Merry Christmas and a Haddie New Year

So I said I was going to update more in my past post. Turns out I lied. Sorry. But I still love you...and I know you still love Haddie so I will get a pass this time :)

The EMU stay ended up being a good thing. We found out she was having little seizures and they were happening more frequently. We took away a med, added a new med called Onfi, and things are much better. It makes her a little sleepy still but she's starting to come out of that. And we've seen a lot less of those little seizures.

We keep working with her on head control and other basic motor skills. It's a daily chore but one we don't mind doing. There's a million and two exercises we could do with her but we try to focus on a few simple ones each day.

She's eating like a champ. And drinking. We thicken water just a bit and she slurps it down pretty well. She takes 500 calories of food off of a spoon each day.

We've enjoyed time at Christmas the past couple of days. Haddie likes to hang out with her new cousins Jensen and Sylvain. She was a good girl this year so Santa came to see her. She wasn't so sure about him though...

 Hope you all had a Merry Christmas. God is very good. We hope you remember the best gift of all...the sacrifice of his Son. Merry Christmas and a Haddie (happy I mean) New Year!

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 meds...it 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.

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. 

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!

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!

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 hey...at 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 are...so 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!

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. www.scthope.com

Have a great weekend!

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 you...it'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 days...to 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!

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 news...it 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.  

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!

Easy to Swallow

Today was a good day. Well every day is a good day...today 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.

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.

As 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.

Butt Birthday and Another EEG

We celebrated Haddie's "Butt Birthday" on Saturday. A year ago last Saturday is when everything went crazy. They did a surgery to remove the teratoma while Haddie was still in the womb. That still blows my mind. Kate said this the other day at a talk and I hadn't thought of it before: Nicodemus asked Jesus if a man could be born and then re enter his mothers womb...Haddie's butt did just that!

We celebrated with friends and family had a great time! Her real birthday is on the 10th.

We went to Akron yesterday to get another EEG to see if the hypsarrhythmia is getting better. Unfortunately it has not really improved much. He said there's a higher voltage than before which isn't a great thing...not terrible...but not good either. Haddie has in the past week or so started to show signs of seizures again. That could just be her body losing the phenobarbital levels that we took her off of 2 weeks ago. He said that the good news is that they are just seizures...not infantile spasms. Spasm are really bad, seizure can be medicated and dealt with better. And since most of you probably don't have a clue what I mean by the EEG results, I looked this up to explain.

This is a normal infants EEG brain waves:

What Haddie's waves currently look like. 

What we rejoice over is that there are waves. There used to be nothing happening period when they did an EEG. Now there's too much happening which in turn cause the sub clinical seizures.

So our plan is to take the Sabril medication to its' max dosage and come back in 2 weeks to see if it's helping anything. They will repeat the EEG then to see what's what. By going to the max dose we can find out a couple of things. First, this should stop those breakout seizures she's been having and secondly, we will know for sure if Sabril is going to help her get past this hypsarrhythmia. If not, we may have to explore other options.

These seizures, according to the neurologist and a specialists we saw, is what is slowing Haddie down in development. While Haddie has made a few strides and can do some things that she couldn't before, if she were to get these seizures more under control it would greatly speed up her development.

So hopefully this max dose will work. We are very proud of the progress she has made and so are the therapy groups that see her on a monthly basis. But we would definitely be happy if that process could speed up too.

God is good. Please pray that this will work. We trust God in this. It's very hard sometimes. We so desperately want Haddie to grow and develop and learn. And that's a very slow process right now. But we will trust in the Lord and see what happens in 2 weeks at the next EEG.

Hope you are enjoying the spring! Here's some pics from the party.

 Haddie and her friend Parker.













Haddie's not sure about the cupcake icing just yet...

One Year of Frogger Blogging

I just happened to hop online tonight and take a look at the blog. I get overwhelmed every time I see how many of you have looked at these rants and writings...over 240,000 page views! I take satisfaction not in the massive number but more so in that those numbers represent prayers to God on our behalf.

Then I scrolled down and realized it's been a year. 1 year ago I started this as a way of getting prayers and information out about our struggles. Here's the first post if you never got the chance to read it: First Post.

I just write this to tell you all that we serve an awesome God. He is loving and He is just. I realize that is easier for me to write and say considering he found it in His will to answer our prayers the way we wanted Him to. That is all the more reason for me to praise His name today. And I ask you to please pray for those who are in the situation were in a year ago today.

God is good. All the time. And we are happy to have everyday with our Haddie. Thanks for joining us on this journey!

Foolin Around With An EEG

We had our EEG today. Turns out, Haddie is an alien. April Fools! Okay, now that we've got that out of the way, here's the scoop.

Haddie's EEG went pretty good. Not a lot has changed but it does present some good possibilities. There is activity in areas of Haddie's brain where there hasn't been activity before. The not so good news is that there's a bit too much. The EEG lines tend to spike in certain areas. However, this could just be lines showing up because things are starting to fire and Haddie's brain is figuring things out.

Dr. Enlow couldn't really say if it was good or bad but said time will tell. The spikes, while showing increasing activity, could still point toward infantile spasms. He is increasing the dose of her one seizure med and getting rid of the other. Our old nemesis drug, phenobarbital, will be gone in 2 weeks! It has served us well but it has also cause Haddie to sleep a great deal as well.

So all in all we are happy. Doctors in Philadelphia predicted that she wouldn't have any brain activity. Period. And they were right. For a while. But you never know what the brain can do....especially when 10,000 some people plus have prayed for it. She also doesn't have to come back to see neurosurgery for 6 months. We come back in 3 weeks to get another EEG with Dr. Enlow. God is good.

We also found out that we are still feeding Haddie too much probably. Our pediatricians opinion is that she needs to have excess weight to bank on if she would get sick again. The dietician we saw today agreed but not to the extent where we are. Haddie's weight for her age (17.6lbs) is in the 97th percentile. However her height (25inches) is in the 1st percentile. Translation: we got a round little girl on our hands. And while that may help her if she gets sick, in the long run it could hurt her. We know for a fact is has literally slowed her down some. She used to roll over and now she can't. So our plan is to cut back on how much fortification we put into her feeds.

Praise God on behalf of us today. It has been a good one. He continues to help our Hadassah and that is no joke. Have a great week!

March Gladness

Been a good while since I updated so I figured I would do just that. Hadassah has been doing pretty well. This past month she has been growing and developing. I dont think I updated after her last EEG...it went very well. The Sabril medication at the lower dose had started to change the EEG for the better. For the past month we have been slowly increasing the dose. We go back on April 1st for another EEG to see if the hypsarrhythmia is better or gone. We pray that it is...this will greatly help her development.

The only negative is that she still has the feeding tube in. We have been giving her oral stimulation with each feed to try and keep her feeding skills up while its in. After the 1st, if everything looks good, we will schedule another swallow study. Really hoping she can pass that so we can get that tube out. If she fails, we are probably headed toward a G-Tube...the port in her belly that requires a surgery. From the sounds of our blogs it might seem like we view the g-tube as the antichrist or something. We know its not that bad and many kids do well with it. But to us it would just feel like a step in the wrong direction. But we shall see.

God is good. Life with Haddie has been good. It's a struggle sometimes. We have to push ourselves to push her. That's what she needs. It's just hard sometimes to tell if she likes something or if she is ticked off at you. I need to speak "grunt" a little better. But we love giving her baths and playing with her. Just the little things that most people wouldnt notice are what drive us to keep going. The other night we put her in her seat and put the mobile above her. She started batting at the dangling animals. We cheered for her like a college frat boy at the NCAA tournament.

We took a look at some old videos from the NICU last night. That seems like a dream now. We have come so far. God is faithful and good.

Hope you all have a great week!

Swallow Study Sorrows

It's been a long day so I will jump right into it. Haddie was scheduled for a swallow study today. Our Dr. had heard the "wet" sound from her throat that we have grown accustomed to. Haddie has always had a different sound from her lungs but we just assumed that was Haddie. Back when she was in the NICU they kept waiting for that sound to go away before taking out her breathing tube after one particular surgery. A doctor finally said that's just how Haddie sounds and didnt worry too much about it. She passed a swallow study before we left the NICU.

We do notice that Hadassah coughs and chokes here and there during her feeds. But she usually takes most of it down unless she is sick. And she has been gaining weight.

But today we discovered through the swallow study that Haddie is aspirating. What that means is when she takes a drink most of it goes down her throat to her belly but some of it goes to the "pipe" that goes down to her lungs. If that continues to happen she can get infections or pneumonia in her lungs. We tried a couple of different sized nipples on the bottle but got the same result. They waited a couple of minutes and tried thickening the feed but that didnt seem to help because at that point the milk was already in the pipe.

Their suggestion is that we put back in the NG tube through her nose and feed her that way for a while until she develops some more.

Kate and I both hated that idea. To us, it's a step in the wrong direction. But we also have to do whats best for Haddie. We called the Help Me Grow speech therapist we see to get some advice. She said shes not entirely sure that Haddie wouldn't do well on thickened feeds. She says that once Haddie failed the regular flow nipples, the results of the next part where they tried thickening the feeds could be off.

Her suggestion was that we put the NG tube in for 2 weeks and then repeat the swallow study back in Akron. This time we will start with the thickened feeds and see how it goes. She even volunteered to go up with us so she can see the study. Its not that we, or her, distrust the people at Akron. It's just that they do not know Haddie.

If in 2 weeks when we do the study again Haddie also fails that test...then it's time to consider a G Tube which we do not want at all.

But that's life sometimes. God is still good and we are trying to see past this. Maybe this is His way of helping her not have issues with her lungs when she's older. I told Kate it will be one of those things we don't even remember down the road. But right now it's tough. We were very excited to get the tube out...we both cried tonight as we put the thing back in.

Pray for our faith to increase, Haddie not to remember all of the stuff we have to put her through...and a good result on her EEG test on Monday. God bless!

Navigating Moguls

We have been enjoying the Olympics. As I sit here and write this, the NBC Olympic music is playing. Kate loves the figure skating. I'm more into the mogul skiing. Kate asked last night why anyone would really want to do that. There's a thousand bumps on a very steep hill and some people think it a great idea to strap some wooden planks on their feet and go over the edge. I told her there's a rush involved with navigating those bumps and figuring the best way to go over and around them.

And that's what we are doing with Haddie. There's many, many, many moguls behind us. Just read the previous blogs to see that. And now, there's another mogul in front of us called West Syndrome.

We had an EEG done today because a month ago the EEG showed that Hadassah has  chaotic "waves" showing up. The good news is that there is brain activity. The bad news is that these waves aren't good. The waves, as we understand them, are sub clinical seizures. They call this a "hypsarrhythmia" or "infantile spasms" which falls under the category of West Syndrome. Haddie doesn't currently show any visible signs of these seizures. However, today's EEG shows that they have progressed. The neurologist believes that this will continue to progress. Even without visible seizures or spasms...this is slowing her development...and he believes eventually it could cause her to go backwards in development.

There's a few options but the best treatment is a drug called Sabril. It has been tested and seems to have the best results. The doctor believes that this could reduce or even get rid of the hypsarrhythmia. This could really help Haddie in her future development. The negative: 30% of those that taking Sabril suffer some kind of peripheral vision loss. Some of the 30% lose so much that they can only see what's right in front of them and others only lose the edges. We would prefer her to not lose any eyesight. But we also want her to be able to hold up her head, to crawl, or just to smile at us (parents, don't take that smile for granted...we are longing to see Haddie do it!)

So we are going to go for it. It's a bump, a mogul, a...pain in the butt. But God is good...and we pray that he will use this drug to help our Haddie. She's 9 months old today. She's growing (15lbs 8oz), she's moving, she's beautiful, and she has a personality...we have a lot to be thankful for. Hadassah is already a winner.

Bring on the next mogul.

Snowed In Update

Woke up to 7 inches of snow! I think we will stay put. Here's the latest on Haddie.

A week ago Friday we went up to Akron to see a nutritionist. We had felt that we had been feeding Haddie way too much. We trust our pediatrician on most stuff but the amount he had us feeding her seemed to be a bit much so we figured we could go up there and get a second opinion. While eating Haddie would get very tired and often would throw up a bit...maybe once a day would she take her full amount. The nutritionist agreed with us. She said that Haddie is growing so fast that it is impeding her development. She's so chunky it is making it harder for her to get the muscles she needs to lift her head.

We were feeding her 160mls every 5 hours. Our pediatrician wants her to grow between 20-30 grams a day. The nutritionist said that for Haddie's size she should be growing only 15-20 grams a day. She suggested we drop to feeding her 145 mls every 5 hours or to do 120 every 4 hours. We chose the later and Haddie has been doing great with it.

But we had to tell our doctor on Thursday. It didnt start off too well. He disagreed with the nutritionist and said she didn't see the whole picture. This stressed us out a bit because we would have to choose whom we should trust on this. But as we explained how we had switched over and how she had still gained weight he said that maybe it would work. He agreed that her intake was slowing her development. He was okay with that because his goal is to get Haddie caught up. He said he wants h

er to have extra weight in case Haddie had to go back to a hospital again and would need the reserve. He said that since she is still gaining weight he will go with it and coordinate with the nutritionist to form a plan. So we were happy about that. Feeding her is less stressful and she actually seems to be hungry...and o by the way...she weighs 14lbs 14 oz right now!

Haddie has been doing great. She's getting bigger and is slowly learning how to hold up her head and move a bit more. We had a physical therapy session the other day where we learned to do some yoga with her that will help her out. It's just so awesome to see how far she has come. We go back to Akron on the 10th to see what her seizure situation is.

Hope you have a warm and safe day. God bless!

Hadassah's Journey Video

My friends Lucas Metz and Nathan Tewanger made this video for us. They showed it at the Belpre Youth Rally this past year. Figured I would share it with you. They did a great job. Click HERE to check it out! Warning: probably should have some tissues on hand.

Dedication

Deut 6:4-9 4 “Hear, O Israel: The Lord our God, the Lord is one. 5 You shall love the Lord your God with all your heart and with all your soul and with all your might. 6 And these words that I command you today shall be on your heart. 7 You shall teach them diligently to your children, and shall talk of them when you sit in your house, and when you walk by the way, and when you lie down, and when you rise.8 You shall bind them as a sign on your hand, and they shall be as frontlets between your eyes. 9 You shall write them on the doorposts of your house and on your gates.

Today was an excellent day at worship. We formally dedicated Haddie to being a part of the church and to raise her to know the Lord. The church dedicated themselves to help us...and several other families at the church did the same. It's amazing to have a great church family to encourage and challenge us. 

Haddie has been doing great lately. She continues to gain weight and get chubbier. She's taking 160mls  every 4-5 hours. We met with Help Me Grow this week and they seemed to be happy with her development. She can lift her head better and tracks a lot better with her eyes. 

One thing they said last time we met seems to make sense to me. Obviously Haddie has some challenges due to her brain. Yet as I've said before, no one can really predict what she will be able to do and what she won't. She is currently 8 months old. However she was born 3 months early so they say her "adjusted age" is 5 months old. That's where most people track her development. But the last time we met one of the therapist said there is research out there suggesting that they should also not count months that the child was in the NICU or in the hospital. She said that during those months the baby was trying to just survive, not develop. So with that in mind, and if that research is true, Haddie's adjusted age would be 2 months old....since we have only really been home since November. 

We are blessed just to have Haddie here and we do not take that for granted. God can do what he wants with her. But we do try to track how she is developing and we try to challenge her. So if that research is right and Haddie is closer to a 2 month old than a 5 month old...I'd say that's about right and she's on par. 

She truly is beautiful and we love seeing her learn and grow. We meet with a dietitian on Friday to make sure we are feeding her the right amount and the right way. Then we go back to Akron on the 7th for another EEG to see where we are with he seizures. She hasn't had a seizure or any signs of the "west syndrome" that we mentioned before...so we pray that the results are better. 

Hope you all are having a great week. Thanks for your continued prayers. 

EEG News

Today Haddie had her EEG in Akron at 7 am. That took about an hour and then we went to see the neurosurgeon while we waited on the results. Dr.Chen is happy with Haddie's shunt. Everything seems to be going pretty well there. So well in fact that we don't have to come back and see her for 3 months. 

We then went in to see the neurologist, Dr Enlow, to discuss the results of the EEG. The good news is that there is constant brain activity. Praise God for that. The last one they did in September seemed to show some activity and then no activity. Today is was a constant stream of activity...which is a great thing.

The not so good news is that a few of the lines on the EEG are pointing to a disorder that we don't want. He said that she could be headed toward "Infantile Spasms". I could try and explain but this definition would work better: An infantile spasm is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood known as West Syndrome. West Syndrome is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves). The onset of infantile spasms is usually in the first year of life, typically between 4-8 months.

So it is definitely not something we want. "Developmental regression" is not at all what we want. He is not sure about this though. Haddie is not really showing any physical signs of an infant with the spasms. She has no visible seizure activity. So it might be West Syndrome or maybe not. If it is, the only thing they can do is treat it with strong medication that has some very serious side effects. He wants us to come back Feb 10th to do the test again. He said that hopefully the test would reveal that those chaotic waves are going away.

So here we are again. We are trying to stay positive. And we are. I'm fairly confident that she doesn't have that disorder. But the possibility of it certainly steals your breath like the temperature of today's air. 

God is good. Always has been, always will. We trust that He has a plan for Hadassah. We ask you to pray that this isn't West Syndrome. We are so excited and proud about the progress Haddie has made...it would be very tough to see her go backwards again. 

Love you all and hope you have a great week. Stay warm!