The good news:
Scotty did GREAT today!!!! He looked like a different baby, literally. His color was great - pinkish - and his little lips were completely different. They were pink and plump, nothing like the red, thin lips that he had earlier this week. The difference is so obvious, I cannot believe I didn't catch this sooner. I can't believe the plethora of professionals we saw this week - peds, LCs, my ob, the urologist - didn't catch this sooner. It seems so obvious now that he was clearly sick, but I didn't have a comparison...I just didn't know. Now I do.
We were able to give Scotty three different feedings today and he is eating like a little piggy! It is so wonderful to watch. The nurse wanted him on the breast for his noon feeding, and I was okay with that only b/c I knew he was going to get a bottle of more breast milk after we were done. He drank almost three ounces from the bottle, making me wonder exactly how much he got from the breast...three oz is just about right for a baby of his age and weight. Which means that he probably got very little from the breast, despite the nurse saying he has a great latch and I can feel him eating. So once again, this whole thing is a mystery. It appears as though he is eating from the breast, but just not much.
He was sleepy for the 3pm feed, but woke up early for his 6pm feed and was super crabby, all of which are great signs. The nurse today was wondeful and quick to assure us that he is doing exactly what babies do - sometimes they eat less, but then they NEED to make up for it with the next feed. Oh, I so wish I had known this earlier. It makes so much sense. Just seeing him so alert during the noon feeding really hit home just how many danger signs we had missed. The nurse called a lot of his behavior completely normal, yet it was a surprise for us - especially the alertness. Everyone up to this point had commented on what a good baby we had, what a peaceful baby, what a sleepy baby he was. And I thought, he is a good baby. It never crossed my mind that he is a SICK baby. So, I'm trying to tell myself that it's not about what we missed, it's about what we know now. That is what is important.
Also, all of his lab work is coming back happily negative. Negative, negative, negative. I love it. Spleen, liver, and kidney functions are normal, he doens't have any kind of infection, and the MRSA/RSV stuff is all negative (preliminarily), so the gowns are gone and Scotty can see our happy, smiling faces again.
And perhaps the best of news --- bilirubin levels are down to 14!!!!! HOORAY! There will be another check at 9pm tonight (he is now down to blood draws every 12 hours) and if it has dropped again, they will turn off all of the lights and monitor him for 12 hours to make sure levels don't go back up. So, all of this is wonderful, significant progress and Brian and I couldn't be happier.
Now, for the bad news:
This is the part that just kills me. I cannot tell you how many people have commented to us that jaundice is such a common problem; it's "nothing to worry about." I couldn't agree more. In fact, I had received an email from a friend last week who is a PA at a pediatric clinic who wrote, and I quote, "Stay on top of that jaundice!" She was absolutely right - and I thought we were. Everything I had read/been told, breast is best. Breast milk will cure jaundice. Breast milk will benefit him more than formula. Breats is best. Breast is best. I attended a breast feeding class when I was 30+ weeks pregnant and there was a pediatrician in a film that they showed that said, "Many people ask me about the dangers of breast milk. I tell them, there are no dangers. There are only dangers with formula." That statement has stayed in my head, which is why I felt as though we were doing everything possible for Scotty over the last 10 days. Breast is best. Breast is best.
Well, guess what? Breast ISN'T best. And no one told us this. I was doing fine today until we received a call from the ped that saw Scotty last Friday (he was seen by a new ped - the one I liked and interviewed - on Wednesday). She called to say she was checking in on us. I told her I appreciated it, and gave her a status update. And then, without warning, she tells us this:
"I've never seen such a high number in my 30 years of practice. 29 is just so high...I've seen kids with levels at 22 or 23 that were high...one even was as high as 25. And they all turned out fine. But never 29. Never 29."
I don't know what she said next, since I promptly dropped the phone, ran downstairs, and got violently ill.
I cannot believe I am even typing this, but as we were told on Wednesday night, jaundice is totally treatable...as long as it was caught in time. 35 is NOT the number of no return; a lot of it depends on the age of the baby as well. The older the baby, the higher the number, the greater likliehood of neurological damage. As in, parts of the brain are damaged and will not recover.
Scotty was 8 days old when he was admitted. Most babies may get as high as 29, but it's within the first 1-5 days of life. Not in the second week of life. 8 days old is considered ancient in terms of jaundice status, and 29 is a high number. When I pressed our nurse for more info, she confirmed that 29 is the highest number she has ever seen as well. She was quick to point out that she works in the NICU, not in pediatrics, and some of those nurses might have a different story. But so far, our child had the highest level for two professionals.
I think a little part of me died when I heard that info. I am trying so hard to not think about it - I am so angry, so sad, and so devastated that the first 8 days of Scotty's life might dicate the rest of it. I just can't believe it. I can't believe that a completely preventable, treatable, and common illness had gotten to this point. And I am BEYOND angry that this wasn't caught sooner.
Where the hell was the ped on Friday when we needed her? I showed her the diaper with the red and orange crystals in it. She knew that he was dehydrated (or dehydrating). She knew that dehydration causes babies to have low energy, which makes nursing even harder. She knew at that time that Scotty had dropped to lower than 15% of his birth weight. She knew that we were having trouble breast feeding. She KNEW all of this - every single compounding variable - and at no point did she ever suggest supplementing or formula. All she did is chirp like a bird and tell us to keep him at the breast. It's like the Titanic - he had the iceberg warning in his hand - and yet, we still hit the iceberg. How the HELL did this happen?
We received some literature today that said, and I quote:
"Breast milk may sometimes interfere with the liver's ablilty to produce bilirubin, so breastfeeding may prolong jaundice in some newborns, causing it to persist into the second week of life. When this happens, some peds may recommend that you consider stopping breast feeding briefly (no more that 48 hours) to help decrease the bilirubin levels in your baby's blood."
Why did she not advise us of this? Why did she not schedule us for a Monday appointment (Day 6), instead of a Wednesday appointment (Day 8)? Also in the literature, it states that children are more likely to be at risk for jaundice if they are 1.) boys (check), 2.) lose a lot of weight at birth (check), 3.) mothers are diabetic (nope) and 4.) are born via induction (check). I had THREE of the FOUR risk factors. Where the hell were the professionals to tell us this? Where was the nursing staff in post-partum to check in on us? Where was the ped on Friday to say, "Hmm, he looks orange. Let's get a blood test and in the mean time, use formula for the next 2 days." I was the one who insisted on an LC that Friday - I was the one who set up the appointment on Monday with the LC. Why did the ped not want us back on Monday? That was Day 6. Again, this was preventable...but it was not prevented. We hit the iceberg.
All I know is that our nurse today, again, reassured us that Scotty is doing exactly what he is supposed to. He is showing no signs of neurological damage, and didn't show any when he was admitted. No extreme arching of the back, no high pitched screaming, or complete lack of movement...we had the lethargy, but none of those three, thank God. He is also eating like a champ, producing all kinds of dirty diapers, and is alert when he's supposed to. He took to the breast just as well as he took to the bottle, and he is alert and strong and great during tummy time. She said the biggest key are the feedings - he would have disorganized feedings if there had been damage. So far, so good. But yet, we won't know for awhie.
I am trying so hard to not have a complete breakdown at this point. I am shaking with fear as I type this. I can hardly believe this is a possibility. My mom, the nurse, Brian - everyone is saying just to focus on the present. We can get an MRI to look at neurological development (and we will, as long as it doesn't hurt Scotty) to get peace of mind, but we won't know for sure until he starts to hit his developmental milestones. As Brian and I talked on the way home, we are prepared to hire early intervention services, language specialists, physical therapists - whatever it takes - to make sure he is on track despite these early set backs.
I also find the behavior of both peds highly suspicious. They have been calling us and the NICU constantly - at least twice a day. They keep claiming that they are very concerned about us. Why are they so concerned now? Scotty has the best care and round-the-clock medical supervision. Why NOW are they so active? Shouldn't they have done that, say, on FRIDAY? I can't help but feel they they know that they screwed up - screwed up big time - and are trying to prevent some kind of lawsuit. I don't know if we have a case or even a claim, but you know what? Let 'em sweat. Let 'em suffer. Let them suffer Iike we have suffered over the past 48 hours. Let them sit at dinner, with food in front of them, completely unable to eat b/c you feel so guilty you just want to punish yourself through starvation. Let them come home to an empty crib that looks so large and empty that it makes your heart break. Let them wake up in the middle of night, expecting to hear a baby cry, only to remember it's time to call the NICU to get the nightly update. Let them suffer and sweat and die a little on the inside.
Just please keep praying that the worst case scenario does not play out here. Please, please, please. After nurturing this little guy for 9 nine months, I am in shock at how many of us completely fucked this up in only 8 days.
We go back tomorrow and I'll continue to update the blog nightly. I don't know who is even reading at this point - all I know, it's very cathartic to get it out. And it's also convenient for the phone tree of concerns. We hope our little guy will be home either tomorrow (though that scares me) or Sunday. My mom is flying out on Monday and I cannot wait until she is here. I am desperate for some kind of support/reassurance/extra pair of hands. Brian and I are sleeping okay at night - mainly due to sheer exhaustion - but what is interesting is that everytime one of us wakes us, we are literally clinging to each other. Even in our unconscious state, we are terrified.