Monday, November 24, 2008

The Good, the Bad and the Beautiful



Pics 1 & 2 above are Logan (left) and Landon (right)
before they came off the vent & CPAP;
Pic #3 to the right is Logan & Landon hanging out together (Logan in beige & Landon in stripes)







Pic #4 above is Landon on nasal cannula with only the tubes in his nose;
Pic #5 to the left is Landon after coming off CPAP and before going on nasal cannula;
Pic #6 below is Logan on CPAP (sucking on his pacifier);
Pic #7 below is our first official family photo











It was a great week in the NICU for the Michalanko boys - almost perfect. ALMOST, but not quite...

Bad news first of course. After a somewhat uneventful and tranquil week in the NICU with no major setbacks, we were once again given a fierce shove back into reality on Sunday with the realization that Landon was sick and might have an infection. He began exhibiting symptoms late Saturday afternoon and into the night but seemed better Sunday morning. But, much like many things NICU-related, we didn't get comfortable for too long before he took a turn for the worse in the afternoon. He became extremely pale & lethargic and began repeatedly desatting and having brady episodes in clusters (meaning his heart rate was dropping to dangerously low levels over and over again, one after another). He just laid there, barely moving, looking so weak and sickly and the only thing I could do was stand there and watch in tears. To say it was one of the worst feelings I've ever experienced doesn't even begin to convey how it feels to see your child sick and struggling and know there is nothing you can do to allay his pain. All I wanted to do was hold him and tell him mommy was there so he didn't look so scared and sad, but in his state, it probably would have done more harm than good for me to even touch him. And therein lies our existence as parents in the NICU. In any event, they took blood cultures and started him on broad spectrum antiobiotics to begin treating whatever he may have and then performed a lumbar puncture to test for bacterial meningitis. Unfortunately, the tests came back abnormal (his white blood cell count was high) and the doctor is speculating that what is ailing our dear Landon is indeed meningitis. My poor babies just can't seem to catch a break. The course of action at this point will be to simply monitor him and continue to treat him with the antibiotics for 10-14 days. This illness can be fatal in preemies or cause brain damage resulting in long term disabilities such as hearing loss, blindness, developmental delays, etc. but the doctor advised me this was highly unlikely given that his WBC count was only 27, they caught it early and began treating it immediately, and his recovery time was so quick (babies who die or develop brain damage from this usually have a WBC count in the thousands and don't respond to the antibiotics). He is looking and behaving much better today, isn't having the cluster brady episodes and is doing wonderfully in terms of his respiratory efforts. We are praying he is well on his way to recovery.

Now that I've gotten the sobering news out of the way, it's time to brag about my boys! A week or so ago, Logan was put on a new upgraded ventilator that the hospital received from CHOP (our boys are at Pennsylvania Hospital on 8th & Spruce, which is an affiliate of CHOP) and he began improving almost immediately. His blood gases were consistently good each morning (C02 levels in the 50's and low 60's), his oxygen support gradually decreased and the doctors slowly began weaning his vent settings. Then on Sunday his nurse sent me a picture message of him and he was no longer on the ventilator and instead on the CPAP like his little brother!! I prayed countless hours for this day to come and spent even more hours worrying that it may never come and when it finally arrived, we were so caught up with Landon's illness that our sweet Logan's big day was overlooked and I feel awful about it. He really is surprising everyone with how well he's doing off the vent though - his blood gases have been great and he's only requiring between 27% and 32% oxygen. I only wish he could understand just how miraculous and special he really is and how proud I am to be his mommy.

Not be outdone, even though he's fighting the meningitis, his little brother Landon shocked Mommy and Daddy today by coming off the CPAP and onto the high flow nasal cannula!! It just blew me away to see him laying in his isolette with nothing on his handsome little face except the plastic tubes in his nose...I just couldn't stop staring at him!! He's doing remarkably well - he's on 21% oxygen, desatting very rarely (and when he does it's only into the low 80's) and he's only having bradys once every few hours. He has done a complete about-face since Sunday, it's hard to believe that he's still so sick.

They are both still tolerating their feeds quite well and gaining weight as they should be, although a few of Landon's feeds have been held in the last day due to some aspirates he was giving back. When babies are sick they shunt all their blood and energy to their crucially vital organs and the gut is not one of them so often times they will have problems tolerating feeds and the doctors do not want to push him by giving him too much volume. Therefore, Logan is now up to 24 ml's every 3 hours and Landon is at 21 ml's. Shockingly enough, our "little engine that could" Logan now weighs MORE than Landon, with Logan coming in at 2 lbs., 14 ozs. and Landon now lagging behind at 2 lbs., 11 ozs!! My my, how the tables have turned. We knew Logan wasn't going to let his little brother beat him at anything for too long!

Finally, Saturday was a particularly special day for us as not only did Landon and Logan get to spend some quality time together for the first time since their birth but Mommy & Daddy each got to hold both of them at the same time!! It was such a perfect day, the most content I've been in a long time. It was so incredibly sweet to see them laying next to one another in the same isolette, although I wondered (and worried of course) whether they were really aware or "remembered" who the other one was or if they were complete strangers to each other. Landon was out like a light and decided to drape himself all over his brother as he slept, while Logan just laid on his back with his eyes wide open looking around wondering why this other little guy had invaded his bed, it was so precious!! I was allowed to hold them together for a few hours and they both did so well with barely any desats and no bradys; it was so overwhelmingly peaceful and healing, it truly was incredible. I finally felt like a mother.

Last week it snowed for the first time this year (ok, it was just a light dusting) and I took a few pictures from our bedroom window. I'm not sure why, I guess because it was technically the boys' first snow, even though they can't see or enjoy it yet, and I was suddenly overcome with this feeling that everything was going to be ok and work out as God intended. I wanted to save that moment. If any good has come from this nightmare, it's that every little thing just seems magnified to me now, everything exists on a much grander scale and I appreciate it all so much more - God, my family, my friends. I could never get through this, nor could our boys, if not for all of them in my life. It's just a shame I needed something this heartwrenching to help put things in perspective for me.

BELOW IS A VIDEO OF THE BOYS MEETING ONE ANOTHER AGAIN FOR THE FIRST TIME SINCE THEIR BIRTH!!

video

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