Out and About

Since I last wrote:

• I had a day in which my only accomplishment was putting on deodorant. At 3:00 in the afternoon.
• I met a mom with twin five-month-olds and a four-year-old in the parking lot of Kohl's. It took her over 10 minutes to get her kids in the car after shopping. While she was loading her offspring, we chatted. She reassured me it does get better. She added, and I quote, "You still won't have time for a shower," but she did reiterate that it will get better.
• In attempted to detemine why I don't have time to shower, I worked on quantifying how I spend my time. I didn't know if I should be disturbed or impressed by the number of hours a day that are devoted to feeding various members of the family. I think I'll post the numbers separately.
• Because of the hour spent devoted to feeding various members of the family, I decided to give up breastfeeding. Except for pumping at work. But the boys sensed it and then nursed better than they ever had. So I decided I loved breastfeeding. And then my milk supply went down. And I decided I was sick of it again. We are now at a standstill.
• Based on the above, I realized that now is not the time for me to make major life decisions. Or any decisions. At all.
• On Monday the whole family went out to lunch for Jeff's birthday. Jeff pointed out that it was the first whole-family outing since October. We were overdue. We had lunch at Moe's. The boys slept the whole time. It was successful.
• It took us 4 hours to get ready for that lunch which lasted 45 minutes. Lunch would've been even shorter if R hadn't been sucked into watching the TV's at Moe's.
• R and I picked up fried chicken for dinner for Jeff's birthday. When we pulled into the parking lot, she started saying, "No, no, no!" We were at Church's Chicken. She thought we were going to church. She was heartbroken. She also insists that we pray any time all three of us sold-food eaters converge at the table. Where did this child come from? And, yes, I will take her to church soon. How can I say no to a child who is sad you are getting fried chicken instead of going to church?
  
• On Tuesday I went to Wal-Mart by myself with the boys. (Disclaimer: Five people + two dogs = expensive. We will support the evil empire at least for now) . It was the first time I had taken them anywhere truly in public by myself. Other excursions had been limited to doctor's appointments and a trip to a La Leche League meeting on Saturday in which I fell back in love with breastfeeding. The trip was actually successful.
• I did learn that getting newborn twins out of the car in the pouring rain is not fun or easy.
• The rest of the trip was rather fun and easy.
• We finally sent out the last of our Christmas cards today. Not even a month late. We rock!
  

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.

Moo

Breastfeeding with the boys has been quite an experience. Because they were so good at it in the NICU, we had to discontinue it since they weren't hungry for their bottles, the only food that "counted" as the doctors worked to ensure they were getting enough to eat. Then when we got home, it just didn't happen. They weren't good enough to exclusively breastfeed, and I just didn't have the energy to pump milk, give them bottles of expressed milk, and breastfeed. But then my milk supply all but disappeared last weekend, and so last Sunday we began our week-long breastfeeding odyssey.

I first turned my attention to L, who at least was still interested in the breast. I am extremely happy to report that over the course of this week, he has gone from feeding once a day at the breast to feeding all but once a day at the breast. Although I've offered it, he hasn't been too interested in the middle of the night, and I'm too tired to keep trying with him. He gets a bottle so we can get some sleep! Of all three kiddos (R included) he definitely has the least trouble with the breast, and this is a good thing. Because then there is M.

M, who nursed like a champ in the NICU and could get letdown in a matter of seconds, was showing absolutely no interest in the breast. He refused to even attempt breastfeeding. It got so bad, there were a couple of days over the past few weeks I didn't even think to offer it to him. But it also made me sad because I realized there were days in which I had no contact with him other than to change his diaper. It was pass him off to Jeff for bottles, play time, etc., while I focused on L who wanted to eat.

So, in addition to nursing L lots this week, and pumping for M, I also gradually took over most of M's feedings. This meant a lot of baby time for me, and little time for anything else. But the efforts paid off. While still not enough for the boys, my milk supply is back to where it was before it dropped off 10 days ago. (The boys are just eating a lot more now.) And M has now successfully breastfed four days in a row. It's just been one feeding a day, but that is a huge improvement.

Tonight we achieved the ultimate twin nursing victory - simultaneous feeding. At 8:09 p.m., while listening to Layla by Derek and the Dominos (these details are important, seriously), both boys successfully latched on at once. It was a miracle! Who knows when it will happen again, but if it happened once, it can happen again especially since L is proving that he can latch on in any crazy position as long as he is within about eight feet of my breasts.

For anyone who is curious, the boys are now drinking about 700 - 800 mls of milk a day. Yes, they need my body to produce the equivalent of two fifths of booze a day, and I am actually pretty close. Although sadly depleted, we did have an enormous stash of frozen breast milk, and we have only been thawing about 200 mls total per day, which out of the 1.5 liters they've been drinking, isn't bad. I have been starving all day (for all you females, think severe PMS times 10) and drinking gallons (literally) of water, so hopefully this means my milk will be increasing soon.

For tonight, all I've got left to say is "moo!"

New Year's Fun

There was a time in which Jeff and I had an annual New Year's Eve party. It was a crazy, joyful occasion with lots of alcohol and little sleep. After the evening's festivities, everyone passed out at our house. On New Year's Day we would cook a big breakfast and following the clean up from the debauchery, we looked forward to a day of football watching.

New Year's with three kids under three is not quite the same.

We did go shopping to prepare for the big event. Jeff checked the pantry to make sure we had Skyline chili in order to make dip. During a regular weekly shopping he and R picked up the remaining ingredients for dip. They also bought a bottle of champagne and a bottle of sparkling raspberry/apple juice. At the last minute we discovered we didn't have a bag of chips with which to consume our dip, so an emergency trip was made to purchase those.

We did work around the house in order to get ready for the big night. Instead of cleaning and decorating, Jeff did laundry all day on New Year's Eve. Lots of laundry. About five loads, or a 2-3 day supply. Then we placed all that laundry on our love seat in the living room where it sat filling it from one side to the other and from the cushion up to the top of the back of the seat. It was as impressive display created by around 14 pounds of baby.

Naps were taken before the big night. We weren't resting in an effort to stay up, we were more passing out from having only slept 2.5 hours on Monday night and 4 hours on Tuesday night. While I slept on the bed with M and Jeff slept on the couch with L, R held down the fort choosing to skip her nap. Thankfully she did a great job of entertaining herself and so far has always been on her best behavior when she "gets" to skip her nap, which is increasingly more common. (As a result of not napping, she's been sleeping until 8:30 or 9:00 in the morning, and that is okay with us, too!)

Rather than having a big smorgasborg of snack late in the evening, Skyline dip, our one "snack" was prepared and served with dinner so that R could enjoy it with us. Adding to her belief that holidays are about food, she delighted in knowing that on New Year's Eve you get to eat chips with dinner. She thought that was fantastic.

We somehow managed to get the boys to bed at 8:30, and R, Jeff, and I rang in the new year with our sparkling raspberry toast at 8:45 p.m. (We were celebrating the new year somewhere in the Caribbean.) We don't know if R liked the juice, the act of toasting, or the time alone with us best, but she did clearly enjoy this.

I was exhausted and cranky and had planned to sleep until 11:45, but that didn't quite happen. I can't even remember what we did over the next few hours although I know I showered, we fed the boys again, and I pumped milk. A little after 11:00, we discovered that PBS was playing one of the Eric Clapton Crossroads concerts, and what was a girl to do but stay up and watch? While watching it, Jeff broke out the bottle of grown up champagne, and he and I actually enjoyed some time alone together. We had more champagne and toasted at midnight before heading off to bed. It was lovely.

New Year's Day we woke up groggy and slightly hungover (at least I was - champagne after nearly a year of not drinking is rough) - just like the old times! And we served breakfast to a crowd, although more creatures had Iams or breast milk than bacon and eggs. But the best part were the first words out of R's mouth that morning. "Good morning, Mommy. Happy new year!" How could I ever trade that for one of our old parties?"

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.