babies.

I have always felt a little awkward asking for something on our blog but today I have to make an acception. Please include Blake and Jenna in your prayers. We truly believe that the positive thoughts and prayers that we have received thus far have made the difference in Blake and Jenna's recovery from their premature birth. We pray for Blake and Jenna to come out on the positive side of the odds when dealing with their recent vision challenges.


Anonymous said...

FYI- There is a good description of the stages of retinopathy on this website- it is the National Eye Institute.

Anonymous said...

Those precious little miracles are always in our prayers also with the parents. For you need the strength and prays just as much as those precious little do.
We will always continue to pray for all of you.
Love Mom & Dad

HLH said...

Jason & Kim,

As you have done so many days, hang in there, be strong, and take it one day at a time. I can't imagine the uncertainty and pain, then hope...crazy emotional roller coaster. Your little angels are fighters, I pray for good news in the upcoming weeks.

Take care!


Jason and Kim said...

Thanks for all the well wishes and encouragement. This has been a pretty difficult weekend, but we were able to make it through and look forward to better times.
Thanks again for all your support. It's helped tremendously.