No Right Click

Monday, July 14, 2014

Our Week in Pictures

You should have seen the other guy...

Tickle Time

Sibbie Love

Music Time with Daddy

Splat Cat.  
This is what happens when we get home from helping Daddy invite students to Christian fellowship on campus and then go out to eat, bumping back nap time. 

Wednesday, July 9, 2014

Forget Not All His Benefits

On the way home from the hospital

Many have asked us how Noah is doing.  The short answer is he is doing great!  We arrived home from the hospital about a week and a half ago.  Time has flown by!  The little man had a much better transition home than we anticipated.  See?

Overall, he is doing really well and doesn't seem to be in any pain.  He has had a slight fever, which is normal post-surgery, but no need to worry unless his temp goes up higher.  He has also struggled with some difficulty sleeping and clinginess, but as long as he's on one of our laps, he's a happy boy.  Noah has been a lot more cheerful than we expected and blessed us with lots of laughs, smiles, and all around silliness. 

For two weeks he was not allowed to lay on his stomach to protect the healing incision on his chest.  Needless to say, his body is a bit weaker than before, so we are working on rebuilding those arm, leg, and core muscles and getting him crawling more regularly again.  

Want to hear more about how crazy kind and gracious God is?  
We saw Noah's cardiologist for a follow-up appointment on Friday.  And once again, his cardiologist was amazed at his progress!  Remember how we asked you to continue to pray for the right ventricle in his heart to work more efficiently?  Well, it is working more efficiently now!  The issue was that that ventricle was under so much pressure for years from his pulmonary artery being banded.  His right ventricle was working overtime for five years.  But Noah's echo-cardiogram on Friday showed that the pressure in that ventricle is almost half of what it was when he was in the hospital.  I'm no cardiologist and don't know what unit of measurement it is, but his cardiologist said when he was in the hospital the pressure in the right ventricle was 100 and now it is already down to 55.  That's great news and another answer to prayer!     

Here is some other good news:
  • There is no more swelling in Noah's body from the surgery
  • His oxygen levels are normal
  • His blood pressure continues to stay at a good level
  • He does not need two of his heart medications anymore.  No more waking him up in the middle of nap time each day!  No more planning meals around medicine!  Woohoo!
  • The time in the hospital actually helped Noah's bond with us grow, rather than hindering it.  We'll share more about this soon :)
  • Nora did well through all the transitions.  She had a rough first two days home (which is her normal pattern), but is back to her normal happy, goofy,...feisty...self.  We have some long overdue, encouraging updates to share about her progress soon. 

Thank you again for all of your support and prayers on our family's behalf!  Please continue to pray for complete healing in Noah's heart.  It may take years for his heart to work out the kinks...there is actually a kink in his pulmonary artery from being banded for so long (think like a kink in a hose), so it will take a little while for it to expand even more and get the pressure in that right ventricle down completely.  We are also attempting to wean him off of his diuretic medicine (at the direction of his cardiologist), so we would appreciate prayers.  One prayer is that he can successfully come off that med.  The other prayer is for wisdom to see the signs if he cannot come off of it.  Basically if his body needs that medicine and we take him off of it, fluid will build up around his heart and he will experience heart failure.  That is why we need the wisdom to be able to notice if his body is retaining fluid or not once we wean him off of it.  Thank you for praying! 

Lastly, please praise the Lord with us.  He is good.  Always.  We are still thrilled and amazed and so so thankful that we get to keep our little guy!  What a gift!

1   Bless the Lord, O my soul,
and all that is within me,
bless his holy name!
Bless the Lord, O my soul,
and forget not all his benefits,
who forgives all your iniquity,
who heals all your diseases,
who redeems your life from the pit,
who crowns you with steadfast love and mercy,
who satisfies you with good
so that your youth is renewed like the eagle's.
Psalm 103

Saturday, June 28, 2014

Answered Prayers

This son of ours has a way of surprising everyone.  It happened in December when he went into heart failure and the doctors thought we would have to make a decision about surgery right away.  Then Noah went ahead and surprised everyone when his heart stabilized very quickly, and we were able to postpone surgery until now.

This time around the doctors and nurses cannot believe he wasn't sicker when he came out of surgery.  They keep telling us how they expected him to be in bad shape afterward since it was such a complicated procedure.  His cardiologist couldn't believe how quickly he moved out of the ICU and into the regular Cardiac Care Unit.  We are surprised by how quickly he is recovering, too.  Heck, we're even blown away that the whole procedure was successful in the first place- especially since the surgeon talked to us right beforehand and was hesitant about it working.  (Of course, it will take certain parts of his heart longer to figure out how to work well again, but that will happen, Lord willing, over the next few months).

This faithful God of ours is the One who is really doing the surprising, the One bringing forth healing in our little man.  We are so in awe.  We are so humbled.  And we are so thankful for your prayers.  

So many answered prayers thus far!

  • You prayed with us for Noah's heartbeat to find a rhythm and as of yesterday his heartbeat is more regular!  
  • You prayed with us for the swelling to go down in his body and it has.  He still has a little extra to get rid of, but he looks worlds better.  God answered this prayer a little differently than expected.  Yesterday his echo showed fluid around his lungs (which is common after heart surgery).  However that turned out to be a good thing.  For the couple of days before that, I asked a few nurses to increase his diuretic because I could tell his body needed it badly, but each of them just wanted to wait it out, telling me that it's normal for kids to be swollen.  So, when they saw fluid in his lungs, they finally upped the dosage, which helped his body to release a lot of the fluid that was making him swollen.  Yesterday he had four pounds of extra weight on his body just from fluid retention!  So, I'm strangely thankful for fluid in his lungs that led to his whole body losing fluid because of the increased diuretics.
  • You prayed with us that Noah would breathe well without his oxygen tube.  Today he hasn't used it at all!  He only needed it a minimal amount of time overnight last night but hasn't needed it today, even for napping.  The doctors were worried about his levels dropping when he sleeps, but so far now they've been good even while he sleeps.  Getting rid of the extra fluid and the fluid around his lungs has helped him be able to breathe better.

Right now, the doctors are guessing we will go home tomorrow as long as everything continues to look good today.  That is way sooner than any of us expected.  We anticipated being here for 3 weeks, or maybe 10-12 days in the best case scenario.

Noah looks really good today!  We're continuing to see steady improvement.  We got to play and go for a wagon ride in between naps. :)

I could snuggle and sing to him all day when this is the response he gives me. :)

In an interesting turn of events, this sweet little girl below caught a stomach bug from the hospital and ended up vomiting all over Noah's hospital room last evening.  

Because she was very lethargic and not very responsive in between and after vomiting, we took her downstairs to the ER just to be safe.  While I was walking her back, the nurse mentioned the horrible timing of it all and what a hard situation it was to have one kiddo just have heart surgery and the other get a stomach bug while visiting.  But you know what?  It didn't feel that hard or horrible (of course, we felt lots of compassion for Nora though).  Seriously, we're just so overwhelmed that God would be so incredibly gracious in bringing Noah through the surgery safely, allowing the surgeon to complete the whole procedure as planned, and making Noah a rockstar at recovering, that the situation didn't feel very stressful.  Our biggest worry was whether or not Hubs should take Nora home to rest in her own bed or to stay with friends in the area again.  

After she got some anti-nausea meds and drank enough fluids to prevent dehydration, the ER released her, and her awesome and incredibly handsome Daddy drove her all the way home, so that she could be comfortable while she recovers.  Thankfully, she is back to her perky self today and soaking up lots of quality time with Daddy in this rare opportunity to have him all to herself. ;)  

Thanks again for all your prayers, friends!!

We would love your continued prayers:
  • That Noah's oxygen levels would continue to be good
  • That the rest of the fluid would leave his lungs and body
  • That his heart continues to figure itself out and that his right ventricle, especially, will work more and more efficiently
  • That Nora would be comfortable with all the changes this week.  Going home makes four places she has slept in one week!  She is a trooper :)  

Thursday, June 26, 2014

It Just Keeps Getting Better

Noah continues to get better and better with each day so far!  Today he greeted me with lots of smiles and giggles.  It was the first time he smiled since before surgery.  He looks worlds better today than he did yesterday and seemed to be in much less pain, praise God!

He had a busy day full of sitting up and playing, some standing, physical therapy, speech therapy, and occupational therapy.  He was even able to go for long periods of time without needing his oxygen tube!  They took the bandage off of his incision site where they sawed through his sternum to do the surgery...which was...umm... well, a disturbing sight.  Eww.

The hardest thing about the day was that he kept fighting sleep, so he was struggling with being cranky due to his tiredness for most of the day.  But thankfully, he took a two hour nap finally in late afternoon.  He seems to only give into sleep when he's in our arms, instead of in bed. ;)  (Oh, but there is so much to be thankful for, like that we have a comfy chair right next to his crib, that he will let us comfort him, and that we are even able to hold him.  Many kids are out of sorts after surgery and may refuse comfort.  If the surgeon had added certain tubes to Noah's body, we would not have been able to hold him for the first few days.)

We're looking forward to seeing what tomorrow brings.  We hope to go for a walk around our floor in the hospital.  Noah is still medically critical, so we won't be able to go far.  But I'm sure he is itching to get out of this room. :)

We would love your continued prayers, friends.

The four biggest things you can be praying for specifically are

  • that his heart finds a regular rhythm (his heartbeat is still irregular)
  • that his right ventricle thins out and works well with his corrected heart (it's very thick from having to work so hard for years from the stress of his pulmonary artery band).  The doctor told us this could take anywhere from weeks to months.  Basically his heart has to learn to work properly in its new state.
  • that he breathes well without the oxygen tube--praise God for progress in this each day!
  • that the swelling in his body dissipates-- praise God the swelling is steadily decreasing!

    Thank you all for your continued prayers for our little guy!! 

    Wednesday, June 25, 2014

    Post-Surgery Update 2

    Overall we've been told that Noah is doing well. All the issues he is experiencing are normal for this point post-operation.  His heart is still working to try to find a new rhythm.  His blood pressure has mostly been in the normal range now, but still drops throughout the day.  He is still on oxygen because his breathing is very shallow.  His poor little body is still also very swollen from retaining fluids.  

    We moved out of ICU this afternoon and onto the main cardiac care unit, so that's progress!  His cardiologist was shocked (in a good way) that he moved out of ICU so soon.

    He has been eating and drinking a little bit all day, which we've been told is really good at this point.    His nurse said most kids won't eat this early, so we're thankful he is strong enough to eat now.  

    Noah got to sit up and play a little bit today.  But mostly, he had a rough night last night and a hard day today.   He went back and forth between sleeping in his bed and in our arms.  He grew very agitated and threw lots of fits in his tiredness and pain.  Many nurses were growled at and greeted with angry yells.  His pain seems to have lessened a little tonight and this evening and he has had a few hours of respite, praise God!  No smiles yet, but he has laughed a few times.  :)

    And thank you also for your prayers for Nora. She is taking the new environment and her boring hospital days like a champ!   

    Thank you again for praying for our boy and our whole family! 

    Tuesday, June 24, 2014

    Surgery Update

    We just wanted to stop in and give you an update on Noah's surgery.  First, thank you so so much for your prayers!  God has granted the desires of our hearts through your prayers and Noah's surgery went even better than the surgeon expected!  It is possible that he may need an additional surgery in the future to close his valve, but for now everything is looking good.  And we're very thankful!

    Would you continue to keep Noah in your prayers? These first 12 hours are the hardest. Currently Noah's blood pressure is lower than it should be and continues to be low.  Please pray for his nurse and the others working with her to find the proper combination of meds to get his blood pressure and his heart right where they should be.  Finding the right combo of meds is a delicate balance.  In Noah's case, it sounds a little but trickier because his size doesn't match his age.  His heart rate is also currently lower than it should be.

    Please also pray for comfort for Noah.  He is mostly groggy but clearly not feeling good (understandably!). We are thankful he trusts us and is willing to express his hurt to us.   His sedation meds are being lowered, so he is going to start waking up more- which means that he'll feel the pain more. Please pray for wisdom to read his signs and know how much pain meds to give him.

    Thank you so much for your prayer and willingness to walk this journey with us!  

    "You have multiplied, O LORD my God, 
    your wondrous deeds and your thoughts toward us; 
    none can compare with you!
     I will proclaim and tell of them, yet they are more than can be told" 
    Psalm 40:5

    Monday, June 23, 2014

    He Will Not Fail Us

    Noah's heart surgery is coming up tomorrow. We won't know until later today what time it is at, but we were told it will most likely be in the morning.

    **Update:  We just got the call that Noah needs to be at the hospital at 7 AM.  He will probably go back to the Operating Room at 8 AM.**

    There's so much to think about and yet it feels like there are no words at all. We have so many feelings and thoughts to process.

    You can see our previous thoughts on Noah's surgery here:

    Today everything feels surreal. Tomorrow it probably won't feel that way. Tomorrow we'll be facing reality as our little guy is in surgery for four to six hours.

    These past few weeks have been a mixture of emotions and a whole lot of tears.  A few weeks ago I was mourning the idea of losing Noah with no hope, focused on my own pain. But God in His mercy changed that. One morning Noah was sitting on his Daddy's lap and Hubs was reading Ephesians to him and talking about how in Heaven, Christ will be lavishing his love and kindness on us with great generosity. How He'll never stop heaping kindness and love on us. And it hit me that if Noah doesn't make it through this surgery, that will be his reality. Extravagant love and kindness from Jesus will be his reality. He will be wrapped up in His perfect Heavenly Daddy's arms. That morning was the first morning I felt hope no matter what Tuesday may bring. Real hope. We long for Heaven for our little boy. But today we long for him to be with us even more.

    Bedtime Prayers

    We've been marveling these past couple of days about what God has done in our little boy and how God totally changed his life. In Noah's birth country, he was a throwaway. Even in the orphanage, he was largely ignored and sat in a stroller by himself for most of the day.

    But now, now he has one of the best surgeons in the world at the top children's hospital in the nation caring for his heart.  There are conference calls with the other top hospital in cardiology regarding his case.  There is a team of surgeons, doctors, and nurses discussing how to best take care of his heart.  Now there are between one and two thousand people praying for him, many people we don't even know.

    Now whenever we take him out in public, inevitably someone comes over and cannot help themselves and touches him and tells us how beautiful he is. Nurses peek their heads in the room when he is at the hospital just because they heard how cute he is.

    This little boy who was once a throwaway is now loved and valued by so many. The boy who was once considered worthless is now deemed worthy. What a picture of the gospel and how God has redeemed us!

    So, this has been our last few weeks- marveling and mourning with hope.

    As for His failing you, never dream of it --
    hate the thought of it.
    The God who has been sufficient until now,
    should be trusted to the end.”

    We want you to know that even if our worst nightmare comes true and Noah doesn't make it through the surgery, that our FAITHFUL God has not failed us. If he survives and the surgery is unsuccessful and his heart remains in a poor state, God has not failed us. He will not and cannot fail us. We know it might not feel like that in the moment, but this is the truth.

    But also know that we are also pleading with God to heal Noah and allow him to stay with us. He is a gracious Father who listens to His children and wants us to bring our deepest longings to Him. And that's what we are doing. We are clinging to Him and clinging to Hope.

    Please join us in prayer:
    • That Noah will stay healthy so they can perform the surgery tomorrow
    • That Noah's heart surgery will be successful and his heart will be healed
    • For wisdom and steady hand for the surgeon and his team- Because Noah already had his chest opened up for his pulmonary artery band when he was a baby and they have to reopen the same place in his chest, there is an increased chance of him bleeding out or the doctors sawing into his heart. Please pray against these things happening.
    • That we will trust the Lord through all of this. We need Him.
    • That Noah will trust us in the hospital when he is hurting and confused. We won't be able to hold him for the first few days, and that will be hard for him.
    • That Nora will do well with the change in routine and new environment. We will all be away from home for the majority of the time Noah is in the hospital.

    Thank you for holding us up before the Lord in prayer! You are our Aaron and Hur, holding us up when we are weary.