Monday, September 22, 2014

Open Heart Surgery Date Set

It's been a long week and a half. 

There was all kinds of changes for Josiah turning three and all kinds of "ups" with him. We had, had all "downs" you could say with Savannah.

After talking with the cardiologist and finding out they set Oct. 7th as her surgery date, we discussed her health at that's not great. They have upped her surgery to this Tuesday, Sept. 23.

-She is still struggling with labored breathing. It's gotten worse, the lasik isn't keeping up with it as much.

-Her weight gain has been REALLY slow and has once again plateaued. We tried to increase the calories again but her tummy couldn't handle it and ultimately she couldn't keep it down. So...
                      1. Risk of aspiration.
                      2. Back to square one with calories and no-little weight gain.

-We are heading into "sick season" and she's at a higher risk of getting sick (has to do with having Down Syndrome) and with her heart right now, depending on the illness it can be deadly to her. Last Sunday at church we found out THREE different families had phenomena and another family had the respiratory virus that has just hit New England form out West. All of that would be DEADLY to Savannah!!! If she where to get a cold...they would have to push the surgery out for another 6 weeks!! Her heart is failing....her lungs are failing...she can't take another 6 weeks they tell us.

Spending time with Daddy, telling him a story.

Princess Pudding Pops

     They had us come in this past Monday for her pre-op appointment. That was a lot of work and am SO THANKFUL that Daddy stayed home with the big kids!! We went to the lab for blood work, then for an x-ray (she has to sit while we hold her arms straight up. It's very uncomfortable, but was able to stand there and looks at her and calm her down...Thank you Lord), then an Echo was done. At that point she had, had it...she was poked, stretched, then sticky tabs where pulled off her body...she screamed then finally went to sleep, which was perfect. 

     Next we had another sonogram done of her heart. We used the half hour to talk with the Anesthesiologist about the whole thing. We then had to get more blood work done (so cruel!!), this time they took her from her head...I walked out of the room...I couldn't handle that. By that point she wouldn't stop screaming. I met with the surgeon and discussed the surgery with him, while she screamed. :p Finally they took us up to the ICU to see it, meet the nurses and was given my instructions for the night before surgery. At that point she was giving "hate look" to everyone...I have never seen her give looks like that. lol!

A cutie in Daddy's arms.

In awe of Daddy.

My 5 month daughter is having open heart surgery.

My daughter is having OPEN HEART SURGERY.


I've said it out loud...I've whispered it...I've cried it.

Once again I am handing it over to CHRIST.  Fear and worry does nothing. but drain today of it's joy. 

     God is in control...I am NOT. No matter the out come...not mater what happens...good or bad. God is in control!  HE created her...HE loves her more then we do...HE had entrusted her to us, but ultimately she is HIS child, not ours. There is NOTHING I can I will PRAY...pray for the surgeons and medical team, the hospital, against germs and infections, for strength for her body and heart, for peace and strength for our family, and for grace. Then I will again hand my fear and worry over to HIM...the AUTHOR of LIFE.

DISCLAIMER: I am about to describe a summary of the surgery and what to expect after. 
If you can't handle that type of thing, then don''t read and further. :) 

     The night before (as in tonight) we have to scrub her down with a special soap they gave us and again in the morning. We have to be there for 6 am in Boston. They are going to cut down the soft bone on the rib cage (the bone that connect the ribs in the middle), they will then pull back her ribs and in order to fix her heart they will take a dime size piece of her heart to patch up the hole (he said it's just like patching a hole in clothes), he will literally tie off the artery that is still open. I don't think he is going to touch the smaller hole in her lower chamber and he mentioned that typically there is a hole in the upper chamber that they can't see and if that's the case he will stitch that hole up.
     I don't know how they keep the heart pumping...I kind of tuned out at that point. I know she will have a pic in a main vein and a breathing tube in. He will then wire the rub cage back together. The surgery should take about 6 hours.
     Lord willing, she will spend about a week in the ICU before coming home. They said the first few days there will be ups and downs with her health, until her heart "gets it" and then she should take off health wise. :) When we come home you have to be very careful how you hold her, due to her bones healing. I'm nervous about that. But once she stabilizes she should take off health wise, grow and have way more energy!

For His Glory,

Thursday, September 18, 2014

God's Mercy towards our Birthday Boy

I'm 3!


       It's hard to believe 3 years ago I suddenly went into labor and Josiah was born...we had no idea if he would live or die. He wasn't breathing, but praise be to God, he finally started breathing and they rushed him to the NICU. God has saw fit to allow us to raise this precious little boy for 3 years now!! I'm still in awe.

As the 3 years have gone by I am more and more in awe of God's mercy towards us with Josiah!

The  First thing I learned was h0w merciful God has been in regards to Josiah's health.
     We were told due to his premature lungs he would have all kinds of breathing issues, including severe asthma. As of this day there is NO SIGN of asthma!! Thank you Jesus! Thank the Lord I found out after the matter, but was later told they had prepped the ICU for after his all day surgery. They did not expect him to handle it well particularly his lungs... to everyone's surprise he was able to go to a typical room/floor. Even when he had the flu he did not need to be hospitalized.

The second thing I have learned is how merciful God has been in regards to his cleft lip/palate.
     Josiah had his big clinic last Friday at Children's Hospital and at one point I was so humbled I wanted to weep. Most of the kids there were there for cleft lip/palate follow ups. You could TELL they had surgery for cleft lips...Josiah on the other hand...not so much!! Sure if you look you can see it's different looking, his nose is some what crooked, etc. I can't tell you enough how humbled I was to see such a HUGE difference!! No it doesn't matter if you can tell or not...but the fact that God allowed Josiah to be barely noticeable...I was speechless...I just assumed the other kids looked like him. Also his tooth that is behind the front row, to everyone's surprise is an extra! That's a good thing! :) Better to have extra , then less I was told. Thank you Jesus!
Rocking Dakota's sunglasses. :)

Last but not least, I learned how merciful God has been with Josiah's therapy.
      While in NH we had Early Intervention for him. They started with O.T. then we had a long struggle with literally teaching him to eat (so many factors I never thought about), swallow tests and more feeding therapy, then finally some physical therapy to try and get him to walk. Praise the Lord, he was walking by about 2 and learned how to walk on the uneven ground outside this past spring. :) But then there was a gap after we moved . After Savannah was born with Down Syndrome we finally got on Early Intervention in this area...Praise God! After evaluations we finally started working on speech therapy, but still have a long way to go, though he is saying a few words! With turning 3 means big changes, he "ages out of E.I." So we started the process of seeing about possibly getting him therapy through the school system and after talking to Savannah's therapist, we decided to try and get an evaluation at a private place and started with North East Rehab.
      Since we still hadn't heard from the school system for further evaluations, where we go for E.I. agreed to allow him to stay in his little 2X2 group through the fall, so he could continue to work on sign language and communicating with kids his age. He LOVES it! We have to pay out of pocket, but I am still thankful there won't be another gap and delay for him! Then Thursday when I took him to his evaluation at North East, to my (and his E.I. therapists) surprise (and delight) was told he qualified and would start right away on therapy. We expected months of waiting and go from place to place for evaluations. God took it one step further and they are also approving him for some much needed O.T and Physical Therapy! Praise God!! I FINALLY feel like we are getting help for Josiah and Lord willing, can get him caught up and strengthened physically.

 Some helpful things I learned (which I'm so excited to have answers):
     The specialist in Boston pointed out he makes A LOT of sounds in the back of his throat. This is bad and will eventually damage his vocal chords, which is a big concern. We don't want to discourage ANY sounds he makes, but instead get really excited and encourage sounds in the front of the mouth. She doesn't think his palate or extra tooth are causing the issues in speech, yet if he hasn't made huge improvements within 6 months she wants to reexamine that sooner then a year.

showing you what the dental team did. :)
     During his evaluation at North East ( I can't tell you how excited I was after meeting his new therapist) she was talking about kids the have weak muscles (make an o face...those muscles) when drinking from a straw stick it far back in their mouths and bite down. Josiah does this!! We had no clue it was due to his weak muscles! Because of that his swallowing becomes uncoordinated and it again comes out his nose. She has a device to work on that. His soft palate needs to be strengthened and he is very nasally. I found out when he is blowing on his food, he's actually blowing out his nose, not his mouth (it's hard to tell his face is all scrunched up) she has a device that will gently pinch the nose closed so he can't use it and will learn to use his soft palate and be aware of sounds from his mouth. SOOO freaking excited about all of this!! :)

Whoops, missed his mouth. ;)

I just want to say that even if God saw fit to not show mercy in any or all of those areas, HE is still a merciful, loving, God. I am a sinful wretch and do not deserve any of it and am so thankful for His sweet blessings and mercy!

No, that is not lipstick! He got into the girls red paint, I guess the sponge brush felt cool on his lips. lol!!

I thought this song was perfect, though I couldn't find Aaron Keyes singing it.

For HIS Glory,

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