Many of you probably saw our facebook status, so here’s a quick update from Bridgeport Hospital’s PICU!
Lydia had a really good night last night, but starting this morning around 8-ish, she started having some seizures. They weren’t the super-scary, stop breathing kind but she was doing a lot of twitching in her hands, legs and face. We were on the phone with our doctors throughout the day, gave her a little more medication and she was still seizing. Because we know that typically the twitchy seizures lead to the kind where she stops breathing, we decided it would be best to bring her to the hospital.
On the advice of our most awesome pediatrician, we called an ambulance. We didn’t want her to have any episodes in the car, and we really thought that was where we were headed. We called 911 and gathered up a bunch of her stuff. A policeman arrived within two minutes and the EMTs arrived soon after. Wonderfully enough, I knew one of the EMTs who came to get us. It’s amazing how God continues to bless us with reminders that He is present in our situation. As the neighbors all stared, we got into the ambulance - I got strapped to the bed, holding Lydia in my arms. It was my first ambulance ride, but Lydia’s second.
Off we went, flashing lights and all, and arrived at Bridgeport. Since my sister, Amy, works in the pediatric floor, she (along with our Pediatrician) had alerted them that we were coming. We were in the emergency room for all of four minutes so she could be admitted, and were quickly brought upstairs to the PICU, where we have been wonderfully provided since our arrival.
We met again with our doctor who had seen Lydia in the NICU here and at Yale, as well as several other doctors and nurses. They are running a couple tests to check her medication levels and of course, since we’ve arrived, she’s barely had any seizure activity. We still feel confident that we made the right decision in bringing her here. We realized today that just because we CAN give her the support she needs to keep her alive at home doesn’t mean we want to. We want to be parents for her, not paramedics if we can help it.
So, we’re not sure how long we’ll be here. We’re hoping not too long. We’re hoping we’ll get the meds worked out and then we’ll be able to have a little more time with her at home.
What we are so thankful for is the peace God is giving us in the midst of our situation. Every decision we think we have to make seems so big and difficult, but when the time comes to make it, we have such peace. He continues to be very good to us and bless us with wonderful doctors to care for our girl and support us.
Time to snuggle into a comfy hospital bed. We’ll keep you posted.
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.
Tuesday, September 29, 2009
Monday, September 28, 2009
More baptism photos
Getting ready for her baptism!
Name sign in her room.
Getting warm before the baptism
Blessings for our girl.
Great Grandma Flo and Great Grandpa Roy.
Four generations!
The Thompson clan.
The Huff clan.
Grandma!
Ready to sleep post-baptism.
These amazing pictures were taken by JC Carley. She photographed our wedding, as well as Allison and Josiah's. To check our more of her lovely photos, go here: www.carleyphotography.com.
Sunday, September 27, 2009
Update - September 27
The past three days - wow. So many wonderful things have happened.
We brought her home! To our house! Where we live! When we were leaving the NICU, the mix of emotions was overwhelming. I wanted to cry from joy, dance with excitement and puke from nerves all at the same time. I hugged our doctor under strict instructions to tell NO ONE that he hugged me. Our friend Sarina, who is a NICU nurse in Danbury, came to ride home with us, mostly for my peace of mind. The ride home was uneventful. Micah carried her into our home in her little car-seat and we just sat staring at her for the longest time, unable to believe she was actually home with us. We brought her into her room and snuggled her down into her crib. I sat in the rocker and just watched her breathe. It’s funny, because I know most new moms do that but it’s something we actually have to worry about. Maybe not that funny?
Because our care manager at the hospital is awesome, she found a nursing group who were able to start working with us our first night home with Lydia. The nurse gets here at 11pm and leaves at 7am. What a blessing! If we didn’t have her, Micah and I would be taking turns sleeping.
Our first night home was uneventful. Lydia slept peacefully and Micah and I were up off and on all through the night, straining to hear any sound of alarms. She did wonderfully, though, and woke up with wide eyes around seven.
Yesterday was insanity. We had people in and out all day to help us prepare for the baptism. Oh, people. The baptism. It was wonderful. We had immediate family, a very few friends and staff and spouses from church. We wish everyone could have been here to celebrate with us. We wanted her to be baptized as soon as possible, not because we believe her salvation lies in baptism, but because we wanted everyone to know that she is God’s child and deeply loved by Him. As we have so many times before, we wanted to commit her life to Him and celebrate her life.
We started by singing “Be Thou My Vision.” My dad read Zephaniah 3:17 - “The LORD your God is with you, He is mighty to save. He will take great delight in you, He will quiet you with his love, He will rejoice over you with singing.” Micah’s dad read Romans 8:37-39 - “No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Our bishop Thad took our sweet baby, baptized her and anointed her in Jesus’ name. We all received communion and sang “Great is Thy Faithfulness.”
It was wonderful - everything we could have wanted it to be. The Holy Spirit was present with us and our time was blessed.
We passed another fairly uneventful night. She had one slight desat, down to the seventies, but she came back up quickly and showed no seizure activity. We don’t know if was seizure related, but that was the only problem. God was being merciful to me. I slept right through it. Micah had turned down the monitor, so I didn’t hear anything. Poor Micah, though, it woke him up and then he didn’t sleep the rest of the night, just waiting for something else bad to happen. Praise God, nothing did.
This morning, again, she woke up with bright eyes, ready for the day. We had a lot of visitors today, mostly siblings who live out of town. It was wonderful to be able to pass a quiet day at home WITH OUR BABY IN THE HOUSE and not at the hospital. She got plenty of good snuggle time with aunts and uncles.
I’m sitting here as I type this, watching her sound asleep in Micah’s arms. Sarina told us when we brought her home that she’d do so much better here. The change in her is substantial. She’s moving around so much and is awake a lot more. It’s easy to forget at times that there’s even anything wrong.
The duality of emotion is difficult to maneuver through. For every good moment we have, we both celebrate and realize it’s one less good moment we have. We’re trying so hard to live in the moment with her. As my sister-in-law said, just because you know the end of a story doesn’t mean you should not enjoy what happens in the middle.
Every, every moment is gift for which we are thankful, because we might have had none. I know this is long this time, but I haven’t even begun to say all of the things in our hearts - I don’t know if it can be put into words.
Not to be blasphemous, but I begin to understand that part of the Bible where it talks about Mary watching the shepherds coming to worship Jesus and “Mary treasured up all these things and pondered them in her heart.” Each moment, each time she looks at us, every time she grabs our fingers - we store them up and say a prayer thanking God for each one.
We brought her home! To our house! Where we live! When we were leaving the NICU, the mix of emotions was overwhelming. I wanted to cry from joy, dance with excitement and puke from nerves all at the same time. I hugged our doctor under strict instructions to tell NO ONE that he hugged me. Our friend Sarina, who is a NICU nurse in Danbury, came to ride home with us, mostly for my peace of mind. The ride home was uneventful. Micah carried her into our home in her little car-seat and we just sat staring at her for the longest time, unable to believe she was actually home with us. We brought her into her room and snuggled her down into her crib. I sat in the rocker and just watched her breathe. It’s funny, because I know most new moms do that but it’s something we actually have to worry about. Maybe not that funny?
Because our care manager at the hospital is awesome, she found a nursing group who were able to start working with us our first night home with Lydia. The nurse gets here at 11pm and leaves at 7am. What a blessing! If we didn’t have her, Micah and I would be taking turns sleeping.
Our first night home was uneventful. Lydia slept peacefully and Micah and I were up off and on all through the night, straining to hear any sound of alarms. She did wonderfully, though, and woke up with wide eyes around seven.
Yesterday was insanity. We had people in and out all day to help us prepare for the baptism. Oh, people. The baptism. It was wonderful. We had immediate family, a very few friends and staff and spouses from church. We wish everyone could have been here to celebrate with us. We wanted her to be baptized as soon as possible, not because we believe her salvation lies in baptism, but because we wanted everyone to know that she is God’s child and deeply loved by Him. As we have so many times before, we wanted to commit her life to Him and celebrate her life.
We started by singing “Be Thou My Vision.” My dad read Zephaniah 3:17 - “The LORD your God is with you, He is mighty to save. He will take great delight in you, He will quiet you with his love, He will rejoice over you with singing.” Micah’s dad read Romans 8:37-39 - “No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Our bishop Thad took our sweet baby, baptized her and anointed her in Jesus’ name. We all received communion and sang “Great is Thy Faithfulness.”
It was wonderful - everything we could have wanted it to be. The Holy Spirit was present with us and our time was blessed.
We passed another fairly uneventful night. She had one slight desat, down to the seventies, but she came back up quickly and showed no seizure activity. We don’t know if was seizure related, but that was the only problem. God was being merciful to me. I slept right through it. Micah had turned down the monitor, so I didn’t hear anything. Poor Micah, though, it woke him up and then he didn’t sleep the rest of the night, just waiting for something else bad to happen. Praise God, nothing did.
This morning, again, she woke up with bright eyes, ready for the day. We had a lot of visitors today, mostly siblings who live out of town. It was wonderful to be able to pass a quiet day at home WITH OUR BABY IN THE HOUSE and not at the hospital. She got plenty of good snuggle time with aunts and uncles.
I’m sitting here as I type this, watching her sound asleep in Micah’s arms. Sarina told us when we brought her home that she’d do so much better here. The change in her is substantial. She’s moving around so much and is awake a lot more. It’s easy to forget at times that there’s even anything wrong.
The duality of emotion is difficult to maneuver through. For every good moment we have, we both celebrate and realize it’s one less good moment we have. We’re trying so hard to live in the moment with her. As my sister-in-law said, just because you know the end of a story doesn’t mean you should not enjoy what happens in the middle.
Every, every moment is gift for which we are thankful, because we might have had none. I know this is long this time, but I haven’t even begun to say all of the things in our hearts - I don’t know if it can be put into words.
Not to be blasphemous, but I begin to understand that part of the Bible where it talks about Mary watching the shepherds coming to worship Jesus and “Mary treasured up all these things and pondered them in her heart.” Each moment, each time she looks at us, every time she grabs our fingers - we store them up and say a prayer thanking God for each one.
Saturday, September 26, 2009
Lydia's Baptism
We had a small gathering today in our home to have Lydia baptized.
Our Bishop Thad baptizing our sweet baby girl.
Lydia and her godparents Sarah and Eric!
Beautiful cake.
Jen's family.
Love this tiny girl.
There will be more pictures of more family members soon. It was a wonderful day and we're so thankful for everyone who played a part in it.
Friday, September 25, 2009
WOOOOHOOOOOO!
Going home outfit!
In the carseat!
Safely home! Thank you Sarina for riding home with us!
Family!
In her crib. HER CRIB!
Aunt Liz!
Hooray!
Uncle Scott!
Great-Grandma Thompson!
Ahem. SHE'S HOME! SHE'S HOME! SHE'S HOME!God has been very good to us.
Update - September 25
Today is (hopefully but more than likely) the day! Lydia had a good night last night and we’re thinking they’ll be kicking us out around 1pm today! While this is terribly exciting for us, there are some other things we wanted you to know as we celebrate this day. This might be kind of a downer, but we want everyone to understand what’s happening.
You’ve seen in our update that she isn’t exactly 100% stable. Though she’s doing a lot better, it’s clear that her medication is not going to control her seizures for long without them breaking through. When we were speaking with the doctors yesterday, the conversation turned to why they were so eager to get her home. The doctor said he feels like the window of opportunity to bring her home is closing, and he wants us to bring her home before it closes altogether. We asked him to be blunt with us, so don’t think he was being inconsiderate.
What this seems to boil down to is that her time is short. We don’t know how short, but it’s definitely looking more like weeks than months, if not days. Again, I know. It’s harsh and blunt, but we don’t want anything to come as a surprise to anyone. We don’t know what this will mean for an open house. We’re still trying to figure things out. If we don’t end up going through with it, we hope you’ll understand. We’ll let you know when we have a plan.
For now, we are amazed and thankful that God has opened the door for us to bring her home so that we can be a family here for whatever time He has given. We prayed last night as we always do - thanks for her life, protection through the night and healing for our sweet girl. We still have faith in a mighty God who can heal and we won’t stop asking that of Him. As always, we rest in His love, knowing that no one loves Lydia more than He does and that His will is perfect.
Stay tuned for LYDIA’S HOMECOMING PICTURES! I can’t wait for you to see the outfit I’ve been saving to bring her home in! Hopefully it still fits...
Wednesday, September 23, 2009
Update - September 23
Quick update for tonight. It was a nine hour day at the hospital.
From around 2:00pm today until we left her at 8:30pm tonight, Lydia was having seizures. Most of these came with substantial drops in her oxygen caused by her not breathing and she turned blue several times. The first big desat she had when she stopped breathing, our nurse Rachele turned to me and said, “I want you to bag her” meaning I needed to try to breathe for Lydia since she couldn’t breathe for herself. She knew I was nervous about this happening at home and me not knowing what to do. I took the bag, smooshed it down onto Lydia’s tiny little face and started giving her breaths. After about a minute and a half she started to breathe on her own again. I promptly sat down and burst into tears.
This happened multiple times over the next five hours (minus the me bursting into tears) and Micah and I took turns bagging her to get her to breathe again. On the plus side, if you can call it that, all the nerves we had about what would happen if she had these episodes at home are pretty much gone. I think the NICU was ready to hire us.
The doctor is still really pushing to get her home tomorrow. They’re working on getting her meds worked out so she’ll be stable enough for a car ride. Finding a combination that works to control her seizures is proving more difficult than they thought, and they don’t seem terribly hopeful that it’s anything they can control long term.
We just spoke to Rachele and she’s been OK for the past hour. It’s amazing how after a day like today we say, “Thank You, God!” for an hour seizure free.
Please keep praying. Now that we know how to manage her desats, we’re not as afraid. We want her home with us for whatever time we can have her. As always, we are still so thankful for our sweet girl. Every moment is a sweet gift from our God. Even the hard ones.
From around 2:00pm today until we left her at 8:30pm tonight, Lydia was having seizures. Most of these came with substantial drops in her oxygen caused by her not breathing and she turned blue several times. The first big desat she had when she stopped breathing, our nurse Rachele turned to me and said, “I want you to bag her” meaning I needed to try to breathe for Lydia since she couldn’t breathe for herself. She knew I was nervous about this happening at home and me not knowing what to do. I took the bag, smooshed it down onto Lydia’s tiny little face and started giving her breaths. After about a minute and a half she started to breathe on her own again. I promptly sat down and burst into tears.
This happened multiple times over the next five hours (minus the me bursting into tears) and Micah and I took turns bagging her to get her to breathe again. On the plus side, if you can call it that, all the nerves we had about what would happen if she had these episodes at home are pretty much gone. I think the NICU was ready to hire us.
The doctor is still really pushing to get her home tomorrow. They’re working on getting her meds worked out so she’ll be stable enough for a car ride. Finding a combination that works to control her seizures is proving more difficult than they thought, and they don’t seem terribly hopeful that it’s anything they can control long term.
We just spoke to Rachele and she’s been OK for the past hour. It’s amazing how after a day like today we say, “Thank You, God!” for an hour seizure free.
Please keep praying. Now that we know how to manage her desats, we’re not as afraid. We want her home with us for whatever time we can have her. As always, we are still so thankful for our sweet girl. Every moment is a sweet gift from our God. Even the hard ones.
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