Tuesday, June 19, 2012

We are Heading Out

After 13 incredible years in the rocky mountains, the levi family is picking up and heading back east. While our move is mostly motivated by Zoe, who fares much better at sea level, we couldn't't be happier about being closer to family and old friends. So, back east, here we come! It's bittersweet for sure, but we could not feel any luckier about leaving the mountains with two of the most amazing gems in the whole world! As for the girls health, we're also fully cognizant of how lucky we are in that department too. Sadie and Zoe are both amazing (to us at least).  They are happy and funny and way ahead of their years in many things, including their sense of humor.   They're also as sweet as can be and love each other to pieces.  Zoe is still on the feeding tube because she just doesn't like to eat or swallow, but we're hoping the move to sea level will really help with that. She seems to be more comfortable and content when she's not at 7,000 feet and concentrating on breathing. She's 24 pounds and growing! To add to her great news, she had her annual echo last week and we are so happy to report that she has no signs of pulmonary hypertension and her heart is totally regular. How she accomplished that without half a diaphragm, only one lung at birth and spending 2+ years at 7,000 feet, we just can't explain! But we know we are so fortunate to have them both in our lives. Now if everyone else we know who dearly wants kids could finally bring them into the world, all would be right. We are keeping our fingers and toes crossed for that!




Wednesday, December 7, 2011


I know it's completely ridiculous that it has taken us this long to post an update, but life with toddler twins and a full time job is not easy! Regardless, the girls are doing great! They are both running and climbing and getting into everything they shouldn't. They absolutely love each other and have so much fun playing together. The other day the four of us went to the grocery store and Sadie and I went in a minute or two ahead of Zoe because she had fallen asleep in the car. As soon as the girls saw each other in the store, they screamed, giggled and ran to each other as if it had been weeks (not minutes) since they were last together.

While they are doing wonderfully developmentally, we have yet to be able to get Zoe off of her feeding tube and are considering moving to a lower elevation and participating a rapid wean program. She eats tiny amounts of food every day, most consistently yogurt and ice cream, but we have not gotten her to progress too much beyond that on the solid food front. She puts food in her mouth every day, but when she tries to swallow it, she gags and coughs and spits it back up. If anyone has any experience with tube weaning, please feel free to chime in.


Happy holidays everyone!

Friday, June 24, 2011

The girls are doing great! Zoe is just about off oxygen (knock on wood) except for when she's sleeping, and she is FINALLY walking! She is so proud of herself and we are quite proud of her too! She's still not really eating anything by mouth, but as with everything else (crawling, walking, talking, etc.) we are convinced that she will, just within her own time.


They are so cute together, they absolutely love playing together, and they (mostly Sadie) love giving each other spontaneous hugs. It melts our heart every single time.


Now that they are 20 months old, their personalities are as distinct as ever. Sadie has SO much energy, it is no surprise to us that she busted out of her water bag and 27.5 weeks! She goes a mile a minute, and she is incredibly strong. But she is also as sweet as can be, and she absolutely loves her little sister, who she affectionately calls, "Ba!" She is quite the little comedian and actor, she has a really rich vocbulary (opposite, kangaroo, and hippo, just to name a few) and whenever she sees bare feet in books, she loves to say tickle tickle tickle and scratch the page.

Zoe is a little more mellow. She loves, loves, loves, to give mommy, daddy, and her nanny super strong hugs. She loves to be cuddled and snuggled and she seriously wouldn't hurt a flea. She very sensitive and spends lots of time observing. Her vocabulary is pretty extensive too. While she says most things her sister says, she is a little behind in the articulation department, but the way she loves to say "good girl," OMG, few things are cuter.

We are as crazy as ever running around after them, but loving every second of it--especially given the fact that things are so much better than they were this time last year (thanks to Zoe's feeding tube). And minus that tube and Zoe's lingering feeding issues, we really are starting to feel like we just have two normal, adorable, amazing little babies. Lucky, lucky us!


Wednesday, March 9, 2011

Vegas 2011








Everyone is doing great! The girls are both mobile--Zoe is finally crawling and Sadie is running everywhere. They both say hi, bye, dog, ball, mom, dad, all done and a small host of other one syllable words, and they sign much more than they talk. For example, they sign please, thank you, sorry, they kiss good bye, they sign eat, more, outside, basically, they sign about half of the signs they watch on baby signing time.

We did find out some mildly disturbing news for Zoe. While her pulmonary hypertension has resolved (yay!) and her heart is in great shape, her right lung only has two lobes, as opposed to three, so her left lung is over compensating. We've got to keep a close eye on this and make sure she doesn't get sick because it's really important for her lungs not to have any more stress. We also have to make sure we keep an eye on her back b/c she could potentially develop scoliosis from having a larger left lung. So . . . we're really trying to keep her germ free as much as possible (thank G-d for our awesome nanny) and keep her healthy.


Zoe also does eat by mouth yet. She is just petrified that food is going to make her vomit (because of her severe reflux) so she won't swallow any solid food. She has, however started tasting a lot more foods and she loves to drink water from her sippy cup, so that's a huge plus for us.

Sadie, on the other hand, loves to eat everything, so we often find Zoe sneaking Sadie whatever is on her highchair :). Saide is also very verbal and full of emotion. She knows what she wants and what she doesn't want and she loves to tell you about it. All in all, we feel very, very lucky every day.

Just recently we took the girls to Vegas for a lacrosse tournament and they were over the moon! They loved the hotel, the warm weather and all the attention. There are a few shots above, and here is a video of our little peanuts, who were absolutely CRAZY about their sleeping arrangements in the hotel!


video























Tuesday, December 21, 2010

year's end

As we come upon the new year, we are in awe of how much we have to be grateful for. Things were so incredibly different this time last year, and not a day goes by that we fail to remember just how lucky we are.

A little baby named Ava was recently born with a diaphragmatic hernia, just like Zoe. She fought so hard for 47 days, but her body was not able to adjust. I have thought of her parents every single day since Ava passed away, and I have had a very difficult time wrapping my brain around the fact that so many babies born with diaphragmatic hernias die. It absolutely sucks. There is no explanation for why some babies make it and some babies don't and while we are so lucky Zoe survived, it makes me sick to think of how many little ones don't. So, to you Ava. May you smile upon your parents every single day of their lives.

On a lighter note, which I, of course feel guilty about, our little ones are really coming along. It is so fun to watch them play together, laugh with each other, hold hands and give kisses. Of course they have their moments too--usually when Sadie has decided to push Zoe over or yank on her oxygen tube. But all in all, they are doing amazingly well.

BTW, Zoe needs oxygen intermittently. She has grown SO fast since getting her feeding tube, that her lungs have a little trouble keeping up. Some days she needs it all day, some days she doesn't, but the doctors really don't seem worried at all.

Sadie is 21 lbs, and Zoe is just shy of 19. They both say mama and dada and Sadie says dog, all done, papa, and she loves to sign. Zoe says ball and uh oh (they both love that one) and she is an amazing observer. She doesn't like to say new words until she knows she can get them just right, and you can really see her brain working before she says something new.

They love to play in the snow
and both of them will stop whatever they are doing to watch baby signing time!


Sadie is standing all by herself and she is going to walk any second. While Zoe likes to stand too, she still needs a little support and she is not yet crawling. Even with a nissen, our little one manages to throw up--often--so she has up until now hated being on her tummy. But since she's gotten over 18 pounds, she's really started tolerating her tummy time. We used to think she was going to be one of those kids who skips crawling b/c she LOVES to stand, but we've since changed our minds and I think her crawling is right around the corner.


Zoe still doesn't like to eat by mouth very much, but she had progressed a lot, and lets me get the spoon in her mostly closed mouth every feeding. She takes small amounts of yogurt and pureed foods and we are working her up to solids. Her sister on the other hand, eats everything, and we couldn't be happier that we have at least one baby who is very easy to feed.

THis was our first holiday season with everyone home from the hospital and we are so very, very grateful.



Happy holidays.





Thursday, October 7, 2010

Birthday Girls!

The girls turned one on Sunday. It is so hard to believe that they are already one year old!

We spent the weeks leading up to their birthday taking lots of walks and reminiscing--thinking back to when my water broke, when we were relegated to the hospital, and when we really didn't know if the girls were going to live . . . or not. It was hard to think back to that time, physically and emotionally, but we are so grateful to have that behind us.


We are also so grateful, every single day, to have our little munchkins with us, happy and, for the most part, amazingly healthy. We are acutely aware of just how lucky we are, and also acutely aware of the fact that so many parents have had to suffer a different outcome, either from prematurity or a diaphragmatic hernia or both. We really, really wish we could change that.

On a lighter note, here's a little rundown of the girls' actual birthday: They woke up in the a.m. to a few nicely wrapped presents:

Zoe found this whole idea very exciting:

Then we all went to the zoo, where the elephants, tigers and giraffes were all a very big hit!


Then we went home and had cupcakes:


Well, actually, Sadie had a cupcake, Zoe just played with hers. She's developed quite the oral aversion since her last surgery, so we are working very hard to get her to take food by mouth. As anyone who is a parent of a child with an oral aversion knows, this is a very long, difficult process, that just takes time. That being said, Zoe is doing better and better every day, and we are so proud of her.

After cupcakes we took another walk, then read the girls stories and put them to bed. It was, in the end, the most perfect day ever!

Happy Birthday Sadie and Zoe!
Love,
Mommy and Daddy




Monday, July 19, 2010

We made it through surgery, a brief stint in the ICU, and a few days in recovery. Baby Zoe is doing much, much better, keeping food down, taking in tons more fluid and . . . breathing on her own! That's right, the doctors took her off oxygen as soon as she recovered from surgery. And our little girl took right to all the changes. We'd say, from the looks of things, her appetite started to increase immediately.

She's home now, adjusting to her new tummy situation and learning to love food for the first time.

And it appears that her sister could not be happier to have her little buddy back by her side.