Saturday, November 22, 2014

Five Months

Claire is FIVE months old today!  How did that happen?!

She weights 10b 7oz and is 23.2 inches long.

In the last month she has started rolling from back to tummy and [as of today!] from tummy to back. She found her thumbs and is rarely seen without one in her mouth.  She switches back and forth between them constantly, even in her sleep (6 sucks on one thumb, four on the other, five on one, ten on the other, ....), it keeps us laughing! Justin says she can't decide which one tastes better. She adores her siblings, has figured out how to shake a rattle and reach for toys [and her feet], thinks everything she touches must somehow go in her mouth, and is holding up her head more and more every day. We are so proud of our sweet girl!

We celebrated her "five month" birthday by getting family pictures taken!  It is our first time getting them done with Claire and we are so excited to see how they turned out, but while we wait for those [we promise to share] .... Here's a few pictures of Claire from today.




Friday, November 21, 2014

Exciting News!

First, I realized in reading back through our blog posts that I never shared the results of Claire's kidney tests - oops! As I said before, her kidney ultrasound came back "abnormal" but I didn't have all of the information at that time to pass along so here it is ... she has bilateral dilation of her kidneys and her left ureter has a thickened wall. The VCUG didn't give us super clear answers because they weren't able to get her bladder as full as they would have liked but they didn't see any reflux on the study which is great news! So the plan is just to repeat the renal ultrasound in a few months to make sure that things are improving.

This morning, Claire received the first dose of her monthly RSV shots, the nurse told us that they are more painful than other vaccinations and I think she's right because Claire cried herself to sleep afterward; I held her in the office for a while and she just wouldn't calm down, she cried the whole way home, and then we laid together until she fell asleep.  Poor baby! But because catching RSV would definitely put Claire back in the hospital and could put her life at risk, all of her doctors agree that it's worth it!

Then this afternoon, she had a feeding evaluation to see if we can start feeding her by mouth again. She did AMAZING! It's been about 8 weeks since she's had anything by mouth so we weren't expecting much but she knew exactly what to do, latched onto the bottle and drank 1/2 an ounce!! We had to stop her about 8 times because her coordination (suck, swallow, breathe) needs quite a bit of work but it is such a great start!!!! From now on, we get to start each feeding with letting her try to eat with a preemie nipple. Our feeding therapist, Kristin, taught me all of the things to watch for to make sure that she is swallowing safely and we have to limit her feeding by mouth to only 5-10 minutes (which is about 1/2 ounce at her pace), taking lots of breaks as needed, and then we will use the pump for the rest. We are all so excited for another step in the right direction!


Reflux is still a big concern and she heard quite a few episodes of it during our appointment today. Kristin shared the results of the pH study that we did in September with me and over the 23 hour period, Claire had 81 separate episodes of reflux! The longest episode lasted 7 minutes and many of the episodes lasted for minutes at a time.  11% of her reflux went all the way up to the top of her esophagus and, with her low tone, she said that this could be going all the way back into her nasal passages so we're escalating her reflux therapy again and trying to decide if we can manage her reflux just with medication or if she will need to get the Nissen fundoplication procedure done with the G tube.

Claire is 6 weeks post-surgery on Monday and we can't wait to start "re-entering" the world in a bigger way. We will still be very careful through flu/RSV season - yep, I'm the hand sanitizer police ;) - but I'm excited to start introducing her to so many special people!! It breaks my heart, although the therapist says that it shows great neurological development and understanding of what's happening; but as soon as Claire sees a new face, she instantly starts crying. We know that it's because she associates new faces with pain (from spending so much time in the hospital and at the doctor and not really seeing anyone else) but it's still hard to see. I'm excited to start showing her that new faces are awesome! So if you've been anxious to meet Claire [and you're healthy!], it's time ... she needs you <3.

And for some BIG news ... I received a phone call yesterday morning and was shocked to find out that our family was nominated by Claire's doctors to be the "featured family" at their annual Bridge Builders / Festival of Trees Event at the Greater Tacoma Convention and Trade Center. After the shock (and tears!) wore off, she shared the details with me ... We will be representing the thousands of Mary Bridge patient families at the event and sharing Claire's story. It is an event to honor their donors and we will be speaking for 8-10 minutes in front of physicians, surgeons, volunteers, and donors. I already have butterflies in my stomach but we know that this is a fantastic opportunity to share Claire's story [God's story!] and to thank all of her amazing doctors!  The event is Wednesday, December 3rd so you can be praying for us for that, public speaking isn't [even close to being] a strength of mine so I will be reciting this to myself over and over again over the next week and a half:

2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

We wish you all a restful weekend full of laughter and love!  Thank you for cheering us on, we are cheering for all of you too <3. 

Hebrews 12:1b-2
"...let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God."

Wednesday, November 19, 2014

Milestones

It has been a week full of milestones!

Just this weekend, Claire started holding up her head all on her own!!!  We have been working so hard on her head control [for months!] and the entire week has been full of happy tears as she conquers this huge feat over and over again. She even showed off for everyone at therapy today! Her physical therapist kept commenting how she had made incredible progress over the last two weeks (we missed last week because Claire was in the hospital). At our last appointment, Claire wasn't even trying to lift her head. Her heart is fixed, she's all recovered from surgery and the kidney infection and now she's just taking off!

Sitting up nice and tall for Ms Tanya 
Holding up her head AND reaching for a toy at PT
She found her feet this morning and she's also rolling ALL over the place - we lay her down and she's gone ... this also means that she did not take a single good nap today, rolling over is far too distracting.

Another big milestone for mommy and Claire, we went on our first run together on Monday! Claire was a great running buddy and we have lots of big plans for future runs.

Another milestone that we met this weekend was one that we've been waiting for but not quite as anxiously as the others ... we were asked for the first time by someone that we didn't know if Claire had Down syndrome. We knew the day was coming and were ready for it but it was a milestone nonetheless and probably a moment that I will never forget. I absolutely don't mind that people ask or know; it helps us to spread awareness about what Down syndrome truly is and the amazing things that our little ones can do. I just keep praying that people won't look at her and only see a diagnosis, they will see Claire.

Claire's big sister Anna also met a new milestone of her own, she completed her first service project. It was all her own idea too. She made eight cards (four for girls and four for boys) and matched them with specific mylar balloons that she picked out and then delivered them to the sixth floor of the hospital where Claire has now stayed three separate times. We are so proud of her and her big heart!

Anna's poster from her first service project
Claire has already had four appointments this week. There isn't a lot of new news, she has lost weight since she was discharged from the hospital but we aren't too concerned since she was fighting such a bad infection. We have started giving her bolus feeds so she is on the pump for 90 minutes, then off for 90 minutes at twice the rate she was on before. She isn't handling it as well as I had hoped but she also hadn't had any food in her stomach at all for almost two months so it will take her body time to adjust. This is the first step in making the decision about whether or not she will be getting surgery to place a G tube. The next step is a feeding evaluation which is scheduled for this Friday. The tentative plan is that the surgery will take place in Mid-December. She has [obviously] gained weight since she was born but she has been trending downward on the growth chart so it's just something to keep an eye on. She is at 10lb 7oz now which is not even a percentile.


The antibiotics that she is on for her kidney infection are giving her a lot of gas and making her uncomfortable so she is on an adult dose of probiotics and we have started irrigating again. She had an x-ray on Monday and that came back good! We always have to be extra careful about her bowel management because having Hirschsprung's Disease puts her at a much higher risk for enterocolitis so a few days without pooping got us an extra appointment with her surgeon this week.

She will be getting her first RSV shot on Friday, she will get one of these each month through the winter.

Here's a couple more pictures from this week of our happy girl <3!




Have a blessed week friends! We know it's a busy one getting ready for Thanksgiving but remember that the only thing that truly matters is that we have our faith and that we have each other <3.

1 Thessalonians 5:16-18
"Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus."

Friday, November 14, 2014

I Run For ....

We recently discovered a community group called I Run for Michael and I wanted to tell you about it because I think some of you might really enjoy it!

I Run for Michael is an international community group where individuals run (or exercise) on behalf of special needs children and adults who aren't able to run on their own. It is an incredibly supportive community and Claire has already been matched with a runner!  His name is Tony and he lives in Kentucky, how fun is that?!

There is also a group for siblings, they call them the "unsung heroes," so that, at least in this small way, they can feel included and special. I have registered to run on behalf of a sibling and am anxiously waiting for my match!

I would love to encourage any of my runner friends who could use a little extra motivation [and inspiration!] to run or exercise to consider joining us.


There is about a 4-month waiting period to be matched with a special needs child as there are WAY more runners than special needs children registered [isn't that AMAZING?!!!]. Sibling runners are being matched with a buddy right away as there is a greater need for runners in that group.

Have a blessed evening friends <3.  I hope that is able to bless and encourage some of you!


Thursday, November 13, 2014

1 Month Post OHS!

Today marks one month since Claire was given a "perfect" heart!

She has gained about 12oz since surgery and there aren't words to describe what a blessing it is to see her have so much more energy <3.


Updates from HOME!

That's right ... we made it HOME last night! We got Claire's culture back and the antibiotics that Claire needs can be administered orally AND her blood culture didn't show any evidence of infection in her blood stream (YAY!). She hasn't had any fever since yesterday and is acting much more like herself - still pretty sleepy but the antibiotics are working!!

We had quite the night, Claire's pump has been malfunctioning since midnight (it has been beeping and stopping every couple of minutes) so she has had practically nothing in her tummy for over 14 hours. She's so sleepy from recovering that she isn't too fussy but we are waiting for a home visit now to bring us a new pump and to help us troubleshoot - she needs the calories and hydration to help her heal. I've been trying everything I can think of all morning to get it working again including pulling out and replacing her tube on the floor of our car in the Target parking lot ... baby needs to eat! [[And big sister too - I didn't realize that we had NOTHING in the house for Anna to pack her lunch for school today -oops!!- so the trip to the store was necessary]]. Both kids were content in the parking lot so I may have laid down on the floor of the car too and shut my eyes for a little bit, sleep will come again... someday ;).


feeling better!
Philippians 4:4-7, 10-13
"Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

"I rejoiced greatly in the Lord that at last you renewed your concern for me. Indeed, you were concerned, but you had no opportunity to show it. I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength."


I shared these Scriptures as kind of an afterthought in my last blog post but I wanted to share a little bit of my heart and how they have been sustaining us. 

I've been reflecting on how, so often, we feel like the degree to which we feel [and show] our emotions must directly correlate to our circumstances. We question ourselves when we can't explain our feelings because, in our minds, we must feel "worse" when things are worse and "better" when things are better. We are told these things all the time too in an attempt for people to understand and relate to us, they say "you must feel exhausted [discouraged, angry, disappointed, sad] " or even just a simple "I'm sorry" can imply that we should feel bad.

But, like most things, our human nature and God's Word don't automatically agree ;). We are commanded to renew our minds.

Romans 12:2a
"Do not conform to the pattern of this world, but be transformed by the renewing of your mind."

This means continually checking our thoughts against His Word.  His Word says:

Matthew 11:28-30
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

We don't have to carry our burdens, in fact we are not just asked but commanded to "cast our cares upon Him" (1 Peter 5:7). He intends for us to have peace and rest! I'm not saying that we should never feel upset but we don't have to stay that way!! He has given us everything that we need to feel content in every situation. To be overwhelmed by His peace and light and love despite what we experience in this world. 

It is no secret that facing trials changes your perspectives in many ways, it is intended that way ...

James 1:2-4
"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything."

I think that all of us can admit that our first thought when facing a trial isn't one of joy! BUT by focusing on His Word and in renewing our minds continually through Scripture, we keep our focus not on this world, but on Him and there we find joy, peace, light, and love no matter what we are facing. 

So friends, please don't feel sorry for us, we aren't sorry! I won't say that we don't have challenges or that it's easy all (or even most) of the time but we do have a joy and peace that sustains us and keeps us smiling, yes, even when the baby is in pain, we haven't slept in days, and the "big kids" are feeling the effects of it all ... we have peace knowing that He loves all of us more than we could ever imagine, that He is working on our behalf to "finish the work" so that we can be mature and complete, not lacking anything [all six of us]. 

That is how we finish the "race marked out for us" ... races aren't easy and they take lots of training. Finishing a race is all about pushing through and overcoming challenges [and pain!] to come out victorious! The joy of the victory makes it all worth it. So instead of saying "I'm sorry" when our fellow brothers and sisters share their challenges of the day (however big or small), let's encourage them by saying, "Great job for making it through that!" or "You can do it, you've got this!"  We all need our own cheering squad.  

Thank you for keeping us strong!

I was introduced to another mom by our neighbor recently [Thank you Annie!!!! Best gift ever <3]. Kaitlin's son, William, also has Down syndrome and is in the hospital in North Carolina battling Leukemia. Her and I have been able to encourage each other over the last couple of months and share quite a few middle-of-the-night hospital conversations.

I had shared with her how I wasn't at all expecting Claire to get admitted to the hospital on Monday so I hadn't showered in three (yes three!) days, had no extra clothes or shower supplies, and had been holding and rocking a screaming baby with a 103.9* fever for 12 hours straight, as you can imagine I was STINKY! She replied with this Scripture:

Exodus 17:11-13
"As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning. When Moses’ hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset. So Joshua overcame the Amalekite army with the sword."

And she wrote to me, "I'll lift those arms up. Yes, even without deodorant." We need each other friends! In that moment, Claire needed me to "hold my arms up" so that I could calm her and she could fight off the infection and I needed Kaitlin to remind me that there were lots of people praying and "holding up" my stinky arms!! In the first verse that I shared above from Philippians, Paul mentions that he is thankful that the people had again begun to provide for him, he knew that he didn't need it, but it was a blessing to him. Thank you for taking care of us!  For the prayers, the cleaning, the meals, the care packages (Annie, the cough drops <3!!!!), sometimes it's the littlest things that get us through and encourage us. Thank you ALL for blessing us.

Hebrews 12:1-12
"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneerand perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

In your struggle against sin, you have not yet resisted to the point of shedding your blood. And have you completely forgotten this word of encouragement that addresses you as a father addresses his son? It says,

“My son, do not make light of the Lord’s discipline,
and do not lose heart when he rebukes you, 
because the Lord disciplines the one he loves,
and he chastens everyone he accepts as his son.”

Endure hardship as discipline; God is treating you as his children. For what children are not disciplined by their father? If you are not disciplined—and everyone undergoes discipline—then you are not legitimate, not true sons and daughters at all. Moreover, we have all had human fathers who disciplined us and we respected them for it. How much more should we submit to the Father of spirits and live! They disciplined us for a little while as they thought best; but God disciplines us for our good, in order that we may share in his holiness. No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.

Therefore, strengthen your feeble arms and weak knees. “Make level paths for your feet,” so that the lame may not be disabled, but rather healed."

I am copying our prayer request from something that Kaitlin wrote in her blog because I love how she put my heart into words so much better than I could have (isn't God great!):
"Pray that we can keep our sights on the long-term vision while only taking on the tasks for today. If we survive the trial but complain or become beaten down, it isn’t enough. Pray that we can find our strength in the Lord and rest in his presence. We must finish well, serving the Lord and others."


Be encouraged friends! We are cheering you on <3. Thank you for being our "battle buddies!"

Wednesday, November 12, 2014

Kidney Infection Updates

Claire's fever still hasn't broken so they tried again last night to place an IV so that we could, again, try to start a course of IV antibiotics. They have a special IV team here and since she had already had so many failed attempts yesterday, they came to place it. They gave it everything they had but after a full hour of trying [+ Claire screaming, and it taking everything in me not to cry too!] we had to move to yet another back-up plan. It just boils down to that with all that she's been through, all of her "good" veins have already been used and there just isn't anything left. So instead, she got injected antibiotics again early this morning (in her muscle), at a higher dose than yesterday's to hopefully start to make a dent in the infection.

She got a renal/bladder ultrasound yesterday morning which had some abnormal findings so we had a follow-up study, called a VCUG this morning. Claire was not a fan at all.

We had a little bit of a rough night. Her fever is still topping out in the mid to high 103s and she had another episode of vomiting but, overall, she IS looking better this morning and the fevers are coming down with Tylenol (but coming back up when it wears off).

Now that the full urine culture has come back and they know exactly what bacteria we are fighting, our hope is that we might get to go home today. The good thing about so many familiar faces is that they all know how much time we spend here and are motivated to get us back home again. As long as the medication that they decide that she needs can be given orally and they feel like she is responding well to the second injected dose she received. Then we could follow up concerning her kidney anatomy and function (and her recovery) as an outpatient. 

Thank you for praying.  We need to see that the medication is starting to make a dent in this infection!


***And, if you could pray also ... I was already fighting a cough/ear ache/headache thing but now that we are here and I haven't been able to sleep, it's getting considerably worse. I need to not be sick so that I can take care of Claire, she can NOT get sick (we are still only 4 weeks out from OHS) and it would break my heart to not be able to cuddle with her during her recovery. [[Plus I think the nurses are probably secretly cringing inside while I cough all over the place]].  Thank you <3.


Philippians 4:4-7, 10-13
"Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

"I rejoiced greatly in the Lord that at last you renewed your concern for me. Indeed, you were concerned, but you had no opportunity to show it. I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength."


Be encouraged friends <3.  

Not our usual happy girl :(
Lots of cuddles!
Trying to get some sleep before they
wake her up for more "torture"