Tuesday, September 29, 2009

Update - September 29

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.

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.


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.

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


Going home outfit!

In the carseat!

Safely home! Thank you Sarina for riding home with us!


In her crib. HER CRIB!

Aunt Liz!


Uncle Scott!

Great-Grandma Thompson!

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.

Tuesday, September 22, 2009

Update - September 22

Sorry we haven’t updated in a few days. As always, it’s been some pretty intense ups and downs for us.

We were hoping to bring Lydia home tomorrow, but on Sunday she had several substantial seizures. They had to give her breaths because she couldn’t breathe on her own for three minutes. We’re trying to get some answers about her medication and possible stability before we try to bring her home. The waiting is killing us. Leaving her every day is painful. We just want her to be here with us. Nothing is that easy. Please keep praying that God would make clear the path to bring her home.

Meanwhile, here are some thoughts from Micah that sum up a lot of how we’re feeling these days:

“Yesterday we were overwhelmed by C.S. Lewis.

We have been reading the Chronicles of Narnia to our baby girl over the past month, and have lately been reading The Horse and His Boy.

I won’t give away the story, but there comes a place in the book where the main character, Shasta, comes face to face with the Lion, Aslan, who Lewis often uses to picture Jesus. Although they are fictional books, Lewis works in a great deal of theology, and so they bring me face to face with both my faith and my grief, and the gap that exists between the two.

In the book, Shasta begins asking Aslan all about his own life, and the Lion shows how He has faithfully guided the life of this young boy. The fact that he did not realize Aslan’s presence did not make it less real. Once Shasta understood his own story, he began to ask about how Aslan has been active in the lives of his friends, and Aslan says “I tell no one any story but their own.”

We want so desperately to know the story of Lydia’s life. We want to understand why she is the way that she is. We want to know how it brings glory to God for her to be in the hospital day after day, and to work so hard to breathe. Someday, we will get to ask her about it, and we’ve already gotten hints about how her life has affected others.

I suppose it’s human nature to want to find purpose in these times, but we are struggling to find one.”

Despite our lack of understanding, what we DO know is that just as Lewis says about Aslan, though He might not be safe and predictable or comprehensible, our God most certainly is good.

Friday, September 18, 2009

Update - September 17

So, do you want the good news or the bad news first? Good news? OK.

Lydia’s surgery went wonderfully. Since her breathing has never been very strong, the doctors were concerned that she might not come off the ventilator very easily. We were prepared to go into the hospital yesterday and give her a pep talk to start breathing on her own. When we got to the hospital, she was already off the vent, breathing with just the nasal cannula! She was also wide awake and looked at us when we said hello.

So, now the bad news. We met with the doctor and the geneticists yesterday and they have confirmed her diagnosis. Remember that one test I told you they were doing that I said we really, really didn’t want her to have? It’s called Zellweger Syndrome and that is what she has been officially diagnosed with.

Basically (in very simple terms because I honestly can’t understand a lot of it), it’s a genetic disorder that causes her cells to not be built correctly and it’s this that has caused the problems in her brain, the seizures, problems in her liver and eventually problems in her kidneys. If you really want to look into it, here’s an article you could read through (containing many words that are difficult to pronounce):

There is no known cure for Zellweger Syndrome. The prognosis for children with Zellweger is not good. The life expectancy for a child with this syndrome is anywhere from 2-18 months. It depends on the treatment plan we decide on with the doctor and pediatrician.

It’s pretty much the worst news we could have gotten yesterday. There was no small amount of weeping during the conversation (some of which was coming from our sweet nurse Pauline). But we were kind of prepared for it. A couple days ago, they told us it was in the same family as Zellweger if it wasn’t actually that. When we did some research, it was really the only thing that fit. God was getting us ready for it so it wouldn’t come as such and enormous shock to us. Of course, there’s no really being ready for it.

It’s amazing - I’m sitting here typing this and it’s not upsetting me because I honestly still cannot believe it’s really happening. Every word I type I say to myself, “Wow...sucks for them” and then I think, “Oh right...I’m ‘them.’” It’s intensely unreal.

We’re still planning to bring her home. The seven day reset for every breathing or seizure episode is now cancelled. The doctor understands that this is just how she’s going to be and since we have no idea how much time she has, we all want her home as soon as possible. We need to get the equipment and learn how to use it and then we’ll be able to bring her home.

We know you have been praying so faithfully and I really didn’t want to have to give you bad news. We wanted God to heal her - we wanted all those prayers to be answered. And He can still do that. We have faith that He can. But we are also accepting whatever it is He has ordained. Since the moment we found out I was pregnant, over and over we committed her into His hands, knowing that she never really belonged to us. For her to be in His hands is the safest place she can be and that is where we will continue to leave her.

Once she’s home and stable, we’re planning to have some kind of open house so that everyone who wants can come and meet our sweet girl so stay tuned for more updates and info on that.

Our love and thanks to you all for your continued support for our family.

Wednesday, September 16, 2009

They had to put some warming lamps on her because she was a little chilly. The hat is to keep the light out of her eyes.

New sign the nurses made for her.

Sleepy girl today.

IV in her head and in her arm (for fluids and meds), ventilator and feeding tube in her tummy. Big day for our little girl.

Update - September 16

So here’s something that is not fun: phone calls early in the morning from the hospital.

Last night she had a substantial desat in her oxygen (down in the thirties when it should be in the nineties) and they had to use the bag to get her to breathe again. This resets the clock for seven days without any problems before we can bring her home - so earliest will be next Wednesday.

She showed some seizure activity this morning, so they are upping the new medication level to help control that.

Turns out, it’s pretty rough to watch your tiny baby get wheeled away from you into surgery but thankfully, everything went smoothly and there were no complications. They still have her on a ventilator for a couple reasons. First, they want to see she’s showing signs of breathing on her own and since that won’t happen until the anesthesia wears off (which will take her longer due to her liver function) she’s on it until at least tomorrow. Also, if she shows signs of being in pain or if they think she’s in pain, they’ll give her morphine which will make it difficult for her to breathe, so they aren’t taking chances in removing the ventilator before she’s ready. She was nice and stable and starting to squirm around when we left and we’re hopeful she’ll recover quickly.

It was a pretty crappy day. We’re thankful that surgery happened and that it went well, but she had some really good days all in a row and today, with the oxygen drop and seizure activity, we are sad and discouraged. But as always, God reminds us that He is with her every moment. Today as we were walking out, another mom was sitting with her baby and as we were leaving she got our attention. She told us that when she sits with her baby, she prays for all the other babies in the room (as we very often do). She said she was praying out loud for Lydia and her husband noticed that Lydia had her eyes wide open and was looking at them. When her prayer ended, she closed her eyes and went back to sleep. The mom said she could tell that God was clearly with Lydia and that she would continue to pray.

Thank you all so much for praying for Lydia during her surgery. We know it went so well because of all the prayers. We’ll keep you posted as she recovers.

Tuesday, September 15, 2009

Pictures - September 15

Wide awake!

Toadally cute! :)

This is the onesie I used to tell Micah I was pregnant.

Snuggled into her blankets.

Awesome giraffe ensemble from Jamy!

Update - September 15

OK - big things to pray for tonight. Mostly one.

She’s having the G-tube put in tomorrow at 1:30pm! Although it’s a pretty simple surgery comparatively, it’s still abdominal surgery on a tiny baby girl. When we spoke with the doctor yesterday, he told us that the surgeons gave him a date for sometime next week, which he promptly deemed unacceptable and got them to schedule her tomorrow. This is why we like him.

The really big concern for tomorrow has to do with her breathing. They will be putting her on a ventilator for the surgery and they are nervous that since her breathing goes up and down that she might have a difficult time coming off the ventilator once they put her on it. We happen to think that she breathes better than they think (since we’ve seen her with NO breathing help for several days at Bridgeport) but they’re going to be overly cautious with everything they do for her, which we’re thankful for. Please pray that there won’t be any problems when they intubate/extubate her and that she will breathe quickly on her own again.

The other possible complication is the anesthesia they have to give her. Since her liver function isn’t what it ought to be, she might have a slower time processing the meds and that will keep her on the ventilator longer - you get the idea. It’s all connected and we’re praying that God will orchestrate it to His perfection and bring her in and out without any problems.

Good news for today - it was another seizure free day without any breathing episodes. She was awake a lot today and moving all around! They are also getting us ready to bring her home! We met our Care Manager today who helps us get everything set up for bringing her home. She has gotten in touch with all the people who will get the machines to us that she will need and they can teach us how to use them also. We’re working on a “discharge plan” so when she’s ready to go, we’ll be ready for her too. WOOHOO!

We know we ask for your prayers so often and are so thankful for how she is being upheld in prayer. Please, if you think of it, be praying for her tomorrow afternoon.

God is good. If you don’t know, just ask Lydia. We’re pretty sure He hangs out with her a lot.

Sunday, September 13, 2009

Update - September 13

Arts and crafts for Lydia's room! That's a picture of her Great-Great Grandma Lydia!

Snuggle times!

Out of the baby toaster and into a crib!

Pretty outfit from Carrie Keegan!

Bumblebee hat made by Aunt Carola!

It’s been a few days since an update and that’s mostly because everything is OK and nothing really is all that new.

Since Wednesday, Lydia has been seizure free and hasn’t had any drops in her oxygen! She is on a very little bit of oxygen every now and then when her level goes down slightly and doesn’t come back up, but it never goes down dangerously low, so she’s doing well. The new medication seems to be controlling her seizures very well. They’re not sure if that’s in combination with the old medication or not, but they’re allowing the level of the old medication to go down slowly. We’re hoping that allowing the old medication level to go down won’t cause any more seizures. Please continue to pray that this is the case - that the one new medication will control her seizures.

We still haven’t met with the surgeon, but we’re hoping to have surgery scheduled for early/mid this week. If all goes well and she recovers well without having more seizures or drops in her oxygen levels (so, in other words, if all goes PERFECTLY) she might be home by this weekend. We know that God can work perfection, so please pray that it will be so. We really want her home, but we want her home safely most of all.

She was awake a lot tonight and was looking around and moving her head, arms and legs more than in a while. We love seeing her beautiful blue eyes and have her pull her arms and legs away from us when we try to move them for her.

I wept through much of church today, as worship was focused around the holiness of God. To declare His holiness is to declare Him and His will perfect and it’s difficult to do while walking any hard road. But to know He is holy and that every moment of our lives and her life rest in His perfect control brings comfort beyond words and release that is both heartbreaking and wonderful at the same time.

We continue to rest in that knowledge, but pray in faith for her healing as we know so many of you continue to do.

We’ll keep you posted as we hear more about diagnosis, surgery and homecoming and really can’t wait for all of you to meet her!

Thank you so much for your prayers.

Friday, September 11, 2009

Update - September 11

Snuggle times!

Her mouth is all crusty because she's in an incubator and gets really dried out.

Doing a lot better today!

Today was a better day than we’ve had in a while, sort of.

Lydia did a lot better today. She hasn’t had any seizures or substantial oxygen desaturations since yesterday morning! The medication they switched her to, in combination with the medication she’s already on seem to have her stabilized. We’re hoping that they’ll be able to take her off the medication she’s been on since birth and that the new medication will keep her seizure free. This is really great because the new medication doesn’t have any bad side effects.

Her doctor is already pushing to get her home to us soon. As always, we still need the same things to happen. She needs to breathe well on her own and not have seizures. We also need a way of feeding her. We’re pretty sure a G-tube is the way to go, although the doctor has his concerns. To do the operation, they’ll have to intubate her (put her on a ventilator). For babies who have a less than perfect time breathing, it can be difficult to get them to do OK off of it once they are put on it. The doctor is hopeful, however, because she has already been on one and came off of it without problems.

Some of the test results came back. Most of them showed nothing, but the ultrasound of her belly showed something the doctor didn’t expect. She has “innumerable” cysts on her kidneys. Thankfully, this doesn’t seem to be causing any problems with her kidney function. It is another piece of information that will hopefully point towards a diagnosis. They do have one syndrome in mind that she has several markers for but we have to wait for a blood test that will probably not be back until mid-week next week. We would ask you to please, please pray that it isn’t this syndrome.

It was nice to be able to spend some good time with her today without doctors coming and going and poking her and picking her up every five minutes. We got some good snuggle time together and she slept a lot today. We’re hoping they’ll soon take her out of the incubator and put her back into a regular crib. When that happens, I promise more pictures of cute clothes.

We are exhausted but for the first time in several days, we are hopeful to have her home before too long. We are thankful for the men and women working with her and as always, we are thankful for you who pray for Lydia, for us and for the doctors and nurses. I know we ask a lot of you, but please keep on praying. We know our Father in heaven is listening and using those prayers to change our hearts and our lives and hopefully yours too.

Much love and thanks to you all.