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.
Tuesday, May 20, 2014
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.
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.
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.
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