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!

Sunday, July 6, 2014

The Newest Plan

Kate, her mom, and Haddie went to Akron to see our neurologist on Monday. It has been a rougher couple of months. Haddie has been having seizures every day. And it seems like every other day we have had to give her the rescue dose because she ends up having too many. We would call Akron and they would tell us to just stay the course. The course was to slowly increase Haddie’s Kepra dose and see what would happen. Unfortunately, that really wasn’t working. Kate and I both knew it but we had to make sure it wouldn’t work before trying something else.

Monday we got a new plan of action and we are very hopeful it will work. The doctor said that we are at the max dose for Haddie’s med called Sabril. That’s the med that works on the seizures that are happening “under the hood” or behind the scenes. Those seizures don’t show themselves physically. He says the med does not seem to be fixing those seizures. In fact, that med is probably making Haddie sleepier. We have noticed that as we have increased both of those meds, Haddie has been sleeping a lot more.  He says that sometimes sleepiness can actually bring on more seizures. The body relaxes and that opens the door for the brain to go wild with seizures.

So we are brought down the Sabril and kept the Kepra the same. We are totally okay with this plan. The longer Hadassah is on Sabril the greater her chances of losing part of her eye sight.

I wrote this blog on Monday but didnt't get a chance to post it until now. So here's the best seems to be working! Two days ago Haddie had about 12 or so seizures which is way better than the weeks before. Then yesterday she only had around 6. So we may be headed in the right direction! Time shall tell. 

It's going to be a great week for her and my mom and dad...she's staying with them while Kate and I are at church camp. 

Thanks for your prayers on this. We are so blessed. It’s awesome to have Haddie at home and to see her improving on her feeding. She is doing awesome on the spoon and cup drinking. She weighs somewhere over 20 lbs. Hoping that down the road we can get that feeding tube out again. And we are also hopeful that by getting the seizures under control, Haddie will hit some more milestones a bit quicker.

God is good.  

Tuesday, June 10, 2014

13 Months

It's been an eventful few weeks! Hadassah started it off by passing her swallow study which was great! But then her seizures started acting up again. Anybody remember the roller coaster analogy?!!! She had an allergic reaction to the newer seizure med they were giving her and she broke out in a rash all over her body. We also think that that med was causing some of the seizures as well. So we dropped that medication and things got a little bit better...or at least for a while. Then last Tuesday and Wednesday she had several seizures each day. So we went up on her other seizure med and that seemed to do the trick. She didnt have a seizure on Thursday or Friday and only had 4 on Saturday and Sunday. I know, 4 probably seems like a lot to you but when she's had up to 10-15 in day...we will take 4. Since then she has started to have some more each day. Today I called Akron and I'm awaiting a call where they will most likely tell us to increase that med again...which I think will help.

So that's the crazy not so fun news. The good news is that she continues to learn and progress despite the seizures. She has really been enjoying eating stage 1 baby food off of a spoon. She loves the strawberry/apple mixture. She will take as many spoonfuls of that as we will give her. She also likes, peaches, sweet potatoes, carrots, and peas. She's not so keen on the broccoli...who can blame her! Earlier today we saw speech therapy and they started to give her the stage 1 food via a cup. This will help her prepare to use a cup more and more as we progress. We are transitioning away from the bottle and using the spoon and cup more and more. They were also happy to see how Haddie's motor skills are improving.

She currently weighs close to 20lbs and is 26.7in long . As time goes on we just know that God is good. Haddie keeps us on our toes and sometimes it is tough...but she is here. We'll deal with the negative stuff that happens and rejoice in the positive. God is good in both situations.

Hope that you all are having a great summer. Please pray that we get these seizures under control soon. Summer gets busy and it would be a blessing to not have to worry about that!

Tuesday, May 20, 2014

Easy to Swallow

Today was a good day. Well every day is a good it was just easier to believe that.

Haddie had her swallow study today at Marietta Memorial to determine if she is still aspirating or not. To be honest, we didn't expect her to do great. She has been taking a little bit of baby applesauce off of a spoon the past two weeks and seemed to be doing okay with that. However, two weeks ago we tried a thickened liquid with our speech therapist and Haddie choked on that. So we went in thinking that she may pass on "pleasure feeds" such as applesauce and other stage 1 baby foods but probably would fail any liquid tests. That would mean that she would have to get  G-Tube in her belly to receive the liquids.

We were wrong. She crushed it. She was barely awake too which usually causes her to choke. She took 3 big swallows when we offered her applesauce on a spoon. Then we tried a nipple filled with some stuff and she did okay on that too. I suggested to our speech therapist that we might as well try the bottle since she hadn't aspirated yet. They made the milk thicker like honey and she took 4 big swallows. She did all of this without choking or coughing.

So in basic terms, she passed and passed well. We will now start to feed her milk by mouth with the spoon and the bottle but will do so with thickened milk. Whatever she does not take by mouth we will still put into her feeding tube. We will do that until she no longer needs the tube because she is taking everything by mouth. We will also be able to give her pleasure foods as well. It looks like we have avoided the G-tube. Once again, that wouldn't have been the worse thing in the world but it was another minor surgery and to us, a step back.

Thank you for your prayers. God is good. Do they make bumper stickers that say "Proud Parents of a Baby That Can Swallow Well"? They should.

Saturday, May 10, 2014

1 Year

Time is an amazing thing. Sometimes it flies and sometimes it stands still. Some things that happened years ago only seem like days and what happened last week I can barely remember. To God, a thousand years is like a day. I've had days that seemed like a thousand years. And as we look back and remember, we can put ourselves in those moments that changed our lives.

A year ago today I was eating an awesome breakfast that my wife's aunt and my mother-in-law fixed up. We had just came home from the hospital the night before and we all were enjoying time in New Jersey. Well, all except my wife, that is. Her belly was hurting her a bit. That was expected though. She was still recovering from the amazing fetal surgery they performed on her and my daughter at the same time 2 weeks before. And from the Walt Whitman Bridge to Hammonton there were a lot of potholes. So I blamed it on the potholes.

Kate's mom however started to notice a pattern of these stomach pains that were coming to Kate. They had a rhythm. They could be timed. They could be contractions. And since we were only at 27 week and that contractions could really be bad for Kate and since we had been told that an early birth would not be good at all for our baby...I kept blaming the potholes. But we called CHOP just to be safe and they wanted us to take the potholed road back to see them. So we packed up and headed that way.

On the way the pains became more intense. They had a room ready in the SDU as soon as we got there. They hooked Kate up to a contraction machine. It didnt register any contractions. The nurse thought it was just pains. But then a doctor came in. She disagreed after doing that test that I don't care to write about. She was 1cm. Not good. She gave us an hour to wait and redo the test. She said if the contractions hadnt stopped by then we would have to do a C-section.

 In that hour we talked with a few NICU doctors who would be at the pending C-section. They asked questions about whether we would want to resuscitate. They talked about how she would probably not be able to breathe on her own. They talked about how her quality of life probably wouldn't be very good. They said that sometimes the best thing to do is let them go. They did their jobs. But we did ours. We told them we would cross the bridge once we got there and we would let God and the baby decide.

The doctor came back in and redid the test. 2cm. It was time. They took Kate down the hall to the OR. I put on the gown and cap and sat in the room. All I could do was pray. That's probably the best thing I could do. Then they called me back.

I had only seen this scene on "A Baby Story" before when Kate had turned the channel to TLC. There were a lot of doctors and nurses and they had that blue sheet pulled up to Kate's head. So I went and sat behind the blue tent with Kate and held her hand. Time ticked slowly then. I stood up once to see where they were at in the procedure. I'm not squeamish but I can tell you that I sat back down rather quickly. They seemed to be getting somewhere. Then all of a sudden they said "get ready, dad". I assumed they were talking to me...and I was right. They said "stand up now". And as I did I saw them whisk this little thing into another room where the NICU doctors were waiting.

Time has never gone slower than those moments where we waited. We had tried to prepare ourselves for the likely outcome. I kept waiting for them to come out shaking their heads. I played in my head what my reaction would be to that. I'm sorry to go there...I'm sorry my mind went there...but after they have assured you the worse will happen, it is hard to stay positive. But we did our best. We tried to have faith.

Then a doctor came to us and said that she was breathing. That was good news. 2 minutes later another doctor came out and said she was breathing on her own and her stats looked good. These doctors that were giving us updates were the ones that had taken care of Kate the past 3 weeks. You could tell that they were surprised and excited. One of them had taken a picture on her phone.

Then they told me I could come back. I will never forget the moment I was baptized into Christ, and the moment Kate walked down the isle. And I will never forget that first encounter with my daughter. She was so little. I'd never seen a baby that small. And she was moving and breathing. I leaned down and decided to take a video. I said her name and at that very moment her hand shot up and grasped my finger. I don't really have words to describe the feeling that came with that moment.

I went back out and shared the good news with Kate. Then they wheeled our baby out into the OR and prepared to take her to the NICU where she would spend the next 4 months. Kate could only see her little hand. It wasn't until the next day that she was physically able to go down and see our little girl.

videoAs I look back at that day, I can't help but think of how gracious God was and is to us. There is NOTHING we had or have done to deserve the outcome we received. Some of you may think differently. But I will stand by that. God is great. We are nothing. Yet he showed us that he had a plan. Please don't lift us up and put us on a pedestal. Yes we had faith. This blog was created to share the story and to be a witness. But I would be lying if what I wrote and what I felt sometimes went against each other. We are not super heroes of faith. We just held on to the only thing that made sense to hang on to....Almighty God. What else are you going to hang on to?

 It's been a long yet awesome year. As I look across the room and see a snoring, sleeping little girl named Hadassah, I can't help but smile. And when I look at some of the hurdles and obstacles in front of us that seem so big, I just have to look back to that moment when Haddie (fully) entered the world and I know that in time, we will be alright. God is good.