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,

Lilla Rose Sale and GIVEAWAY

Lilla Rose is having an awesome sale going on.

1. There are several NEW designs and they are 10% off!!!

2. Soon to be retiring designs are 20% off!! Grab them while you can.

3. Every purchase you make you will be entered into a drawing for a design of your choice.







Any profits I make on sales will be used to provide Josiah with speech therapy, since he will no longer qualify for E.I. come next month. Thank you for helping us with this expense, we so appreciate it! :)


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,

A Different Kind of Flower

For my sweet Josiah...

A Different Kind Of Flower

She had been so depressed after the birth. Depressed and guilty and 

angry. She had been so good all through the pregnancy; it just wasn't 

fair. Her baby wasn't perfect. Her baby had a cleft. 

The front door closed in the other room. She knew her husband was home. 

He was later today than usual. Looking up, she saw him come into the room. 

He held out to her a gorgeous bouquet of roses. But wait, among the roses 

was one lone orchid. It was a beautiful orchid. With splendid color and 

plump. Lush petals, different from all the other flowers in the bouquet. 

She looked at her husband and stroked the errant bloom. 

"What's this?" she asked him. 

"Honey," he said as he sat beside her, "this flower is our son. Every

other baby in the nursery had rose-bud lips. But his lips were open, like

the petals of this orchid. Everybody else had a rosebud, but we had the only

orchid in the bunch. I just wanted you to see how beautiful an orchid is,

even among the rosebuds." 

She smiled. The orchid was beautiful after all. How could she ever had 

missed the beauty of the orchid among the rosebuds? 

- Joanne Green 

Josiah at this point. :)

For His Glory,

An update at Tufts Medical

Well we finally made it to Tufts Wednesday afternoon and I didn’t get lost! Woo-hoo! Though it’s good thing I had the written directions, not sure where GPS was trying to bring me. ;)

We immediately went to cardiology and Dr. Zilberman was there, so nice to see a familiar face. There are 3 cardiologists through Tufts floating in Lawrence; he was the first one we saw and my favorite. He helped me get Savannah and our stuff up to the inpatient floor and made sure they knew what we are here for, etc.

On the monitor waiting...

Let me tell you, they move quickly here! Wow! They got everything done within the first hour or two! I was told they wanted to take blood to test her iron, electrolytes, etc (due to the diuretic she’s on), put an IV in and an NG Tube, plus a chest x-ray to see the tube and fluid amount. I was TOTALLY unprepared when they came in the room to put the IV and NG Tube in back to back, listening to them talk, I didn’t think they were going to do it in the room. They suggested I leave the room…I selfishly wanted to I wouldn’t hear her scream. But I couldn’t leave her! Honestly, I know its minor compared to SO many things. But it was incredibly hard to hear her scream and gag as they didn’t everything!

Exhausted after all that screaming, but it's in!

After they got the IV and tube in and the x-ray done we spent the next few hours meeting various specialists from departments that are helping her. What are really liked was this morning they had what’s called a “family medical circle,” and the various doctors and specialists come in and stand in a circle in your room (then we sing and chant…j/k J) , they go over everything making sure they are all on the same page (Tufts is a training hospital so they train meds students that way). We go over any question I or one of them might have, set goals for the day and what our game plan is for Savannah over all. I was able to take notes and ask any questions I might have.

Mom, there's something down my nose!

She had a hard time with the first tube feeding. I wound up holding her through it as she gagged, cried and made faces. The next feed she gagged when I nursed her, but was better with the tube feeding. We are all excited and I am thankful to the Lord that she is doing great with both nursing and tube feeding. I can’t imagine either one must be comfortable with a tube down your throat! This is why I didn’t want her to have to go through having an NG tube. She is struggling though with getting tired a lot faster when I nurse, plus she isn’t nursing nearly as long. We will be discussing that today. Praying that it’s just due to the tube in the nose and will improve after it’s removed.

Look how cute I am! My nurses just love me! :)

We have her on a schedule (basically the same as Josiah), every three hours she gets fed 2oz via tube while I nurse her before hand.  Skip the 3am feed so we can get some sleep (midnight is going to be hard though). I will meet with nutrition and come up with a ratio for 24 calories before going home. Whether it’s directions for straight formula or fortified breast milk, so that I’m prepared. I’m training to listen with a stethoscope before each feed to check that the tube is still in the stomach.

Her lab results where great! She is not anemic at this time and everything else is within normal range. We have to keep an eye on fluid levels in her lungs due to the increase in fluids. Last night her oxygen was dipping a bit, but it’s gone back up (Thank you Lord) and she is off the monitors now! J

Missing my family and the noise, so I'm hanging with mommy.

They are still talking and planning for open heart surgery. The cardiologist all agree her congenital heart failure is not really showing signs that it will completely close on its own. Yet they say they have been completely surprised before, so we shall see. Though we are praying she will be spared surgery, we are thankful to the Lord for knowledgeable surgeons and previous parents paving the way for us! The Lord is so good and we are grateful no matter how HE chooses to heal her heart!  I know I was asked about her heart…she needs to gain weight for two reasons (other then just growing). She has to weigh 10 lbs before they will attempt surgery. Also gaining weight and getting bigger will help her heart not strain so much and can help aid it in closing the hole. Weight gain issues are common in babies with Down Syndrome.

I believe that covers all the main areas that I know so far I am waiting for our “family medical circle” today, I will know more then, but I do know the nurse is preparing us to go home today (though we haven’t gotten the official orders yet)! I am exhausted at this point, but SO thankful to the Lord, that everything is going well!

For HIS Glory,

God be my Strength

Cooing and smiling at mom!

Yesterday we had Savannah's Cardiologist appointment...I was not looking forward to it. I knew weight gain had been slow. I even contemplated canceling the appointment and rescheduling it for a later time, in order to give her more time to gain weight...but I didn't.

I met the third and last cardiologist. She was very nice, I liked her immediately! I appreciated how she treated me as an equal and spent time explaining everything and answering any questions I had.

She explained that she is concerned about Savannah's weight gain and how the lack of weight gain actually put more strain on her heart. She showed me her chart and how she has slowly fallen off the chart for her age. As she put it, "she's wasting away." Though Savannah HAS gained some weight since birth! She is at 8.4lbs at this time...that is way below what she should weigh though.

It's our little "peanut"

I asked about waking her several times through the night. You see Savannah started sleeping through the night! Every mother's dream, right?! Nightmare for me though!! Besides who in their right mind would wake a sleeping baby?! ;) She is so exhausted from just breathing (it's a workout on it's own, nursing even more so), that she sleeps a lot. Waking her would not allow her body to get the rest it needs and breastmilk alone does not supply enough calories. She burns so many calories that we really need her to take a bottle with fortified breastmilk (which I, hate, hate, HATE...I don't want her on formula, even just a little), but she wont take a bottle even for the therapist and she's not getting enough through the syrenge! I would have to feed her all day with it. Which I do spend the majority of my afternoons doing just that.

Needless to say, unless she took a bottle there is nothing else I can do except have an NG Tube placed. The NG Tube is the issue I feared and dreaded the most (besides OPEN HEART SURGERY) and now we are facing that. Josiah use to rip his out ALL the time in the NICU! Augh!! At least she can still eat if it gets pulled out until a nurse can put it back in.

We found out Friday that the health insurance will not continue covering for the VNA nurse to come out for weight checks. The doctors are NOT happy and disagree with that decision. So her coming home with an NG Tube should get that started again, since it WILL be medically necessary (we hope!).

So the cardiologist asks if I will need time to get all my "ducks in a row" before. I like of course! I have 3 other kids I have to get situated. I start to tell her that next will be REALLY difficult to find help, but if she gives me a few days, I can probably figure something out. Her response..."No I mean this needs to get done. As in I want her admitted tomorrow (Wed.)." Umm...Does she have kids?!? HAHAHA! All I can still do is laugh at that! She wants me to be at the hospital for a few days and all I'm given is ONE afternoon to get this ready!! :p 

Hanging out with Naomi. :)

SOOOOO needless to say, I'm just as stressed about getting everything situated as I am about the procedure!!  God has provided help for at least today and I'm getting ready to head into Boston. All I can do is hand this over to GOD, HE is in control and is my strength, my help, and my comforter.

The adventure begins....


For HIS Glory,

Postponing an NG Tube

Excited about the good news! :)

There is BIG news after Savannah’s Cardiologist appointment today!! I thought it would be easier to write it on my blog (more room).

(For my sweet readers I haven’t been on in almost a year!! In that time I had a sweet baby girl, but I will update you all on that later.)

Savannah weighed in at 8.5 lbs!!!! That means she at least gained an ounce in one day (the doctor’s scale is usually lower then the visiting nurse’s, so it might be more). The cardiologist was VERY happy to say the least! She kept thanking me for my hard work.

For those that don’t know, Savannah plateau on her weight gain, then started to drop (she was labeled failure to thrive, like Josiah) and we found out she need’s to weigh at least 10 lbs for her open heart surgery, yet she was having a hard time getting to 8 lbs.

The cardiologist wanted me to pump and supplement my milk with formula, since you can’t physically make more than 20 calories and they wanted her to get at least 24. She is burning too many calories when she breaths due to the hole in her heart (it’s like a work out every time she breathes).

Soooo…I saw a feeding specialist twice and we tried various ways to get her to take fortified breast milk. Various bottles, a new device they use (it sort of looks like a rubber medicine cup), and an SNS system (it hangs around my neck and I tape a tube to me, so when she nurses it drips into her mouth for her to get both.) Any hoo, she is so smart and doesn’t want anything but mom and has refused all of our efforts. 

Attempting Rubber Cup

I have been trying over and over again for about 3 weeks. I finally decided to use a syringe to feed her with. I figured if she takes her medicine that way, why not milk?! It’s slllooowww going and I spend a good chunk of my day just slllooowwlyyy squirting 1 oz in her.

Syringe Feeding

But between nursing and that, it’s working!! Praise the LORD!! She has gained weight! She averaged out at 34 grams a day (they want at least 30 a day).  That being said, Savannah does NOT need an NG feeding tube put in!!

The cardiologist said she would go ahead and present her case the surgeon board next Tuesday and so we could move ahead with setting up her surgery in a month or two (so that right there is good, they wanted to do it immediately at 3 months originally). Then she decided to send us in for a cardiogram so we could she where the hole in her heart was at (same or smaller).

MORE good news….the hole has gotten SMALLER and is trying to heal itself!! Praise be to GOD!!!!! Joseph and I have been asking the Lord to spare her the surgery, yet we trust HIM if He chooses to heal her heart through the surgery.

That being said I don’t have to go back for another 3 weeks. Our nurse will continue to come twice a week to weigh her. If she continues to gain we then don’t have to go back for another 2-3 weeks and….we can plan of PUSHING THE SURGERY OUT until she is 5-6 months (as long as she continues to gain.). If that happens we will at that time look at heart out again and possible push it out further or even cancel it all together, if the Lord heals it on it’s own.

Trying to smile at mom.

We want to thank everyone for their continued prayers! And ask for weight gain and healing for our sweet Savannah Rose. 

For HIS Glory,