Eight Months

Time is FLYING! Is anyone else shocked that Claire is already eight months old?

Her growth has really taken off in the last two months, something that I attribute largely to her learning to breastfeed and being able to breastfeed her as much as she wanted. We haven't gotten much sleep but it's been worth it! Are you ready for her stats?!!!!

She is 25.6 inches (8th percentile) long and weighs 15lb 9 oz (15th percentile). She is wearing 3-6 month tops, 0-3 month bottoms, and she finally fits in newborn size shoes!

She is army crawling now and holds up her head like a champ. She sees something she wants and is determined to find a way to get it! She is just beginning to put weight through her arms but with her determination to get around, it shouldn't be long. She LOVES attention and comes alive as soon as she thinks someone might be heading her direction. She's a big talker, loves kisses, and has the best smiles.

After a month of searching for answers about her swallowing (visiting specialists and having testing), and some disappointing news about her lungs, we have switched back to pumping and bottles with a preemie nipple. Please pray that her lungs begin to heal and that she won't need as much medicine. She had gotten used to breast feeding so it has been a challenging week while she was adjusting but she is getting more used to our new (old) routine every day.

Here she is!!

And a little comparison:
Anna (3mo) and Claire (8mo) wearing the same outfit <3

Claire Always Gets There

Taking a week off for vacation means that we've been busy playing appointment catch up! Claire has had a busy, busy week.

We have been working with speech, pulmonology, GI, and even Claire's ENT to try to figure out a feeding plan that allows Claire to eat safely and protect her lungs. Everyone believes that she is still struggling with aspiration so we have decided to do another swallow study (her fourth!). This time we will spend longer trying to find more answers as to when (and hopefully why!) she is aspirating so that we can develop a plan to help protect (and hopefully begin to heal) her lungs, currently they are getting worse so it's important that we make some changes. Depending on what we find during the swallow study, she may have an endoscopy, laryngoscopy, and bronchoscopy done all at the same time so that we can gather as much information as possible. She had a scope done on Saturday to check her vocal cords and they looked good! For now, we have had to stop nursing her to sleep and during the night, so we have all been VERY tired this week as she gets used to the new routine, she has shed lots of tears. Because aspiration generally happens most often when babies are fatigued, this was just a small compromise so that we can continue to breastfeed, at least for now. She is still on twice/day breathing treatments for asthma.

Additionally, we saw the urologist on Monday because of Claire's recurring UTIs and abnormal renal ultrasounds. Truthfully, I thought at the most he would be concerned that she doesn't fully empty her bladder but he noticed when reviewing her ultrasounds with us that her kidneys appear echogenic and feels that it's absolutely necessary that Claire have a sedated procedure where they place an IV and inject an isotope into her bloodstream to see if her kidneys are damaged. We will be at Mary Bridge for an entire day (9am-3pm) for this procedure.

We also saw Claire's surgeon this week, she said Claire looks fantastic and we are able to completely STOP irrigations and dilations unless she doesn't pass stool for more than 24 hours, I'm sure you can imagine how excited we are for this news!!!

Finally, Claire has gained great weight, in fact, she has gained nearly too much! It is important that we "go easy" on Claire's heart and lungs because of all that they have been through. This means that we should make changes to her weight slowly. Since we've already stopped nursing during the night this week, we are hoping that is all of the changes that we need to make in order to slow down enough to make that happen.

Altogether Claire is doing very well! We get to celebrate how far she has come every single day, she is such an amazing little girl and she has come so far! It has been a little bit of a discouraging week, getting some unexpected news about her lungs and kidneys but everything pales in comparison to what she has already been through and we know that she will conquer these challenges too. I voiced some disappointment at one appointment this week with her trouble to swallow even pureés (because we're running out of ways that we can safely feed her) and her GI doc reminded me that "Claire always gets there!" and it's true, she always does. I am excited that we now have a plan to get answers so that we can help her thrive yet again!

As always friends, thank you for praying for us, for encouraging us, and for offering your support. The appointments, therapies, research, and added routines that, oftentimes, consume our day(s) could easily leave us feeling isolated but your little notes, comments, and messages of encouragement in the midst of it all remind us that we aren't alone and we can't thank you enough - nothing is too small and nothing goes unnoticed. What a story we will have to tell one day!!

She isn't too sure about putting weight through her arms just yet

She was sitting in her car seat but REALLY
wanted that piece of paper and she found a way
to get it! Mama cried. She's getting so big!

Wearing red for CHD Awareness Week and hamming it up
at her ENT appointment

Pretty Sunday dress

GI / Surgery Appointment

First teething cracker, she loved it!

The whole family wearing red to celebrate
FOUR months post OHS and CHD Awareness Week

"Hi, my name is Claire and I like to fold myself in half."

Have a great week friends!!!!  <3

Minnie Mouse!

We have made it home from Claire's first VACATION! It was also a family first and truly amazing.

A very special "Disney Angel" who follows Claire's blog and Facebook page reached out to us and arranged a special date with Minnie Mouse for the girls, gave us lots of tips about the parks, and even got us all souveniers. Claire qualified to have her stroller marked as a wheel chair AND they gave us a special pass so that she didn't have to be near crowds/germs. The way that it worked was, if we got to a ride and the line was 10 minutes long, we would still wait the 10 minutes but could wait without standing in the line - when we came back 10 minutes later, we would skip the line and hop right on. We used lots of hand sanitizer and antibacterial wipes but really, the parks were EMPTY which really helped keep the anxiety low, it was an amazing trip!

Claire watched her first Superbowl sitting outside on a restaurant patio and she even got to touch a dolphin. We truly were spoiled in so many ways!

Here are some pictures of her trip to Disneyland, Sea World, the beach, and the San Diego Zoo:

Waiting to board!

Kisses from Minnie Mouse

Our "Disney Angel," Tracy

Chip loved Claire too, he went out of his way to
say "hello" several times!  Behind Claire is Bart
(I think that was his name)... he also has Ds
and was so great with the kids. I love that anywhere we go,
we automatically have such a large "extended family" in the
Down syndrome community. Truly amazing people.

Sleepy Angel

Claire's first Minnie, she tried hard to sit up
so that she could get to her!

Yes, that's a real dolphin! She [Kallie] came to say "hello" to Claire <3.

Claire LOVES this book.

Sunglasses!

Tired on the plan ride home, it was a busy and FUN vacation.

We finally climbed into bed at 1:30 this morning (and Claire still woke up two more times after that) but we hit the ground running with a very full day. Claire has eight appointments this week [at least one every day except Sunday] to make up for the week we missed and to, hopefully, make some decisions and progress in regard to her eating/swallowing and breathing. We will update again after we get through them all.

As always, thank you for praying, supporting, and encouraging. We appreciate our "village" so, so very much!

Seven Months

Seriously, how is this girl already seven months old?!!

Claire is 14lbs 4oz (a gain of 3, yes THREE, pounds in ONE month!!) and 24.6 inches.  She is back ON the growth chart.  8th percentile for weight and 3rd for height. She is wearing both 0-3 month onesies and pants although she's just about ready to move up to 3-6mo onesies (3-6mo pants are still way too big).

It is so much fun watching her personality come out more and more. She adores people, loves to make everyone smile (and she's great at it!), and is MAD unless someone is paying attention to her at all times. She gets lots of attention because who can resist that smile? ;)

She is scooting forward by using her legs and sliding her face and shoulders along the ground. She has started to put weight through her arms while she is playing in tummy time! And she is getting closer and closer to being able to sit up every day. She figured out how to blow bubbles and spit, she's got drool for miles.

She started solid foods this month, she's had green beans, peas, and sweet potatoes so far. She loves them and can't get enough but she is having difficulty swallowing so we've made some adjustments. Like everything, she will get there in time!

Here she is ....

Breathing & Solid Foods

Claire's appointments are starting to add up again, last week she had speech therapy (for feeding), PT, pulmonology, and a renal ultrasound (plus she accompanied big brother to the pediatrician on one of her days "off") which made for a 5-day doctor week. She is such a trooper!

We have some new news to share ... the pulmonologist reviewed all of her recent chest X-rays and feels that, this far out from heart surgery, we should be seeing a huge improvement in her lungs, respiration rate, noisiness, and effort that she is needing to breathe. Her lungs are still hyper-inflated and the peri bronchial thickening is actually getting progressively worse which means that there is something else going on. He has diagnosed her with airway disease / asthma. We have started three new medications to try to help, one steroid that is daily and the other two that are based on her symptoms. He feels that, in her case, aspiration is the most likely cause of the inflammation and recommended that we stop breastfeeding. As you can imagine, this was pretty disappointing news since we worked so hard to get to the point where she could do it. But, because she could be aspirating saliva, reflux, medicine, etc., I may have convinced him to give us a 2-week trial with the new medication before we stop breastfeeding and switch back to thickening (which, as you might remember, made it hard for her to have stools and we had to irrigate 2x/day). She also has tracheomalacia and bronchomalacia, which means that both her windpipe and bronchial tubes are "floppy" which can lead to retained mucous in her chest since her cough isn't as effective at clearing secretions as it should be. 

Claire isn't a fan of the breathing treatments

I sent a message to Claire's GI doctor and asked his blessing to start solid foods, my hope is that lessening her need for breastfeeding might help just enough that we can continue ... so, she had green beans for the first time this week! She LOVED them and is already trying to feed herself. Last night was the third time she has had them and she figured out how to spit ... needless to say, feeding Claire is quite messy. She grabs the spoon anytime it comes near her AND she spits (it is very much like a green bean shower for Mommy!), we have a lot of fun laughing though!

Her renal ultrasound results were about the same as her previous ones. The hope was that they would be improving over time so this is a little disappointing. We will discuss these results and the results of the VCUG that she had back in November with the urologist.

She is getting very determined to find a way to move around to get to what she wants. She has started "scooting" forward more and more!  She uses her legs and slides her face and shoulders along the ground, it's slow but it gets the job done. She is also getting pretty good at the "superman" (chest/legs off the ground at the same time) although it isn't quite as efficient in helping her move forward as she hoped it would be.

 

She celebrated 3 months post open heart surgery this week! Doesn't she look GOOD?!

And here are some more pictures from our week:

At the pulmonology clinic

Baby masks help to keep her healthy and germ-free
when we are in public places since even a little cold could mean a trip
back to the hospital because of her lungs/airway and small
nasal passages. She doesn't always leave them on (apparently
they're fun to eat!) but we try.

At her renal ultrasound

"Date night" at church with mom & dad

Sleeping through the PFC meeting at Anna & Levi's school

We have been working on a little project this week and have some very exciting news to share with you all in the next couple of days!!

As always, THANK YOU for taking the time to follow along and encourage us. We appreciate you all so very much.

Fevers & Another UTI

Hello friends!

We weren't expecting to have another update so soon but, as Claire has been teaching us all along, she likes to keep us on our toes. She has always had a difficult time with vaccinations so we expected her to feel yucky and have a fever after her six month shots on Thursday. However, late in the afternoon her fever was over 103 and stayed in the high 103s and low 104s all through the night, she was miserable. Thankfully her pediatrician was the one on call and he helped us through the night. She received her monthly RSV shot the following morning (Friday) and then, per his recommendation, we headed over to urgent care to have a few tests ran.

She had a catheter placed for a UA, another CBC, they irrigated her ears, and did a swab for the flu. She was negative for the flu (yay!) but very obvious UTI. She received the same IM antibiotic (shot in her thigh) that she had in the hospital in November for her last kidney infection and we went back on Saturday morning for the second dose. That made for 8 total shots over three days (and three days in a row at the pediatrician's office)! Thankfully the doctors have put in her chart that we aren't supposed to be in the waiting room so we get taken straight back to an open room which has been awesome! That keeps her away from most of the germs and, hopefully, from picking something up when we are there so often and, most times, they jump us right to the front of the line which we don't complain about either!! I think we should start calling her "Princess Claire" ;).

Today, they called with the results of the urine culture, it was the same bacteria from her kidney infection last time so we got to start an oral antibiotic today. We will go back in 10 days to re-test her urine and make sure that the infection resolved. And because she keeps getting these, we will also be seeing a urologist. Her pediatrician's theory is that she isn't emptying her bladder all the way (I guess they saw evidence of this when they did her VCUG in November) and she will also be getting another renal ultrasound on Friday to see how her kidneys look compared to the last one that they did which will help answer some of the questions as well.

Her fever finally broke on Friday and she has been much happier, although she still isn't sleeping!

Coming up this week ... she has Speech [feeding] therapy on Monday, PT and Pulmonology on Wednesday, and the renal ultrasound on Friday. I should have another update at the end of the week!

As always, thank you for cheering us on. We appreciate you all so much! It is such a blessing to feel surrounded by such an incredible army of prayer warriors and encouragers.

Here's some pictures of our princess:

Answering Your Questions: Question #2

[The second post in our series: Answering Your Questions. Click here to view question #1.]

Question #2: Claire looks so "normal." Does she have a mild version of Down syndrome?

That's because Claire is normal, we are so much more alike than different. Down syndrome (or Trisomy 21) is the presence of three copies of the 21st chromosome, an individual either has three or they don't, meaning there is no such thing as a "mild" version.

Claire has a mixture of family features from Justin and I expressed with the presence of the extra chromosome. She has typical features of Down syndrome: beautiful almond shaped eyes, low set ears, small neck, short stature, lack of bridge in her nose, cute little curved pinkies, and my favorite, Brushfield spots in her eyes. Saying that she doesn’t look like she has Down syndrome can actually be hurtful. It implies that she’s pretty in spite of her chromosomal makeup but we think that she's beautiful because of it. Her face [and especially her eyes] tell the story of all that she has overcome and the way she loves life and people with such incredible authenticity.

Claire and her big sister, Anna, share a lot of common features!

What other questions do you have?  Please share them with us!!