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):
http://en.wikipedia.org/wiki/Zellweger_syndrome
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.
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.
Friday, September 18, 2009
Wednesday, September 16, 2009
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.
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.
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!
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!
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.
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