Tuesday, August 4, 2009

Vincentio's Story / Part Deux...

Little man was in the special care nursery for the first three days of his life and I was safely tucked in my bed on the OB floor attached to my sweet pump - o - pain reliever. By the second day I did realize that as good as morphine is, it makes me itch, and with a belly full of staples incessant scratching really isn't a desireable afteraffect. So.. bring on the benadryl.

To say the least I was doped. It's due to this fact that my first few days as a Down Syndrome Mommy were spent babbling aimlessly as my friends sat vigil at my bedside. I'm told I was pretty funny though.

On the second day I was wheeled down to the special care nursery to see my bundle of love up close and personal for the very first time. He was so beautiful from what I was able to see of him, all swaddled from head to toe.

He was tiny but at 4 pounds everyone was impressed at his size for being a preemie. At this point in time he was relatively tube free other than the NG for feeding. I was told that he had not yet developed a sucking reflex so I was encouraged to pump milk for him that he could be tube fed.

The staff in the nursery was wonderful, they were understanding and kind. They even made me cry a time or two. I couldn't have asked for better people to be surrounded by. I was lucky and I knew it.

On day four I was finally sprung and released to go home.. without my baby. Even though he was basically stable at that time, leaving without him was harder than I thought it would be.

That night at home I didn't sleep. How was I supposed to sleep without him? For over seven months we had slept together and it wasn't right that we were apart.

The next morning we awoke to a very calm phone call from the hospital letting us know that V had been moved during the night. He was now in the neonatal intensive care unit. Sometime during the night time he had become very pale and his breathing had become labored. He was quickly moved up to the NICU, blood cultures were taken, and he was started on oxygen. We were told he had stabilized and was sleeping peacefully.

... holy crap...

We quickly made our way into the NICU to check on our boy and found him sleeping soundly with his newly aquired O2 and more than a couple needle stick marks. Poor baby.

The neonatologist was in shortly after to tell us that he was not in congestive heart failure as they had feared, the blood cultures came back showing no infection but it did show some unusual types of cells in his blood, not the number of cells but the type. He assured us that they would recheck it in a couple of days and not to worry.

My next several days were spent trying to master the industrial strength breast pump that the hospital had graciously offered us to borrow. This was a feat. My other children were champion nursers. This plastic sucker was a tough one. It wasn't overly difficult to operate but just somehow really uninspiring. Achieving let-down was no easy task. The nursing staff was sweet, happy even for a few drops. "Any little bit works wonders" I was told.

Still, I felt massively inadequate, but I kept at it.

A few days later during our daily visit I excused myself to visit the "rose room", a quiet room solely reserved for pumping mothers. There was only one other Mom in the room who happened to be a hospital employee. She was pumping for her eight month old at home and it was obvious she has NO problem with her milk production. I sat meekly pumping away trying to distract myself but the sight of her gushing into that bottle was too much to resist. Apparently it was just what I needed, after a few moments I felt the let-down of my milk for the first time ever and emerged victorious from that room sporting TWO full volu - feed bottles. Even my husband was impressed.

Later that week V had another "episode" requiring O2 and stat blood cultures, and again his cell differential was a consern. Within two days they were testing normal again like the time before. I would later realize this was just the start of his normal abnormal.

These episodes continued throughout his stay in the NICU but his differential always reverted to normal within a few days without intervention. Imagine that, my kiddo was doing something medically strange and out of the ordinary.

He remained in the NICU for a total of four weeks, until he was able to have his NG removed and was able to take all his feedings by mouth. He already met the 4 lb weight requirement so feeding was our only real obstacle. He began to take full feeds by mouth on a Wednesday and on that Friday another ECHO was done to check his heart function and it was surprisingly good. We were told that if this trend continued we could have him home by the following week. Yipee!

We were quickly scheduled for infant CPR classes that would be a requirement for his discharge and had all of his prescriptions filled and ready. We would have to bring them to the hospital and show the nurses that they were filled accurately and we were able to dose them correctly before we were allowed to leave with him.

V was given a six hour car seat test where the baby is placed in the car seat and hooked to a pulse ox for several hours to be sure that they can maintain proper O2 levels while being transported. He passed! Woohoo!

Discharge day finally arrived the next Monday and it only took us ALL afternoon to get out of there but they were thorough. Can't argue about that.

The neonatologist mentioned that he hadn't eaten as well the night before but it was probably a fluke, they offered to keep him another day but I was ready and we were outta there.

When we arrived home he was just as they said he would be.. very sleepy. We were given an eating goal of 15ml's every three hours. We had to stick to it and if he wasn't cooperative we had to return to the hospital. The next two days were spent creating strategies to wake him up so that he would eat. What we were so sure we could handle (after all it's only 1/2 an ounce every few hours) was quickly kicking our butts.

I finally found that if I undressed him and rubbed a cool cloth over him he would get mad enough to wake up and eat a little. It worked but he always pooped out before the 15ml goal was reached.

On day three he was sleeping when we woke up and since his feeding wasn't due yet we decided to head for the grocery store for some breakfast goodies. It was just down the street and would only take a few minutes, so off we went with our little bundle covered up and secured like Fort Knox.

No germ would penetrate my fortress. We got more than a few strange looks but I've never been one to care much what other people think. I was ready to protect my munchkin at all costs.. and so we shopped.

About 20 minutes later we got back home and as I was unloading our groceries Daddy was trying and failing to wake V for his next feeding.

I told him to try the naughty washcloth trick which he did. It didn't work.

What? It always works, not always very well, but it always gets him mad.

Well not this time. I walked over ready to scold Daddy for not doing it as well as I do when I noticed something was different. V's eyes were still closed but they were rimmed in an ashy shade of gray. So were his lips.

Daddy was convinced it was bad lighting so he carried V over to the window and took off his onesie in an attempt to arouse him. When he undressed V I just about lost it. His entire back was mottled and his skin was a deep shade of purple. As Daddy carried him and rubbed his back it was obvious that his breathing was slowing, and came in awkward sharp motions. I called 911.

It was Wednesday, only two days after they told us his heart was functioning well. Only two days since we began our journey as a complete family all together, and I was watching Daddy do CPR on my love as he laid on the coffee table in our livingroom.

Stay tuned.. more to come...


  1. This reads like a novel. Wow, how scary is that? I can't even imagine. You must be so strong from going through all of that.

  2. its nice to read stories similar to our own. I remember I always healed so fast with my other babies. But leaving the hospital after only one day because they had moved Jax and I wanted to be with him. I was so sore I could barely walk, and it took me forever to recover. And I know it was from treking up to the hospital every day.
    I also remember telling my ped that I was upset that I couldn't feed my baby that would probably be my last. She told me there was no reason he couldn't breastfeed. So we just worked hard with a lactation specialist and he did really well, that is, until he was intubated for 4 months. Ha