Friday, April 30, 2010
Evie had her appointment with the neurosurgeon yesterday... and while I can't say I'm surprised at what he said, I can't say I'm exactly ready for it either.
In a nutshell, babies have all of these plates that form their skull, and between the plates are sutures. These sutures stay open so that as a child's brain gets bigger, the skull has room to grow. Well Evie's front 3 sutures are closed (craniosynostosis) which is why her head seems to be growing up instead of round. The problem with Evie's skull isn't really the shape, but the fact that pressure is building up in her brain. Her main soft-spot has been bulging for months, because as these sutures close more and more, her brain doesn't have anywhere to go but up.
The neurosurgeon is recommending doing a "decompression" of her skull, which is surgery. Basically they will make a wavy cut from one of Eve's ears to the other across the top of her head, and open the closed sutures. They secure them with dissolvable plates and screws. The shape of her head will change, and they will move her forehead farther forward.
The good news is we have heard nothing but wonderful things about the neurosurgeon. People come from out of state to see him. He has very good people skills and made us feel comfortable with the surgery process. We will go to a cranio-facial clinic at the end of May and schedule surgery in June which puts it past the birth of our new nephew (yay!!!!!) and my little sis's wedding. It's actually remarkably good timing (God is good).
The bad news is, I'm scared. I haven't gotten the wind knocked out of me since I was a kid, but I had a few flashbacks today... a not very nice mix of nausea and chest pain in one swift kick. They will shave Evie's head, cut it open, peel it back, and cut her bones apart.
And the great news??? God is good. Evie needs surgery. He will take care of her. He already has.
When Eve is upset I rub her head. I love her soft little whispy baby hair.... and if you know my kids, you know that ANY hair is not to be taken for granted (: I will be accepting donations of beanies and hats to cover Evie's scar for the next three years or more until she has hair to cover it. (:
Lyla and I just started reading the Jesus Storybook Bible tonight, and after God created everything it says
"God saw all that he had made and he loved them. And they were lovely because he loved them."
I trust God with Evie's life, I really do. With every fiber of my being I know that he has healed her body and kept her living here with us. She is lovely and loved... I am lovely and loved too. We are both wrapped in the love of our creator. Boy do I need that. I'm going to breathe that in when I start to lose my air. Thank you Jesus Storybook Bible (:
Love you friends (: In case you haven't felt it lately, you are lovely and loved too (:
I will update soon.
Tuesday, April 27, 2010
Monday, April 26, 2010
THANKS for praying... we are doing Evie's 3D CT Scan tomorrow! We go in at 1:15 and they will try to do it without sedation, and if that doesn't work they will give her a little oral sedation. The best news is, the scan takes TWO MINUTES. Yes, you heard me, after two minutes they will have a 3-dimensional view of Evie's whole skull. And I was worried about intubation... sheesh!
Since Evie has had some trouble with sedation in the past I'm going to pray pray pray that she somehow stays completely still for the first 2 minutes, and we won't need to sedate. I will be keeping her up all morning, feeding her before we go, and taking her in all wrapped up in her warmest blanket ready for nappy time. Any good hints to getting a 10 and a half pound 7 month old to lay completely still are very welcome.
Thank you in advance for praying for Evie. It blows my mind time after time how God answers my prayers, even when I am stressed our about something that I don't know takes TWO minutes. Did I mention the scan takes TWO minutes? Still wrapping my brain around that one.
Will update after the scan! Love YOU friends!
I forgot to mention, I took Evie in for her x-ray this morning, and she smiled through the whole thing. Not even a frown, let alone a tear. Her lungs are still a little cloudy, but I could see the ends of her bones more clearly than ever. Praise God for improvement!
Sunday, April 25, 2010
Thanks for your prayers! Evie seems to be doing well. We have a really big week this week...
Monday Evie has an x-ray to see if her lungs have cleared up at all, if they haven't they mentioned putting her on a C-Pap machine (i think that's what it's called), kind of like her oxygen cannula that she has now that goes up her nose... except it has bigger tubes that seal off her nostrils and push air in to help expand her lungs. Yikes... hoping to avoid that!
Wednesday we meet with Dr. Sammut, Evie's pulmonologist to talk about her x-ray and see what direction we need to go...
Thursday we see Dr. Puccioni. I can't tell you how nervous I am about this appointment. Mostly because we have been waiting 3 and a half weeks to see him, and it's finally here.
BIG PRAYER REQUEST: Dr. Puccioni wants a 3D cat scan of Evie's skull. She may have to be intubated (on the ventilator) to do this... so her lungs would have to be in great shape. Will you pray that her lungs are crystal clear on x-ray tomorrow so we can get the cat scan done? We have already waited 3 weeks to see this doctor, it would be such a bummer if we didn't have the scan he needed when we went to the appointment. We have the MRI, and a normal CT scan, but it looks like the 3D scan is the one with the most info.
Thanks for praying for us, we had an awesome weekend... Lyla was a flower girl in a good friend's wedding, it was an absolute blast! John and I had so much fun getting out with the girls (: Wedding photos to come!
Photos from last week:
ahhhhhhhh naptime..... i love you...
photos by Brian Lehmann
Tuesday, April 20, 2010
Thanks for praying for Evie, keep those prayers coming! The good news is, we haven't been hospitalized again yet. PRAISE the LORD! The not so great news... the chest x-ray of her lungs from yesterday looks WORSE than when she left the hospital after having RSV. Not good at all. So we are keeping her on breathing treatments and antibiotic, and are going to add a cough-assist device to try to shake out some of that gunk. Her pulmonologist said if we don't get it out she is going to get a nasty pneumonia. Unfortunately she has little patches of collapsed lung in all 4 lobes, which is a bummer.
She actually looks a whole lot better than she did last weekend, on Sunday she could barely smile at us, and today she seems happy as a clam as long as we keep on top of her breathing treatments and keep her nose all clear.
So keep praying for clear lungs, I thought there would be an 85% chance we would be in the hospital yesterday, so hopefully we can kick this one at home with a cough assist and God's help.
Love and blessings!,
Thursday, April 15, 2010
Could you say a quick prayer for Evie? Lyla brought home a mild cold last weekend, and unfortunately everything ends up being serious for Eve. We are giving her breathing treatments every 4 hours and an antibiotic to hopefully kick it sooner than later. She has a terrible cough and isn't sleeping well.
Thanks friends, we are so blessed by the many people who are lifting Evie up in prayer every day! Love you!!!
Wednesday, April 14, 2010
We had a great opportunity last Thursday to go to the Children's Respite Care Center Pool Party! We were invited by some friends who have gone to a few events, and we had a blast. It was fun to get to know some other families and just enjoy swimming (:
Sunday, April 11, 2010
Well we made an appointment with a neurosurgeon for April 29th at the beginning of this past week... but I was secretly hoping we could get it moved earlier so I had yet to blog it and make it official... but it's official. We will be seeing Dr. Puccioni, who is supposed to be a rockin neurosurgeon, so we are happy about that. John has actually heard of him around the OR at UNMC, so that is probably a good sign.
The results of Evie's MRI are kind of up in the air. On the CT that she had in the hospital in February it looked as if her sutures were wide open. On the MRI last week it looked like they were completely closed! Unfortunately with hypophosphatasia, Evie's bones are so demineralized it's hard to tell the difference between what is bone and what is cartilage. There is another fancy CT scan that makes a 3 dimensional view of the skull... and that may be our next step. I am going to try to push and have that done before our neurosurgery appointment... so I can take the original CT, the MRI, and the new 3D CT, and hopefully by putting the three of them together we can have a better idea of what we're looking at.
I am also trying to find some other parents whose kids have had craniosynostosis surgery to see how the experience was for them. If you or anyone you know has done the surgery, I would love to chat with you. I would love to find someone who has had hypophosphatasia AND the craniosynostosis, but with the disease being so rare, it's been a challenge!!!
On a lighter more wonderful note, we had an awesome Sunday, with a great message at church this morning, and fun afternoon at Bible Study. I hope I never take for granted the blessing of being part of God's family, and being loved by His people. I am so thankful for the trials of this past year and my deepened appreciation for the love of God.
We have an easy week, just PT on Wednesday and a pulmonology appointment Thursday morning, so I am planning on spending a lot of time outside in this beautiful weather!
Love you friends! Will update soon (:
Sunday, April 4, 2010
Saturday, April 3, 2010
Hi Friends (:
Sorry it has taken me so long to post this, the MRI went great! It was so so so hard for me to say goodbye to Evie when they took her into the MRI room, but it felt good to cry it out for a few minutes and remember what a blessing it is that I get to hold her close every day. They went ahead and intubated, and she was extubated right away with no problems. It is SUCH a relief that we didn't have to stay in the PICU overnight, I was thinking that was highly probable. She has been doing good since we have been home, still very congested, but her happy little self.
We are still waiting on official results. We have some preliminary results, but we won't really know how to interpret them until we hear from the Neurologist or Neurosurgeon. It seems that one of Evie's fontenelles (soft spots) has prematurely fused, and we may be looking at Craniostenosis. Not a great diagnosis, but not necessarily terrible. She doesn't have any masses, or hydrocephalus (build-up of fluid) which is great.
When I hear official word from the docs I will let you know!!! Thanks for praying, I felt God's hand of protection over me when a friend from the PICU took the time to come down where I was waiting and make the time go quicker. It was not only great to see her, but knowing she took time away from her family to see me was humbling and wonderful.
Love you friends!