Clara and Clinton

Clara and Bill Clinton now share a medical condition....acid reflux. A pediatric pulmonologist took a look at Clara's second round of x-rays after all the meds she was on didn't work. His assessment is that nothing is wrong with her lungs. His best guess is that she's suffering from reflux and the reflux is causing the oxygen dependency. So, they started her on antacid today. We need to talk to the pulmonologist in person to clarify everything, but what we think is happening is:

1) She doesn't have a serious medical issue with her lungs (thank God)

2) The reflux should be a transient condition that she outgrows

3) She'll still need to go home on oxygen and a pulse oximeter for what's looking like somewhere between 3-6 months (so, basically, wish us luck on leaving the house with two babies, an oxygen pack, and a monitor....pizza delivery here we come)

4) She's considered medically fragile at this point and we need to be really, really careful about keeping her healthy. A normal cold that any baby would get will send her to the hospital and be quite dangerous for her. So don't be offended if we let you hold Evelyn and not Clara. And please don't be offended if we ask you not to come over if you have a cold.

5) She may be able to come home as early as Friday. We're taking this news with some caution, as we are recovering from thinking she was coming home yesterday....best not to get overly excited until we're actually carrying her out of that place.

6) She'll start outpatient follow-up with the pulmonologist (probably weekly) after she comes home.

All in all, good news. Certainly we had hoped to avoid having a really fragile baby, but we're very relieved that her lungs look okay. Let's hope this reflux hypothesis pans out and we can fix everything.

Evelyn continues to do well at home. She's a very sweet, very laid back little girl. She had a big visit today with her boyfriend Anderson (Lexie's son) who is super cute and keeping his parents plenty busy.

Here are some new pictures:

Visiting Clara in the hospital

First bath at home

Hanging with the big brother

Sleeping on Dad

Most people show off the cute pictures...I prefer the goofy looking ones

Best picture ever

I happened to catch Evelyn looking like she was smiling

Aunt Mandy's visit

Take care,

Kris

Another delay

Clara's breathing has somehow defied the odds and gotten worse. They're trying a stronger diuretic and are re-doing the chest x-ray today. Stay tuned.

Kris

That fiesty Clara

They did a chest x-ray today to see what's going on inside little Clara that's keeping her from breathing correctly. She's showing signs of lung inflammation that the doctors think is a result of the oxygen she's been receiving. I guess some babies are susceptible to inflammation. They started her on a bunch of treatments today to try to clear up the problem - an inhaled steroid and a nebulizer. They also did one dose of some diuretic that sometimes helps as well. They'll give it until Monday or Tuesday to see if it works and they can reduce her oxygen and flow needs. Either way, it sounds like she'll be coming home next week....it's just a question of whether or not she's coming home on oxygen only (preferred) or oxygen and a pulse oximeter (a pain to deal with, but less of a pain than driving to the NICU everyday). So we shall see. She also had her follow-up eye exam looking for Retinopathy of Prematurity. She's still looking ROP-free, but her retinas are too immature to completely rule it out. She'll have another exam in 3 weeks. Evelyn's follow-up is scheduled for next Thursday.

Evelyn is adjusting really nicely to being home. She's just a really sweet, mellow kid. Well, right now she is....that could always change. But, generally she only cries when she's hungry, wet, or dirty. Last night Greg and I had to wake her up for both her feedings. This is a lovely problem to have compared to someone (ahem, I'm looking at you, Alex) who woke up every hour and then cried for 2 hours after his feedings.

That's it for now. Wish us luck for some good news for little Clara...she could use it. We're still hoping for great news for her. Maybe this will be the time we get great news.

Take care,
Kris

Homecomin photos

Day two went better. Evelyn settled in today and went back to her 4 hour schedule which I appreciated a ton. What did I not appreciate, you ask? I did not appreciate being showered in vomit. Ahhh...the joys of newborns.

Here are some pictures:

Alex's lego representation of SexyVan

Last time together in the NICU crib

Going home!

Home at last

New digs

Homecoming Queen

Evelyn's home!! My lovely older daughter came home yesterday afternoon. We got delayed one day because the little bugger had a brady on Friday and they wanted to watch her for another day to make sure it wasn't the beginning of a bad trend. All was clear so we got to go pick her up and take her home. She's been doing pretty well. She misses Clara and woke up quite a bit wanting someone to hold her or rub her back. I definitely feel like a second time mom though - I learned the hard way with Alex not to let him sleep on us all the time and not to pick him up every time he made any kind of squawk. Greg and I are trying not to undo the schedule the NICU gave the girls. If there were only one of them, we'd had the luxury to cuddle and coddle. But these girls have to be tough :) So...we kept putting her back in her bassinet with a back rub here and there.

For as happy as we are to bring a baby home, we're equally sad to leave a baby there. It was really tough to walk out without Clara. Hopefully, she'll come home in the next 1-2 weeks. She'll definitely come home on oxygen for at least month, possibly several months. It sounds like a drag, but I'd rather get her home with tubes attached than keep her there for God know how long.

We really lucked out - my dad decided to come into town for a quick visit and it ended up being really, really helpful to have him here watching Alex while we dealt with discharge information and last minute shopping to prep the house. Speaking of Alex - he has been an excellent big brother. He's all loves and kisses. Every time she cries he says that she misses Clara.

As far as visitors go- we have to be careful not to overwhelm Evelyn. She can have one or two visitors at a time, but no big crowds. And, because she's a preemie, we all have to be really careful about handwashing. The doctors recommended no kids visit for awhile and obviously no sick visitors. All others are welcome... just give us a call first.

Take care,
Kris

Good news/bad news

Well, we got good news and bad news today. The good (great) news is that Evelyn will be coming home in 2-3 days. Yay!! The bad news is that the latest round of follow-up brain ultrasounds showed that Clara's brain bleed caused some enlargement in her ventricles. The exact outcome of this development is unknown. It likely means she'll have some sort of motor deficits. Exactly how much....we're not sure. It could mean that she'll walk a little later or it could be more serious (hopefully not as serious as cerebral palsy). So, there you have it....more to worry about. For some reason it had never occurred to me that one baby would have typical development and the other one wouldn't. I can't even begin to imagine how difficult that will be for the girls if the deficits are severe. Can you imagine how you'd feel if you had a delay and your twin sister didn't? Or the guilt you'd feel if you were fine and your sister had problems. Ech. Too much to think about.

So, I'm going to shove it out of my thoughts. I can't do anything about it anyway and we won't even know what it means for a long, long time. For now I'm going to focus on getting Evelyn home this weekend and Clara in the next week or so. I'm going to focus on just loving them and hope everything else falls into place.

Take care,
Kris

Prolactin Deficiency: Or How I Learned to Stop Worrying and Love Formula

The lactation specialist told me the only reason Reglan wouldn't be working for my milk production would be if I had a prolactin deficiency (or as Greg likes to call it "tough actin' Prolactin"). So....there you have it. I have a prolactin deficiency. There's nothing I can do about it. Nothing will increase my milk supply. This information could have saved me months of guilt and sadness had I known there was such a thing when I was nursing Alex. I can't tell you (although Greg probably can) how many tearful nights I had because I thought I was such an inadequate mother with Alex. I feel a little better knowing that there's a reason behind it all. The brief Internet search I did didn't make me feel really good about the deficiency and what causes it, but I'll wait to worry about that another day. In the meantime I'll continue to pump full-time while the girls are in the NICU and switch to part-time when they come home. This should allow at least 3 months or so of some breast milk before I give up.

Now....for the exciting news of the day....look who's a big girl. Evelyn is on room air!! Hint: she's the one without the cannula :)

Now she just has to start eating more from the bottle and she can go home!!! Hurray!

On to the daily stats: Evelyn is 5 lbs 10 oz and Clara is 4 lbs 11 oz. Clara is still at 100% oxygen and 125 ccs of flow. She'll get there one of these days.

Take care,

Kris

I've been unpleasant

I've been unpleasant. I know this about myself. I've been wallowing in a pool of prolonged self-pity. Prolonged self-pity is, by the way, a trait I find undesirable in people and I find it especially undesirable in myself. I made a decision today to get over myself...my life is not that tough (this attitude may be a result of spending part of my life with Grandma Evelyn). I have two beautiful baby girls who will be coming home soon. They're not going to be in the NICU forever - it's a temporary situation. My perinatal stay already feels like a lifetime ago. My miscarriage seems like 3 lifetimes ago. These feelings give me hope that this whole NICU thing will also feel like it never happened.

I'm making the decision to get over myself because I was thinking about how frequently people note the strength Greg and I have had through this momo twin thing. I was thinking about the people who have said this to us and thinking about what they've gone through in their lives. The hardships they've endured and the amazing strength they've shown. I've had friends who've lost husbands, siblings, and babies. I've had friends who have had to terminate pregnancies or had to make really tough decisions about termination. I've had friends who've watched their mothers fight breast cancer and friends who've had recent breast cancer scares of their own. I've had friends deal with fertility issues for years and still have no children to show for the heartache. When I think about everything that everyone else had had to go through it's amazing to me. We all get up every day. We shower. We go to work. We function because we have to. So, I don't think Greg and I are any stronger than anyone else. It's just that we've recently joined the ranks of everyone else who has to handle a tough situation.

Now, my decision to stop feeling sorry for myself doesn't mean I'm never going to whine (I mean, I wouldn't be me without the whining). And here are two examples - 1) I'm exhausted. I'm tired of getting up 2-3 times a night to pump out tiny amounts of breast milk. Last night I actually woke up an hour after I was supposed to pump with my alarm clock in my hand. Apparently, I turned it off and went back to sleep :) 2) I'm also going to whine about the remaining fat on my body preventing me from wearing my wedding rings. I've been wearing them around my neck for about 3 or 4 months. I'd like to put them back on without feeling like I have sausage fingers.

On to the baby girls - I left the NICU right as they were about to get their ROP screens. Being eye squeamish, I thought better of staying. We should hear back today about their vision. They are continuing to gain weight - Evelyn in 5 lbs 8 oz, Clara is 4 lbs 8 oz. They haven't had any serious desats or apnea since yesterday. Evelyn is barely requiring any oxygen or flow. She should be on room air soon (hurray!). Clara's still needing her share of help breathing. I'm guessing she's at least a week or two away from room air. Both girls are eating well off a nipple (usually a bottle since I'm not there all the time). Today was the first day Clara went to town breastfeeding. I was very proud of her. I'm very proud of them both.

There was another set of twin girls in the NICU today. Being the superstitious lady that I am, I think it's a sign that my girls are on their way out. They're getting ready to pass the torch to the next set of twin girls.

Take care,
Kris

Stupid desats

Not a ton to report today. The girls are doing fine despite some apnea/desat issues yesterday and today. I'm really tired of desats. Really, really tired of them.
They'll get their retinopathy of prematurity (ROP) screens today or tomorrow. Clara's on some fancy 7 day medicine course to try to help with her anemia. We won't know until the weekend or next week if it was successful. Both girls are still gaining weight (although Evelyn lost 21 grams yesterday - who knows why). They are 5 lbs 6 oz and 4 lbs 6 oz.

Take care,
Kris

Don't call it a minivan

Its proper name is a SexyVan. The 'Shoes are (not so) proud new owners of a 2008 Toyota Sienna. Her name is Miller. She's loaded to the minimum. That's right, baby - cloth seats and sans sun roof :) Greg's picking her up tonight because they had to replace a tire. We got her in black because it looked slightly less like a minivan, er SexyVan, in black.

In other news, Alexander woke us up last night at 3:00 am to tell us he wanted medicine. Then he threw up all over me, him, and our comforter. After a couple hours, we finally got him back to sleep. He's seems fine today (a little hoarse) but fine. However, his little illness was enough to keep me from the hospital. I'd hate to pass anything on to the wee ones.

And, speaking of the wee ones.....best news yet. One of the doctors estimated 1-2 weeks for baby girl homecomings. We'll see though. That seems really optimistic given the fact that they are still gavage feeding more than half the time and still have some about of oxygen needs. We'd be thrilled if it were true though.

Okay, onto girl updates:

Evelyn - on low flow oxygen, nipple feeding 1-3 times per day, passed her hearing test, has an eye screen later this week, and will get a Hep B vaccine this weekend.

Clara - still on high flow oxygen, but down to 1 liter, nipple feeding 1-3 times per day, passed her hearing test, has an eye screen later this week, and will get a Hep B vaccine this weekend.

Take care,
Kris

Good news

Hurray! Clara's brain bleed is resolving. They won't bother testing it again unless she fails to meet her developmental milestones. We've got a built in control in her sister so we can compare the two to figure out if any lasting damage was done.

I got to give Evelyn a bath today and I got to breastfeed both girls - Evelyn more successfully than Clara. Both girls are getting some sort of nipple 1-2 times a day. This is a huge step because one of the criteria for coming home is being able to feed without tubes.

Evelyn's down to 1 liter of high flow. Clara's back up to 3 liters because she had a low desat yesterday and it took some time for her to recover. Getting them off the flow is another criteria for coming home. They can be on oxygen, but it has to be without any flow. So, we have to first get them down in high flow liters and then reduce them to low flow. Then we can get them off low flow and just on oxygen.

Clara started some iron yesterday to help with her anemia. Evelyn's off her caffeine (Clara was never on it).

Evelyn's now 4 lbs 14 ounces and Clara is 3 lbs 13 ounces. Both are starting to look like babies - Evelyn especially is really filling out. Clara........still kind of looks like a wrinkly alien, but she's coming along. I think another 6 ounces or so and she'll look pretty baby-like.

I've been back to work for 3 days and it's going okay. I feel a little out of it and I'm trying to recall information that I used know like the back of my hand. I'm sure that right when I'm feeling confident again I'll be back at home with the babies.

I think we should be the proud new owners of a minivan in about 3 days. Lucky us!

Take care,
Kris