All About R

Since I can't seem to find time to write anything coherent, and, well, really anything, here is some randomness from R's life at the moment.

R has decided she identifies best with bratty girl characters. Her current favorites include Lucy from Peanuts, Zoe from Baby Blues, and Angelica from Rugrats. Since, aside from Lucy, she only knows these characters from books, we are seriously considering banning these books for now. How sad is that? David from No, David may have to go too. He is clearly not a good influence on anyone!

Aside from the bratty girls, R remains firmly obsessed with Disney Princesses. She has never seen any of them on TV either. In fact, she doesn't even have books about them. She has one set of Disney Princess dolls that started the mania. It is quite creepy. So much for gender neutrality! Thankfully she still spends hours a day happily playing with her new Brio blocks and with vehicles from her Brio-esque train/transportation set.

If I have to sing "Frosty the Snowman" too many more times, I just may scream. R is obsessed. We sing it many, many times a day. In fact, we sing all Christmas songs many, many times a day. The worst is bath time. Each night she gives me the opportunity to entertain her with a 20+ minute concert while I pump breast milk. Since I am doing the entertaining, I don't suppose I could be called a captive audience. Perhaps I am her captive entertainer? Or just a slave? She doesn't actually ask for anything these days, she does demand it. (Occasionally we remember to ask her to use manners. Sometimes we get a "please" and often she storms off to her room crying because we dared "deny" her something. Mostly we just comply because we are too sleep deprived to really thing it through.) Yeah, slave seems pretty fitting.

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.

The Last Two Weeks in Review

This is my third attempt at describing the past two weeks. I'm finding there is so much I want to remember and so little that other people will care about, that it's nearly impossible to organize and edit all the information and describe it in any coherent way. And acute sleep deprivation is not helping the situation. I'm going to do my best to let go of my perfectionist tendencies (again, the sleep deprivation is to thank), and am gonna just cut myself off and post my ramblings. Editing will come later...

December 7th - 11th was by far the most frustrating period in the NICU. On the 7th we were told the boys would be coming home that week. It looked like Leon would definitely be home by the 9th, and possibly on the 8th, and Michael would follow within a day or two of Leon. But then, on the 8th, a different doctor was on duty, and the new one was much more cautious. We were back to playing food games, and Jeff and I were spending 18-20 hours a day at the hospital to ensure our boys were playing the games correctly (and we were helping them cheat, when necessary). Once L and M wete eating enough at their force feedings, they were allowed on-demanding feeding. Once they were eating on demand, they had to gain weight. Then they had to gain weight more rapidly. Finally, on the 11th, they were allowed to leave. That day we also got an explanation for the insanity of the week. The doctor was truly treating our boys like she would treat her own child. Her daughter has pulmonary issues and she was providing our children with the level of care she demanded for her daughter. More than anything, we felt sorry for her daughter!

Once the boys came home we discovered that for us, claiming to be parents of twins who are in the NICU is akin to claiming to have been to China because you visited EPCOT Center. You got the flavor of it, but it's a long way from the real deal. The first week at home was a total blur.

R was extra needy after since not only did she have to share attention with two newborns, but she had to deal with the fact that her parents had been MIA for three weeks. We read a lot of books, including the story of A Charlie Brown Christmas which I'm pretty sure we read at least 82 times a day. She is obsessed with Christmas in general, so we also sang Frosty the Snowman almost as many times. She and I baked Christmas cookies and went Christmas shopping.

While in the NICU, the boys were primarily bottle fed, and I expressed milk 7-8 times a day in order to have enough breast milk for both of them. This continued at home, both because the boys weren't established as great breast feeders and to allow others to help feed them. One of R's favorite expressions was "Mom pump milk!" and she loved milk pumping time because it meant I could do nothing but sit and read and sing to her. One night she surprised me by fully assembling the breast pump for me. Apparently she is very observant.

Adding a new baby into a family is crazy, but adding two babies takes it to a whole new level of insanity. It didn't help that we only averaged four hours of sleep a day. (Note, that is per day, and not per night as there were nights we only got 2 - 2.5 hours of sleep.) For the first couple of days we didn't even really know what to do with them. They spent a lot of time in their crib. Thankfully they were together in there. Just as we were starting to make a plan and remembering what to do with newborns, Leon decided to cry from 2 a.m. - 8 a.m on Monday which meant Monday was a recovery day. Finally on Tuesday we started actually interacting with the little guys. I even put down a blanket on the floor and they had "tummy time" with R.

During the week, L and M both discovered the dogs. Jeff was able to witness it with both, and said it was too funny.

Despite the fact that the boys are supposed to live in a people-free bubble, we did get out a couple of times. On Friday the 12th we took them to the doctor and discovered that each had gained 3 ounces since the day before. While part of the weight gain was the result of using different scales, they both clearly gained weight. Woohoo! And take that overly cautious NICU doc!

Wednesday, December 17th was gorgeous, and with temparatures in the 70s, we headed out for a walk. We do not travel lightly these days. R was in the front of the double stroller, and Leon sat in his car seat in the back. Jeff pushed that monstrosity while I carried Michael in the sling. I can only imagine what we looked like walking down the street. I'm sure it was interesting.

Then again, everything about the boys so far, including their birth has just been, well, interesting.

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!