Thursday, July 31, 2008
It's truly amazing, this journey we're on. And we couldn't have a better support group than the one we have right here. We'll know a bit more about the shunt possibility tomorrow after she has her head ultrasound. But things are looking very bright.
This could be have a major effect on the day-to-day care of her, for the rest of her life - so please pray extra hard for her today. We'll certainly keep you posted as to the results, as we find them out.
No noticeable increase in the size of her noggin so far, so keep those prayers coming.
Special thanks to Daryl for sharing about his shunt. We've been praying for you too Daryl.
Wednesday, July 30, 2008
Doc ordered another head ultrasound for Friday, so keep them prayers a-coming. Thanks for all the encouraging posts...they make our day brighter every time we read them.
Things finally seem to be levelling off on the rollercoaster ride. We know the ride's not over, but at least we're able to fall into a bit of a routine without many surprises. Dr Handler shd be back this evening to remove the temporary shunt, so pls pray that she will do fine without it.
It's so amazing how many lives we've touched with this site, as well as how many have inspired us with their kindness, love, and prayers. We had no idea this would turn into what it has. It (or shd i say you all) have played a crucial role in helping us get through this difficult time. We love and thank you so much. And we continue to look forward to reading and rereading your comments.
Tuesday, July 29, 2008
We want to take a moment to thank all of you for your prayers - they seem to be working. Little Alex had a head ultrasound this afternoon to monitor the fluids in her brain. After reviewing the pictures, Dr. Handler determined they will pull the external shunt out tomorrow night and see if this has any effect on the fluid. If the levels stay in the normal range, she will not need a shunt (for the time being) and she could be home as soon as this weekend.
All of this goes to show how powerful prayer is, and we still need more of it. 90% of SB kids have shunts, many of them requiring replacements throughout their lives. It's still very possible that this may be a reality for Alex, and the rest of this week is a critical time in determining that.
But for now, this is wonderful news. Praise God.
So each of her feedings today has come through a tube. But just now she decided to finally take her 1st bottle. We're very happy. Of course she never actually opened her eyes to do it, so we're still praying nothings wrong. But she took the bottle, and that's enough to be thankful for. :)
We're okay. Of course it's difficult being away from her, but we're seeing that our faith is carrying us much further than we ever could've imagined. Claire's comment (click here to see it) inspired me to share a bit about our faith journey.
Maybe a month ago, Nic & I went through the Bible in search of words of encouragement. She was feeling especially weak, and questioning so many things. We had just come back from possibly our worst doctor's visit yet. The doc was doing an ultrasound, and he sounded concerned. We've sensed that concern before in him, and we knew that "I'll talk to you in a minute about what this means" already meant something terrible - and our hearts dropped. Tears fell. He looked a bit more, then told us that he saw some things that made him worry about whether her SB was much more serious than we'd previously thought. That it could be a chromosomal problem.
We'd gone over this possibility (in detail) months earlier with a genetic counselor, and chromosomal abnormalities usually mean the baby doesn't survive. The only way to test for this is by doing an amniocentesis, which has inherent risks in itself. But it didn't seem likely at that time, so we decided to lean on our wobbly faith and forego the amnio.
Now that the concerned doc was reviving the issue as a reality, we were brought to our knees. It was a real possibility that our girl wouldn't survive, and it was in our best interests to have the amnio, since if it was chromosomal we would likely not need the caesarean - that surgery would be an unnecessary risk to Mom. All the hope & faith we had was now brought into question. We couldn't imagine switching gears to go back to a natural birth in order to "cut our losses."
The amnio was recommended to take place that afternoon, and Nic & I had to take a walk. We could not possibly sit in that hospital exam room any longer. So many terrible memories. So much bad news. So we got some air, prayed, and came back for the amnio. Test results could take up to a week to come back. It's this kind of thing that sends one into depression. We needed patience that does not come from within, because we were hanging from a thread.
We needed more faith, so we turned to the Bible for something to grasp onto. We found Luke 17:6. It helped a little. Luke 8:22-25 we could relate to. Job 2:8-10 was hitting home. And Mark 9:17-29 led us to call on God in prayer, because some things are only possible through prayer.
We're not "holy" people with a divine wisdom for finding passages in the Bible to get us through every situation. We simply needed God, and asked him for answers. It wasn't that He literally spoke to us or shined a light on the right passage. It was more practical: we looked up "faith" in the index of our Application Study Bible (a great book for those who don't know he Bible well). Then we read the relevant passages (in context) and read the footnotes explaining the verses. It was very methodical.
Then we prayed. I won't go into exactly what we prayed, because it really doesn't matter. What does matter is how we prayed. Honestly, and from the heart. The way I believe God wants us to.
So many people on here tell us how strong we are, and what great parents we will be. We thank you for your kind words, but humbly give all the credit to God. In all of this, we have sought Him for guidance, and he has made our relationship what it is today. When we were married we promised to be a light to others, and we never forget about that. It's part of our every prayer. We know this light shines bright, because God so graciously continues to answer our prayers. We simply cannot wait to include our baby Alex in this circle of light.
Monday, July 28, 2008
I've been by Alex's bedside all day staring, longing to hold her, waiting for Dr. Handler to make the next move. I watch her try to move her head and she sounds so congested making it difficult to breathe. I get the nurse (again) and ask her to clear her nose, but she says she's tried and until we get her in a different position they can't do much for her. She lets out a cry and her little eye finds me. I tell her her mommy is here and try to comfort her. I'm not able to pick her up and cannot stroke any part of her body as the nurses tell me her skin is sensitive and it may tickle and/or can make them irritated. She's been in the same position since friday afternoon, on her stomach, butt raised.
As I sit in her little room I can't help but worry. Machines are beeping, nurses are coming in and out, tests are being run. I wonder if she's feeling any pain because she looks so uncomfortable. I try to take a nap but any sound Alex makes wakes me.
"Don't worry" I'm told. As a new mother i don't know how to not worry about our precious baby girl. After so many pokes and not being able to hold back my tears, I have to leave the room, go for a walk. It's hard to watch your child go through tough times and feel like you can't do much to alleviate their pain. My heart breaks to think we will go home tonight w/o our little angel. Even though our house is a few miles from the hospital, it seems so far away.
Each day is long and brings so many emotions, tears and an overwhelming happiness from the beautiful Hope God has blessed us with. Just as most parents have promised - yes, we are already sleep deprived. Even though Alex is being cared for in the NICU, I get up every 2-3 hours to pump (sorry guys) and the pain meds i take make me quite tired as well.
Well, Dr. Handler finally showed up this evening and came with good news - Alex is doing well, she can change positions and mom can hold her. Holding our baby girl made everything right again and it was just precious for mom and dad to talk to her and look into her beautiful eyes. She finally seemed at peace and our hearts were calmed - with no worries.
We're anxious for our visit by Dr.Handler as well as to hear results fm her kidney ultrasound, which will let us know if she will need a catheter to help her pee adequately.
Its awesome to see so much activity on the blog. We'll keep posting as we find things out :)
She will be able to go onto her side and back today, which means a lot of great things: her breathing and overall circulation will improve, her happiness will improve (you try staying in the same position for 72 hrs), and most importantly, we'll be able to hold her and feed her. Pretty happy day.
We had a good long talk, and she said to tell everyone on here she says "hi," (especially Regan) and that she's going to be fine. She can't wait to experience life to the fullest, with all of us. She wants us to be happy for and with her.
Daddy's tears were tears of joy.
Sunday, July 27, 2008
She's being a little angel, and breathing like she should. Mom finally got to hold her, and all is right with the world. The doc said that there is a slight chance that she may not need the shunt surgery. He will continue to monitor her to make sure, so we still don't know. But please be praying specifically for that, as it's a pretty big deal. We're not expecting that to be the case, but we sure are praying for it :)
We want to especially thank Laurie, our nurse, for everything she has done for us and our Alex. She has been amazing, and we are truly grateful for her kindness and special attention. Here's a pic of her making Alex's bed.
We spoke again with Dr. Handler, our Neurosurgeon - who's pretty much running the show when it comes to the care of Alex. He keeps saying great things about her progress. They want to get her off the ventilator now - since they've weened her from the pain medication. So Mama's holding time got postponed so they can monitor her closely.
People are telling us that this experience is making them appreciate little things, like simply being able to hold their baby when she cries. And that really makes us feel better. We know things happen for a reason, and it's comforting to hear the impact that our Alex is having on others. Please keep sharing - it makes it easier for us.
This is a long waiting period. Alex is on her belly, not supposed to really move from her position for 3 days after surgery. I think she's a little irritated by it, because she keeps trying to turn her head over, which isn't good. You can't see it in this pic, but she has a small tube coming out of her head where the excess fluid can drain, until the Neurosurgeon goes back to put the shunt in. She also keeps trying to pull the breathing tube out of her mouth, or at least that's how it seems, because she likes to have her hand by her face, and keeps making a little fist.
But her breathing's been much better than I wrote last night, and the doc just informed me that they're now taking her off the pain medication and testing whether she will breathe on her own. If so, looks like the tube will come back out, but they want to be sure this time.
All in all, she's doing great. The docs & nurses keep telling us that. Last night was probably harder on Mom and Dad than it actually was on Alex. But it's a new day, and we just keep praying for her. We're most looking forward to 2pm, when they will change her bedding. That's when Mom will get to hold her skin-to-skin again, which is something that no mother should ever take for granted. A situation like this teaches you to appreciate even the most basic things, like holding your baby. Something we patiently await.
Maybe in another 24 hours, Daddy will get to hold her. He hopes so.
Saturday, July 26, 2008
I just got back from visiting our Hope, and she was deciding not to breathe, instead letting the ventilator do the breathing for her. It's a tiny step backward, if that. I guess it just seems like a step back, as I want nothing more than for her to fight off the machines. Take life into her own little bitty hands.
"Not to worry. It's the pain medicine. That's why she's on the ventilator. It's probably even better this way." the nurse says. Her name is Kim and she's the sweetest nurse. Or maybe she's just the most compassionate. They all take the time to explain the score to me, but I see the concern in Kim's eyes and know why she does what she does.
She explains to me how to read the monitor, and how to tell when Alex is taking a breath. How to tell when the machine is taking one: Machine. Alex. Alex. Machine. Alex. Alex. Alex. -That's my girl.
Then: Machine. Machine. Machine. No Alex. "Not to worry." But I can't help but worry. It's my daughter. I decide to leave the NICU & come back to our room. I'm tired. It's hard being strong all the time.
I don't cry much...almost never actually. But as I sat down & methodically trolled the comments from every post on this site (again) - I came across this one (click here to view her comment) from my "Aunt Genell" which brought me to tears. Genell is a wonderful woman, and the 1st person I ever knew that was in a wheelchair. My grandmother has been her caregiver and best friend for as long as I can remember. I never told her this, but I've always admired Genell's strength and will to overcome. Guess I've taken it for granted. Supposed it just came with the territory.
But her words helped put it all into perspective. It truly is about the people around you. Not just in terms of the love we, as parents, will give Alex. But the love you, as friends and family, are giving us right now by supporting us. The understanding George so honestly shared in this post. The sympathy Brad expressed emailing his experiences w/SB. The consistent prayers of Josh & Claire, our "Prayer Warrior" friends. I could go on & on.
My beautiful mother has made me everything I am today: a heart overflowing with love. Love that constantly gives itself to others, pausing only to recharge by acknowledging and accepting the love presented by those around me.
And I guess tonight I just needed a little recharging. So thank you all.
Not much new to post, except that we're so excited to see so many people coming to this site to support and encourage us. Thank you.
Alex is doing fine. The docs have decided to keep her on the breathing machine for another day or so, just to be sure she doesn't forget to breathe. But she's getting Mommy's milk now (through a tube), and Nic even got to hold her again a few minutes ago. The hospital encourages as much skin-to-skin contact as possible, which is great. Even with all her monitors & tubes attached, they go out of their way to make it happen, and it so rewarding to Mommy (and we all know if Mommy's happy, so is Daddy).
Alex is back on the ventilator for now - which is natural, considering the effects from the pain medication. It makes it really tough for Mom 'n Dad, but is actually better for Baby. She's still stable, though - so we're grateful.
It's so hard seeing her poked & prodded for this and that. She has little needle marks all over her arms, legs, hands & feet from where they initially - unsuccessfully - tried getting an IV into her (Thursday). And of course they need blood for many tests, so she looks like a pincushion, but we know she's getting good care. The docs & nurses are constantly monitoring & caring for her, so we feel like she's in good hands.
Here's a close-up of her on the breathing machine. She's lying on her belly, so her cute little face is squished, and she's still pretty puffy from the surgery. But still amazingly beautiful. Our daughter.
Even though it's 1am, and daddy's had very little sleep (yeah yeah, I know - all you parents are saying "get used to it") -- I still want to get some more pics (pre-surgery) and info uploaded here for those of you that are checking regularly.
Alex's post-op condition is really good so far. She's already been taken off the ventilator, and although it was a little rough for her at first, she's getting her breathing back to normal. I must say the little pep talk I gave her worked like a charm. I think she's going to be a very well-behaved girl ;)
We certainly know that she's a fighter, and couldn't be prouder parents. Thanks again for all your love and support. Check back often for updates, and let us know by commenting. It doesn't have to be profound or clever, just an affirmation that you're still with us. We love to read it.
Friday, July 25, 2008
We will wait to see how she recovers from this procedure before setting an exact date for the shunt to be put in, but he's thinking it will likely be in less than a week.
Thanks to all of you for your prayers. We're certainly not out of the woods yet, but at least we've made it through to this point, and for that we're grateful.
We'll post pics soon, as we're about to go see our little miracle right now.
Until next post...
**EDIT: I don't think we're going to put any pics up for now, as the wound is open, and not exactly "cute." **
So we're in high spirits, and it's so great and encouraging to read your comments (thank you George). Keep the posts coming, and we'll keep you updated. Meanwhile, here are a few more pics & a video from this morning. (You may notice the little skin-tag on her cheek - not to worry, it will come off soon :)
Thursday, July 24, 2008
Wednesday, July 23, 2008
And just look how great Nicole still looks.
Tuesday, July 22, 2008
Well, 1st post...and it's 2 days until our baby Alex's day of birth. Guess there's not a whole lot to write about just yet, although that should change very soon. Nic & I plan on taking tomorrow off & celebrating our "last day of non-parenthood." Then we're off to the hospital Thursday morning for the delivery of our baby girl.
We're so excited to be able to see her face & look in her eyes. Nicole can't stop obsessing about how she hopes she has my eyes. I guess we'll find out soon enough. I plan to post photos here, so here's the 1st one from a 3D ultrasound.
Monday, July 21, 2008
Essentially it's a birth defect that happened very early in her development, and it will likely result in several challenges to her living a normal life, most specifically that she may not walk without braces/walker/crutches, if at all. In addition to this, she will have to undergo several surgical procedures (performed by a Neurosurgeon). One of these surgeries was Fri (7/25) at 12:30pm. This was to close the opening in her lower back where her spine & nerves were exposed. It's at the L4 vertebrate, which is fairly good news, as the higher the opening, the more severe the situation.
The other surgery will be to put a shunt (tube) that will allow excess cerebrospinal fluid to drain from her brain into the stomach where it can be absorbed. The shunt will be put in (probably) a few days later, depending on how she recovers from the 1st operation.
These are both very serious procedures, and we need all the prayer you can offer. God has been with us on this journey, and is giving us the strength and peace we need to get through it. As we continue to pray for our precious gift, we hope that you will join us.
It's hard for us to call/email/text everyone regularly, so this blog is the best way for us to communicate what's going on. And we love reading your comments, so please keep it up. We'll definitely continue to post updates as soon as we have them.
Love & thanks to all of you.
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The 1st article below describes our situation, and right below that you'll see our most recent post. We hope you keep coming back to see the latest news and pics.