Normal!

We took the boys to Chapel Hill yesterday to see their hematologist. (It still blows my mind that they have their own, personal hematologist!) We enjoyed finally meeting him in person. He was really nice and really laid back. We will also hopefully never see him again, at least in a clinical setting. Yesterday both boys had neutrophil counts in the normal range! This means they are done with crazy interventions unless one of them gets sick and injured in the next couple of months. If they do, they will do an additional CBC (blood count) at that time. If the neutrophil count at that time is in the normal range, they will treat them like any other infants. After they get to be about 4 months old they will definitely be treated like other newborns unless there is a reason to suspect a problem.

For those of you interested in the cause of all this madness, in really non-scientific terms, there is something in Jeff's neutrophil that my body doesn't like. At some point his neutrophil passed into my body, most likely at the time of conception. My body decided his neutrophil was bad, bad, bad, and my body made antibodies to destroy his neutrophil circulating in my system. (And my body was smart enough to make antibodies that would only attack Jeff's neutrophil and not my own.) These antibodies passed across each boys' placenta (not an easy task for any substance). The boys continued to get the antibody the whole time they were inside and cookin'. Unlike in me where they antibodies differentiate what to attack, in them, they attack all neutrophil. Once the boys were born, they were no longer receiving the antibodies, but the antibodies still had to work their way out of their bodies.

The hematologist never told us exactly how rare this is, although none of the pediatricians or neonatolgists (NICU docs) in Wilmington had ever encountered newborns with this exact condition before. In fact, as far as anyone knew, the anti-neutrophil antibody test had never been ordered by our hospital before. One nurse in pediatrics, who had worked in hematology at a much larger hospital, put it in perspective. To the best of her knowledge, this happens in 1 in 100,000 births. In any given year, you can count the number of newborns born this way. And we got two of them!

Regardless of the odds for the prior odds, we are just ecstatic that the odds are now in our favor when it comes to having healthy, happy babies.

All is calm, all is bright

Calm is a very relative term in our house these days, but I will take calm in any form in which it comes. Last weekend was not calm.

Last Tuesday I noticed that Leon's belly button was red. Not knowing if it had previously looked like that (all the diaper changes from the three kiddos kinda blend together), Jeff and I decided to just keep an eye on it. By Thursday morning it was scarlet, swollen, and puss-filled, so Leon and I trotted off to the doctor's office.

Although this is a common occurrence in newborns after the umbilical cord falls off, nothing is normal or routine with our neutropenic bebes. So, poor little Leon was sent back to the hospital for 48 hours of IV antibiotics and observation. I did not deal well with this.

On Friday, his belly button looked better. Much better. Even better, his blood tests showed that he had neutrophil! While the level was still critically low by normal standards, for a child who had previously not had any, this was amazing. The nurse practitioner assured us that as long as nothing changed he would be coming home on Saturday. I was in a much better place.

Saturday morning I got to the hospital bright and early so that I could make sure to see the doctor during rounds and I could find out the plan of action. The doctor was in rather early, and the first thing he did was show me that Leon's belly button was healed. I could sense the big "BUT..." hanging in there. Unfortunately, although his blood tests were fine and he had no systemic infections, the puss from his belly button tested positive for the bacteria e. coli and staph. Again, these are not unusual in small quantities in all people, even newborns. However, in our neutropenic baby, these needed to be treated with antibiotics. Two weeks of IV antibiotics in fact. Because of Leon's size and age, the antibiotics could only be administered in the hospital. To make matters worse, there were many patients in the ward with RSV, and respiratory virus with very serious consequences to preemies, so I was told it would not be possible for Michael to visit. And, knowing that if Ree visited, she would be likely to all but lick the floors, we know she had to stay home too. My little family was getting torn apart.

The whole time the boys were in the NICU, I kept hearing how strong I was, how I was dealing with everything so well, how I was so brave. None of that applied this time. I completely fell apart.

I muddled through the day. On Sunday morning I did not get to the hospital until lunch time, so I did not have a chance to speak with a doctor. However, I did learn that for the first time ever, Leon's neutrophil was in the normal range. Yes, normal! He was not considered neutropenic at the moment. This gave me some glimmer of hope.

On Monday, I was in a much better mood. I was up and out the door bright and early. I wanted to make sure I was there to talk with a doctor so I could plead my case to have them the course of treatment since Leon was no longer neutropenic or to see if there was any way we could manage this at home.

When I arrived at the hospital, the nurses were in fantastic moods, and all were happy to see me. One even threatened to take Leon home with her - she liked him that much. Leon and I spent the morning hanging out and dancing since I had finally remembered to bring in CDs. It was a strange little existence, but it was happy.

Around 1:00 p.m. the same fabulous nurse practitioner who told us on Friday that we could probably leave on Saturday was back in our room. She wanted to know if I would like to take Leon home, and if so, she would do everything in her power to make sure it happened. I don't know what she did - and it didn't happen quickly - but she was able to get the doctor to agree to let us manage Leon's antibiotics at home with a home health nurse. Leon was a free man!

Leon and I got home around dinner time on Monday, and since then things have been hectic as one would expect in a house with two newborns, a two-year-old, two dogs, and two sleep deprived parents. (That's a lot of "two"s!) But it is a very, very happy hectic, it is much calmer than juggling a family divided, and aside from desperately wishing that all goes well and Leon is able to stay home as he completes his antibiotics, I couldn't ask for more, especially at Christmas.