Lydia had a cardiology appointment today. I was nervous. We were late and she had red marks on her face from her cannula and she has a little cradle cap that's peeling and in my head I was yelling, "THEY ARE GOING TO THINK YOU ARE A HORRIBLE PARENT." Some of us are a little insane. Mostly me.
We went into the office, and since they had been warned we were coming and shouldn't hang out in a waiting room with lots of sick people, they brought us immediately into the exam room. From there, we were taken to an ultrasound room. I told Lydia about all the times I'd had an ultrasound when she was still in my belly and how long they looked at her heart when she was still inside. She did not enjoy the jelly all over her and squirmed around.
After the ultrasound we took her back to the exam room and they weighed her (8lbs 8oz) and checked her height (23.5 inches). She's growing, which is great for us to see!
The cardiologist came in and gave us the news that the hole in her heart is already starting to heal. They showed us that tissue was already starting to grow over the hole. The doctor said that while the hole would probably never close all the way, it would continue to close until it became a non-issue. She said the chances that Lydia would go into congestive heart-failure were practically zero. We weren't super worried about it, but it was still a possibility and we're happy to no longer have to worry about it.
HOORAY!
We stopped in to visit the NICU since we were already there. We saw several of our nurses and all three of the neo-natologists. It was awesome to have them see the little girl that none of us thought would be here this long and to have them say, "She's so big! She looks so good!" and all the things we wanted to hear.
Our God. He is awesome.
Tomorrow is a trip to Yale to get her "button" put in. This whole g-tube thing still really scares me. Please pray for peace and a smooth procedure.
And look! Look how many people are in prayer for our girl! I can't tell you how encouraged we have been to watch those number go up, up, up all day long. If you haven't added yourself to our map, go to it! We're amazed by how we are being interceded for and are so thankful!
In August of 2009 God changed our lives by giving us a beautiful little girl. Lydia was born with Zellweger Syndrome. Lydia went to be with Jesus in April of 2010. This is the story of her life and death, and of our journey through grief in search of healing.
Monday, November 9, 2009
Sunday, November 8, 2009
Prayers for Lydia
If you look on the right hand of the blog, we've added a new feature. It's a map that we're calling "Prayers for Lydia." We are amazed and blessed to be covered in prayer by people all around the world. We want everyone who visits our blog to know how many people are lifting our girl in prayer.
For those who believe, we want you to know how many brothers and sisters are joining together for the same reason. We want you to be encouraged by the amazing power God gives His body here on earth!
For those who don't believe, we want to be a testimony to the fact that following God includes us in a family that is loving and willing to intercede on our behalf when we are in need.
We hope that you'll click on the map and follow the prompts to add your location. Don't feel like you have to add your address. Just city and state (and country, if that applies) would be amazing.
If you have any problems, shoot me an e-mail and I'll do my best to guide you through it.
Thanks everyone!
For those who believe, we want you to know how many brothers and sisters are joining together for the same reason. We want you to be encouraged by the amazing power God gives His body here on earth!
For those who don't believe, we want to be a testimony to the fact that following God includes us in a family that is loving and willing to intercede on our behalf when we are in need.
We hope that you'll click on the map and follow the prompts to add your location. Don't feel like you have to add your address. Just city and state (and country, if that applies) would be amazing.
If you have any problems, shoot me an e-mail and I'll do my best to guide you through it.
Thanks everyone!
A photos from the past week
Lydia and Patti G.
Stripes!
Snuggles with Em!
Awesome headrest from Grandma Huff.
Ready for our first trip to church!
Pretty dress for church!
Wednesday, November 4, 2009
Lydia went two complete weeks without have any big seizures. We were internet quiet because there just wasn’t a lot to say - she was doing wonderfully. We had a wonderful Halloween (as you hopefully saw from the pictures) and we went to church. Let me just tell you - going to church when you haven’t gone in several weeks because you have a baby who the doctors told you would probably not live to the end of October, but then you take her to church on NOVEMBER 1st, a day you never thought she’d see - boy, that’s a perfect storm for all kinds of weeping. It was an amazing weekend. And an amazing, blessed, peaceful, joyful two weeks.
The seizures started back up again today, complete with the not breathing thing she does. Interestingly enough, we have been in touch with a doctor in Maryland who is the leading doctor for Zellweger Syndrome and has seen more babies with it than anyone in the world. He told us that it isn’t uncommon for babies with ZS to have stretches of time with seizures and then stretches of time without any at all. We’re hoping this is just another short stretch of seizures and that we still have many good days in store.
Having finally found someone who has seen more than one or two cases before, we have inundated him with questions. Unfortunately, there still just aren’t any answers. We want so badly to know how things will progress or deteriorate, how we can see anything coming. He told us that there’s absolutely no way to predict what will happen - every case is different. He said she’s just going to do what she’s going to do, despite whatever we might try to do. Knowing that we can’t know what’s coming is both an encouragement and a huge pain in the neck all at the same time.
Next week we have appointments. Monday Lydia has a routine cardiology check-up for the hole in her heart. Tuesday, we return to Yale to get a “button” put in instead of the dangling g-tube. The procedure is pretty simple and quick, but of course they warn you of all the potential problems. One is that her stomach could separate from her abdominal wall if the scar tissue hasn’t healed correctly. Please pray that this isn’t a problem and that everything goes smoothly.
Two weeks of no seizures - a blessing but also kind of a tough thing for me. It makes me forget that she’s really not OK. During a good day I think about how normal everything feels, and then I remember how very not normal it is and makes me break apart a little. Yesterday I hit the “this is so unfair” wall pretty hard and I’m having a tough time bouncing back from it. But we keep holding on to the good moments, thankful for each one and hopeful for more.
We just recently painted one of our walls with chalkboard paint and a friend inspired me with her chalkboard wall that she writes a new Bible verse on every week. This week, we have up Isaiah 33:2: “O Lord, be gracious to us; we long for You. Be our strength every morning in time of distress.”
And He is.
The seizures started back up again today, complete with the not breathing thing she does. Interestingly enough, we have been in touch with a doctor in Maryland who is the leading doctor for Zellweger Syndrome and has seen more babies with it than anyone in the world. He told us that it isn’t uncommon for babies with ZS to have stretches of time with seizures and then stretches of time without any at all. We’re hoping this is just another short stretch of seizures and that we still have many good days in store.
Having finally found someone who has seen more than one or two cases before, we have inundated him with questions. Unfortunately, there still just aren’t any answers. We want so badly to know how things will progress or deteriorate, how we can see anything coming. He told us that there’s absolutely no way to predict what will happen - every case is different. He said she’s just going to do what she’s going to do, despite whatever we might try to do. Knowing that we can’t know what’s coming is both an encouragement and a huge pain in the neck all at the same time.
Next week we have appointments. Monday Lydia has a routine cardiology check-up for the hole in her heart. Tuesday, we return to Yale to get a “button” put in instead of the dangling g-tube. The procedure is pretty simple and quick, but of course they warn you of all the potential problems. One is that her stomach could separate from her abdominal wall if the scar tissue hasn’t healed correctly. Please pray that this isn’t a problem and that everything goes smoothly.
Two weeks of no seizures - a blessing but also kind of a tough thing for me. It makes me forget that she’s really not OK. During a good day I think about how normal everything feels, and then I remember how very not normal it is and makes me break apart a little. Yesterday I hit the “this is so unfair” wall pretty hard and I’m having a tough time bouncing back from it. But we keep holding on to the good moments, thankful for each one and hopeful for more.
We just recently painted one of our walls with chalkboard paint and a friend inspired me with her chalkboard wall that she writes a new Bible verse on every week. This week, we have up Isaiah 33:2: “O Lord, be gracious to us; we long for You. Be our strength every morning in time of distress.”
And He is.
Saturday, October 31, 2009
Happy Halloween!
Lydia's first costume was a princess fairy type thing. It was WAY too small, but she really liked her wand, as you can see from this video.
Can't really say what she's supposed to be here, but I like it!
Lydia, looking autumnal.
Pumpkin!
DOROTHY! This costume was made by the wonderful Monica Tucker (and her daughter Leah made the basket)! Lisa knew I really wanted her to be Dorothy, but all the costumes were too big. This made Halloween AWESOME.
Ruby slippers!
Going to see Grandma and Grandpa Huff at Trunk-or-Treat at Calvary!
Lydia with Lisa as the Tin Man and my dad (behind Micah) as a Flying Monkey.
Dorothy, Toto, Scarecrow and Tin Man!
There's no place like home.
Monday, October 26, 2009
Sorry for the lack of update lately. Everything here has been pretty stable since last Tuesday. That was Lydia’s last big seizure. We’ve seen slight twitches here and there, but she’s been fine since then - almost a week! She’s been awake and moving around more than usual and making more little baby noises as well.
As she has more and more good days, Micah and I are getting braver about going places. We took her to my parents’ house for my sister’s birthday dinner on Saturday and then to Micah’s parents’ house for his brother’s birthday dinner on Sunday. We’re even doing better about taking her places when she’s having seizures. Last Tuesday we took her for a walk and halfway through, she had a seizure and stopped breathing. We pulled the stroller over, let her know we we were there with her, let it pass and resumed our walk. My, what a skewed version of normal we’re living in.
So, things have been good these past several days. Once Lydia gets her vaccinations, we’ll be looking forward to taking her more places with us. We came to a point last week when we realized we were tired of sitting around the house waiting for her to die. It’s time to live life like we’re going to have her for a long time because, honestly, anything is possible. She is an amazing little girl and we’re proud to have a daughter like her.
Here are some pictures of Lydia meeting her Great-Grandma and Great-Grandpa Huff!
As she has more and more good days, Micah and I are getting braver about going places. We took her to my parents’ house for my sister’s birthday dinner on Saturday and then to Micah’s parents’ house for his brother’s birthday dinner on Sunday. We’re even doing better about taking her places when she’s having seizures. Last Tuesday we took her for a walk and halfway through, she had a seizure and stopped breathing. We pulled the stroller over, let her know we we were there with her, let it pass and resumed our walk. My, what a skewed version of normal we’re living in.
So, things have been good these past several days. Once Lydia gets her vaccinations, we’ll be looking forward to taking her more places with us. We came to a point last week when we realized we were tired of sitting around the house waiting for her to die. It’s time to live life like we’re going to have her for a long time because, honestly, anything is possible. She is an amazing little girl and we’re proud to have a daughter like her.
Here are some pictures of Lydia meeting her Great-Grandma and Great-Grandpa Huff!
Thursday, October 22, 2009
Coffee House
The past two days have been awesome. Lydia hasn’t had any big seizures for the past two days! We’ve gotten braver about going out and bringing her with us, and that’s bringing us great freedom and relief from being in the house all the time. The crazy was starting to set in, so this came at a good time.
Tonight was a wonderful night. For those of you who don’t know, I’ve worked for the past five years at a small Christian school called Christian Heritage School in Trumbull. It’s the school that Micah and I both graduated from. Tonight, a group of students organized a benefit coffee house in honor and support of our family. Several of the students and even some of the faculty came and performed songs and poems. They had a time of prayer for us followed by a time of worship. One of the boys who headed the evening up said they didn’t want to mourn Lydia’s condition, but celebrate her life.
We didn’t get a chance to say thank you - not that I wanted the chance in front of everyone because I would have wept like a small child. So, I’m going to say thank you on the internet.
Boys whose idea this was and who were in charge of orchestrating the evening, Nick and Pete (and anyone else who might have helped that we don’t know about), THANK YOU. Thank you for caring about our family and wanting to do something to help us and for doing it in a way that showcased so many people’s gifts, as well as bringing glory to God. Tag on Geoff and thanks for the beautiful worship tonight. You sang two of our most favorite songs: “In Christ Alone and “Be Thou My Vision.”
I know there were a lot of other people who did a lot of other things like baking, making coffee, setting up, doing sound, recording, taking money and all things like that. Thank you all so, so much. Everything was lovely and so well done.
Thank you to all who performed. We’re sorry we missed some at the beginning, but we are looking forward to watching the video with Lydia here at home! You made us smile and laugh and we’ll take all of that we can get!
Thanks to all the parents as well for coming and helping set things up and for raising such wonderful children that do such kind things for others.
Listen up, all you teenage types - I am thankful for you. I wish I could begin to explain to you what a blessing this evening was for us. I wish there was more that I could say, but please know that we love you so and your love for us makes us stronger and encourages us. Thank you for loving us and our sweet baby girl.
Tonight was a wonderful night. For those of you who don’t know, I’ve worked for the past five years at a small Christian school called Christian Heritage School in Trumbull. It’s the school that Micah and I both graduated from. Tonight, a group of students organized a benefit coffee house in honor and support of our family. Several of the students and even some of the faculty came and performed songs and poems. They had a time of prayer for us followed by a time of worship. One of the boys who headed the evening up said they didn’t want to mourn Lydia’s condition, but celebrate her life.
We didn’t get a chance to say thank you - not that I wanted the chance in front of everyone because I would have wept like a small child. So, I’m going to say thank you on the internet.
Boys whose idea this was and who were in charge of orchestrating the evening, Nick and Pete (and anyone else who might have helped that we don’t know about), THANK YOU. Thank you for caring about our family and wanting to do something to help us and for doing it in a way that showcased so many people’s gifts, as well as bringing glory to God. Tag on Geoff and thanks for the beautiful worship tonight. You sang two of our most favorite songs: “In Christ Alone and “Be Thou My Vision.”
I know there were a lot of other people who did a lot of other things like baking, making coffee, setting up, doing sound, recording, taking money and all things like that. Thank you all so, so much. Everything was lovely and so well done.
Thank you to all who performed. We’re sorry we missed some at the beginning, but we are looking forward to watching the video with Lydia here at home! You made us smile and laugh and we’ll take all of that we can get!
Thanks to all the parents as well for coming and helping set things up and for raising such wonderful children that do such kind things for others.
Listen up, all you teenage types - I am thankful for you. I wish I could begin to explain to you what a blessing this evening was for us. I wish there was more that I could say, but please know that we love you so and your love for us makes us stronger and encourages us. Thank you for loving us and our sweet baby girl.
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