Sunday, March 25, 2012
3 Months Post-Op!
Last Monday, March 19, marked 3 months since H's surgery. That is really hard for me to believe! She continues to do really well. The doctor is very pleased with her progress too! She's a busy baby, trying to crawl & gaining more and more control of her body as she moves from laying on her belly to sitting up. Even though she technically can't crawl yet, she is definitely making her way around the room to L's toys! Here are some photos I took of her on her 3-month "cranioversary," what we moms of kids with craniosynostosis call our post-op anniversaries!
Wednesday, February 01, 2012
Siblings!
Do our two kiddos look related or is it just me?! My babies... (both at close to 6 months old)
Sunday, January 22, 2012
Looking good!
Here's a photo of H 5 weeks post-op. She's a beauty!! Hard to believe that tomorrow marks 6 weeks since surgery. Thanks for all of your continued prayers & support.
Thursday, January 05, 2012
Our 2-Week Follow Up
We just wanted to thank you all for praying for H yesterday as we drove to Cincinnati for her 2-week follow-up appointment with her surgeon, Dr. Crone. Dr. Crone was very pleased with her progress. Her incisions are healed & her head shape is developing nicely. They took out the one permanent stitch she had in her head. (The rest are dissolvable.)
He wants to see her again in 6 weeks and cleared us to go to Sanibel for these next couple of weeks. She just has to wear a sun hat outside! So we will head to Florida next week, probably Thursday.
Thank you all for your continued prayers over her & over us as a family. We are so grateful to have this behind us. We continue to pray for H’s full recovery & that she will not need any further surgery in the future.
He wants to see her again in 6 weeks and cleared us to go to Sanibel for these next couple of weeks. She just has to wear a sun hat outside! So we will head to Florida next week, probably Thursday.
Thank you all for your continued prayers over her & over us as a family. We are so grateful to have this behind us. We continue to pray for H’s full recovery & that she will not need any further surgery in the future.
Tuesday, January 03, 2012
Back to Cincy
Hi all,
We'd appreciate your thoughts & prayers tomorrow as we head back to Cincinnati for H's 2-week follow up appointment with the surgeon. We are not anticipating any problems...H seems to be recovering beautifully. But we hope that the doctor thinks so too!! Will let you know how it goes.
Thanks!
K+M+L+H
We'd appreciate your thoughts & prayers tomorrow as we head back to Cincinnati for H's 2-week follow up appointment with the surgeon. We are not anticipating any problems...H seems to be recovering beautifully. But we hope that the doctor thinks so too!! Will let you know how it goes.
Thanks!
K+M+L+H
Saturday, December 31, 2011
Happy New Year!
Here I sit on the eve of a new year thinking about all that has transpired in 2011. There's no place I'd rather be...in our home, with my fabulous husband across the table from me, and the two most precious children sound asleep in their rooms. My heart is full. And I am grateful.
This year has brought us another baby...sweet H. Thank God for her & her calm disposition & huge smiles & robust laughs. Thank God for her health & safety through major head surgery. What an amazing testimony of God's goodness & faithfulness she is to us. She is our social butterfly, loving being in the middle of the action & people. In particular, she seems to love her big brother. Increasingly we will catch her just watching him with huge, wide eyes then breaking out into a huge guffaw. At four and a half months old, she weighs 17 pounds & is 25 inches long. In this way & in many ways, she is so different than L.
L is an amazing little boy. He brings us such joy every single day. We celebrated his second birthday this summer. He is talking up a storm, constantly amazing us & humoring us with new words & phrases & antics. Most recently, he has started tapping us on the shoulder if he wants our attention. Just tonight, from across the room, he started motioning the "tap" with his hand and accompanying it with a smack of his mouth, as if to say, "Over here...I need you to look at me." It's hysterical. He loves music--we often catch him sitting on the floor or on his bed with his little guitar singing the songs he knows. He still loves cars & trucks of any sort. He loves reading books, Richard Scarry to be specific. And he loves his play kitchen! He is indeed a renaissance man.
K & I celebrated our 10-year wedding anniversary a week after H was born. That same evening, I ended up in the ER with some complications from H's birth. This gives us a good excuse to celebrate again in 2012! In general, we are looking forward to a hospital-free 2012. :) Early this year found us on Sanibel for several weeks, escaping much of the icy winter. We also took our first long trip without kids to Panama. This fall, we enjoyed a long weekend with dear friends in the woods of Arkansas. And we have enjoyed an assortment of musical delights throughout the year, including Iron & Wine, Alison Krauss, and Ben Folds.
2011 has been filled with blessing, even in the midst of unexpected drama. We are grateful for each other. We are grateful for our two incredible children. We are grateful for our dear family & friends. And of course we are grateful for Syd & Max the Wonderdogs! (For anyone who is counting, Syd will be 14 years old in February!!) Thanks to all of you for helping to make this past year so very special. May 2012 be filled with blessing & new adventures for you all!
Happy New Year!
This year has brought us another baby...sweet H. Thank God for her & her calm disposition & huge smiles & robust laughs. Thank God for her health & safety through major head surgery. What an amazing testimony of God's goodness & faithfulness she is to us. She is our social butterfly, loving being in the middle of the action & people. In particular, she seems to love her big brother. Increasingly we will catch her just watching him with huge, wide eyes then breaking out into a huge guffaw. At four and a half months old, she weighs 17 pounds & is 25 inches long. In this way & in many ways, she is so different than L.
L is an amazing little boy. He brings us such joy every single day. We celebrated his second birthday this summer. He is talking up a storm, constantly amazing us & humoring us with new words & phrases & antics. Most recently, he has started tapping us on the shoulder if he wants our attention. Just tonight, from across the room, he started motioning the "tap" with his hand and accompanying it with a smack of his mouth, as if to say, "Over here...I need you to look at me." It's hysterical. He loves music--we often catch him sitting on the floor or on his bed with his little guitar singing the songs he knows. He still loves cars & trucks of any sort. He loves reading books, Richard Scarry to be specific. And he loves his play kitchen! He is indeed a renaissance man.
K & I celebrated our 10-year wedding anniversary a week after H was born. That same evening, I ended up in the ER with some complications from H's birth. This gives us a good excuse to celebrate again in 2012! In general, we are looking forward to a hospital-free 2012. :) Early this year found us on Sanibel for several weeks, escaping much of the icy winter. We also took our first long trip without kids to Panama. This fall, we enjoyed a long weekend with dear friends in the woods of Arkansas. And we have enjoyed an assortment of musical delights throughout the year, including Iron & Wine, Alison Krauss, and Ben Folds.
2011 has been filled with blessing, even in the midst of unexpected drama. We are grateful for each other. We are grateful for our two incredible children. We are grateful for our dear family & friends. And of course we are grateful for Syd & Max the Wonderdogs! (For anyone who is counting, Syd will be 14 years old in February!!) Thanks to all of you for helping to make this past year so very special. May 2012 be filled with blessing & new adventures for you all!
Happy New Year!
Thursday, December 29, 2011
Continuing to heal
It's hard to believe that H's surgery is already a week & a half behind us. She continues to heal & do well. I'm amazed at how great her incisions look. And her hair is growing back so fast! Babies are incredible in how they can recover from physical trauma. You would never know she had major head surgery not even two weeks ago. She is her happy old self! With that said, in many ways I feel we have a newborn in the house again. By this I mostly mean we can't have lots of people hold her and she's not sleeping great (having fallen out of her rhythm on only one night waking). But every day is getting better.
We had our first family outing yesterday...out to breakfast. H wore a hat the entire time per doctor's orders. She seems to be in less pain all the time. I've been spreading out her Tylenol (no narcotics) to about every 8 hours. She doesn't really like her head cradle that she's supposed to sleep in, surprise surprise. She ends up sleeping in it about 4-6 hours every day. But she actually is on her back with her head straight up much of the day. So we've been using it while she's awake!
We have scheduled H's 2-week follow up appointment in Cincinnati for Jan 4. At that time, the doctor will access her progress, remove the remaining stitches, and hopefully answer our superfluous questions!
We have felt so blessed and carried by all of you. Thank you for your continued prayers, notes of encouragement & visits. We would ask for continued prayers that H's head heals & that her head grows into the nice round shape that is expected in time. We continue to pray for no developmental issues. (Some kids born with this birth defect experience developmental delays.)
Finally, thanks to all who have visited our blog expecting to see our annual Christmas letter but instead found themselves engrossed in this recent drama! I promise to post a Christmas letter here soon!
All the best,
K+M+L+H
We had our first family outing yesterday...out to breakfast. H wore a hat the entire time per doctor's orders. She seems to be in less pain all the time. I've been spreading out her Tylenol (no narcotics) to about every 8 hours. She doesn't really like her head cradle that she's supposed to sleep in, surprise surprise. She ends up sleeping in it about 4-6 hours every day. But she actually is on her back with her head straight up much of the day. So we've been using it while she's awake!
We have scheduled H's 2-week follow up appointment in Cincinnati for Jan 4. At that time, the doctor will access her progress, remove the remaining stitches, and hopefully answer our superfluous questions!
We have felt so blessed and carried by all of you. Thank you for your continued prayers, notes of encouragement & visits. We would ask for continued prayers that H's head heals & that her head grows into the nice round shape that is expected in time. We continue to pray for no developmental issues. (Some kids born with this birth defect experience developmental delays.)
Finally, thanks to all who have visited our blog expecting to see our annual Christmas letter but instead found themselves engrossed in this recent drama! I promise to post a Christmas letter here soon!
All the best,
K+M+L+H
Thursday, December 22, 2011
Hallelujah, We're Going Home!
Dr. Crone came in around noon & cleared H to go home! Now, we're just waiting for discharge papers & instructions! I'll continue to post updates here periodically about her recovery. We thank God for each of you. I think it's safe to say we'd be up for visitors starting next week! Let us know if you would like to stop by.
It is so good to be on the other side of this.
Much love to each of you,
M+K
It is so good to be on the other side of this.
Much love to each of you,
M+K
Day 3
This morning marks day 3 of this adventure. Hard to believe that it's only been about 72 hours since H's surgery & they are considering letting us go home today. I know I've said it before, but that's crazy! H had a good night. The nurse came in this morning telling us she needed to draw more blood. What?? So we're pushing back. We asked to have the vein team do it. No, wait. Let us talk to the neurosurgery team. They came in & said we should just talk to Dr. Crone. He has to make the final call. Apparently H's platelet levels are fluctuating more than they'd like. After yesterday's blood draw, they found the level to be 94 when it really should be 100 or more. I'm not sure what all this means but we are still waiting for the doctor to come in & talk to us & check H. Will keep you all posted. We want H to be healthy AND we really want to go home! She's doing great in every other way, thank the Lord.
As I've expressed amazement at how well she's recovering, I've heard many nurses respond with "the younger the better" in terms of her ability to bounce back. She is evidence of this to us. In most ways, she seems like her old self, smiling, laughing, interacting with us. It is truly remarkable to witness.
I've also been incredibly touched by the very real power of prayer we've experienced. I was reflecting with K on the week thus far. After we posted here on the blog how she was through surgery, I could literally feel the blanket of prayer lift slightly, which let in worry & stress among other things. That's why I immediately got back on & said "Keep praying!! She's not out of the woods!" And as you all continued to pray, she continued to improve & peace returned.
So I say again, keep praying! We're not home yet. And even when we are, she still has a lot of healing to do. She needs to stay healthy. We don't want any infections or complications with the incisions or otherwise.
Will update again after we speak with the doctor. THANK YOU for being on this journey with us. You are all loving us in many wonderful, varied ways.
M+K
PS. I forgot to give an update on the area that was bleeding where the drain was in her head. They ended up simply putting in another stitch & that seems to have taken care of it. Whew.
As I've expressed amazement at how well she's recovering, I've heard many nurses respond with "the younger the better" in terms of her ability to bounce back. She is evidence of this to us. In most ways, she seems like her old self, smiling, laughing, interacting with us. It is truly remarkable to witness.
I've also been incredibly touched by the very real power of prayer we've experienced. I was reflecting with K on the week thus far. After we posted here on the blog how she was through surgery, I could literally feel the blanket of prayer lift slightly, which let in worry & stress among other things. That's why I immediately got back on & said "Keep praying!! She's not out of the woods!" And as you all continued to pray, she continued to improve & peace returned.
So I say again, keep praying! We're not home yet. And even when we are, she still has a lot of healing to do. She needs to stay healthy. We don't want any infections or complications with the incisions or otherwise.
Will update again after we speak with the doctor. THANK YOU for being on this journey with us. You are all loving us in many wonderful, varied ways.
M+K
PS. I forgot to give an update on the area that was bleeding where the drain was in her head. They ended up simply putting in another stitch & that seems to have taken care of it. Whew.
Wednesday, December 21, 2011
Hard Morning
I feel like our update today bounces back & forth with good news & bad news, "bad" certainly being relative.
Some good news is that H slept great last night, getting at least 2-3 hour blocks of uninterrupted sleep. (Which means we slept too!) At 5am, the nurse came in to give her Tylenol and Oxycodone (a narcotic we gave her twice last night as she seemed to be in more pain than usual). She also said she needed to make her last blood draw so was taking out her IV & would collect her blood in a vile after the needle came out. So more good news: H's IV came out early this morning.
The bad news is that the blood she drew had coagulated & couldn't be used. So now we have no IV through which to draw blood. H is so chubby that everyone who tries to get blood has an incredibly hard time finding a vein to access. So when they came in later this morning to say they had to draw more blood, I could feel MY blood rising. After two heal pricks & rather painful squeezing, they called in the vein team (apparently these folks are the expert blood collectors). The vein team poked a needle into her right arm. That didn't work. By now, I am in tears. I actually had to go into the bathroom where I lost it. I was so incredibly frustrated they had taken out the IV, so frustrated they needed more blood, and simply hurting for H that she had to go through this again. Finally, they got the blood they needed through another heal prick.
More good news is that while they were drawing blood, the neurosurgery people came in to remove the drain out of her head! They suggested doing it on the tails of the blood draw to just get it over with while she was still upset. H was so exhausted from crying from the blood draw that she actually fell asleep while they took out the drain! But she woke up when they put in the stitch.
H woke up about an hour ago from being sacked out from this morning's drama. She nursed well. I picked her up from changing her diaper & there's blood on the sheet from her head. Sigh. So now she seems to be bleeding a bit from the stitch or something. We're not sure right now because she fell asleep again before her nurse could come check. (Another nurse came & put some gauze on it but she wasn't in a position to determine why it was bleeding.)
Now she's resting after having received more Tylenol (no more narcotics for now). So more good news is that her swelling is almost non-existent & she is TOTALLY free from anything inside her body...no more IVs or drains or anything. The only thing she is attached to are the monitors (little suction cups three places on her chest).
We are hoping for a good head scrubbing later today which will aid to the healing of her incisions & where the drain was.
Things to pray: Pray she doesn't need more blood drawn. Pray she remains infection free. Pray she continues to nurse well. Pray for no vomiting. (She threw up twice yesterday, which isn't good.) Pray for no more hiccups in her recovery. Pray she is not in a lot of pain. Pray she rests well.
They are telling us we should be able to go home tomorrow if all continues as it has. That's good news.
Finally, THANK YOU to everyone who sent us e-cards! I don't know how you all knew to do that but we were elated when the nurse brought in this thick packet of paper full of notes from so many of you! What a sweet treat in the midst of a frustrating morning.
More later,
M+K
Some good news is that H slept great last night, getting at least 2-3 hour blocks of uninterrupted sleep. (Which means we slept too!) At 5am, the nurse came in to give her Tylenol and Oxycodone (a narcotic we gave her twice last night as she seemed to be in more pain than usual). She also said she needed to make her last blood draw so was taking out her IV & would collect her blood in a vile after the needle came out. So more good news: H's IV came out early this morning.
The bad news is that the blood she drew had coagulated & couldn't be used. So now we have no IV through which to draw blood. H is so chubby that everyone who tries to get blood has an incredibly hard time finding a vein to access. So when they came in later this morning to say they had to draw more blood, I could feel MY blood rising. After two heal pricks & rather painful squeezing, they called in the vein team (apparently these folks are the expert blood collectors). The vein team poked a needle into her right arm. That didn't work. By now, I am in tears. I actually had to go into the bathroom where I lost it. I was so incredibly frustrated they had taken out the IV, so frustrated they needed more blood, and simply hurting for H that she had to go through this again. Finally, they got the blood they needed through another heal prick.
More good news is that while they were drawing blood, the neurosurgery people came in to remove the drain out of her head! They suggested doing it on the tails of the blood draw to just get it over with while she was still upset. H was so exhausted from crying from the blood draw that she actually fell asleep while they took out the drain! But she woke up when they put in the stitch.
H woke up about an hour ago from being sacked out from this morning's drama. She nursed well. I picked her up from changing her diaper & there's blood on the sheet from her head. Sigh. So now she seems to be bleeding a bit from the stitch or something. We're not sure right now because she fell asleep again before her nurse could come check. (Another nurse came & put some gauze on it but she wasn't in a position to determine why it was bleeding.)
Now she's resting after having received more Tylenol (no more narcotics for now). So more good news is that her swelling is almost non-existent & she is TOTALLY free from anything inside her body...no more IVs or drains or anything. The only thing she is attached to are the monitors (little suction cups three places on her chest).
We are hoping for a good head scrubbing later today which will aid to the healing of her incisions & where the drain was.
Things to pray: Pray she doesn't need more blood drawn. Pray she remains infection free. Pray she continues to nurse well. Pray for no vomiting. (She threw up twice yesterday, which isn't good.) Pray for no more hiccups in her recovery. Pray she is not in a lot of pain. Pray she rests well.
They are telling us we should be able to go home tomorrow if all continues as it has. That's good news.
Finally, THANK YOU to everyone who sent us e-cards! I don't know how you all knew to do that but we were elated when the nurse brought in this thick packet of paper full of notes from so many of you! What a sweet treat in the midst of a frustrating morning.
More later,
M+K
Tuesday, December 20, 2011
Out of PICU
H is out of PICU! The nurses moved her to a regular recovery room at around 2pm today. It's nice to have her unhooked from most of her wires. The only things she's still attached to are her monitor wires (to watch her heart rate, blood pressure, and oxygen levels) and the drain in her head. Boy, are we ready to have that drain out! I'm constantly worried I'm going to pull it out! And it looks really cumbersome & painful for H.
Amazingly, H is only on Tylenol for her pain. This is great in the sense that she is really interacting with us & seeming in many ways her old self. However, I think her head is bothering her more today as the other narcotics wear off. Understandably!!
So things to keep praying for: that the drain can come out tomorrow, that her pain is tolerable & not too bothersome for her, and that we can GO HOME THURSDAY as they are anticipating!
We are so grateful she is doing so well. It's truly amazing to me how babies this young bounce back from something like major surgery on the head. We also are grateful for all of you...for your thoughts & prayers and for your many words of encouragement through emails, texts, phone calls. Thank you for all you do and have done for us.
M+K
Amazingly, H is only on Tylenol for her pain. This is great in the sense that she is really interacting with us & seeming in many ways her old self. However, I think her head is bothering her more today as the other narcotics wear off. Understandably!!
So things to keep praying for: that the drain can come out tomorrow, that her pain is tolerable & not too bothersome for her, and that we can GO HOME THURSDAY as they are anticipating!
We are so grateful she is doing so well. It's truly amazing to me how babies this young bounce back from something like major surgery on the head. We also are grateful for all of you...for your thoughts & prayers and for your many words of encouragement through emails, texts, phone calls. Thank you for all you do and have done for us.
M+K
A New Day
We are so grateful to have surgery almost 24 hours behind us. H is doing so great. We had an uneventful night in PICU last night, which is good! They did a limited CT scan of her head around 8pm last night to check on the pool of blood on her brain & it is not getting worse, thankfully. (Apparently this is a common condition after this type of surgery.) As a result, they let H nurse! So we were able to nurse and "cuddle" all night long. (Cuddling is a bit hard with her hooked up to so many different monitors & IVs but we did our best!)
She is recovering beautifully. All of her labs continue to come back great. She is off oxygen & they took out her catheter this morning. Her bodily functions are all returning, which is a praise. She is still a bit swollen but it is going down. We think her head looks rounder all ready but it's hard to tell with the swelling. I'll post some photos after we are back home. This morning, she was even blowing spit bubbles & cooing & talking a bit! That was like music to my ears. I think we even got a smile!
The doctor continues to think she's doing great. It was his confidence & your prayers that got us through the day yesterday. So thank you to all for your continued prayers & support. We are anticipating that she will be moved out of PICU today & into a regular recovery room but we're not sure of that yet. Will keep you posted!
M+K
She is recovering beautifully. All of her labs continue to come back great. She is off oxygen & they took out her catheter this morning. Her bodily functions are all returning, which is a praise. She is still a bit swollen but it is going down. We think her head looks rounder all ready but it's hard to tell with the swelling. I'll post some photos after we are back home. This morning, she was even blowing spit bubbles & cooing & talking a bit! That was like music to my ears. I think we even got a smile!
The doctor continues to think she's doing great. It was his confidence & your prayers that got us through the day yesterday. So thank you to all for your continued prayers & support. We are anticipating that she will be moved out of PICU today & into a regular recovery room but we're not sure of that yet. Will keep you posted!
M+K
Monday, December 19, 2011
News from PICU
We are currently in our new 24-hour home in PICU (pediatric intensive care unit). What a blessing to see H, to kiss her forehead & hold her hand. She is doing well though it's hard to see her hurt. She is swollen but not too badly. She has lost a lot of blood & is currently getting her second blood transfusion. She will get a plasma transfusion later on to get her blood coagulate better. But her doctor came in to check on her & said she is doing fine & will be fine.
We are so grateful to be through surgery & on to recovery. But please continue to pray for H, that her body gets on track and that she can move to a regular room tomorrow. She still needs prayer.
Thanks all.
M+K
We are so grateful to be through surgery & on to recovery. But please continue to pray for H, that her body gets on track and that she can move to a regular room tomorrow. She still needs prayer.
Thanks all.
M+K
Update from the waiting room #2
The surgeon, Dr. Crone, just came in to speak with us. H's surgery is complete (11:15am)! She is still in the operating room waking up before heading up to NICU where we'll get to see her. He thought it would be another 15 minutes or so. So God-willing, our next update will be after we've seen & kissed our sweet baby girl. THANK YOU for all of your thoughts, prayers, and emails. Keep praying! She is still waking up...praying that there are no problems there. And she still has a lot of recovering to do. But we are grateful the surgery is over & we are almost on the other side of this.
Much love,
M+K
Much love,
M+K
Updates from the Waiting Room #1
H is in the OR. I held it together until I had to hand her to the nurse...and then I lost it. As she went to the nurse, she gave the biggest smile, our sweet girl.
The nurse just came in and they have started surgery. 9:20am
They slated 452 minutes for surgery, that's about 7 hours and 55 minutes...ugh.
They will take H straight to ICU, that should be around 4pm if all goes well.
Thanks for taking the time to pray for all of us today.
You can pray for Dr. Crone (pediatric neurosurgeon), Dr. Previte (anesthesiologist), our three nurses Jen, Darcy and Pam.
Pray for H's safety and complete healing and restoration as she recovers.
We still have total peace being here. Other than me forgetting my glasses at home, we are comfortable and camped out for the day.
That's it for now, more later.
K + M
The nurse just came in and they have started surgery. 9:20am
They slated 452 minutes for surgery, that's about 7 hours and 55 minutes...ugh.
They will take H straight to ICU, that should be around 4pm if all goes well.
Thanks for taking the time to pray for all of us today.
You can pray for Dr. Crone (pediatric neurosurgeon), Dr. Previte (anesthesiologist), our three nurses Jen, Darcy and Pam.
Pray for H's safety and complete healing and restoration as she recovers.
We still have total peace being here. Other than me forgetting my glasses at home, we are comfortable and camped out for the day.
That's it for now, more later.
K + M
Friday, December 16, 2011
More H Updates
We've had a change of plans. We were able to get a last minute appointment with the chief of pediatric neurosurgery at Cincinnati Children's Hospital this morning and have decided to do H's surgery there with him. Surgery is now scheduled for this MONDAY MORNING at 7:45am in Cincinnati. We appreciate any and all thoughts & prayers for us as we go into next week. God willing, we will be home again on Wednesday or Thursday of next week. We will do our best to keep this blog updated through H's surgery & recovery!
And the story continues...
M+K+L+H
And the story continues...
M+K+L+H
Tuesday, December 13, 2011
Our Theme Song
A Mr. Rogers song keeps coming to me as we walk this journey with Halle. It's called "There Are Many Ways To Say I Love You." There's the cooking way, the eating way, the cleaning-up way, the just-being-there way...and in our case I'd add, the giving-blood way, the sending-notes way, the sending-flowers way, the come-over-with-coffee-and-treats way...and the list goes on.
We feel so loved & blessed right now. Of all the feelings I feel right now, I do not feel alone. And I am so grateful.
You can listen to the song here: pbskids.org/rogers/songLyricsManyWays.html
God bless Mr. Rogers. And God bless you all for the ways you love us.
We feel so loved & blessed right now. Of all the feelings I feel right now, I do not feel alone. And I am so grateful.
You can listen to the song here: pbskids.org/rogers/songLyricsManyWays.html
God bless Mr. Rogers. And God bless you all for the ways you love us.
Sunday, December 11, 2011
Surgery Scheduled
Thanks for all of your thoughts & prayers for us last Wed as we met with the pediatric neurosurgeon. She is great & we really feel good about her. She has recommended what is called a Sagittal Strip Craniectomy and that we have the surgery within the next 2-3 weeks. We have scheduled surgery for December 20 here in Indianapolis at Riley Children’s Hospital (unless the doctors giving us their second/third opinions give us a really good reason why we should wait). The hospital stay is usually 3-5 days so God-willing we can spend at least some of Christmas Day at home.
We also received the good news that H’s brain looks totally fine & unaffected thus far. Our friend who is a neural radiologist continues to offer his expertise to us, reviewing H’s CT scans, connecting us to a pediatric neurosurgeon through his hospital network, being available for general questions. Amazing.
I also spoke with the chief of pediatric neurosurgery at Mayo Clinic. He was incredibly kind and willing to talk. He went as far as scheduling us for a consultation with his plastic surgeon AT Mayo early next week & had them schedule surgery for next Wed at Mayo. However, we have decided not to go to Mayo. At most, I still hope he will consider looking at H’s CT scan & photos to offer a preliminary opinion. We just really think we need to stick closer to home, for follow up appointments & general support.
We do ask for continued prayer for wisdom for our next steps. Some doctors think it’s best to wait until the baby is older to perform some of the variations of this surgery. Our doctor feels earlier is better. It seems to depend on who you ask. But, as one doctor friend stated, we really only have one shot to do this right and to avoid future surgeries & complications. So we are praying that we are making the right decisions.
More soon.
We also received the good news that H’s brain looks totally fine & unaffected thus far. Our friend who is a neural radiologist continues to offer his expertise to us, reviewing H’s CT scans, connecting us to a pediatric neurosurgeon through his hospital network, being available for general questions. Amazing.
I also spoke with the chief of pediatric neurosurgery at Mayo Clinic. He was incredibly kind and willing to talk. He went as far as scheduling us for a consultation with his plastic surgeon AT Mayo early next week & had them schedule surgery for next Wed at Mayo. However, we have decided not to go to Mayo. At most, I still hope he will consider looking at H’s CT scan & photos to offer a preliminary opinion. We just really think we need to stick closer to home, for follow up appointments & general support.
We do ask for continued prayer for wisdom for our next steps. Some doctors think it’s best to wait until the baby is older to perform some of the variations of this surgery. Our doctor feels earlier is better. It seems to depend on who you ask. But, as one doctor friend stated, we really only have one shot to do this right and to avoid future surgeries & complications. So we are praying that we are making the right decisions.
More soon.
Monday, December 05, 2011
H is (almost) 4 Months!
I thought I'd go ahead & post H's 4-month update! She turns four months in just 4 short days. What a doll she is! At her 3-month check up, she weighed in at 15 lbs 15 oz and 25 in long! She LOVES putting everything in her mouth these days. She pulls her dresses into her mouth, puts toys, fingers, pretty much anything goes in there! The other night, I went into H's room while she was sleeping & her bunny rabbit's foot was soaked. She also loves taking baths! I lay her on her back in the tub & she starts kicking & swinging her arms & her eyes get big & bright! She's talking & cooing lots, experimenting with her voice! And boy, does she have some lungs! When she screams, she SCREAMS! She has the sweetest little half grin, the brightest smile that fills her whole body, the funniest guffaw. She has K's deep, dark eyes that draw you in--then her charming smile is totally disarming! She lays on her activity blanket & bats at all the toys, seemingly fascinated that she can make them make sounds. And she is strong! Those legs of hers can kick & stand. We are thoroughly enjoying her. And L is increasingly enjoying her as well! She laughs at him when he's taking his baths! And they make each other laugh on a regular basis. I love it. My two babies.
Many of you know that the week of Thanksgiving, H was diagnosed with a head condition called Sagittal Synostosis. This simply means that the sagittal suture of her skull has fused prematurely. Since she was born, she has had a long, narrow head. I asked the pediatrician about it for the first time at her 8-week appt. We started watching for her head to fill out to a more round shape & it wasn't happening. So he ordered an X-ray on the Tuesday before Thanksgiving. Now, for the last two weeks, we have found ourselves on a crash course of trying to understand our options & what is in store for our baby girl.
God has been good in surrounding us with the most amazing people who understand this more than we do as well as sending loads of encouragement to us through our family & friends. We are praying for a miracle, that she would not need surgery, that her head would heal. We will meet with a pediatric neurosurgeon at Riley Children's Hospital here in Indianapolis this coming Wednesday. We hope to learn more about our options at that point.
I will post updates to this blog so please come back & visit. In the meantime, we covet your prayers over H and our entire family as are on this journey together.
K, M, L, H
Many of you know that the week of Thanksgiving, H was diagnosed with a head condition called Sagittal Synostosis. This simply means that the sagittal suture of her skull has fused prematurely. Since she was born, she has had a long, narrow head. I asked the pediatrician about it for the first time at her 8-week appt. We started watching for her head to fill out to a more round shape & it wasn't happening. So he ordered an X-ray on the Tuesday before Thanksgiving. Now, for the last two weeks, we have found ourselves on a crash course of trying to understand our options & what is in store for our baby girl.
God has been good in surrounding us with the most amazing people who understand this more than we do as well as sending loads of encouragement to us through our family & friends. We are praying for a miracle, that she would not need surgery, that her head would heal. We will meet with a pediatric neurosurgeon at Riley Children's Hospital here in Indianapolis this coming Wednesday. We hope to learn more about our options at that point.
I will post updates to this blog so please come back & visit. In the meantime, we covet your prayers over H and our entire family as are on this journey together.
K, M, L, H
Saturday, October 08, 2011
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