Wednesday, December 10, 2014

EMU Stay

It has been a while since I have updated...and I have received the complaints about that. Sometimes I feel like Haddie is a celebrity and I am her PR manager. But to be honest, I am honored that you are still following our story. So I will continue to update. And maybe a bit more frequently.

A good bit has happened since her shunt surgery back in October. On Nov 25th we had an eye muscle strengthening surgery. This was to help with her one eye that was slower than the other. Other than us forgetting to tell them not to give her morphine and her being asleep for 24 hours afterwards making it impossible to give her her went well. Her eyes are improving and she is tracking a lot better now.

We are currently in the Epilepsy Monitoring Unit at Akron Children's Hospital. She's been having little episodes more frequently these past few weeks. When they come on her Haddie's face gets very flushed, her arms go stiff, she gets a panicked look on her face, and her tongue thrusts rhythmically. However, they only last for 10 seconds to a minute. We had caught a milder version of this a few months ago on an EEG and it didnt come back as a seizure. But they have become more pronounced now and our neurologist seemed to think a 3-4 day continuous EEG monitoring would be good for her. So I checked in with her yesterday. And she was a good little girl and had 5 of them for them to record. we figured she would be a booger and not have any this week.

Turns out, they think they are seizures. We dropped a medication last night. I am currently waiting to see the doctor and see what the plan is. They may add another med. The plan is to watch her until Friday but if they see what they want to see we could get out earlier.

Life's good. Haddie really is doing well and while we dont like seizures, these a way milder than what we dealt with in the early summer. But hopefully we will try something that can fix these little ones too. I will update with the results later on.

Seriously, if you are still following our story, thank you. I appreciate your prayers and thoughts for my family. God is good.

Monday, November 17, 2014

Happy World Prematurity Day Update

Today is World Prematurity Day. Their description on Facebook is this: November 17 is World Prematurity Day when we focus everyone’s attention on the global problem of premature birth. Join us in raising awareness.

 I would say that most of you are already aware. Hadassah has made me very aware. Every night before we go to bed, we say a specific prayer for several premature babies and families going through what we went through. It seems to me that we are seeing more and more of this in this fallen world. Or maybe I'm just more aware of it now due to our experiences with it. Either way, we serve a God who is bigger than the smallest baby's problems. Say a prayer today for those who are in NICUs all over the world and for those who God took home. 

We thank God that we get to spend every day with Haddie. He's a quick update: she is doing well. She recovered very well after her last surgery a few weeks ago. No problems with infections or anything like that. She is teething again now and seems to have a little cold that came with that. Next week we head to Akron on Tuesday for an eye surgery that will strengthen the muscle in her left eye. This is a minor surgery we think and hopefully there won't be any issues there. 

She continues to maintain her weight at 20lbs. She's gotten longer though. So far no one seems to be concerned that she is not gaining so we are keeping things the same. 

And that's about it really. Life is good. Hadassah keeps rolling on and is learning new things. It's a slow process but it's not like we are in a hurry any ways. She has her whole life ahead of her and we will progress and learn at her speed. 

Thanks for praying for our preemie. She's a blessing. God is so good. 

Wednesday, October 22, 2014

Shunt Surgery

God is very good. We haven't been hospitalized since last November and haven't had an major issues other than seizures since then. So we are very thankful for that. We knew, however, that sooner or later her shunt could malfunction. And that's what's occurred in the past few days.

Hadassah's head circumference has been going up and has caused some concern in the past. But she hasn't really shown any other signs of a malfunction. Yesterday Kate brought her in for a routine EEG and consultation. They were once again concerned at her head size and the EEG revealed that part of her brain had limited activity possibly due to a shunt malfunction.

Neurosurgery agreed and did a CT scan to check. It was confirmed and so they decided to do surgery this morning at 730am. Overnight they were a bit concerned at her heart rate...she kept dropping into the 50s while sleeping. She is a very deep sleeper and I tried to wake her up some...every time I did her heart rate would bump up into the 80s....which is where a child at her age should be. But then she would immediately drop again. They assumed this a symptom of the pressure on her brain.

Surgery went well this morning. The two lines that come off of the shunt that drain fluid were clogged hence the head growth. Nothing was draining. So they replaced that and said we would wait til tomorrow to go home.

Their only concern now is that her heart rate hasn't improved much. It was in the 70s for a while but dipped into the 50s between 1 and 3. So they did another CT scan just to double check. Neurosurgery took a look and they didn't seem too concerned that it was another shunt issue.

So we are currently waiting to see what the blood work shows. It could be that something else is out of whack, or this could simply just be Haddie. She likes to mess with doctors and confuse them.

We are going to stay overnight and see where we are in the morning. Like I said, God is good. Every day we pray that God will bless her, keep her, and give her peace...and often we pray that he will continually heal her. Perhaps this is His way of doing just that.

We will update again once we know what's happening. Thanks!

Monday, September 15, 2014

Tube or Not Tube

Let's play a game. Take a look at the top picture. That's Haddie and her new cousin Jensen last week. Now look at the picture below. That was taken last night. Do you notice anything different about Haddie?

Yes. She is awake in one picture in one and asleep in the other. Yes, yes, she has a baby cousin on her in one and not in the other. Look a little closer.

Hint: Look at her nose.

Got it yet? Okay, I will just tell you...

Haddie doesn't have the feeding tube in anymore!

Three nights ago Haddie puked up the tube. That happens from time to time. Normally we put it back in. However, Hadassah had puked it up after we had already given her her feeds for the day. So we waited.

Our dietitian gave us a plan a while back that enabled us to take away an NG(feeding tube) feed for every 6 oz of baby food. We got better and better at that and started taking away 2 feeds regularly, then 3. Two weeks ago we hit 4 NG feeds taken away.

So 3 days ago, we left the tube out.  We started feeding her and she hit her full amount by spoon:24oz! She did it. The question remained...could she do it again.

And that answer to that is yes. She did it two days ago and then again yesterday! And she's on track today as well. The hardest part is giving her her medications which are liquid. But if we go slow, or mix them with oatmeal cereal, she does okay taking them.

We are very excited about this. It was a big blow when we had to put it back in a few months ago. We are hopeful that we can keep it out this time!

God continues to use Haddie in mighty ways. I'm not sure very many of the doctors would have predicted that she would be able to do this much.

Thanks for your prayers and thinking of us. God bless!

Friday, August 29, 2014

Home For A Year

Hard to believe that we have been home from CHOP for a year. We came home on the 28th. Unfortunately we had to go to Akron 10 days later...but least we were in Ohio.

Haddie has been doing really well. No seizures since July 11th. And Hadassah is doing awesome on her feeds. She's taking about 12oz of food a day by spoon. She loves to eat and try different flavors. We think her favorite is apples with cinnamon in oatmeal. I think that tastes good too!

She is still working on head control. We finally got our insurance to approve a specialized wheel chair that will allow her to sit up more. This will really help her with head control and movement.

On Monday we went in for an EEG and an eye test. Her EEG looks the same as before...chaotic. But since she is doing great and is progressing we are not going to change anything right now. The good news though is that what we thought were "mini seizures" are actually not. Haddies tongue twitches sometimes and we thought it may be a small seizures. Turns out they arent so that's awesome. We have no idea what they we will just chalk that up to being one of Haddie's quirks! Her eye test revealed that Haddie definitely can see. But a previous meeting showed that one of her eyes is weaker than the other. That's why it turns in from time to time. He thinks that since she can indeed see, it would be worth doing a surgery where they would strengthen that muscle in her eye. We are considering this.

Haddie weighs 20 lbs 8oz. She's maintaining her weight which is okay as we figure out the new feeding plan.

In other great news, Haddie has a new cousin. My brother Jacob and his wife Bethany gave birth to Jensen Jacob on 8-27.

Life is good. God is good. Thanks for remembering us!

Friday, August 1, 2014

Awesome 3 Weeks

It has been an awesome 3 weeks. Hadassah has not had one seizure since July 16th! Waking her up was a great idea and she has been very alert. That truly makes a difference. We have been super excited about the progress she has made even in the past 3 weeks. She has been moving more and more and her feeding has really taken off. She started off 3 weeks ago only taking maybe 6-10 bites off of a spoon. She now takes over 70 bites in a day.

The dietitian at Akron told us if she takes a certain amount in a day, 72 spoonfuls of stage 1-3 baby food, we can take away one of her feeding tube feeds. She has pretty much hit that every day for the past week!

God is good.

Haddie has been enjoying time with Kate's family who has been down this week visiting. Speaking of Kate's family, please say a prayer for Kate's uncle Tim's church who is on a missions trip this week out in Arizona. They are spreading the good news on a Navajo reservation.

Lastly, we have started a website to help others out who have had similar situations as us. Yes, there are others. We are not alone. Be sure to spread this site around so that we can encourage others with the love of God.

Have a great weekend!

Saturday, July 12, 2014

A Whole New Haddie

Wow. It's been  crazy three weeks for me. Work camp and then back to back weeks of church camp. That's the life of a family minister...and I'm okay with that. 14 students gave their lives to Christ the past two weeks. It doesn't get any better than that!

During the first week of church camp Kate took Haddie up to Akron while I was gone and we jumped on a new plan. A plan that seemed rather crazy and didn't make a whole lot of sense. Dr.Enlow believed that Hadassah was too asleep and that could be causing the large amount of seizures. She was having between 15-25 a day and we were having to give her the rescue dose every other day almost. He said that some babies on seizure meds get to a point where they are so relaxed the seizures take over.

So we woke her up. We lowered the Sabril medication and let me tell's working! She stayed with my mom and dad this week and did awesome. The first couple of days she had around 6 seizures. The next day (Tuesday I think) she had around 20. But then she dropped back down for the past three NONE. Zero. Nada seizure.

And...she's become 10x more alert than before. She's reaching, she's grabbing, she's kicking, and she's tracking with her eyes way better! Take a look!


God is good. He answers prayers. Sometimes it takes longer than we want...and sometimes He even says no. But he said yes this past week and we thank Him for that. The plan now will be to continue to lower the Sabril to a lower dose that will work for Haddie. Thanks for your prayers. God bless!