Planning ahead - TTTS Race for Hope

The TTTS (Twin to Twin Transfusion Syndrome) Race for Hope is coming to Denver on November 9th. You can check out this link for more information: http://www.fetalhope.org/ttts-race-for-hope.html

In yet another "not ha-ha funny" moment of my recent life, I'll be doing my first 5K for a condition that actually affected my life. Sure, I did the Alzheimer walk in memory of my grandfather, but this one feels different. More close to my immediate life I guess. Amy and I used to run these 5Ks all the time just because we liked running. I always found them touching and I was glad to be part of them - don't get my waterworks started talking about the Organ Donor one where the family of the donor child met the family of the recipient...man, that was one of the most emotional things I've ever witnessed - and I'm a NICU mom who cried every day for 50 straight days. So you know it was emotional :) Anyway, this race will be different for me because I'll complete it in honor my little girls. With all the other issues Clara and Evelyn have had, it's easy to forget they are TTTS survivors. Let's see if I can get through it without crying.

Other TTTS races will also be held. I encourage anyone near these areas to attend or to donate a pledge.

September 20, 2008 - Charlotte, NC
September 28, 2008 - Kirkland, WA
November 9, 2008 - Denver, CO
2008/2009 - Houston, TX
March 1, 2009 - Anaheim, CA
Spring 2009 - Boston
2009 Tampa

I'll close with a description of TTTS for those who may be unfamiliar:
TTTS is a serious, progressive disorder that affects up to 15% of MC twins. The twins do not have malformations, but one transfuses the other through a particular blood vessel connection. In this situation, an artery from the donor twin enters the placental substance to exchange oxygen and nutrients. Unfortunately, the corresponding vein returns "by mistake" to the other twin (the recipient) via this arterio-venous connection.

In Twin to Twin Transfusion Syndrome (TTTS) the donor twin responds by partially shutting down blood supply to many of its internal organs, especially the kidneys, has reduced urine output and therefore a small amniotic fluid volume (oligohydramnios) in its amniotic cavity. The recipient responds to the blood transfusion by producing excessive amounts of urine, and is surrounded by a large volume of amniotic fluid (polyhydramnios). It is the combination of oligohydramnios/polyhydramnios that suggests the diagnosis of TTTS.

The twins are often discrepant in size, as well, with significant discordance in estimated fetal weights. The recipient's blood becomes thick and difficult to pump around the body, and this can result in heart failure, generalized soft tissue swelling (hydrops) and fetal death. Because of the blood vessel connections across the placenta, if one twin dies, the co-twin faces significant risk for death or damage to vital organs. If a co-twin survives, there is a high risk of brain injury. Without treatment, about 70-80% of twins with TTTS will die. Survivors may have injuries to their brains, hearts and kidneys.

Take care,
Kris

She's Off!

Just got the call from Clara's doc and she did well enough on her room air test that she can come off oxygen completely. Hurray!!!!!!!!!!!! She averaged 93% and spent 0.7% of the time <88%.

She'll have to go back on if she gets a cold or if we go to the mountains or something, but otherwise, she's off!!!! Hurray!! Hurray!! Hurray!!

...although this will make identifying her in photographs a little trickier. I always used her cannula stickers as the identifier :)

Thanks for the braces, Mr. Binky

Alex went to his first dentist appointment yesterday. Dr. Lexie's Dad showed me where we need to do a better job brushing his teeth (back molars, in case you were curious). He also showed me the damage the pacifier did to his teeth. His overbite is pretty bad and will eventually need braces to correct. Oh -and for now his front teeth are fine and can stay around. He smacked them pretty hard a couple months ago and I was worried they'd need to be yanked. Overall though, a successful visit. Alex didn't freak out and they aren't any cavities. Dr. Lexie's Dad also gave each girl a toothbrush since they're both now rocking two teeth.

I started my thyroid replacement meds today. Pop quiz... What causes fatigue, lethargy, difficulty losing weight, difficulty concentrating, forgetfulness, and moodiness? If you answered, "Having twins, you idiot!" You'd be correct.

If you add a follow-up question, "...and also cold intolerance, light sensitivity, joint pain, lightheadedness, vertigo, and a wonky menstrual cycle?" Well, then, one blood test later, you get a whole new answer called hypothyroidism. It's not a big deal. Seems like everyone has it and it least it explains some of the symptoms I've been having. I was pretty careful not to talk about how tired I've been because it seemed stupid when there was a clear reason (make that two clear reasons) for me feeling so run down. I had even justified the vertigo and lightheadedness as happening because I'm on the floor all the time with the girl and standing up was hard on me. And that light sensitivity? Clearly it's because I'm inside most of the time so of course the sunlight will bother me. The joint pain? Well, I am picking up babies all day. ...and so on. Anyway, at least I have an explanation and there's treatment.

Baby girl updates - They've been enjoying sweet potatoes and applesauce quite a bit. They get furious when you have to stop for a moment to feed the other one. It's pretty funny and I hear circus music plying in the background as I frantically try to shovel food into each of their mouths at a rate that is acceptable to them. I'm going to start making my baby food soon. I made an attempt with Alex to make his baby food and had to give up because of lack of freezer storage. Now that we have another freezer at the house I'm going to give it a try again. Feeding these girls is just really, really expensive. We're spending about $100 a week on formula and I need to cut some costs somewhere. And since I can operate a blender, I figured baby food was a good place to start.

The PT came by for their weekly visit on Tuesday. She's happy with their progress and she was especially happy to see that Evelyn's neck issues finally look like they are starting to resolve. Clara is starting to bring toys together in both hands. Evelyn is starting to kick off on her feet (a pre-crawling movement). Both girls are starting to roll from back to front.

That's it for now. I just got a new camera and I have some new photos to post but it'll be a few days before I can motivate to load the software.

Take care,
Kris

I love you...

Alex told me he loved loved me last night. When I asked him, "How much?" he said, "I love you this huge until forever!"

I'm normally not the kind of mom to go on and on about what I perceive to be cute things my kid says, but I couldn't resist. It melted my cold, black heart :)

Take care,
Kris

Farewell to the gummy smiles

Evelyn and Clara both cut their first teeth today! Clara's is bottom left, Evelyn's is bottom right. How cute is that?? And it explains the less than spectacular moods they've been demonstrating.

Moving on. I subscribe to a Twin magazine that is mostly not worth the money. It tends to describe the obvious or is meant for new parents. For example, is it really "twin" related that I need to put sunscreen on my kids? As much as it's not very informative, it does provide at least one or two nuggets each issue that will keep me subscribing. Last month I found out that on birthdays there needs to be two cakes and two rounds of "Happy Birthday." Seems obvious now, but I never thought about it. This month I learned that some states are trying to pass laws that force twins to be separated in schools. I have mixed feeling about this - it's easy for me to say right now that I want them to be separated, but I can see how, in a few years, it'll be evident how detrimental separating them may be. So stay tuned to your local laws. This month's issues also listed "You know you have multiples if..." A sampling (with my chattering comments, free of charge in red):

• In the case of an unfortunate collision involving your stroller and a passing Hummer, the stroller takes the win. Seriously, the twin stroller is a pain in the ass. I will say, however, that people have been incredibly kind. I have not opened a door for myself in months. Even a 10 or 11 year old girl once held a door open for me.
• "You've got your hands full." Those are the five words most commonly uttered to you by the general public. The other comment I hear all the time is, "Are they twins?" No, they are triplets, have you seen the other one?/No, I just had them really close together. Either of these in-my-head retorts are followed by "...you idiot." Or my personal favorite is when people just exclaim, "Twins!" Yes, I am aware I have twins. But actually these comments don't bother me because they are at least addressed to me. What bothers me is when people comment on my twins (Oh, she has two babies/She has her hands full/Look, she has twins) as though I can't hear. I don't like feeling like a freak show. At least have the decency to not talk about me right in front of me.
• Your version of the ultra-luxurious "me time" involves a toothbrush, toothpaste, and two minutes by a sink. I actually have to share these two minutes with Alex so, technically, I can't even relate to this one.
• The gallery of people who see it fit to inform you that your twins are twice the work, twice the headache, and twice the expense will never understand the truth: your twins are twice the joy, twice the laughter, and exponentially priceless. On that note...

Take care,

Kris

6 month well baby

A couple congratulations are in order - First, to Mama Wannabe on the heartbeat of little peanut!!! Second, to the new arrival of Kellen and Taylor!

Evelyn and Clara had their 6 month visit today with Dr. Bud. Everything looks good. Evelyn's head is still gigantic, but he said it looks more proportionate to the rest of her body. For now, we'll still just watch without any planned follow-up. He also said we can branch out beyond rice cereal, let them sleep all 11 hrs at night without eating if they're up for it, and take Evelyn off Prevacid (Clara is stuck on it until she's at least 1, per her pulmonologist). Waaaay better than the last visit. Here are the stats (all percentiles are chronological meaning that we're no longer age-adjusting for the prematurity):

Evelyn

Weight - 15 lbs 12 oz (45%)
Height - 25 3/4 in (45%)
Head - 44.7 cm (96%)....aka huge


Clara (now, percentile-wise, bigger than Alex was at 6 months)
Weight - 13 lbs 2 oz (9%)
Height - 24 1/2 in (10%)
Head - 43 cm (60%)

As I was making the next appointment I spoke with the lady who does the referrals. She just wanted to check in with the girls and ooh and ahh about how big they are, etc. The scheduler also said something like, "Wow! I can't believe they are already 6 months old!" It made me very aware that these little girls are not even a little bit anonymous in that office. I used to take Alex in and never get a glimmer of recognition from anyone. Now, with the girls, it's like walking into a bar and everyone shouts "Norm!" It's a little weird, but really nice to feel like the girls have a cheering section.

We're doing a pulse ox test this week to see if Clara can come completely off the oxygen. I'm fairly confident, but not nearly as much as the last couple tests we've had with her. I'm trying to prepare myself for the doctor saying that she needs to stay on for another month. Cross your fingers though!

And, finally, a Ripley update (in case you care). She's getting better. Her eye is definitely healing as evidenced by the fact that I can look at her without shuddering.

Take care,
Kris

Father's Day

I love my dad. He's been an incredible source of strength throughout my whole life and especially in the last year. Since last August, he's listened, asked questions, supported us when we've needed support, and loved us when we've needed love. It's hard for me to imagine someone being as good a dad as my dad, but I think Greg is ranking pretty high on the Dad List. This guy has been amazing. Imagine the stress he's been under this year...now imagine it while being married to me. Doesn't sound so easy, eh? I have to say that he's managed it incredibly and he's been such a good husband and such a great dad to Alex, Evelyn, and Clara (and Ripley - more on that later). He single parented while I was in the hospital. He's done way more than his share of taking care of the babies since their return. And he's done everything with an ease that shocks me. So to my dad, to Greg, and to all other dads - Happy Father's Day!

In other news - Ripley's little eye got really bad last night and started to bleed. I took her to the ER where the vet had, "never seen anything like it." She was concerned about the eyeball getting pushed too much and is worried about long term damage (i.e. blindness) because of the pressure and the dryness from not being able to close her eyelids. Greg took her to a veterinary ophthalmologist this morning who suggested continuing the massive amounts of antibiotics and waiting on the MRI to try to save some cost. He doesn't think it's cancer - the onset is a little too sudden. The question remains as to whether or not there is debris stuck in there somewhere. If there is, the antibiotics won't do much and we'll have to prepare (in the vet's words "emotionally" and "financially") for risky, specialized surgery to remove debris. Fun for us. We also found out that Ripley has minor cataracts in both eyes and a detached retina in her left eye causing a blind spot. He doesn't think any of this is related to the recent eyeball gooiness. I changed my mind about posting photos of the nastiness....they're all the way at the bottom, so don't scroll all the way down if you don't want to see it :)

Okay, a few more photos of the past week. Enjoy! Well, you probably won't enjoy the photos of Ripley. Sorry.

Father's Day trip to the zoo

Alex is now into flossing his teeth.

The girls going on a walk with me (Evelyn left, Clara right)

Alex, babies, and I had a picnic lunch. He looks like he's on vacation in the Bahamas.

***************Ripley photos*****************