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.

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."

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."

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.

Here are the links for both groups:

www.facebook.com/groups/irunformichael
Runner registration: www.whoirun4.com/match-me/

www.facebook.com/groups/ir4Siblings
Runner registration: www.tinyurl.com/ir4-SiblingRunner

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!

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!"

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"

Hospital Admission No. 4

Yesterday around 4:30pm, Claire started crying inconsolably and around 6:30 I noticed that she was starting to feel warm, I took her temperature (101.6*) and went hunting for our surgical binder to check our "when to call" list.  Sure enough, fever was on the list. I called and they told me to bring her to the ER and, of course, I was home alone with all three kids ... a few phone calls and some shuffling later, off we went. I was expecting it just to be a precautionary trip, for them to tell us something like "just a little bug" and send us right back on our way BUT .... Claire's white blood cell count was 32 (more than triple what it should be) so we were told pretty quickly that we wouldn't be going home.  

We got settled into our room and Claire's fever continued to rise, all the way to 103.9*F despite having Tylenol on board.  They were unable to get an IV placed but gave it quite the effort :(. At that point, she threw up a couple of times so they had to inject her medicine directly into her muscle and at about 4:30am she finally calmed down and fell asleep after 12 straight hours of crying.

As of this morning, all signs point to a very bad kidney infection. The plan today is for a renal/bladder ultrasound, repeat UA (catheter), and possibly a VCUG. For her to have an infection this young (and this severe) is concerning so they want to take a peak to make sure that everything is emptying and functioning properly.

Thank you for your continued prayers <3. I will update when have more information.

Not very happy in the ER - x-rays, blood draw,
and a urine sample (catheter) make for one
unhappy baby girl. 

Finally asleep now that the sun is coming up <3!

Dedicated

Psalm 127:3-5

"Children are a gift from the Lord;

they are a reward from him.

Children born to a young man 

are like arrows in a warrior’s hands. 

How joyful is the man whose quiver is full of them! 

He will not be put to shame when he confronts his accusers at the city gates." 

This morning we joined with our family and friends and collectively thanked the Lord for giving us our newest little blessing. We promised to raise Claire up according to His Word and to model in our own lives what it means to be a Christ follower. It was a great morning!

This is our third time dedicating a child to the Lord, in church, alongside family and friends but I can't help but reflect on our journey as parents and how our hearts have changed in terms of what it truly means for us to dedicate our children and I wanted to share those feelings with you as I explain what it means for us to dedicate Claire today.

When we got home from church, Justin headed up to bed, I turned a movie on for the kids, and went searching for an old blog post. I kept a blog for one year after Emelyn died (for those new to our story, Emelyn is Claire's big sister). It wasn't anything fancy and I didn't even share it with anyone, it was just a way for me to journal about my grief and the things that I learned over that year. There was one post in particular about Abraham and Isaac that I wanted to find. Since the day Emelyn went to be with the Father, I have related to the story of Abraham and Isaac in a new way. Although God didn't ask me to sacrifice my child with my own hands (thankfully!), and although the story has a different ending... the journey of learning to have faith despite anything that the Lord asks of you is similar. We found out that Emelyn was, very literally, fighting for her every "breath" in March of 2010 and we began an aggressive [and painful] fight for her life, and 4 months later in July, we celebrated both the joy of her birth and experienced the pain of her death.

I can see now that everything that we went through during that painful time has helped to shape our lives and our family in ways that I couldn't imagine. Throughout our journey there was a lot of pain, but there was also joy. And a new, and deep, perspective of thankfulness for every moment that we have of this life and with those we love. Our lives have, very literally, been changed forever.

Part of my post from September 2010 reads:

"I have come to not only know, but to really understand that my children are not mine -- they may feel like mine, and I may hold on to them like they are - but really, they are God's and His plan for them is better than even my plan for them is. It may not feel like it now, and I may struggle with accepting His plan, I may even petition and beg and pleed for him to change His plan but I know that my perspective is limited and I just have to rely on my Father who knows best -- and this takes extreme faith!"

It is one thing to say that we have Abraham-sized faith but it is a completely different thing to follow through when it is one of our own children and, like you can imagine, we struggled.

We dedicated Emelyn to the Father in a very real and tangible way, not in a church service but in a hospital room surrounded, not by family, but by nurses and doctors, many of which we barely knew. And now we get to choose, not just once during a church service, but every. single. day. to dedicate our children, in every way, to the Father and to His plan, whatever that may be for them. 

So today, when we held Claire up in the air as a symbol that she belongs to the Father alone, I laid at His feet all of the fears that I have for her life. Fear about her health, but even greater than that is my fear about her acceptance, fear of how she will be treated, and my hope that those that she meets would fully grasp her incredible value and all that she has to offer this world. I lay them at the feet of my Savior, HER Savior, the one who knows her inside and out, who formed her in my inmost being and I declare that, to the best of my ability, I will teach her to do the same - to stand on the promises of His Word and to rest in the arms of our loving Savior.

We are commanded not to live in fear, this doesn't mean that we don't have very real reasons to fear, it means that we have learned to renew our minds so that we can walk in His joy and freedom, regardless of what life may bring.

He's got this friends <3! And He's got you [and yours] too ... no matter what He asks of us, He will carry us through and, even when it looks like no possible good can come from a situation, when things are as dark and hopeless as they could possibly be, He is faithful and mighty, He is joy and love and peace. He will sustain and comfort us. So let's let go, take a deep breath, this isn't our battle to fight. Stand on His promises, be obedient to His word and ... breathe deep.

John 14:27

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."

Holding her up in the air as a symbol that she belongs to God

Pretty girl <3

Claire and our almost 2 month old nephew, Aiden

Holding her up in the air as a symbol that she belongs to God

Pretty girl <3

Claire and our almost 2 month old nephew, Aiden

Progress

We had a great appointment this morning with Claire's general surgeon and took some big steps forward.

She changed our rectal irrigations to only as needed and our dilations to every other day!! We have been doing both basically every day (once or twice per day) since the day she was born so we are really excited about this. These have always been hard on my Mama heart.

We also talked quite a bit about what she expects for Claire's long-term bowel management. I've been scared to ask (because I didn't think I wanted to know the answer!) but I'm glad that I did, she is hopeful that Claire will do really well with a fairly minimal bowel regimen although she did say that her and I will be lifelong friends so it will be a process and I'm sure I still have a lot to learn.

We also talked G-tube, the great news is .... she still thinks that Claire might not need it!!!! AND we got our wish, she called Claire's GI doc who was at another clinic today and ... no more NJ as of this morning!! Claire is back to an NG which means that her feeding tube is in her stomach. She hasn't had anything in her stomach for about a month and a half now so we are really excited about this, sweet thing gets to "eat" and feel full again <3. We are still using the pump as it will take time for Claire's stomach to expand (it's really small now from being empty for so long) and the pump allows the same volume to go in over a longer period of time, once her stomach has had some time to adjust, we will try bolus feeds and then, if she tolerates those well, we can start trying to feed her by mouth again! We are letting her set the pace and seeing how she does at each step.

No more NJ means that we don't have to keep her restrained anymore because if the NG gets pulled out (which I'm sure it will!), I can put it back in at home. No more $75 trips to the ER (we've had 3 just for replacing the NJ and one was on Levi's birthday, poor buddy). It will be great for her motor development to not have to keep her hands bundled up and again, it's progress! It means that she's making steps toward being able to take food by mouth again.

The only big difference is that we can't run an NG 24 hours/day like we have been doing with the NJ so Claire will be at a faster rate (32ml/hr) during the day (for 18 hours) and then she will get to be disconnected for 6 hours, these will be the only hours that I will be allowed to sleep but the trade-off is steps in the right direction and that's more than worth it!! We go back in on Tuesday to see her GI doctor and to evaluate how she's done with the new plan.

It is truly amazing how quickly we have developed relationships with the staff in the clinics and at the hospital. With as much time as we spend there and all that we go through together, they start to feel like family. Sarah is one of our favorites and she's moving to another clinic, we are very sad to see her go. I wish there was a way to thank these very special people, they sure deserve it! Here's a picture from our appointment today:

Because we switched to the NG, our appointment was longer than expected because we had to wait for an X-ray and also an added appointment with the dietitian so, being the great sister that she is, Claire hung out at the park in the rain so that Big Brother could play for a little while:

And we are finally able to take real baths again now that Claire's scar is healing! Claire loves baths and Big Sister loves helping:

Romans 8:37 (NLT)

"No, despite all these things, overwhelming victory is ours through Christ, who loved us."

Goodnight fellow Victors - little steps, big steps, just keep on taking steps. We've got this!


Thank you for cheering us on <3!

A New Heart

Many of you have told me how much you enjoy following along on Claire's journey [thank you for the encouragement!!] and, admittedly, I haven't been doing very well with updates. So, inspired by a fellow "Mama Warrior" who has this whole blogging thing down far better than I do ... here is my attempt to update, educate, and *hopefully* inspire and encourage! As always, thank you for following along, it truly is quite humbling.

Claire is now three weeks out from her open heart surgery and she is doing very well. 

Last week she had appointments for weight check (she had gained 7oz in one week! putting her at 10lb 3oz), dietician (no changes since her weight gain was so great!), OT, 4 month well child checkup, and her 4 month neurodevelopment evaluation.

During OT, Claire lifted up her head while flat on her tummy for the first time (and mommy cried!).  It took quite a bit of warm-up and activation exercises and some careful positioning on the part of the therapist but SHE DID IT!!  Our therapist taught me how to do it and what support she needs and we have been practicing a few times a day since, she's able to do it for a couple of seconds at a time now but she's getting stronger every day. Here she is!:

Her well child check-up mostly consisted of us filling her pediatrician in on all that has happened in the last 2 months since we saw him last.  She was not able to get her vaccinations because of the blood transfusion that she received (we have to wait 6 weeks post-surgery) but he said that she looks great!  We will see him again in 3 weeks for vaccinations.

Her neurodevelopment evaluation went well also. It was a looooong appointment and we were at Mary Bridge, between this and another appointment, for a total of 6 hours on Tuesday. Big brother Levi, who is our "appointment buddy" these days, ran out of things to do and pretended to take a nap!

Now that her heart is fixed and she finally has the strength to do it, they have recommended a more aggressive therapy approach and wrote us a referral for the CTU (we are currently using A Step Ahead which is a service through Birth-Three). Her lower body strength is amazing and the therapist said that some of her skills are even ahead of what they would consider to be "typical child development!" (rolling from her back to her stomach, tucking her knees up under her chest while on her stomach, raising her feet to her hands while on her back or side). But there are other areas where she needs some extra help (lifting her head, upper body/arm strength, intentionally reaching for and holding onto objects). I forget the word for it now but her tibias have an increased curve and her feet turn in slightly, all this means is that she will probably need to wear some braces when she's learning to walk to help her learn to compensate for it - we can handle that! Here she is rolling over:

Claire LAUGHED for the first time last week as well!  I told her daddy to stop trying because I knew that he'd try once or twice and get her to laugh, even though I have tried hundreds of time and nothing .... and, of course, he did!  But I was too busy laughing and crying to be [too] mad at him.  Let the record show: Claire's neck is very ticklish!

In addition to her 4-7 appointments each week (spread out over 3-5 days), Claire also gets the [usually] fun privilege of accompanying her siblings on their shenanigans - school events, soccer games, drop-off/pick-up, YMCA classes, etc.  [The therapist asked me today if Claire has a consistent nap / bed time routine, ummm... no! We don't have time for that ;)].  

Here she is napping at Anna's harvest feast at school:

And here she is, staying up late, for trick-or-treating!  Levi was a pirate and the girls were fairies <3.  

Now onto this week [so far] ... We started on Monday with a weight check in the GI clinic, an appointment with her dietician and we visited her eye doctor.  Claire gained 4.8oz since the last weight check (one week ago) putting her at 10lb 8oz, still "off the charts" but we're heading in the right direction and her daily weight gain was right in the range that they want it to be!!  The dietician was pleased with her weight gain so the only change she made was to increase the rate of her pump to 29ml/hr in order to keep up with the higher calorie demands that she will have as she continues to grow. The risk in increasing the rate (she's already on the high end of what is acceptable for someone her size) is that it could move too quickly through her intestine and she would not be able to absorb all of the nutrients but she seems to be tolerating it okay.  

The eye doctor said that she looks great so far. Her tear duct is still clogged but we won't address that unless it still hasn't fixed itself when she's closer to one. He wants to see her again in 4 months.

Our only appointment-free day this week was Tuesday (yesterday) and we finally got to go back to MOPS!  Because of Claire's surgery and being in isolation, this was only our second time being able to go.

Today was our first day at the CTU. We loved it and feel like Claire will be getting excellent therapy there! She is starting with weekly PT (Wednesdays) but the therapist mentioned that she feels like she will need OT as well. We hope to also move her speech (for feeding) there as well so that we don't have to travel to Tacoma quite as much (hopefully only 2-3 days/week instead of 3-5) but until we get the NJ/G-tube situation figured out, we have to keep everything consistent.

Speaking of her feeding situation, I get asked about that (and how she sleeps) more than anything else .... hopefully this will answer your questions.

Here is our nighttime set-up: 

Now that Claire is rolling all over the place and has to be hooked up to her pump/tube all night, we co-sleep. Justin is at work during the night and the only way that I can feel safe knowing that she isn't getting tangled up, strangled, etc. is to sleep [or not sleep!] right next to her so that I can feel when she moves and check on her quickly and easily. 

The picture is dark but that's an IV pole with her feeding bag hanging on it and the light is her pump. It beeps whenever she lays on her tube so I wake up and move her off of it and it beeps when it's empty (and sometimes it beeps for no reason). Because she is getting breast milk through the pump (and because cold milk separates and we need Claire to get ALL of the good fats mixed in), I have to pump regularly to refill it with fresh/warm milk (this also helps it to last longer so that I can fill it less often - but we still can only put so much in there at a time so that it doesn't go bad. This means that I wake up at least once to pump during the night, and we pump/fill it a couple of times during the day as well. So even though Claire is a pretty good sleeper (she wakes up a few times during the night but only to talk to me or tell me that she needs her pacifier put back in her mouth), her pump keeps us up quite a bit.  Plus, it's noisy!  Every 20ish seconds, it does its cycle to push more milk through the tube and it isn't quiet about it ;).

Levi is my very light sleeper so he is our nighttime buddy too as the pump wakes him up as well. This is both of them sleeping on my legs while I pumped this morning at 3am (sorry it's so dark but you get the idea). Of course, immediately after I finished pumping I spilt one of the bottles of breast milk all over the bed. That's what happens when it's dark and you can't move your legs and you're trying to refill her bag/pump while holding two full bottles. Thankfully I only spilt one so that bought us a couple of hours before we had to do it all over again! I wish I could say that was the first time I've done that, I will learn.... Someday!

To sum it up into a short answer... Yes, Claire is a good sleeper but no, we aren't getting good sleep ;).  All in its time though, I'm treasuring the extra cuddles and quiet moments.

We put her in these cute zipper blankets at night and when she's in the carseat so that she can't pull out her tube when we can't watch her. Since it's in her jejunum (intestine), it can only be replaced with X-ray so we have to go to the ER whenever it comes out so, although we are THRILLED that she is learning to grab onto things, play, pull, roll, etc. we have to literally be within arms reach of her all day long so that she doesn't get a hold of it. I try not to keep her in her blanket too much as it inhibits her motor development but nighttime and car rides are an exception since I can't watch her during those times.

Levi attends our appointments with us. This goes just how you imagine it would ... he's a three year old boy! BUT he loves his sister and is getting used to the routine. Initially I had thought that I would prefer not having to take him along but when we have appointments so often (and they take so long), it's just not sustainable over the long-term to find someone to watch him nearly every single day, plus I would miss him too much!

Here he is encouraging Claire (singing to her) during one of our little PT routines that we do at home (we do these 3-4 times per day):

But he IS a big brother, after all .... it took us a loooooong time to find where he hid Claire's pacifier:

She forgave him:

More rolling over - she started in the middle of the blanket on her back and ended up here:

And more practice lifting her head:

Here she is holding a rattle for the first time, she isn't too sure about it since she couldn't get it to fit into her mouth (which is very important these days) ;):

And here's my "homework," our new therapist loaned it to me. The information is truly fascinating, my biggest takeaway today that I will pass along is that individuals with Down syndrome have amazing flexibility (I get to see this truth in Claire every day!) but they *typically* lack the muscle strength and tone of their peers. I can't stop thinking about how our typical kids just one day reach their milestones, we don't even think about the steps or the process, it just "happens." Seeing all of the steps broken down and realizing just how hard Claire is truly having to work is amazing, I am so proud of her!  

Tomorrow we have an appointment with her surgeon to talk Hirschsprung's and G-tube and Friday we have both OT and speech (feeding) therapy.



Pictures like this keep me going. They remind me that no matter what worries or challenges we have, we have each other and that is the greatest gift!

Psalm 73:26

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever."

I'm willing to wager that having your child's heart fail is actually worse than your own heart failing but we cling to his promises and He has sustained us, strengthened us, humbled us, and shown Himself mighty.  Her heart is whole again and we have much to be thankful for <3!

Be blessed friends!