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 point.....it'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.

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 do...so 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,
 

Raising Funds for Therapy and Surgery

Some therapy items from E.I.

I can't believe 3 years ago I was in the hospital on bed rest wondering if I would make it to 24 weeks...if Josiah would live...if I would be okay. God was/is merciful and our miracle baby is going to be 3 in a few short weeks!!

With turning 3 though means aging our of Early Intervention. As in THE DAY he turns 3, no more therapists coming to the house, no more speech therapy group, no more free "rented" resources from them. Early Intervention has been there since the beginning. From occupational therapy (strengthening particularly his core/ upper body), to nutritionists, weight check ins, feeding & swallowing test, feeding therapy, to eventually teaching him to crawl/walk before moving from NH. Though he's still not talking, I have to remind myself he's come ALONG way since birth!

Savannah's therapist does certain message exercises to struggle her muscles orally to help her feed better, which will in turn help her when it comes to talking (babies with Trisomy 21 struggle with that). I am VERY frustrated that no ever mentioned, did or taught me to do that with Josiah. He didn't orally eat so they knew his muscles needed to be strengthened eventually so he could eat. We have learned that's one reason for the delay in speech...his muscles are too weak. So WHY didn't anyone work with him or teach me to, from the beginning??!? I had no clue back them.

Here's is a video of me sort of doing one of the messages. I'm not doing it properly because I was trying to get her to laugh for the camera. :)

So where does that leave us? We are waiting on his evaluation with the public school. We have an apt at the end of October to hear what they have to say. I am also calling private therapy locations that the E.I. therapist recommend to book evaluations. He has a clinic on the 5th with the surgeons and will need a letter form them for the insurance and then we have to pursue trying to cover his therapy.

So in the mean time, God has shown His mercy again, Josiah's E.I. therapy group is able/willing to keep him on through the fall session as a community kid!! The downfall is we have to pay for them completely out of pocket and he will go from 3 days of therapy a week to 1. BUT there won't (shouldn't be at least) be a gap in his speech therapy while we work on finding him some where else to go. :)

Then as you know the plan is for Savannah to have open heart surgery. Right now we are looking at the second week of October but we shall see. I am working on finding out what the insurance covers, making sure she is covered for it, and if they/I need anything.

That being said I am looking to help my husband out with raising funds to pay for Josiah's speech therapy and any "tools" we will now need to buy, plus help cover any medical bills from Savannah. I am doing that by selling Lilla Rose and Jamberry Nails.

You can "like" my lilla Rose Facebook page to keep up to date with new styles and sales, here: https://www.facebook.com/LillaRoseChristen

My website is: http://www.lillarose.biz/christen 

You can also "like" my Jamberry Nails Facebook page to keep up to date, here: https://www.facebook.com/ChristenJamberrynails

My website is: http://christenkieffner.jamberrynails.net

I have an open party going on until 8/31 if you would like to place and order. :)

Thank you for reading all my ramblings and explanations. If you have any questions feel free to ask! :)

For His Glory,

Heart Surgery(?) and Sickness

Hello World!

I can't believe it's been about 1 1/2 months since Savannah had her originally tube placed! I've had several people ask me for updates...it's hard when things can change several times a week.

blurry picture of the feeding machine from Naomi :)

Getting a tummy full.

 

     So far Savannah has been good about not pulling her tube out. She's only pulled it out 3 times. The first and last were about 3 weeks in and (she accidentally pulls it out by sucking on her fingers then her finger gets caught on the tube) she pulled it out a few days before we where going to change it anyway. The 2nd time though, she only had it in for about two days, due to the arm bands being WAY to big and causing them to fall off. Besides she hates the arms bands, since she can't sooth herself. A friend who is a genius by the way, *wink* suggested newborn baby mitts. Genius I tell you, genius!!! She can still sooth herself by sucking on the mitts, but her fingers don't get caught.

Loving my mitts. ;)

     Last Monday the 11th we went into Boston to see the cardiologist, to find out if the surgeon wanted to schedule surgery or not. Much to my mixed feelings, we found out that they DO indeed want to schedule open heart surgery. :( She said they would be calling me to schedule the surgery, that the surgeon wanted to schedule it on 2-4 weeks!! I was not expecting them to do it SO soon! She suggested that I push for 4 weeks to give Savannah more time to grow before surgery.

Hey mom, here's my foot!

It's been a crazy two weeks...Josiah and Naomi got sick from being at the doctors (they both put a toy in their mouths.) They then passed the germs on to Savannah! I also realized that 4 weeks would be the second week of September, which is when I scheduled us to start school. Eek! So I have also been in "full steam ahead mode." We started school the next day, but I am still prepping, organizing and scheduling, since I wasn't finished with that yet.

Sick, breathing hard, just want Mama!

     By the end of the week I still hadn't heard from anyone about scheduling her surgery and was getting frustrated! If they were scheduling surgery in two weeks that would be here before you know it and I have three others kids to make arrangements for, plus I would like to know what to expect regarding surgery and recovery. So I called the cardiologist (since I had no idea who the surgeon is and how to even reach him) and found out that the board of surgeons hadn't even met yet, so they hadn't discussed her case! What!!? That's not what I was lead to believe!!

Sick, sleeping on Mommy.

     They called me back Friday after talking with the surgeon and cardiologist. I found out Dr. Warren is her surgeon, he wasn't able to meet with the board of surgeons, but that they are meeting THIS week and will call me NEXT week with an exact date for surgery. To help me out and give Savannah more time they agreed to shoot for the second week of October, unless she takes a turn for the worse. So we have crossed out the 2nd week and were told to tell family and friends...Lord willing we will have an exact date next week.

Crazy early morning shot, by Naomi. :)

     No, I still don't have any details on the surgery it's self, expected time in the hospital, and recovery time.We did see the cardiologist again yesterday and were told to keep an eye on her breathing do to the combination of being sick and her heart. Lord willing we are seeing her again on Sept. 2nd.




For HIS Glory,