Update - September 10 (first day at Yale!)

Today - so many things. Our little girl is exhausted and so our we!

We got a call this morning to let us know that Lydia had a pretty substantial seizure last night accompanied by a large drop in her oxygen. They had to use the bag to get her back up, she turned blue, the whole bit. The wonderful thing about being at Yale is that right after that episode, they called a neurology consult down to see her. At Bridgeport, they would have had to wait until the morning and then call her neurologist to discuss and he (without seeing her) would have made recommendations.

Today when we arrived, neurology was down with her again and she was having another EEG. They did a variety of tests to see how responsive she was and they were actually very encouraged by her responses. Though her responses were slow and somewhat weak, she was responding and that was more than they thought she would do.

She was visited today also by cardiology who did another ultrasound of her heart. Also ophthalmology came and checked her eyes again (she’d had one at Bridgeport). They said that her eyes looked good. She had an ultrasound of her belly as well to check and make sure her organs were in tact and functioning. We haven’t heard anything back at this point about that. She was also visited by several geneticists who are the ones who we are really hoping will put a name on what she has.

We’re so thankful to have her at Yale. It’s amazing to watch the efficiency with which things get done. We do miss the environment at Bridgeport and we’re so thankful that she could spend the first weeks of her life there as they took such good care of her. We trust now that she’s in the right place. Her new neo-natologist is wonderful. He’s very kind and attentive, he gives us information clearly and answers all of our questions. His goal is the same as ours - to get her seizures under control, her breathing stable and to get her home.

She was having little seizures all through the day and the neurologists decided that she needed to get put on another medication. They had one set to go, but the think her liver is working to hard with the medication she’s on now, and the second medication has similar enough properties that they didn’t want to put her on it. They chose another medication (which is one that doesn’t have to be given through and IV, thankfully). We called a little while ago to check in on her, and she hasn’t had any seizures or desaturations in her oxygen levels since they started the new medication. PRAISE GOD!

We told our doctors, nurse and the geneticists that they are currently being covered in prayer from all sides, so please don’t stop lifting them up to our God for wisdom and discernment on how best to diagnose and treat Lydia. Please also pray that this new medication will keep her stable and seizure free.

When we could stop and take a breath today, we found ourselves thankful. We hope that in the midst of your crazy, stressful lives you will have a moment and be able to find the same thing. He is good. There is no doubt about it.

Pictures - September 9

Pretty outfit from Jean Hickman!

Most expensive ride she'll ever take!

Cozy inside the isolette.

New "home" at Yale.

Update - September 9

Another fun-filled day for the Thompson family.

After talking with the doctor today, we decided that it would be best for Lydia if we made the move to Yale. There are neo-natal neurologists who will hopefully be able to figure out where to go from here. They can also give us a lot more ideas of other medications she could be on to help control the seizures since the current medication isn’t cutting it anymore. Around 4pm, a transport unit came and put her in a travel isolette (incubator type thing) that costs more than all of our cars put together! We went and saw her up at Yale and she’s settled in well and the nurses are taking good care of her. The doctors left before we got there, so we haven’t met them, but we’ll let you know when we talk to them.

I want to take a slight deviation from the normal blow by blow of the day and tell you instead how God helped us SO much today. It’s such an amazing testimony to the communities we are a part of.

The doctor approached us this morning about moving her to Yale. I was very hesitant because the idea of moving her away from us was difficult for me. We’d begun to prepare ourselves for her coming home soon, and had gotten so comfortable at Bridgeport, the idea of change was upsetting. We had a visit from a mom of former students (a wonderful lady who has become a dear friend) and she happens to be a NICU nurse at another smaller local hospital. Knowing the limitations of smaller hospitals and the benefit of having many specialists to offer care, she recommended the move. So many more people will see her and have the chance to offer input and that will move us closer to a diagnosis, and if not a diagnosis, then at least stability that will allow us to bring her home. After speaking with her, we felt peace and confirmation that moving her is the best thing to do. It was a gift that she was there at that time to offer wisdom in our circumstances.

When we went to sign off on transport papers and to help get everything together to move her, our minister was already at the hospital waiting for us. After they had wheeled her off to the ambulance that costs more than our house, Thad encouraged us by saying change is always hard but in his experience, it’s for the better. It’s hard and stressful, but it will be beneficial in the long run. Again, God brought us support when we needed it as our little girl was taken away.

Then we made the drive to New Haven. I, again being the general basket-case I am, was stressed. New Haven is stressful. Being in a new place with new people we don’t know and who don’t know us and Lydia was really getting me worked up. We parked and walked into the hospital. One of the first people we saw was another parent of a student from school whose daughter was unfortunately in the hospital. She showed us the elevators and was very encouraging. Once we got into the NICU and I was weeping profusely from being utterly overwhelmed by the day in general and the feelings of unfairness that wouldn’t stop washing over me, she came up to visit. Micah, in all his great husband-y wisdom, let her come in and sit with me and what a blessing! We had a little chat and I was so encouraged. She said it first - it was a complete God thing. Of course I would much rather she didn’t have to be there with her daughter, but I’m so thankful that she was.

That God. He knows what He’s doing. We are so blessed to be a part of so many wonderful communities that allow God to work through them.

So here are the prayer requests: her seizures are not controlled and she’s been having difficulty keeping her oxygen levels up. Again, not horrible but not great. Please pray that the neurologist will see her soon and get the medications for her figured out to get the seizures under control. Beyond that, we just want to bring her home. Pray that the doctors will be willing to work with us toward that goal. Diagnosis is important but we don’t want to wait forever to get all the test results back. So whether we have a diagnosis or not, once we get her breathing set and seizures under control, we want to bring her home. Please pray for strength as we now have a much longer drive and more high stress place to deal with. And of course, we still have desire and have faith in complete healing and ask your continued prayer for that as well.

Sorry if this is all discombobulated, but I’m tired tonight. Thank you again for your prayers. We feel you upholding us through the day and are always thankful for you.

Special thanks today to (and for) Sarina, Thad, and Lorna.

Update - September 8

Just a quick update for tonight.

This morning the hospital called to tell us that they had to put Lydia back on the nasal cannula. Not a huge deal, but I think they’ve realized that whenever something happens that seems like a step back, they need to tell us, otherwise the crazy lady (me) will burst into tears. They were giving her a little oxygen with the cannula because her oxygen saturation was dropping (like I mentioned yesterday).

She also had the upper GI test today. It was really fun to see pictures of her insides. The doctor who was performing the x-ray was pointing at things on the screen and because she knew this would upset us, the neo-natalogist kept turning around and giving us the thumbs up and mouthing that everything was OK. They said (after preliminary readings) that her system looks good. We’ll hear more when we talk to the doctor tomorrow.

As of right now, she’s still scheduled for her G-tube placement surgery, but one of the doctors told us that we might not need to do it if we could feel comfortable inserting the tiny feeding tube into her nose and mouth (like she has now). One doctor told us this and the other told us last week that we couldn’t bring her home without the G-tube, so they and we still need to make a decision about that.

Thankfully, the doctors have finally verbalized to us their desire to try to get a specific diagnosis for her. They’re making calls to different doctors in different places and doing more blood tests to rule things out. Some of them are scary...so, let’s go ahead and pray against those.

Tonight, they had taken her off the cannula. Her levels drop every now and then, but then they come right back up. She was wide awake tonight too, which was fun and she was CRYING which is great because she almost never cries but it’s also just terribly heartbreaking because she has the saddest little cry. The doctor said she was OK enough to be taken out of the baby toaster and put back into the baby cage and we all know what that means...MORE PICTURES OF CUTE CLOTHES! Sorry people, it’s my happy place right now.

We’ve gotten so many encouraging e-mails and messages these past couple of days and we’re so thankful for all of you. Please keep the prayers coming! Also, please add Germany, Venezuela, and North Africa to the list of around the world praying people. We’re amazed and thankful that God is being glorified in our baby girl.

So hey, not such a quick update. I’m magnificently long winded.

Pictures - September 7

Beautiful sweater from Jenny Fraser (my uncle's wife's mother who lives in Scotland!), made by one of her friends. So cozy!

Sleepy peanut.

Tiny baby ear.

Beautiful heart necklace.

A gift from Great Grandpa Roy and Great Grandma Flo!

Update - September 7

That past couple days have been very up and down...mostly down, actually. Nothing too serious, so don’t worry, she’s just having a hard time.

Saturday night after we left her she started having a tough time again. The doctors told us when we arrived Sunday morning that she had several episodes where her oxygen level dropped (not too low, but low enough the doctors didn’t like it) and she presented with “seizure activity.” They tested her medication levels again and they were still low, so they gave her another large does of the seizure medication. She showed some seizure activity when we were there but in the few hours we stayed, she seemed to stabilize again. When we went to see her in the evening, she was struggling a bit, but was fine again by the time we left.

This morning when we arrived to see her, we found that the same thing had been going on - dips in her oxygen and some possible seizure activity. They did increase her regular dose of the medication again and we were hopeful that would take care of it.

When we went back this evening, they had taken her out of her regular “baby cage” crib and put her back into a baby toaster. The reason for this is that she was again showing signs of seizure activity. When she’s all bundled up, they can’t see it as much and they needed to keep her unbundled and clothing free so they can watch her closely. They put her in the toaster to keep her warm. She did OK the rest of the night and was breathing consistently with good oxygen levels.

The reason this is not so good is because the level of her medication is quite high. To put it in perspective, last weekend when she was having the repeated, very obvious seizures, her medication level was at 27. It was about that earlier this weekend when she was struggling but today, her level was at 45, higher than the therapeutic level. The fact that she seems to be having what they call “breakthrough” seizures on this high a level of medication is not a great sign. They are concerned that the current medication might no longer be controlling her seizures and they will have to switch to another medication. The problem with the new medication is that is has to be given through and IV, which would seriously delay her homecoming. They will wait a couple days and watch her to see what she does and the neurologist will decide what to do depending on how she behaves.

So, there’s still a lot to pray for. The doctors said she’s still OK to have the GI test tomorrow, so we’re still hoping everything will go as planned with the G-tube surgery. Her test tomorrow is at 10am, so please just pray that everything goes smoothly. Please continue to pray that we can get her medication levels figured out and for no more episodes of low oxygen or seizures. Above all, please continue to pray as we do for complete healing.

I’d love to say that we’re taking this all in stride and that none of it scares or worries us anymore, but that would be a really huge lie. Every day that something goes wrong, there are feelings of defeat, sadness, frustration bordering on anger...all those good things. But in the midst of all of those emotions, God continues to give us grace for each day. When we come home at the end of the day, we leave Lydia breathing peacefully and taking in plenty of oxygen. We know that’s God giving us peace knowing that she rests in His hands when we’re not there to take care of her. If she wasn’t OK, we’d probably never leave her.

Although we’d always rather that she didn’t need all of these prayers, we are amazed to see that God has gathered people around the world to pray. We’ve got people all around America, in Rwanda, in Thailand, Nepal, Bermuda, Panama, Serbia, Scotland, England and Columbia (that we know of) in prayer for our sweet girl. We’re in awe of the support for our family and will be thankful always, should God choose to heal her or not.

I’m sorry to end everyone of these the same but thank you for your prayers. You have no idea how God is using them to sustain us.

Bumblebees

Lydia's Aunt Carola (Micah's brother's wife) is a crocheting wiz. She made this sweet hat and bee for Lydia. She also wrote this poem. I was so blessed to read it and remeber how even in the everyday things, God makes the impossible possible. Thank you, Carola!