Wednesday, December 24, 2008

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.

Saturday, December 20, 2008

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.

Saturday, December 6, 2008

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!

Saturday, November 29, 2008

Week One

The boys are a week old today, and what a very strange week it has been. The week was a bit surreal, a bit of an emotional roller coaster, and included a holiday. What madness!

My thoughts are absolutely all over the place, so here is the best I can do at summarizing what's been going on.

I was discharged from the hospital on Monday, which was great news because it gave me a lot more freedom to spend time with L and M. (They sound like an episode of Sesame Street - they were also brought to us by the number 2!) Unfortunately, on Monday afternoon we learned that the time together would definitely be spent in the hospital. Due to their rather unusual birth story(ies), and I promise to share my rambling version of it/them soon, they needed to stay on antibiotics for at least seven days, which meant definite hospital time for the week.

Through the week, they have done well and have made all the progress their medical team would expect for preemies, especially given that boys are apparently slower to catch on to life in the great big world than are girls. (Such lazy little boys!) While we have had some issues along the way, right now we have two pretty healthy looking babies who are eating, sleeping, and pooping well. They are still not taking all their food orally at every meal, but Leon is nursing like a champ and taking almost all of his, and Michael is taking more than half orally, which their doctor believes is excellent progress. Apparently with premature babies, there comes a day where everything just clicks into place, and based on their efforts so far, everyone is sure that day for eating will come very soon for these two since they are improving every day.

However, the boys are also facing a very serious issue that has nothing to do with being preemies. In short, the boys are just not producing enough white blood cells, which are needed to fight infection, and everyone is baffled as to why. The NICU at our hospital is considered the second best in the state, following only behind the departments at Duke and UNC-Chapel Hill. (I'm guessing they are combined or else there is some very odd math going on.) Those departments have already been consulted, and the physicians there are also currently scratching their heads as the boys seem to be happy and healthy in every other way. They are running a battery of tests on them to essentially start ruling out what isn't causing the problem, and they are also going to start performing blood work on me. Right now no one knows the problem, or really what it will mean, so Jeff and I are just doing our best to take things one day at a time and focus on keeping the boys happy and healthy in every other way. I'm learning to fight for them, in a nice way, and so far this has resulted in them being moved closer together (they were in two separate halls), allowed them to breastfeed, and now means they can spend some time together every day.

Meanwhile R is adjusting to life as a big sister, and thankfully she doesn't know any other way of being a big sister. She is technically only allowed to visit the boys once a week. We decided that meant one day per week, and she made two trips to the hospital last Sunday. On her first trip, she was a little overwhelmed and her only comment was "teeny, tiny baby" when she saw M. After some explanation that Mommy had a room at the hospital, and L and M each had their own rooms, she did better on her second visit. She sang to the boys and ended each visit with "Bye, M!" and "Bye, L!" The boys had IVs in their heads since they rip them out every where else, but this didn't seem to bother her. She just looked at them and said, "Medicine!" and knew it was just like Mommy's medicine.

Since we found out about the white blood cell issue, I have been staying at the hospital most of the time, going around 8:00 p.m. and staying til 2:00 p.m. the next day which allows me to be there for 5 of the boys' 6 feedings a day. In between, I am home to nap, shower, and spend time with R. She seems to be doing okay with this schedule as I am still spending more time with her than I do when I go to work. She hasn't quite discovered that I don't get weekends off, but with Gran here to help and take her on adventures, I doubt she'll mind.

R was a big fan of Thanksgiving, and her she enjoyed many of the holiday traditions, even if I wasn't around for most of the day. She watched the parade in the morning, and was happy to fill me in on the details I missed, including Dora and Abby flying by and waving. She watched football in the afternoon with Jeff, and she ate turkey for dinner. But her take on Thanksgiving is similar to her take on birthdays. If birthdays mean cupcakes, Thanksgiving means, "Pump-kin pie!!!" and the pie was CLEARLY the highlight of her day. After all the other drama of the week, we enjoyed just kicking back and eating some pump-kin pie too!

Wednesday, November 26, 2008

The Birth Story(ies)

Twins typically get stuck sharing everything from Legos to bedrooms to their parents' attention. And they almost certainly share a birth story. But knowing how things in my life are always, um, different, it is only fitting that my twins each have their own birth story.

The Birth of Percy
(Yes, we did give them new names, but the old ones will work for now.)
I woke up at 5:45 on Saturday morning having the hideous kind of lower back pain that is only associated with being in labor. I wasn't having any abdominal pain, so I decided to just monitor it. Over the next half hour, I continued to feel contractions at irregular intervals as back pain.

At 6:15 Jeff's alarm went off, as he was planning on spending the weekend coaching his team in a soccer tournament. When he got up, I told him I was "feeling weird," and he raised both eyebrows, but I told him to go ahead and shower.

Less than 5 minutes later, I started feeling another kind of weird that I can't explain, so I called my parents who were thankfully in town and staying just a few minutes away. I told them that I wasn't in labor, but I thought something was going on, and I asked that they come over so that I wouldn't be alone with R when Jeff left at 7:00 since I knew I was in no condition to care for her.

Around 6:30, while waiting for my parents to arrive, my water broke. I went into the bathroom where Jeff was still showering and calmly told Jeff him he wouldn't be coaching that morning. I then called my doctor's office and finished packing for the hospital. When Jeff got out of the shower, he too began packing his stuff, and in hindsight I can't realize how calm we were knowing that our babies would most likely be born that day.

My parents arrived around 6:40, the dogs went nuts, and we got R up to tell her goodbye. Suddenly, I felt my body progressing really, really quickly, and as we walked out the door I could feel Percy descending through the ol' birth canal. I instinctively crawled into the backseat of the car, and my last words to Jeff as I laid on the seat, clutching it in a death grip were, "Get me there safely."

And we were off. Like a seasoned NASCAR driver, Jeff took off at 65 mph driving through city streets while I laid in the back watching landmarks seemingly crawl by. Jeff tried to talk to me, but I was concentrating so hard on my mantra "I'm not pushing," that I was unable to respond. When we were about half way there, the doctor on duty returned my page. In the middle of a monster contraction I managed to tell him that my water had broken and I was finding it very hard not to push. He then calmly asked me if this was my first baby. I told him no. He then not-so-calmly asked how far away we were. I was completely oblivious to my surroundings, but I managed to relay Jeff's "10 minutes," to the doctor. My last words to the doc were, "I don't think I can get out of the car by myself," and after some reassurance from him about there being help, I hung up the phone.

As we continued to speed along, I suddenly felt Percy crowning, and Jeff said that I did manage to shout, "He coming!" I reached down to take off my pants, and that's when Percy just kinda shot out of me. He came all at once, and I instinctively picked him up and wrapped him in my cardigan. He began to cry, even before I was able to clean out his nose and mouth. He actually barely cried, which scared me since Ree came out screaming in a nice, relatively warm hospital room, and this poor little guy was naked and wet in 26 degrees, but Percy was too busy looking around and holding my finger to make much noise.

At some point Jeff glanced over his shoulder and saw our new little man, and about three minutes after his birth at 7:08 a.m. we arrived at the hospital. We pulled up to the door at the hospital, and Jeff went inside for help. Seemingly seconds later, my doctor opened the door to the car and I saw a sea of medical professionals. My doc reached into the backseat and cut the cord, and then a horde of nurses whisked little Percy inside.

I suppose this is about the point where Stinkpot's birth story begins...

The Birth of Stinkpot
Knowing that twins are typically born minutes apart, the remaining members of the gigantic medical crew frantically tried to get me out of my pants, out of the car, and into the hospital. Yes, things happened in that order, and as I sat in a wheelchair wearing just my t-shirt, sweater, and a pair of clogs, I realized it was really, really cold out. I asked for a blanket, and in the chaos, someone ran inside, grabbed a blanket, then ran back out with one for me. Not the most efficient method, but at least I was no longer naked from the waist down (aside from the clogs).

It was my turn to be whisked inside, and they ran me to the closest staff elevator, took me up to labor and delivery, and all but launched me on a bed in the first available room. Nurses simultaneously took off my clothes, inserted an IV, and threw a gown over me. Someone then asked for the position of Twin B, which the doctor couldn't tell from an external exam. Suddenly I was on my back, the doctor was doing an ultrasound, and he announced, "Vertex." After spending so many months lying across my belly in a transverse position, little Stinkpot was head down. A collective "Woohoo!" was heard throughout the room, with me being the loudest. I still had a chance of delivering twins without a c-section.

Jeff soon arrived with a nurse, and I began shaking violently. The shakes were a nasty combination of the usual post-birth shakes and strong contractions starting again. By this time Percy was all clean and cute and swaddled, so they brought him to me for some cuddle time. Not only was it good for me mentally, but they thought it would definitely help my hormones surge so that his brother would quickly arrive on the scene. I definitely enjoyed cuddling, and a nurse took some family photos with her camera since we had forgotten ours in the crazy dash out the door.

And then things slowed waaaaaaay down. I was still shaking, but I had a strong feeling Stinkpot wouldn't be arriving any time soon. I could actually feel him stretching and playing between my contractions. The little guy was so excited to have so much room. I could just sense him thinking, "This is what I'm talking about!"

Since things had ground to a halt, the doctor who cut Percy's cord decided to head home at 8:00 a.m., the time he was scheduled to leave. He filled in the new doc, who turned out to be a wonderfully patient man.

Knowing that Stinkpot was not going anywhere, I inquired around 8:30 or so if I could have an epidural, figuring there was no chance. As it turns out, I was making no further progress, and my wish was granted. As much as I hate unnecessary drugs, it was lovely, and I actually just zoned out for quite awhile in a nice, relaxed state, the shaking finally gone.

Around 9:30 or 10:00, when I had still made no progress, Doc B said it was probably time to give me Pitocin. He wanted to try inducing labor (again) by that route to prevent the boys being born TOO far apart. Some doctors, including several in my practice, insist that twins be born within an hour of each other. I knew I was already on borrowed time, and I was still hoping to avoid a c-section, so I graciously accepted the Pitocin.

They started Pitocin and still we were waiting and waiting and waiting. Finally, around 11:15, things started kicking in, and life started getting pretty painful, despite the epidural. After about half an hour, as things got worse, the nurses encouraged me to go ahead and start pushing, which I did. Stinkpot's bag of waters still hadn't broken, and each time I pushed, I could feel it painfully pressing on the birth canal. Finally the doctor was called in, they checked Stinkpot's position, and they decided it was time for me to push. (The nurses and I didn't let on to our little secret about me having already pushed for quite awhile.) The doctor also decided to manually break Stinkpot's bag of water. It sprayed ALL over him. He was drenched. Even the resident with him had to cover her mouth to avoid laughing out loud.

After that, it didn't take too terribly long for Stinkpot to make his entrance into the world. He finally emerged at 12:16 p.m. during the Ohio State - Michigan game. Unlike his brother, Stinkpot came out screaming, and we knew immediately he at least had some nice, healthy lungs.

After a little cuddling, he too was whisked away, and we sat back and stared at the TV, still in disbelief that we were suddenly the parents of three children.

Tuesday, November 18, 2008

34 weeks and still cookin'


As of today, I am 34 weeks pregnant. Woohoo! This is a major milestone. While they are far from well done, it means the babies are at least al dente and should be okay if they decide to make an appearance sooner rather than later. It also means the docs are relaxing quite a bit. After going in for checkups twice a week for the past few weeks, I am back to only going once a week like a "normal" pregnant woman.

For those who are curious, I had an ultrasound last week, and the babies weighed 4 pounds, 9 ounces each. Having nine pounds of baby in my belly definitely presents a few problems. Sitting is rather awkward these days, so when at home, I sprawl. Thankfully, we have great couches for sprawling. The question I'm asked most frequently seems to be, "How do you sleep?" and the answer is "Very carefully!" When I'm tired, I flop down on my side with a body pillow and pass out for awhile. Since the boys are so big and I'm carrying them so low, I typically can't lay still for more than an hour or two without having to go to the bathroom. That's when the comedy begins. I have to somehow figure out how to roll out of my locked position and get out of bed and get to the bathroom without stepping on Max who is always at my side. This process can take awhile, particularly figuring out how to roll over. Poor Max generally gets stepped on. Jeff finds this whole process hilarious. I am grateful that he has not taken a video and posted it on YouTube. Then again, perhaps I shouldn't give him ideas...

Wednesday, November 12, 2008

Things That Make Me Smile


There are many things about R that make me smile. Here are some highlights of the past week.

Jeff told R she needed to help take care of Sick Mommy, so R has been busy cooking for me. Every day she comes in with bowl after bowl of play food for me, and each and every time she demands, "Eat, Mommy, Eat!" And the food she makes cannot be matched in even the finest of restaurants. Her favorite dish is a sandwich containing a hamburger patty, onion rings, peas, eggs, and a hot dog between two buns. She also keeps me steadily supplied with juice and "hot tea."

Apparently this morning she decided that play food and drinks weren't enough for Sick Mommy. We keep R's sippy cups on the door of the refrigerator so that she can pick them up herself when we open the refrigerator. This morning Jeff opened the door for her while making breakfast and didn't pay attention to what she grabbed. She then came trotting into the bedroom where I was working in bed with her treasure. She had a can of Miller Lite for me. My girl knows how to take care of Sick Mommy! (And though I haven't been a big drinker the past few years, after more than eight months without a drink, it did look pretty good even at 8:00 in the morning. So many tailgating memories came flooding back...)

Before the election, Jeff found this clip on YouTube. For those of you not following the link, it's a song called "Obama is Beautiful World" performed by a cheesy Japanese pop group. Jeff played the video once that he can remember. Last Tuesday night we were watching election results on TV before R went to bed. Every time someone said the name of our President Elect R would exclaim, "O-BA-MA!" Apparently it is a very fun to say. This continued for quite awhile, and then she just started singing "Obama is Beautiful World." And she sang it over and over. For several days. You can take the girl out of Athens, but you can't take Athens out of the girl...