November 14, 2011
Hi Family and Friends-
It's been pretty crazy around here, but we wanted all our family and friends to meet:
Miss Clara Brooke Bushman.
Born 11.11.11 at 3:59 pm
6 lbs. 9 oz, 19.5 inches long
It's been a whirlwind since she's been born, but we're so glad she's here and doing well considering her circumstances. She has cute brown hair with a red tint (much like Troy's). She looks like a Bushman through and through. Some of her expressions look just like Jackson. We've also seen some faces that remind us of Aunt Ashley and Aunt Lexie, not to mention cousin Grace. :) She has the sweetest disposition and is very calm and cuddly. She makes this pouty face a lot that is simply adorable. Can't get enough of it!
For those of you who don't know, we found out a few hours after birth that Clara has Down Syndrome. She is still in the NICU, but is doing well considering. She's eating pretty well from a bottle, and we give the rest of her food via feeding tube. Lots of downs kids have struggles eating as their muscle tone is poor, but she's wanting to eat, and she does great sucking on a binkie, so those are good signs. She's on oxygen to help her heart and SpO2 levels (blood oxygen), but they've decreased it quite a bit. She'll likely be in the NICU at least a few more days. We'll then do another echocardiogram to check the progress on her heart. She'll likely require surgery to repair the large VSD (ventricular septal defect) in about 4-6 months. For you non-medical folk, this means there is a hole between the right and left ventricles of the heart and the blood is moving back and forth. We are told the hole is so large that it does not produce a murmur, which is why it went on undetected for so long. The good thing is, this defect is easily repaired and has a very high success rate post-op, more than 95%.
We have definitely felt the strength of your prayers. Please keep praying as we have a long road ahead of us. We are so grateful Heavenly Father decided to send this special spirit to our home.
We love you all, The Bushmans
November 16, 2011
Thank you so much for all your emails, calls, and texts. I thought this would be the best way to update everyone on how Clara is doing, since the hours seemed to be going by lots faster these days. Here is an update on our cute Clara.
I was discharged from the hospital yesterday and am home now. Clara is eating great and is almost up to her birth weight again. Last night she weighed 6 lbs. 8 oz. We feel really lucky as lots of down syndrome kids have struggles eating. Because she is eating so well, they took out her feeding tube today. They have also discontinued her IV. Right now her heart arrhythmia is the main concern as it seems to have gotten worse. (For you medical people, she is throwing PACs and PVCs and they are happening in runs now instead of just one every once in a while.) They did another EKG this morning and it is being sent to the pediatric cardiologist to see what he thinks. It's looking like little Clara will be in the NICU longer than I anticipated. The nurse last night guessed about another week. Definitely still not very bad, but since she was doing so well, we thought maybe she'd be able to come home sooner.
We so appreciate all the fasting and prayers that have been offered in our behalf. Thank you for your love and support. I'm sorry I haven't been able to answer every email and text individually. Know that all your words of encouragement have meant so much to us. We'll keep everyone updated.
Love, Brooke (and Troy, Jackson, and Clara)
P.S. I attached a couple pictures. Her jaundice had improved enough yesterday to take her off the bilirubin lights so we got to dress her in real clothes! Way, way too much fun. We think green might be her color. ;)
November 19, 2011
Side note: I wrote this email yesterday and had plans of sending it last night, but Jackson had a rough night last night, so the email was pushed to today. So when I say "Yesterday" below I'm actually talking about Thursday. We haven't seen Clara yet today. There was an emergency with another baby in her room and so they asked me to come back later to feed her. There were a lot of medical personnel in the room. I'm just grateful Clara is okay. The way that phone call began I thought OUR baby had had an emergency and I about had a heart attack driving down 67th Avenue. Luckily she is sleeping through all this chaos. Hopefully the other little guy will be okay too. Anyway, enough side notes... on to the update... (sorry this one is a little long, you can always skip down to the pictures if you don't have time to read a novel :)
Here is another quick update on Clara (who turned one week old today!) Yesterday she had been off of her oxygen for nearly 24 hours. We were so excited. But then her rates fell (she was hovering around 85% spO2) and they had to put it back on. :( They want her to stay off oxygen for at least 48 hours before being able to go home. We were a little disappointed that she was needing oxygen again. But it was a lot to ask for her to go the full 48 the first time! Poor girl just got tired. She just needs a little puff to keep her O2 levels where they should be. She is on room air (which means the same concentration of Oxygen that is in the air) and having that extra push for it to blow into her nose helps her breathe lots better. Troy talked to the neonatologist this morning. The new plan is to keep her through the weekend and reevaluate on Monday. They might send her home on oxygen. We'll see how that turns out. We think she'll be able to come home sometime next week. It's funny though, they've been saying she'll be able to come home in "about a week" for a week now. There are a lot of factors, and I know the doctors are trying to avoid getting our hopes up. So for now, we'll just be patient.
The good news is she is eating like a champ! They let her eat as much as she wants now and I can try to nurse as many times a day as I'd like too. She does pretty well nursing which is so exciting. But she gets tired and prefers the bottle at this point. She can suck those bottles down crazy fast. She is a hungry girl! We heard from the cardiologist yesterday. He said we didn't need to worry about the arrhythmia, they think that will go away. They will do another echo sometime before she is discharged. I'm including some more pictures. She is looking so cute and gaining weight everyday. We just love her to death and can't wait for her to come home.
I got my staples out yesterday. Hallelujah to that. If you ever have the choice-- choose stitches over staples. I'm feeling pretty good. I've healed lots faster this time around, which is such a blessing. I'm just trying to not overdo it. Troy has been super busy trying to get paperwork together for school. Anyone agree that the 3rd year of medical school has way too much busy work? My mom is taking great care of us with her all her help cooking, doing laundry, and running errands. She's amazing. And Jackson keeps talking about how his "baby is at the hospital." He calls her "baby cwara" it's the cutest thing ever. My mom showed him some pictures of Clara and he said, "That's my baby!" We're so excited for him to be able to see and hold her. He's been lucky to play at several friends houses this week, which he just loves. He is quite the social butterfly.
So that's the update. Thank you so much for all your prayers, calls, texts, visits, and emails. We feel so much support and love. We are blessed to have such great family and friends. There's no way we could make it through all this without all your support.
Love,
Troy, Brooke, Jackson and Clara
P.S. The first three pictures are from the day she was off oxygen. She was looking awesome without all those cords and wires everywhere. The last two are of her in a new outfit, because I couldn't resist and her cute headband. She already doesn't like headbands :( She thrashes her head back and forth and whines until I take them off. So sad right? I'm going to try to re-train her later. :)
November 26, 2011
This has been a long week. Monday and Tuesday were pretty frustrating and disappointing. I learned the hard way that in order for things to get moving for Clara, I needed to take the initiative myself. After calling the cardiologist, (Whom I LOVE by the way! What doctor gives you his cell phone number... on his day off?! Amazing.) and talking to the neonatalogist we all agreed it would be okay if Clara came home on oxygen. Her last echocardiogram showed decreased pulmonary hypertension and a left to right shunt of blood through her VSD. (This means that some blood is being oxygenated twice. Not very efficient, but much better than a right to left shunt which would cause un-oxygenated blood to be pumped to the body.) This was very good news.
The cardiologist (aka, Dr. Puntel, my new best friend ;) jk...) said we should count on her being on oxygen for 2-3 months. We'll wean her as needed. She barely needs it. She is currently on 1/16 of a liter and sating between 94 and 98 most of the time. (sorry, I'm getting into lots of nursing jargon.) It's mostly when she's asleep that she dips down and needs it.
So yesterday after waiting all day to get some equipment from the home health company, we brought Clara home! She had her first venture into the outside world and made it home at about 7:30 last night. We were so excited to put her in the car seat and drive her home. It totally felt like Christmas! :) And for the first time it felt like we'd really had a new baby. Last night during our 2 a.m. feeding, I was barely awake, but having so much fun. We are so glad she is home.
Jackson already has been a very helpful brother. He likes to give Clara her binkie and her bottle. He also offered his "blue Batman" to Clara this morning. This is one of his most favorite toys, so that was big ;) He told us today. "Baby Clara home, not sick anymore!" And when he first saw her last night he noticed the oxygen stickers on her face and said that she had "owies" and then said, "My baby sister!" and then tickled her little head. Funny reaction. He was a little more interested in the toy Clara brought home from the hospital to give to him. Another Buzz toy! (It's actually from Gina Johnson from the Sharing Down Organization here in Arizona, but she instructed us to present it as a gift from Clara.)
So there you are. We're all home together. It's the greatest feeling ever. And so nice not to be running back and forth to the hospital all day. Now comes the trick of keeping her nice and healthy so she can gain weight until we know more about potential heart surgery. We have several doctor appointments coming up this week so we'll see what the official rules are, but I'm guessing we won't be out and about for a while. But that's okay, I'm just glad she's home!
Thanks for all your love and support. We truly appreciate all your kind words. We are blessed with such wonderful family and friends.
Love, Brooke, Troy, Jackson, and Clara
P.S. Of course pictures are included. She has been sporting some pretty cute outfits as of late. You can also see her all bundled up for her first car ride and upon arriving home, the first picture of Jackson and Clara together in two whole weeks!




