kisses before ECMO placement
Our girl is so sweet.
beautiful baby girl Grace
eyes open looking at mommy and I SWEAR she is smiliing:) you can see her silo partially in this picture. Thursday, March 31, 2011
A busy day for Grace.
Im going to try to make this short but informative since I need to get to bed. Grace had a good day again today. Last night Adam brought the boys back to Perrysburg and I stayed with Grace and at the Ronald McDonald house. I stayed with her until about 11:30 and while I was there, Kelley, her night nurse showed me how to do Mouth care. It is where you swab the inside of her mouth and lips with water since they get very dry being suctioned and having the vent in. It felt so awesome to be able to take care of her somehow, it's very small in terms of what is going on with her but monumental for me. She liked it alot. I got back to the hospital around 5:30 am and Grace had had a fine night and was still resting. Rounds are at 6, when her team comes around and basically touches base with how the day before went and how the day is planned to go. They said she would basically stay the same today and was doing very well.
After rounds, I started to get so sleepy as I had only slept about 3 hours (and we are looking like that will happen again) and thought about heading to the waiting room for a nap. I am so so glad I didnt though because Grace woke up! She has been very sedated up till now and has fluttered her eyes here and there but hadnt opened them the way she did today. She looked at me while I talked to her and looked around the room as best she could. She started to raise her blood pressure from the activity though they gave her some Adavan so she could calm down. I am so glad she opened them. she is so gorgeous. They had to change a few things on her and she got a little upset, which was upsetting to me because since she had been so sedated, the procedures didnt bother her before but now they are a bit. They do keep her comfortable though.
Grace was baptised today as well, the Chaplin Lindsay was very sweet and kind and did a beautiful job. She involved the boys which was very nice.
Oh and I can't believe I almost forgot this, when Adam did mouth care on her after I left to bring the boys back to Perrysburg, he was able to use my colostrum. Colostrum is the first milk a baby gets when nursing. It's thick and full of fat and antibodies that are so important. This will not go into her gut at all, so it's not feeding her at all but just to get a taste in her mouth for it, and hopefully make her want to nurse when she is able. I am holding out hope that she will one day nurse. I am striving for it. He said she seemed to like it, so that is so great!
I would like to ask a favor, we are realizing that the boys cannot stay with us at the hospital every day like we had hoped, it's too much for all of us. but we both need to be at the hospital. Not just to see Grace to but make decisions for her care. She will get better faster if we are both there. But i dont want to always bog down certain people and others ahve lives too. So if anyone is willing to help out wiht the boys sometime can you please let us know somehow, when you are available? Leave a facebook message/post or call us or text or respond here. We really appreciate it. I think for now that's it. I need to get to bed. More pictures coming soon, they are just taking a really long time uploading.
After rounds, I started to get so sleepy as I had only slept about 3 hours (and we are looking like that will happen again) and thought about heading to the waiting room for a nap. I am so so glad I didnt though because Grace woke up! She has been very sedated up till now and has fluttered her eyes here and there but hadnt opened them the way she did today. She looked at me while I talked to her and looked around the room as best she could. She started to raise her blood pressure from the activity though they gave her some Adavan so she could calm down. I am so glad she opened them. she is so gorgeous. They had to change a few things on her and she got a little upset, which was upsetting to me because since she had been so sedated, the procedures didnt bother her before but now they are a bit. They do keep her comfortable though.
Grace was baptised today as well, the Chaplin Lindsay was very sweet and kind and did a beautiful job. She involved the boys which was very nice.
Oh and I can't believe I almost forgot this, when Adam did mouth care on her after I left to bring the boys back to Perrysburg, he was able to use my colostrum. Colostrum is the first milk a baby gets when nursing. It's thick and full of fat and antibodies that are so important. This will not go into her gut at all, so it's not feeding her at all but just to get a taste in her mouth for it, and hopefully make her want to nurse when she is able. I am holding out hope that she will one day nurse. I am striving for it. He said she seemed to like it, so that is so great!
I would like to ask a favor, we are realizing that the boys cannot stay with us at the hospital every day like we had hoped, it's too much for all of us. but we both need to be at the hospital. Not just to see Grace to but make decisions for her care. She will get better faster if we are both there. But i dont want to always bog down certain people and others ahve lives too. So if anyone is willing to help out wiht the boys sometime can you please let us know somehow, when you are available? Leave a facebook message/post or call us or text or respond here. We really appreciate it. I think for now that's it. I need to get to bed. More pictures coming soon, they are just taking a really long time uploading.
A few pictures.
A
a week before birth. I miss having her with me, feeling her move. 
3 days before birth.
holding her minutes after birth, I knew something was wrong. but I am so thankful that I was able to hold her. 
taking her to check her out, 
NICU right before they put her on ECMO. So glad they let me cradle her for a minute.Tuesday, March 29, 2011
His Grace IS enough.
I just wanted to share, for me a song that first made me want to name our little girl Grace. Some of you know what we have been going through in the months leading up to Grace's birth and Grace growing inside of my womb always felt like a gentle reminder to trust in Him and he will sustain us. My cousin also wrote to me in the begining of my pregnancy that she hopes our new blessing will give us the grace we needed to make it through our transition from the Navy to civilian life, one of our challenges at the time. Grace always seemed to fit her from the day we knew about her, even before we knew she was a girl. She is very special and there's not a doubt that God is with her always. i just wanted to add, it's this song because we had some particularly hard times when Adam was lookiung for a job. Here we were used to a certain qualityof life in the navy and now he had NO job and not really one in sight, 3 kids and one on the way. What were we going to do? We fought, we cried we just werent dealing the way we should have. We werent leaning on the Lord. We went to church one Sunday and we had been fighting. i was so mad sititng there in church. Not giving to the lord at all. Thinking of all the things, we didnt have that we SHOULD, that by gollly, we DESERVED. hadnt he worked so hard and sacrificed so much in the Navy. Hadnt our family been through enough. etc etc. It was just not good then. Well then this song started. I was very early in my pregnancy, just at the end of the first trimester. I hadnt felt alot of movement, but during this song, my baby started moving, I could feel her/him (didnt know_ and as I'm feeling movement Im hearing "your grace is enough" and it felt like He was using her to show me, LISTEN TO ME, FEEL THIS, I LOVE YOU.
Great is Your faithfulness oh God
You wrestle with the sinner's heart
You lead us by still waters in to mercy
And nothing can keep us apart
So remember Your people
Remember Your children
Remember Your promise
Oh God
Your grace is enough
Your grace is enough
Your grace is enough for me
Great is Your love and justice God of Jacob
You use the weak to lead the strong
You lead us in the song of Your salvation
And all Your people sing along
So remember Your people
Remember Your children
Remember Your promise
Oh God
Your grace is enough
Your grace is enough
Your grace is enough for me [x2]
So remember Your people
Remember Your children
Remember Your promise
Oh God
Your grace is enough
Your grace is enough
Your grace is enough for me
Your grace is enough
Heaven reaching down to us
Your grace is enough for me
God I see your grace is enough
I'm covered in your love
Your grace is enough for me
For me
Great is Your faithfulness oh God
You wrestle with the sinner's heart
You lead us by still waters in to mercy
And nothing can keep us apart
So remember Your people
Remember Your children
Remember Your promise
Oh God
Your grace is enough
Your grace is enough
Your grace is enough for me
Great is Your love and justice God of Jacob
You use the weak to lead the strong
You lead us in the song of Your salvation
And all Your people sing along
So remember Your people
Remember Your children
Remember Your promise
Oh God
Your grace is enough
Your grace is enough
Your grace is enough for me [x2]
So remember Your people
Remember Your children
Remember Your promise
Oh God
Your grace is enough
Your grace is enough
Your grace is enough for me
Your grace is enough
Heaven reaching down to us
Your grace is enough for me
God I see your grace is enough
I'm covered in your love
Your grace is enough for me
For me
The begining
The last 2 days have been spent in such a blur, it feels at times like it MUST be a dream, a bad joke, a walk in someone elses shoes for a moment. Certainly this is not OUR life now. But it's not any of that, it is our life, it is our journey it IS our daughter. Our sweet girl we never expected but wanted and loved so much from the day we found out we were expecting her in July 2010.
In November 2010 we found out at our 20 week ultrasound that we were expecting a beautiful healthy little girl. Our sweet girl after our 3 awesome boys. We looked forward to March 27th when she was due. After some very hard months we were finally going to meet her soon. Grace Fenella was born at 12:07 am March 27th 2011 after a very quick, easy delivery. Right away though, I knew she was not ok. She was very purple and they thought it was just because she needed a minute to catch her breath. She came out very very quicklly and sometimes that is a surprise to baby. Our last two boys were like that, but she looked different than they did and I knew she was not ok. They took her from me and to the warmer. She was not improving, though she did start to cry a bit. They whisked her off to the nursery and called the NICU dr from a nearby hospital to come and take a look. I was so scared but never expected it would turn out like it has. I thought maybe she'd need a little oxygen or something but that they'd bring her back to me in a few hours which would suck and be hard but wow not this.
After Grace was there for about an hour Adam came back and said they thought she might not have developed properly and might need a "small surgery". A little while later, I was told she was being transported to a bigger hosptial with a NICU. Within 5 hours of her birth, she was taken from Flower hospital to Toledo Childrens Hospital by ambulance and then to University of Michigan, by Life flight. They told me she had a diaphragmatic hernia. IT sounded bad but I still was not grasping how sick she is.
I was able to leave just after breakfast time and we headed up to Ann Arbor to be with her. We got here and found her and it was just shocking.
Grace has CDH,Congenital Diaphragmatic Hernia. Her Diaphram did not close all the way in utero, which allowed parts of her intestine and liver to sneak through and develop in her chest, where her lungs should be. They came over on the left side, so her left lung is then severely underdeveloped and small.She does have one though which is a good thing. Her right lung is also smaller than that of a healthy baby but not as small as the left.
Grace was placed on a ventilator but was not doing what they had wanted, so the decision was made to place her on ECMO. ECMO is when they take the blood from her body through her carotid artery in her neck, siphon it through a machine to clean it out and back into her body through the jugular. (or vice versa, I cannot remember right now) It is a heart/lung bypass so that she is being kept alive but her heart and lungs are given a rest so she is not working so very hard to pump blood.
She has been responding well to the ECMO and was taken for her first surgery around 12 pm on March 28th. Just 36 hours old and going off to the OR. It was very scary.
The surgery was to close the hole and move the intestines and liver back down where they belong. Grace did WONDERFULLY. She tolerated it well. We were worried because the ECMO thins your blood and surgery with your blood thinned is risky. No bleeding and no complications. Her hole was able to be closed with itself, meanig they did not need to patch it like they thought htye might with Goretex. Her liver was fit bak in place and her intestines though they thought they might be able to get them completely in, they didnt want to risk having to open her up again. So part of her intestines are outside of her body, in a clear plastic bag. They will start to slowly put them back in her body in a few days and then close her belly back up.
It is wonderful that she came through the surgery well, but has such a long long road to recovery ahead of her. There are many many many more hurdles to jump, but we are praying, praying, praying and half the world must be too! I will try to have this updated often so everyone can know. Im hoping to because it is hard to keep up with the texts and phone calls and keep track of who knows what. We have faith that our little girl will be ok, she is in the Lord's hands and has the best in the country working on her for this. She is in great hands on this earth and is being held by the amazing hands of God.
In November 2010 we found out at our 20 week ultrasound that we were expecting a beautiful healthy little girl. Our sweet girl after our 3 awesome boys. We looked forward to March 27th when she was due. After some very hard months we were finally going to meet her soon. Grace Fenella was born at 12:07 am March 27th 2011 after a very quick, easy delivery. Right away though, I knew she was not ok. She was very purple and they thought it was just because she needed a minute to catch her breath. She came out very very quicklly and sometimes that is a surprise to baby. Our last two boys were like that, but she looked different than they did and I knew she was not ok. They took her from me and to the warmer. She was not improving, though she did start to cry a bit. They whisked her off to the nursery and called the NICU dr from a nearby hospital to come and take a look. I was so scared but never expected it would turn out like it has. I thought maybe she'd need a little oxygen or something but that they'd bring her back to me in a few hours which would suck and be hard but wow not this.
After Grace was there for about an hour Adam came back and said they thought she might not have developed properly and might need a "small surgery". A little while later, I was told she was being transported to a bigger hosptial with a NICU. Within 5 hours of her birth, she was taken from Flower hospital to Toledo Childrens Hospital by ambulance and then to University of Michigan, by Life flight. They told me she had a diaphragmatic hernia. IT sounded bad but I still was not grasping how sick she is.
I was able to leave just after breakfast time and we headed up to Ann Arbor to be with her. We got here and found her and it was just shocking.
Grace has CDH,Congenital Diaphragmatic Hernia. Her Diaphram did not close all the way in utero, which allowed parts of her intestine and liver to sneak through and develop in her chest, where her lungs should be. They came over on the left side, so her left lung is then severely underdeveloped and small.She does have one though which is a good thing. Her right lung is also smaller than that of a healthy baby but not as small as the left.
Grace was placed on a ventilator but was not doing what they had wanted, so the decision was made to place her on ECMO. ECMO is when they take the blood from her body through her carotid artery in her neck, siphon it through a machine to clean it out and back into her body through the jugular. (or vice versa, I cannot remember right now) It is a heart/lung bypass so that she is being kept alive but her heart and lungs are given a rest so she is not working so very hard to pump blood.
She has been responding well to the ECMO and was taken for her first surgery around 12 pm on March 28th. Just 36 hours old and going off to the OR. It was very scary.
The surgery was to close the hole and move the intestines and liver back down where they belong. Grace did WONDERFULLY. She tolerated it well. We were worried because the ECMO thins your blood and surgery with your blood thinned is risky. No bleeding and no complications. Her hole was able to be closed with itself, meanig they did not need to patch it like they thought htye might with Goretex. Her liver was fit bak in place and her intestines though they thought they might be able to get them completely in, they didnt want to risk having to open her up again. So part of her intestines are outside of her body, in a clear plastic bag. They will start to slowly put them back in her body in a few days and then close her belly back up.
It is wonderful that she came through the surgery well, but has such a long long road to recovery ahead of her. There are many many many more hurdles to jump, but we are praying, praying, praying and half the world must be too! I will try to have this updated often so everyone can know. Im hoping to because it is hard to keep up with the texts and phone calls and keep track of who knows what. We have faith that our little girl will be ok, she is in the Lord's hands and has the best in the country working on her for this. She is in great hands on this earth and is being held by the amazing hands of God.
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