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!

What A Year!

It's been a wild one! I remember thinking that 2012 was a doozy...little did I know what 2013 would turn out to be! Finding out about the SCT in March, going to Philly in April, coming back in August, going to Akron for most of September and October, and finally getting into the swing of things the past two months! Whew! We made it through and are enjoying Haddie every day. Praise God. Kate wrote a Facebook post that explains our doctors visit today:

Really good Doctors appointment this AM! No G-tube right now and we are allowed to remove the NG tube(feeding tube) from time to time at our discretion  Little Miss weighed 12 pounds 14 ounces and yesterday she took all feeds (except 3 AM) from the bottle. Biggest compliment from the Dr.... "You make fat babies, and that's what I like to see!" Yay! Haddie is finally chunky!!

So things are going very well. Haddie is growing and learning. We go to Akron on the 7th to get an EEG to see if she's still having sub-clinical (non visible) seizure activity. If not, we get to start playing with her seizure meds quickly. If so, we will start playing with her seizure meds at a slower pace.

We hope you all had a Merry Christmas and we wish you a Happy New Year. God bless!


Below is a picture of Haddie sleeping through the Browns/Steelers Game. She unfortunately lives in a house divided!