The 12th Day of Christmas

The past few months have been a strange time for me, with many dates making me think about what we were doing on the same date the prior year.  I was a wreck all day on Halloween, just waiting for someone to go to the hospital, since that was the day I was admitted with preterm labor.  Thankfully, despite my pessimism, no one went to the hospital and party-planner Ree made sure it was a great day.

The next big even was Leon and Michael's first birthday, and it was just a joyous, amazing day.  I tried not to think much about the surreal day of their birth, although it is pretty hard to forget just how dang cold I was sitting in a parking lot in 27 degrees with a windchill, naked from the waist down.  Modesty was not a factor (especially since my belly was still almost touching my knees).  I just wanted to be warm!  Everyone was so worried about the silly, little baby who was wrapped in about 42 blankets.  What about the mommy????  They could've at least given me one blanket, thrown a sweater my way, something!

December 11th was a bittersweet day.  It marked the anniversary of the boys' release for the NICU, but in hindsight I knew it also meant Leon went back to the hospital the following week.

Winter solstice occurred on December 21st in both 2008 and 2009.  There is a tradition of burning a candle all night to mark the solstice.  I'm not sure the exact reasons for the tradition, but they are along the lines of brightening the darkest day (and longest night) of the year and ushering in the light.  I was in traumatized, post partum depression (PPD) hell as I lit my candle in 2008.  I placed the candle on the sink in the master bathroom, since the last thing I had time to worry about was burning down the house, and in doing so, I had to walk by the boys' crib.  I can't describe the emotions I felt walking by the crib and just seeing one baby in it, knowing the other was again locked away in the hospital for an indefinite period.  It was horrible.  But as I stood in the bathroom, staring at the candle, and most likely crying since that is how I dealt with PPD, it occurred to me that it was the darkest day of the year.  That meant the next day wouldn't, and couldn't, be as dark.  Things would get brighter.  It was a crazy metaphor, but it really helped me.

And the next day things did get better.  I had an amazing nurse practioner go to bat for me, and while it took all day, she managed to get Leon released into the care of a home health nurse.  On December 22nd, the boys' one-month birthday, our family was finally home and complete again.

Our journey wasn't over, though.  There was one pesky detail to wrap up.  They had been released from the NICU on the condition that we take them to see a pediatric hematologist (since they appeared to have a blood disorder), which was no small feat since the closest one was located in Chapel Hill, which is 160 miles away. 

Our big appointment was on January 6th.  Jeff's parents were in town to meet the babies, and to help us with this insanity.  They watched Ree for the day while we took off on our crazy adventure.  That morning the temperature was in the upper 50s in Wilmington, and the high was supposed to be in the low 70s, so I dressed the boys in short sleeve onesies and little stretch pants (they were wider than they were long!) and threw light blankets over them for the nearly 3 hour car ride.  (Ya always have to assume you will get stuck in Raleigh traffic!)  Knowing we would be gone all day, I took two changes of clothes for each, in case of disaster.  When we got to Chapel Hill, it was 43 and raining.  Oops.  Should've checked their forecast too!  And although we parked in the garage closest to the building, we were still a LONG way from shelter.  It turns out UNC Hospitals have a huge campus.

So as we walked with the boys, wearing nothing but jeans and short sleeves ourselves, we felt like horrible parents.  We also felt pretty cold.  (I'm sensing a theme!)  I tried to change the boys into warmer clothes and discovered that milk had spilled all over the four extra sets of clothes.  Then we had to spend 45 minutes shuffling from one reception area to the next trying to get to the correct waiting area.  We were done, and we hadn't even really started.  But when we finally got to the correct waiting area, everything changed.

Our hematologist was part of the pediatric oncology department.  That is practice that shouldn't exit.  There just should not be a reason for it.  The building was undergoing rennovations, and we all sat together in a hallway outside the treatment room.  We were literally surrounded by kids who were pale and balding from chemotherapy.  As we sat there, we realized how insanely lucky we were to have two happy babies.

Everyone there was thrilled to see the boys.  They thankfully don't see many infants, much less premature twins.  Our time in the hallway turned into a bizarre game of pass the baby as patients and nurses looked at them and smiled.  In a strange way, this put me in an amazingly good mood.

Although there are apparently many different versions, I grew up believing that January 6th is the Epiphany, or the 12th day of Christmas.  It marks the day the three wise men arrived with gifts for baby Jesus, and in the eastern tradition, it is the day gifts are exchanged.  On January 6th, we got an amazing gift.  Both boys had blood work done, and both boys had neutrophil counts in the normal range.  The antibody had passed through their systems, and although it was impossible to know for sure, their hematologist felt confident that they would have no lingering problems.

People keep strange souveneirs from their children's lives.  Some keep locks of hair and baby teeth.  The nurses in the NICU packed all of the boys' leads, foot monitors, and other seeming devices of torture in case we wanted them.  (I really didn't, and I quickly threw them away at home.)  While cleaning out over Christmas break, I came across my strange souveneirs.  I kept both Leon and Michael's blood test results from that day.  To me, they represent the boys' being granted freedom from future medical intervention.

So to me, January 6th, the 12th day of Christmas, will always represent the best gift of all.  It was the day we were allowed to finally just be a family.

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.

Week Two

I started to write yesterday when I was deep in a pity party for myself. I had two kids stuck in intensive care indefinitely, a sick two-year-old, and I didn't know if I would be returning to work next week. But that wasn't the worst of it. The worst part was I was a nursing mommy and couldn't even drown my sorrows in a six (or twelve) pack of beer. Nooo!!! Life was just not fair.

But I didn't blog then, and I am glad, because things are looking up today. And that's kinda the story of the last week. It has been a constant roller coaster. We've had some great moments - sneaking R in and letting her spend time holding and feeding M, finally getting the boys together, and watching M discover how to nurse by himself. And we've had some not so great moments - having to wear surgical masks to touch our babies, doctors trying to ship my boys off to Chapel Hill which is two hours away, doctors trying to ship my boys off again, discussions of bone marrow testing, bad test results, more bad test results, and beginning really scary genetic treatment.

But that is all in the past; here's where we are as of 10:30 this morning.

The boys continue to have a lack of neutrophil, a type of white blood cell needed to fight infection, in their bloodstream. Their doctor now knows the low neutrophil count is due to the fact that the boys have an anti-neutrophil antibody (try saying that one five times fast!) in their bodies, and the neutrophil is binding to this antibody rather than to germs. While this sounds bad, this is actually really good news, especially compared to some of the alternatives that have been discussed. While they still don't know why this antibody is present, given that both of the boys have it, it is most likely that I passed it to them while I was pregnant. If that's the case, the level of the antibody will decrease over the next few months, and they should have no long term problems with their immune systems. Even better, this problem typically spontaneously disappears which means the boys won't be subject to long-term treatment over the next few weeks/months.

It also means, that as long as everything else goes well, the boys will get to come home in the next week as long as we see their pediatrician weekly and a phlebotomist (blood doctor) monthly for awhile. We can do this.

So in order for the boys to come home, they have to avoid infections and any other new problems, and they have to learn to eat on a schedule. At least from what we've seen, L has this scheduled eating thing down. He is 5 for 5 on finishing the bottles Jeff and I have given him over the last two days, and we are desperately hoping he keeps it up. M is still not there. We did have some major food victories with M this week - he finished a bottle for Jeff and has started nursing like a champ. In an effort to get M to eat enough from a bottle to keep the doctors happy, I have temporarily stopped nursing him, so hopefully he will catch on soon. He seems to be a day or two behind L on most things, but when he gets them, he makes sure he does them perfectly. (And I suppose I don't even have to mention that we are going to completely revamp how they eat when they get home so we can get away from this insane force feeding schedule.)

This week has taken a toll on R, too. I have been at the hospital from 8:00 - 6:00 every day which has left little time for her. She's had Dad or Gran every day, but that's still not the same as mommy time. Our one child with the amazing immune system, finally broke down and was sick with a cold starting during the night on Thursday/Friday. We cut our time at the hospital short on Friday. After I spent an afternoon with her, and she got a good night's sleep, she seems to be just fine.

Now if only we can get, and keep, L and M to be just fine too!