Hi friends. Long time, no see. Turns out I don't want to be a mommy blogger. SHOCKING! Ok, not so shocking. So, don't worry/I'm sorry, but I'm not going to post baby photos galore and tell you how amazing we all are doing (we are).
Turns out, though, also, that I still have things to say in this space. Am working through some stuff (aren't we always) and am realizing that maybe sharing will, like it was in the beginning, be good for me and for you (whoever you may be).
The longest shortest time, indeed. Sometimes it feels like I see them grow day to day, it happens so fast. The amount they've changed in two months is insane. Yet, when I think about being pregnant and them being brand new tiny newborns, it seems like a lifetime ago. Maybe the longest two months of my life!
Happy birthday, Lillian!
Happy birthday, Matilda!
We had a day today.
Some good:
Some not-so-good:
(Imagine this for almost an hour. The only thing that settled them was being held by me a certain way that is absolutely physically impossible to do with both at once. If I set one down, screams. We finally all settled when I laid down on a blanket with both of them and hushed them for a long time.)
It isn't always easy, but I wouldn't trade it for anything.
Those of you who are friends with me in real life and/or on Facebook will not find this surprising, but it feels wrong to move on with this blog without mentioning it. This is mostly copied from an email sent out to people close to us, which was modified into a shorter Facebook post.
We found out on Tuesday, August 11th, when she was 3.5 weeks old, that Matilda has Cystic Fibrosis. We had our first appointment at the clinic at Children's Hospital in Oakland two days later where we spent many hours finding out details and what this will mean for Matilda and for us. The team there is amazing and we feel like she will be well-taken care of.The tl;dr is that with the medication and treatments today, it's a chronic not fatal disease and there are new treatments being developed all the time. Basically it's likely to be a pain for us and probably for her but shouldn't prevent her from doing most things. It also means we will be extra crazy uptight parents about hand-washing, taking them places with a lot of people, and people not being around her when even a tiny bit sick, as a small cold can be disastrous in a child with CF.
There is tons of information that we'll spare you in this email. :)
If you are wanting to read more, we've been told again and again that the only valid source of info is the Cystic Fibrosis Foundation, as the changes are rapid and they keep very up-to-date. cff.org
Anyhow, this was a surprise because as part of the whole fertility extravaganza we were both genetically tested for CF mutations, and because our nephew Lex has CF, we were especially aware of the risk and were quite careful about this. I am a carrier, and Ian was told he was not. It turns out that they only test potential parents for about 20 mutations out of the 1800 that exist, and Ian carries an extremely rare mutation they don't check for routinely. It's most common among French Canadians and in the South of France. Luckily this mutation seems to be pretty mild, as far as mutations go.
Anyway, it was a huge shock, and we are still sort of processing it, but because of our nephew, we know more and are more prepared than most might be for such news. It's a lot less scary having seen someone close to us go through it - and to see that it sucks, but that he's growing up to be a great kid - causing as much trouble as he would have without CF.
So, that was the email we sent awhile ago. In the meantime, we've had some more appointments and started nightly treatments for Matilda. We've learned a lot and have a lot of hope. There are medicines in trial right now that would treat each of her mutations and we have no reason to believe that this won't be virtually cured during her childhood. Gene therapies are being worked on. Etc. It is, though, also scary and heartbreaking and it makes me cry when I think about it too much. We have our first full official clinic appointment tomorrow, after which they will be once a month for her first year, tapering down after that to once quarterly for the rest of her life (or until things change).
In the meantime, we are just doing AOK around here. Both girls are thriving. They are now about 8 and a half pounds, and we've graduated from weekly to monthly appts with the pediatrician. I love looking at their weight growth curve next to the 5th percentile growth curve. They started so far below it, and they are going to pass it any minute now (see below)! So, keeping them both happy and healthy is the goal, and we seem to be meeting it so far!
Soon after they were born, we sent an email off to our immediate families to tell them more about the names we've given our daughters. If you care for such details, here they are:
Lillian Ada -
Lillian was my paternal grandmother's name, so our Lillian is named in memory of her. She and I were extremely close until her death when I was in my early 20s.
Ada, other than just being a name we like, is a great song by The National.
It is also a reference to Ada Lovelace, the first computer programmer.
Matilda Eliot -
Matilda is named in memory of Ian's cousin Mathieu who was killed in a car accident in Peru in 2008. He was a passionate teacher and activist who found his calling in the indigenous community of Inza, Colombia.
Eliot, like Ada, is also really just a name we like. With Eliot, we think of Elliott Smith.
George Eliot, who wrote under the name George at a time when women were not very publishable.
My Great Uncle Ellie (his name wasn't short for Eliot, but the names are similar).
We also decided to give the girls Hebrew names, as is traditional in my family. They don't have any religious connotation, but I just felt like if someday they felt like doing something Jewish-y (a bat mitzvah, a ketubah at their wedding) they would have names to use given to them by us that had meaning for us as a family. I also wanted to make sure they weren't super religious names or names that meant, like, "my brother is awesome" or "my dad is rad" or anything else so patriarchal. So.....
Matilda's Hebrew name is Margalit Bracha (מרגלית ברכה). Margalit is in honor of Ian's paternal Grannie, Marjorie, who is still kickin' it at age 99! .
Bracha was the Hebrew name of my maternal Nannie, who died of breast cancer in 1980.
Lillian's Hebrew name is Nachal Rani (נחל רני). Nachal is a word for river in Hebrew, and it's a boy's name, but we don't care. River is in honor of Ian's Grand-maman, whose maiden name was Rivierre. (Ian's Mum's last name is River, as well). In addition, my parents met on a Kibbutz in Israel named Nachal Oz - which translates to strong or mighty river. Rani is in memory of Roger, Ian's late stepfather who had been a lifelong family friend.
Wow...so, a lot has happened since I updated, most notably that Lillian and Matilda arrived! They were born via C-Section on July 17th at 12:27 and 12:28 in the afternoon, just a day before 37 weeks. They were tiny - 4lbs 3oz of Lillian Ada McKellar and 4lbs 1oz of Matilda Eliot McKellar. They spent a few days in the NICU until they were able to maintain their own body temperatures, and we all came home on July 22nd.
Yesterday they turned 6 weeks old and weighed 7lbs 1oz (Lillian) and 7lbs 4oz (Matilda) which makes them the size of an average newborn, which feels huge to us even though they are teeny tiny for 6-week old girls. :)
There are some other things I'd like to post about - their birth story,their names, their health, how we are doing etc, but for now I'll leave you with some photos and the knowledge that we are all happy and cozy and adorable and well.
Honestly, there is little that stresses me out like getting different information from different people at different times about the same situation. So, I am anxiously awaiting a return call from a doctor because I was told today that I didn't need any more ultrasounds from the specialists (neonatologists) because everything looks awesome and babies can come at any time now. Then hours later get a call from the non-specialist regular OB office who had just read my report and wanted to make sure I had another ultrasound scheduled with the specialist for next week. Of course I missed the call and only heard the voicemail and it is after hours on a Friday. Grrrr. Argh. I have a feeling that whoever called just doesn't know enough of the whole story and whatever, but it is annoying. If I don't get a call back tonight, I guess we'll figure it out on Monday when I'm in there for my 2x a week Non-Stress Test etc apptment.
ANYHOW. Backtracking a bit, it has been a dramatic couple of weeks in twin pregnancy land. Just before 34 weeks my blood pressure started going up and up and up to the point that they almost admitted me right away. Instead I just got some steroid shots to help babies' lungs develop in case they had to come soon and was sent away to pee in a container for 24 hours (which I did while at a conference all day on Friday). Here is my doula, Amanda, holding all my pee supplies.
And my pee cooler as I carried it around the Moscone Center.
So, I brought the pee back and it turned out I did have protein in it (which is what they were looking for), but a small enough amount to not freak them out too much. Just enough that they said they would likely induce me at 37 weeks if nothing had happened sooner because of it = mild pre-eclampsia. At this point we are going to Labor & Delivery between 2 and 4 times a week and knowing that each time they might just keep me there. And the babies are going to be OK, but are little and would need to be in the NICU and I would have to deliver at not my hospital, but one with a better NICU etc. STRESS.
OK. So, twice a week non-stress tests with lots of blood pressure testing as well as blood & urine labs and all of a sudden, after all this, my blood pressure went back down to more acceptable levels of high and has remained there now for 2 weeks and all my labs are coming back as normal. Yesterday we asked the doctor and he doesn't think they'd need to induce at 37 weeks unless I start showing other signs of pre-eclampsia (like my blood pressure going higher again). Phew. We really weren't sure I was going to make it past 34 weeks for a minute there. But I did!
Of course with twins they won't let me go much past 38 weeks anyhow, so we're down to the wire either way.
Tomorrow I will be officially 36 weeks, which is sort of what we've been considering my "due date" since it is when twins come, on average. Here are some things we know:
1. The babies pass their Non-Stress Tests with flying colors consistently.
2. The babies have a lot of chest movement and are doing lots of practice breathing in there.
3. They still have plenty of fluid, each of them, in their sacs.
4. They get the hiccups a lot.
5. They also poke me from the inside a lot, making little hard bumps and sometimes making my whole stomach move around. This is from a couple of weeks ago. It's hard to catch on film and it is way crazier these days.
6. Baby A is appx 4lbs 10oz now (our goal was 4 lbs) and Baby B is appx 5lbs 2oz. They aren't going to be big! But that's still almost 10 lb of baby + 2 placentas going on in my gut right now.
7. Hence the size of my gut (this was 2 or 3 days ago....trust me when I say that it is noticeably bigger already).
8. They are both head down, which is excellent news. They are hanging out facing each other in there, which is neither useful or not, but is pretty cute.
9. I am sort of terrified of just "going into labor". I just have so no idea what to expect. I'm still hoping that this will happen (vs an induction).
10. Just got a call back from the doctor an he wants an ultrasound next week just to be overly cautious because of the possible pre-eclampsia, and because twins + discrepancy in their sizes. He was completely pleased with today's results, in particular the doppler (which shows blood flow from placenta to baby, which is the biggest concern with Baby A). He is just more cautious than my normal doctor (who is on vacation this week and who I TOTALLY trust and is the head of the department) or than the specialist, but sure... Better safe than sorry? I'm OK with that and at least it's an answer and I'm not just totally confused. So, I'l make an appt when the office opens again on Monday. Baby A is only in the 7th percentile for weight, so ya know. A wee one.
So, basically, twin pregnancy is no joke, and there's been a lot of drama lately, but I think we'll all be OK and they will be here soon.
Twice a week non-stress tests, due to marginal cord insertion (just have to make sure she continues to get enough blood through there), high blood pressure (not yet preeclampsia) and other such un-fun stuff. A lot of making sure everyone is doing OK in there and that I am doing OK out here. An abundance of scheduling appointments, reminiscent of the land of IVF that got us here in the first place.
(Babies were great and responsive, as of today, but keeping a close eye, so we can get them out of there if we need to, but I want them in there as long as possible.)
A big belly.
A full backseat.
A final week of work.
And planning to spend a weekend getting EVERYTHING ready, just in case.
