The Next Surgery

Today we met with the Neurosurgeon to see what we do next regarding Suzie's head. Her head has grown 1.2 centimeters since three weeks ago when we last saw him. So like we had predicted, the doctor decided that she needs a revision on her shunt. The surgery is scheduled for next Friday at 7:30am. The most likely problem is that the valve has some debris in it or one of the catheters on the ventricle end is partially obstructed. That would be much simpler than if they have to replace the entire shunt. She most likely will only have to stay in the hospital for one night and we can stay with her. Please pray for wisdom for the doctors and that the issue would be easily resolved and that she would recover quickly.

I had an emotional morning thinking about my baby girl going in for surgery again. I think it will be harder on all of us this time since we are so used to having her here with us all the time now. But we know that we have SO much to be thankful for and we praise God for how well Suzie is doing. Thank you so much for your prayers!

Here are some of our recent family pictures:)

Shunt Update

Two and half weeks ago we were told that it was likely that Suzie's shunt was not working properly. The doctor said her ventricles were much bigger than they should be and her head size had gone from the 2nd to the 60th percentile. So we were very eager to set an appointment for Suzie to be seen again by the doctor. The only thing standing in our way...getting it approved by our insurance!! After calling multiple offices several times a week, we finally got everything approved and were able to make an appointment. The ultrasound is set for 7:30am next Thursday at Children's Hospital. As much as I am not a fan of sitting in rush hour traffic at that hour in the morning, I am just so glad that she was able to get in so soon! She then has to see the Neurosurgeon at 12:45 that afternoon. So we'll have five hours or so to kill...with a 10 month old. No biggie:)

I'm 90% sure she is going to need a surgery to repair the shunt as her head has grown another 1/2 a centimeter since she has been home. A 1/4 of an inch doesn't sound like much, but it brings her into the 72nd percentile for her head size. If she continues to grow at this rate, she'll be off the charts in no time. Please continue to pray for our little girl and for her possible surgery coming up. We are reminded daily to trust in our sovereign and good God. There are so many times every day that I just look at her and praise God for what He has done for our little girl.

Here are a couple recent pics:

Two Babies on One Day!!

Yesterday was a very special day for me. Two of my very best friends gave birth to precious little girls.

At 3:10am in Dallas, Texas, my friend Karyn gave birth to her first child, Calla Grace Hughes. She was 8lbs. 8oz. and 20 1/2 inches long. I really hope it will work out for Suzie and me to fly out to Texas to meet her soon!! Here is their sweet baby:


Then at 9:46am in Lancaster, California, my sister gave birth to her third child, Ashley Sharon Case. She weighed 7lbs. 15oz. and was 20 inches even. I was able to spend some time holding my precious little niece last night. I can't wait to see her again! Here she is:

Hilarious

Suzie gets in these moods where she thinks mom is hilarious. She has developed quite a hearty little belly laugh that is so adorable. You see it especially in the first video, but sometimes she will laugh even harder! It's so funny.

What's Happening

Here are a few things that Suzie has been up to lately:

1. Going to Church
We are so thankful that Suzie has been cleared to start going to church! We can't put her in the nursery for a long time, so we're trying to figure out just how to care for her while we're there. For now, Kyle goes in for first service to minister in Juniors. Then I come with Suzie for second service and we sit outside together, or Kyle watches her while I go to the service. It's not perfect, but it is WONDERFUL to be there as a family! Here she is all dolled up for church. Yes, that is a BIG flower! But all the other bows we have are too tight on her head:)


2. Getting Mobile
While Suzie isn't quite crawling yet, her favorite form of moving around is definitely rolling. We can't leave her anywhere by herself for too long because you never know what she might roll into! She is starting to tuck her legs under her like she wants to crawl, but her arms are still pretty weak. I think she might end up doing tummy scooting rather than crawling. She has already done a few tummy scoots the past week. Here is a little video of her rolling onto her tummy and then back onto her back.


3. Gabbing Away
It's so fun to hear her chat away! She now is incorporating consonants into her speech. "Ba ba" and "Da da" are her favorites. When she wakes up happy, we just hear her gabby away in her crib. She also loves when we sing "Itsie Bitsie Spider" to her like in this short video.


4. Gaining Teeth
That's right, she now how two little bottom teeth that have made their presence this past week. No symptoms other than having no interest in eating at all (and of course tons of drool). She wants to put everything in her mouth EXCEPT her bottle! (I couldn't get a picture of her teeth because her tongue is always in the way:)


5. Goofing around in the Bath
Suzie has always really enjoyed her bath time, but she just recently started to play in the bath. She loves to splash with her legs like in the video below.


6. Grasping Different Concepts
She is doing GREAT in therapy. It is such a joy to see her progress. Physically she is still a little behind her adjusted age because her muscles are tight. But cognitively she is right on track for her adjusted age, and even a little ahead in a few areas. She is transferring objects from one hand to another and bringing them together midline. She can pull three objects out of a bowl and understands the concept of cause and effect. She knows her name and also can imitate us. Here is a video of her imitating my squealing:)


7. Getting Social
One thing that has really helped her in her therapy is that she no longer has stranger anxiety. She will now tolerate lots of people and not just Momma. Yesterday she had a wonderful time with our family for Mother's Day. Here she is with her cousin, Shelby.

One of my best friend's, Joy, and I get together every week with Suzie and her son, Grant. Here are the kiddos together!

Fun with the Girls

It seems like when you have a baby, you basically eat, breath, and sleep motherhood! It is a wonderful job and I am so blessed to be able to spend so much time with my little girl. But I have also been so blessed to spend time with the incredible families in our Bible Study. We have the neatest group of people in "The Knot." Everyone is so giving and loving...as you all saw by the amazing garage sale they did for us! Every other Thursday night, some of the ladies from our study come over to our house so that we can have some girl bonding time. It is one of my favorite days. These girls are hilarious and we have so much fun together. They come over at 7:00 and they usually are here until 10:30 or even later! We just can't stop chatting. Here are some pics from our last gathering:



Top Row: Ashley, Kim D., Kim C.
Bottom Row: Me, Annette, Sarah

Four of us also live in the same apartment complex, which is very neat. We are all in different stages as far as kiddos go. Sarah has two little girls and one more on the way. Kim D. has twin boys. I have one little Suzie. Annette is expecting in August. Kim C. is ready for a kiddo when the Lord allows. And Ashley is waiting a little bit before having kids. It is such a blessing to spend time with these great gals!

Wake Up Call

After visiting our friends at the NICU reunion on Saturday, I was surprised to hear how many of the babies had problems after coming home from the hospital. Even a few of the babies who soared through their time at the NICU had been checked back into the hospital for various reasons. We have been so blessed to have Suzie thrive since she's been home. She hasn't had any problems with feeding, breathing, or even so much as a cold! We are so thankful for the good health the Lord has given her.

Yesterday morning, however, we received a bit of a wake up call. I took Suzie into the Neurosurgeon for a cranial ultrasound just for a follow up. On my way there, I was praying that everything would go okay, but I don't think I even considered there being a possibility that there might be a problem. But after the doctor looked her her ultrasound he told me that he thinks her shunt might not be working properly. Her ventricles were much larger than they should be and her head size has gone from the 2nd percentile to the 60th percentile in a matter of a couple months. He did a tap on her shunt and drew out a small amount of fluid. The fluid was crystal clear, which is a very good thing, as opposed to when she was in the hospital and the fluid was a dark amber color because of the bleed in her brain. He then took off the syringe attached to the tube going into her shunt and watched the fluid drain. He said that it was draining at an okay rate insinuating that the shunt is working properly. Therefore he thinks that there might just be a partial obstruction or an obstruction was there but has now cleared. He decided to wait a month and have her come back in. If her head size and ventricles have increased, he will have to operate.

If they end up needing to operate, they will open up her original incision on the back of her skull. There is an 85% chance that the problem is the valve, so they could just replace it and be done. If the problem is not the valve, then they would have to remove the entire shunt and replace it.

After being out of the hospital for almost seven months, I have become so complacent and started to take things for granted. All the fears that we had in the hospital came flooding back to me and I began to hurt for my little girl. This is a reality that she will have to face for the rest of her life. The possibility for emergency shunt surgery could happen any day in her life. The doctor told us to cross our fingers in hopes that the issue would resolve itself, but we know that we have a much greater hope than that. We have a God who is both in control and completely good. He knows our needs, He hurts with us, and He will never put us in a situation that is not best for us. I am already seeing that He is using this to cast me down at His feet in surrender to Him.

Please join us in praying for Suzie. Pray that if the Lord wills, He would allow the obstruction to clear up on it's own so that she does not need surgery. Pray for wisdom for the doctors and timeliness to catch it quickly if she does need an operation (a month seems like such a long time to wait!) We would also ask for continued prayer for her development, as this is a reminder to us of the brain damage that she suffered at birth. And of course, please pray that God would use this for His glory and that we would respond in a way that is pleasing to Him and for us to have a strong testimony.

Thank you so much for thinking of us! We are SO abundantly blessed!

NICU Reunion

On Saturday, we took Suzie to the Huntington Hospital NICU reunion. It was so good to see some of our friends that we made while Suzie was in the hospital. Their babies were all doing so well and it was so fun to see them after being out of the hospital for 6 1/2 months. Of course, we forgot our camera. Our friends Ed and Mina sent us this photo of the six of us. Eliot was born 10 days after Suzie and we became instant friends. Eliot is doing so well! I am hoping our other friend, Heather, will send us a couple more pictures soon too!