Clara, One Month Old!

This was supposed to be a post in honor of Clara's one-month birthday. That came and went and now little Clara is 5 weeks old, which in newborn terms is significantly older than 4 weeks... oh well. Better late than never.

I haven't had a chance to sit down and really write about our little girl. I know lots of moms say this, but Clara really is the best baby. She is so sweet and has this mild little cry. When she's upset, she lets out one little yelp to let you know she needs attention. Once you pick her up, she's happy as a clam.

Clara sleeps like an angel. Like literally. When Clara came home from the hospital, she was on a four hour schedule for feedings. It has been heaven. The pediatrician said we can let her go six hours at night between feedings. (I was delighted at this news.) And she really does go six hours. In fact, most nights, I wake her up to eat. It's important for her to eat often so she'll continue to gain weight. Otherwise I think she may go seven hours. Yes, and she's 5 weeks old. Who is this baby?!

A couple weeks ago at Clara's cardiology appointment I was visiting with the echo tech. He was doing her echocardiogram and I was telling him what a good baby Clara is. He said, "Way better than your son, huh?" I said, "Yes, actually." (We sure love Jackson to death, but he ate every 1.5 to 2 hours and had quite the strong lungs.) The echo tech, Gary is his name-- I think we're going to be great friends ;)-- said, "Every one with a Down Syndrome baby says that." He would know, as he's done pediatric echos for twenty years now. He said his Down Syndrome patients are the sweetest and most loving. That's interesting to me. What a blessing that a child with so many physical challenges is given a sweet temperament. It's certainly true with Clara.

Clara has the cutest little personality too. When she gets irritated while trying to sleep, she'll put her hands up as if she's saying, "Enough mom." One of these days I'll get it on camera. But, picture a "talk to the hand" like pose. So cute.

So far, Clara isn't the hugest fan of her handbands and bows. I told her she's just going to have to get used to it. I've been waiting for this day! ;) She has been pretty patient with my request. I think she'll get used to it eventually.

She is the sweetest little thing. And I find myself just staring at her from time to time. I'm enjoying the newborn phase lots more this time around. Now that I'm on baby #2, I know how quickly this stage passes. The fact that I'm getting lots of sleep is helping too. :) We feel very lucky to have this little gal in our home. It wouldn't feel complete without her.

So here are some one-month pictures. The faster I get these up, the faster I can add more right? (Side note: Clara had her newborn photo shoot today with this lovely girl: Bri Holloway I just can't wait to see them!! We have my sister-in-law Suz, as well as Bri, to thank for that. But more on that later.)

Clara in her "coccoon" knitted by my Great Aunt Dorothy. Don't mind the red splotchy face. We had just removed the skin barrier on her cheeks that helped hold the oxygen tube. Clara's skin is very sensitive and stays red for a loooong time.

Clara enjoying her swing... don't mind the baby acne as well. Luckily the 1/2% hydrocortisone cream is working wonders on that.

 
Clara NOT enjoying her bath. This is the classic pouty face Clara does. In this shot it's sort of combined with the "Bushman scowl" as I call it. I don't know why, but when our kids frown, they look a lot like Troy. Which is funny, because it's not like Troy is frowning all the time. Crazy genetics!

Clara dressed up for Church last Sunday... even though we didn't go. It was super fun to put her in a dress :)

And for a medical update on Clara. We are now seeing the Cardiologist every two weeks for checkups. These are long appointments. Like four hours if you include travel time. Dr. Puntel has been fitting us in on his lunch hour. He is amazing. Every other appointment Clara gets an echocardiogram. The last one showed she actually has an atrial septal defect (ASD) in addition to the VSD. So two holes. Dr. Puntel thinks the ASD will close on its own. All babies actually have this hole in utero.

At this point, Dr. Puntel thinks the VSD will require surgery. The plan is to wait until Clara is 4-6 months old to do it. The idea is for to gain as much weight as possible. And then by six months surgery will be necessary to avoid permanent changes to the lungs caused by the shunting of blood in her heart. We are still praying the hole will close on its own. It's a straight-forward surgery as far as open heart surgeries go. But the thought of handing over my baby in the O.R. waiting room kind of makes me sick. We will see if there is any improvement at her next echo in two weeks.

Clara has now been off oxygen for two weeks! We are so excited she is doing so well. After our first appointment with the cardiologist, he requested we start to wean her immediately since her levels were so high. So we did and she did great. Now we keep the monitor on most of the time to see how she's doing. Her oxygen saturation is between 95-100% so things are looking good! We'll keep monitoring her for a while. Dr. Puntel wants to see how she does when she gets a cold. Which unfortunately, might be coming on right now. :(

She is still eating well and gaining weight, for which we are very grateful. However, at this last appointment, Dr. Puntel decided to up her caloric intake. So now we have a "recipe" for mixing formula with breast milk to make it more fattening. :) We still try to breastfeed during the day, but she mainly drinks from a bottle.

We have purchased a baby scale so we can monitor Clara's weight at home. We weigh her every week and the goal is for her to gain 4-5 ounces each week. I have a little "medical journal" of sorts that I keep for Clara and write down info from each appointment we go to. It has actually been quite handy since we've been to so many appointments and heard so much information. I record her weight there.

In the coming weeks we will meet with a geneticist, a home care nurse, and a physical therapist in addition to more pediatric and cardiology appointments. The state of Arizona certainly provides a lot of services for children with disabilities. Such a blessing! I really feel like Clara is going to be well taken care of here. Once I get all the departments and organizations she qualifies for straight, we'll be set! :)

Christmas Preparations

We decided to stay in Arizona for Christmas. For us the risks of a germy airplane and decreased insurance coverage in Utah were too much. I was sad at first. But, we couldn't bare for our little Clara to get sick, and especially so far from home and from the doctors that have been caring for her.

I know we'll miss our family. But, it will be fun to start some traditions as a family. We have some fun plans for next week, but our first item of business to prepare for Christmas was to decorate our tree. We did this a couple Sundays ago and it was so much fun.

First off, let me preface that our Christmas tree is kind of ghetto. It's on the short side, and you can basically see right through it. We got it for as a wedding present four years ago and it has served us well. So have the decorations which are hand-me-downs from my mom. (Thanks Mom!)

This was Jackson's first time decorating our tree. He was completely thrilled. He thought putting the decorations on was the greatest idea ever. He called all the bells "eggs." I think he is confused with Easter... ha! And he put all the "eggs" on around the bottom of the tree, in basically the same area. He had a blast. After the lights and beads were up, we started moving some of the "eggs" to make the tree more uniform. Again, Jackson thought this was a great idea, so his line of bells just moved further up the tree. Too funny. Jackson's favorite ornament was the silver BYU one we got from Matt and Suz several years ago. When Jackson saw it he said, "BYU cougars ball!" To him, the tree couldn't have been more perfect.

Clara watched from her bouncy chair. It was hard for her to rest with such an excited big brother in the house. But she liked looking at all those sparkling lights. And with some Christmas tunes playing and all that excitement in the air, it was pretty magical. (Even though in this picture above, Jackson doesn't look affected by the magic, it was there, I promise. :)

Thus far, Jackson has been pretty good with the tree. He has been calling it "My kiss-mus tee!" He loves to plug the lights in. I tell him, "It's pretty, huh?" and he replies, "Yeah, it's pretty, huh mom." I expected it to have fallen down by now and it hasn't. Although, Batman has done some serious climbing on our little red beads. Jackson and Batman play by the tree almost daily. It's pretty cute.

And because we were setting up our Christmas tree, we must have brought on some "Arizona snow" as it has rained every day for two weeks. That's an exaggeration, but it feels true. We've been cooped up around here. So one night, Jackson and Troy went out on our front porch and played in the rain. Something funny about desert tile roofs? They don't have rain gutters. So when it rains, everything gets soaked. Including Jackson and Troy :)

And it wouldn't be Christmas in Arizona if our lawn wasn't green and perfectly manicured. Troy has done a very nice job. It looks great!

And have I mentioned that I really love this guy: 

Troy is such a great Dad. I feel very lucky. He sets aside time to spend with Jackson and Clara each day, no matter how busy he is. He has a special connection with both of our children. And I love that he really looks forward to playing with them when he gets home. He's a pretty cool guy. We'll keep him! :)

And after only 4 weeks of life, Troy has taught Clara to avoid my camera too. Ridiculous! (But quite the funny picture. ;)

Well that turned into quite the random post there at the end. Long story short, we are excited for Christmas!

My Mom

My mom came for three whole weeks when Clara was born. Can you believe that? That is a long time to be away from home. The original plan was for Clara to be born on the 15th, and my mom to stay until after Thanksgiving. Alas, Clara decided to come on the 11th and then didn't leave the hospital until the 25th. I was so so grateful when my mom offered to stay for another week while I went to various doctor appointments and got things organized.

While she was here, she cooked for us every night. She went to the grocery store. She took Jackson to the park or on a walk almost everyday. She slept with me at the hospital a few different nights so that Troy could sleep and I wouldn't be left alone. (I wish I had a picture of that. It brought back lots of memories of of my leg surgeries. Just me and mom hanging out in a hospital room.) She participated in our nightly hide-and-seek game with JT. She lifted Jackson in and out of his crib and car seat for me. She helped me decorate our house for Christmas. She baked lots of pineapple cookies and banana bread. She was amazing. And if that wasn't enough, she cleaned our entire house before she left. Bathrooms and tile floors included. The house was spotless.There is something about having your mom around. Moms make you feel like you are completely capable of anything you're up against. It made me feel braver when I was feeling very overwhelmed. Having her here made all the difference.

Alas, she had to go home eventually. I told her I wouldn't mind if she moved in. Ha! When Troy left to take her to the airport, I sat on the couch and cried. I am so grateful for the sacrifice she made to come. She had to rearrange a lot of things at home and at church to make it work. And my Dad and siblings had to take over a lot of her responsibilities while she was gone. So really I should thank all my family. Having mom here helped me keep my sanity through all the craziness. Thanks for all the help mom. Having you here meant more than you'll ever know.

Jackson and Clara

Thus far, Jackson has been a great big brother. He is fascinated by Clara. Everyone has been asking me if he likes her. The answer is yes, he likes her too much. He is up in her face most of the time. So far, he has been pretty soft though. We get into trouble when he tries to give her her binky, or when he "points" out her eyes (aka pokes them.) Perhaps the novelty will wear off and he'll be less amused about Clara later. But, we'll enjoy the mutual love while it lasts! :) I try to spend some quality time with Jackson each day and I think that is helping as well.

Jackson likes to talk to Clara in a high pitched voice. Ha ha. It makes me laugh thinking about it. I suppose he learned that from Troy and I. Jackson leans in very close to her face and says (in said high pitched voice) "Hi baby Cwara! Hi baby Cwara!" Then he will often turn to one of us and say "He's cute!" (We're still working on correct pronouns ;) He also really likes to give Clara his toys. He will say to me "Baby play with car okay mom?" Then he'll place his car on her chest so Clara can have some time playing with it. A few minutes later he'll say, "Have car back." and swipe it back. So funny. He has been pretty generous sharing his toys with his sister. So far, she has been privileged to play with Jackson's blue football, his Batman toy, and his Lightning McQueen which are some of Jackson's most favorite toys.

Jackson also likes to help me feed Clara her bottle as seen below. "I help mom. I help." He'll hold the bottle for a few seconds before racing off to play, but it's nice that he wants to be so helpful. (Especially while looking so studly in his PJs and sunglasses ;) Jackson also likes to give baby Clara a kiss now and again. We try to encourage the kisses to be on her head to avoid germ transmission. Again, thus far, Jackson has been pretty good at that too. We're proud of the little guy. Troy keeps telling Jackson, "You are good at being a big brother. Are you sure you haven't done this before?" ;) My friends Jesica Fowler and Angel Day gave me a book called, "I'm a big brother now!" It is fantastic. It talks about the things you do when you're a big brother. Jackson loves it, and I feel like it has helped him be even more excited about his new role. (there is also a big sister book available for anyone who is interested, I would highly recommend it!) Jackson now likes to point out that his friends Colby and Colt have baby brothers, but he has a baby sister. He talks about it all the time. It's pretty cute.

This next succession of pictures kills me. Jackson likes to hold Clara, but for very short periods of time. The succession kind of shows his feelings perfectly.

Excited.

Done.

 Way over it. His face is too funny.

And I have to end with one funny story. Sometime during that first week home, my mom and I were in the kitchen fixing dinner. Jackson was watching a show in the living room. Clara was in the bouncy seat. Usually when Jackson is awake I make sure she is buckled securely as I don't trust the little man just yet. However, she had been unbuckled while Jackson was taking his nap. I got busy and forgot this fact. Suddenly Jackson came running into the kitchen and said, "Mom, Baby Clara okay!" I immediately assumed she was on the floor. I ran in to find her sleeping soundly in the bouncy chair. The cushions from our couch were on the floor... but I'm not sure what happened there. Ha ha. Perhaps Jackson accidentally hit her with one of the cushions? When I asked him if that was what happened he shrugged his shoulders and said, "Mom, baby okay." Like, don't even worry about it mom, she's fine. Ha ha! I've learned my lesson though, buckles at all times. And I'm more aware of where both children are too. You never know when Jackson might want to give Clara the adventure of her life. :)

Coming Home

Little Clara was discharged from the NICU on Friday, November 25th. We were, of course, completely thrilled. I wrote about that at the end of the NICU post from last week. This is the last picture we took before walking Clara out to the car. That was beyond exciting.

This is what she looked like all bundled up to come home. It was Clara's first time breathing outside air, so she needed lots of layers ;)

And this is the first picture of Jackson and Clara together in two whole weeks. He was more interested in the toy Clara brought him than in getting his picture taken.

Almost as soon as we arrived home, I was scared and a little overwhelmed with the task of taking care of her. Having the oxygen and sat probe monitor was both comforting and frustrating. Comforting, because we knew what her oxygen saturation was at all times, and frustrating, because she was attached to all these lovely cords. I wish I had taken a picture of our bedroom before Troy rearranged and organized it. It looked and sounded much like a hospital room, with machinery and cables running everywhere. It was a tripping hazard at all times. Which is bad, because those little cables were attached to Clara and she would get a nice jerk if you inadvertently tripped over said cables. :(  Luckily, there were lots of hands around to help redirect cables, hold Clara, entertain Jackson, cook, clean, etc. We were well taken care of. 

That first day home (Saturday November 26th) Jackson was of course fascinated with all of Clara fancy equipment. There is no shortage of buttons on these contraptions, which is the appeal to the little man I suppose. Jackson learned how to turn off Clara's oxygen after about ten minutes of hanging around the concentrator, which is when he got brave enough to start poking at the buttons. I had the idea to explain that this was Clara's medicine and he shouldn't touch it. That was inspired. The wording did the trick, (what a blessing!) for the most part. What I failed to notice though, is that Jackson adjusted the flow meter at the same time he turned off the concentrator. The flow meter adjusts the rate of oxygen being delivered. I put the flow meter out of reach, and I swear I checked that the rate was in the right place, 1/16th of a liter. When Troy returned home from golfing several hours later, he told me the flow meter was completely turned off. Whoops. The good news is, Clara was off oxygen for four hours and her sats stayed up. The bad news is, how was I going to explain the good news to any doctors without looking like a complete idiot? We learned later that day, that if you tried to adjust the meter below 1/16th at all, it would eventually fall out, turning the rate to zero. We were trying to move to 1/32nd of a liter because she was doing so well on 1/16th, but it didn't work. The concentrator is still running, so you think everything is working great, but really your daughter isn't getting any oxygen at all. Lovely. So we kept little Clara at 1/16th until we met with the Cardiologist, Dr. Puntel,  later in the week.

Our first office visit with Dr. Puntel was on Nov. 30th. I was gone for about 4 hours. Phoenix Children's is about forty minutes away, plus they did an EKG and an Echo while I was there. So it was a long process. Thank heavens my mom stayed so I had someone to watch Jackson. Dr. Puntel was booked through January (he was totally squeezing us in during his lunch break), so there was no choosing our appointment time. The echo showed no change in the size of her VSD (hole in the ventricles). Dr. Puntel guessed the hole would require surgical repair since it hadn't closed over at all on its own. The echo also showed a small ASD (hole in the atria.) This hole is open in the womb and usually closes upon birth. It is not entirely uncommon for babies to have a small ASD for a little while after birth. Dr. Puntel thinks the ASD will close by itself. The fact that Clara was gaining weight and eating so well and so quickly leads him to believe we'll be able to wait until she is 6 or 7 months old to do the surgery. (Some heart kids may take two hours to eat two ounces. Clara finishes up to 4 oz. in about 15 minutes. So we are lucky she is doing so well.) They want her to gain as much weight as possible before the repair. The plan is to watch her weight gain, her feeding speed, and how easily she gets tired and judge from that how long she can wait for surgery. If signs of decline appear, which could mean early stages of heart failure, we'll just go ahead and do the surgery early. 

Another way we have been blessed is that Clara's heart defect is an easy fix. The surgery is pretty straight forward and has about a 95% success rate. It's one of the easiest defects to repair surgically. A lot of Down Syndrome kids have another defect called "Atrioventricular Septal Defect" or "AV Canal" which is a hole that affects both the atria and the ventricles and in some cases all four chambers at once and is much more difficult to fix. 60 % of Downs kids have this sort of defect, whereas only 20% have defects like Clara's. With all of that said, we are still hoping and praying that Clara's hole will close on its own. I know the statistics are in our favor as far as success rate. I know it's an easy repair. I know we would be fine if she ends up needing surgery. But, right now, the thought of handing my baby over in the waiting room to have open heart surgery makes me sick. They would break her sternum and paralyze her heart and everything. Yes, it's an easy repair as far as heart surgery goes, but it's still an intense surgery. So we continue to pray and fast for a miracle. I know Heavenly Father has the power to fix this. We just have to wait and see if it is His will. We will have another echo after Christmas, and I'm hoping it shows signs of improvement.

I could probably write a whole post about this, but a few sentences will have to suffice for now. Troy and Clara have a special connection. When she was in the NICU, I would be feeding her and she'd be completely asleep and not interested in eating. Troy would walk in and she would immediately wake up and be so alert. Like, she'd been waiting for Daddy. It was pretty cute. One morning when Troy was with her, he was talking to one of the doctors and he laughed. He glanced down and she totally smiled when she heard him laugh, as if she recognized it. So sweet. I know they say babies this small can't smile, but I feel like she does smile more than the average newborn. She is just so sweet. And she really is a Daddy's girl. She loves hanging with her Dad.

My Dad, sisters, and brother left the Sunday after Thanksgiving (the 27th). It was so sad to see them go. We loved being able to visit and spend time with them. I'm so glad they all got to meet Clara and hold her. I don't know when we'll be seeing them all again as we've decided to stay in Arizona for Christmas. (More on that later.)

Lindsay and Ashley with Clara.

The whole family. I wanted a picture with everyone together. (Yes, it is an awkward shot. Don't talk to Troy about it as he was in charge of setting up the camera and running back and forth with the timer. It took several tries, and he was not amused. Ha! But it works, so thanks babe.) We miss you guys already! Thanks for all your help and for driving the marathon drive to see us. We love you!

This is Clara at three weeks old. Her outfit is way too big, but isn't it the cutest? Clara looks good in green. We wanted to take a picture because she was off oxygen again. (There is more about that to come as well.) I have a more recent update on her overall condition coming soon! Yay for Clara being home. She is such a happy addition to our little home.