As you may have noticed, there are some updates to our humble blog. I've added a new header, a poll, chronological pictures with links to my previous blogs, and a subscription option. I hope these improvements will make learning about and keeping up with Clark a little simpler. If you haven't become a follower yet, please consider doing so. I try to update the blog frequently and there is always something exciting going on around here. I also added a Paypal Donation button. There is definitely no pressure here, I've just had a few requests for one. As you can imagine, this year has certainly thrown our budget for a loop.
The top two pictures on the right side have links that take you to pprom.wordpress.com and http://www.caringbridge.org/visit/brandykelley, respectively. The first one is about my pregnancy with comprehensive information on pPROM and the second one is Clark's detailed NICU blog. If you are a pPROM parent or a current/past/present NICU parent, I am always interested in hearing your story. Email me any time, leave your pPROM story here or fill our the pPROM survey here. My aim for my pPROM blog is support and information for mothers & families experiencing premature preterm rupture of membranes. I get loads of traffic there and I believe that the information it contains has helped save babies. If you know someone experiencing pPROM, please refer them to my blog.
Thank you for being a loyal reader of Superboy Clark. It means so much to us that so many people are interested in his life and pray for him constantly.
Monday, October 25, 2010
Saturday, October 23, 2010
Big D
I will start by saying that surgery was successful and Clark did better than I could have ever imagined. Please thank God for His never ending love & help He has given us.
We arrived in Dallas on Tuesday. It was a very long day with appointments from 10-5ish. First we were admitted, then we went to the pharmacy to register with them, then we saw occupational therapy for his special spica cast car seat, spoke to the dietitian, next we met the resident & spoke with our doctor, met the nurse and last but not least (trust me, they saved the best for last)...the anesthesiologist. Whew. You better believe we were exhausted.
After we left Scottish Rite, we checked in at the Ronald McDonald House of Dallas (which is absolutely fabulous, by the way.) And yes, we really did rock in those rockers, which was really nice after the long day we had.
I really couldn't believe how nice this RMH was. Apparently, it's brand new.
There are a lot of rules when you stay at an RMH, but they provide 3 meals a day and free laundry facilities, among other things.
We had been given permission to remove the traction leg wrappings & I promptly got to work at unveiling Clark's legs after almost 2 months. It was amazing how cute his legs were!! And he was so happy and doing well at sitting up with a little help.
The next morning, we had to be at the hospital by 5am. When we got there, I had to wipe Clark down with surgical antiseptic to get him ready to go to the holding room.
His million-dollar smile.
They had a teeny gown for him to wear.
The next morning Clark had a CT scan to check on the placement of his hip and everything looked good. We waited to talk to his doctor, and get his carseat in working order, we were discharged around 2pm.
Clark is doing well and more time is going by between time that he needs his pain medication. Diapering is a little tricky, but we're figuring it out. All-in-all, I really couldn't be more pleased with how everything went. I was worried, for sure, but I had faith that things would work out. Scottish Rite is amazing, and I am so glad we opted for that 2nd opinion and chose to have Clark treated there.
We arrived in Dallas on Tuesday. It was a very long day with appointments from 10-5ish. First we were admitted, then we went to the pharmacy to register with them, then we saw occupational therapy for his special spica cast car seat, spoke to the dietitian, next we met the resident & spoke with our doctor, met the nurse and last but not least (trust me, they saved the best for last)...the anesthesiologist. Whew. You better believe we were exhausted.
After we left Scottish Rite, we checked in at the Ronald McDonald House of Dallas (which is absolutely fabulous, by the way.) And yes, we really did rock in those rockers, which was really nice after the long day we had.
I really couldn't believe how nice this RMH was. Apparently, it's brand new.
There are a lot of rules when you stay at an RMH, but they provide 3 meals a day and free laundry facilities, among other things.
We had been given permission to remove the traction leg wrappings & I promptly got to work at unveiling Clark's legs after almost 2 months. It was amazing how cute his legs were!! And he was so happy and doing well at sitting up with a little help.
The next morning, we had to be at the hospital by 5am. When we got there, I had to wipe Clark down with surgical antiseptic to get him ready to go to the holding room.
His million-dollar smile.
They had a teeny gown for him to wear.
Next, we went to the holding room. Which is the last stop before surgery & is as far as the parents can go.
The anesthesiologist, Dr Kelly, (Clark's newest Granny) came to take him to surgery.
We were given a pager and sent to the surgical waiting area. We went to have breakfast in the cafeteria and came back to wait.
The surgery took about 2 hours and then we were able to go into recovery and see Clark.
Clark looked good, especially for just having come out of surgery. He did have the open reduction so there is an incision in the crease of his groin on the left side. He slept until 6:30 pm. I was so happy about that because I was worried that he would be in a lot of pain. They were on top of pain management, I really couldn't have asked for more. As soon as he woke up, I was able to hold and feed him.
Jeramy and I spent the night at the hospital with Clark. He did well until about 3am and then he was fussing I'm guessing because of his position and not being able to move his legs. Finally, Jeramy and I figured out if we propped him up just so between us on lots of pillows that he would be able to sleep comfortably. All-in-all, I don't think I got more than 10 hours of sleep in the 36 hour time frame so I'm still exhausted.
The next morning Clark had a CT scan to check on the placement of his hip and everything looked good. We waited to talk to his doctor, and get his carseat in working order, we were discharged around 2pm.
Clark is doing well and more time is going by between time that he needs his pain medication. Diapering is a little tricky, but we're figuring it out. All-in-all, I really couldn't be more pleased with how everything went. I was worried, for sure, but I had faith that things would work out. Scottish Rite is amazing, and I am so glad we opted for that 2nd opinion and chose to have Clark treated there.
Monday, October 18, 2010
Rally the Troops
We leave for Dallas in 5 hours. Our appointment tomorrow (really today, hah) is a day-long experience, meeting with the surgical team, the anesthesiologists, therapists & nurses who will be caring for Clark. It's supposed to be something like 10-4. A really long day, especially with a baby in tow.
The reason I'm up so late... well, that would be packing. I was procrastinator extraordinaire for this trip. I think I've packed enough for a year, let's hope that means we'll be home in 3 days. Surely the nurses will look at us like "What 13 pound baby needs 7 outfits, 15 bazillion toys, 6 blankets & a quilt for a 2 day hospital stay?" I'll tell you who....
The reason I'm up so late... well, that would be packing. I was procrastinator extraordinaire for this trip. I think I've packed enough for a year, let's hope that means we'll be home in 3 days. Surely the nurses will look at us like "What 13 pound baby needs 7 outfits, 15 bazillion toys, 6 blankets & a quilt for a 2 day hospital stay?" I'll tell you who....
This kid. The one who was sitting up on his 9 month birthday...with just a teeny bit of help.
Oh yeah, and he tried to eat my hamburger today. I don't know what's happened in the last 3 weeks, but it's like my preemie turned into a big kid all of a sudden. He's rolling everywhere and he bounces like crazy. I'm guessing that's where someone, somewhere got the term "bouncing baby boy". We certainly have one of those.
Guys, I know there are quite a few of you who read this blog. I watch the stats pretty closely and I'm amazed. US, Canada, UK, Germany, Hong Kong, Singapore, Brazil, Australia, Netherlands, China. Wow. People from all over the world know about my son. It's humbling. Right now, I'm going to ask a favor of you...
Please pray for Clark. This surgery is a huge deal. He's a tiny baby. I know how much he's been through and I know the huge mountains God has moved. I believe that God has been answering prayers for Clark since before he was born. There is no such thing as too many prayers. We need every one. So, if you will, take the time to pray for us on the next few days, especially.
I feel like we have an army behind us on this quest. It's a comforting and empowering feeling, let me tell you. I have felt peace fall over me this week, I have a renewed sense of strength and focus and I feel mentally ready to meet this surgery head-on because of all the prayers being offered up for us. I'm rallying the troops to keep those prayers coming.
I will do my best to keep everyone updated day-to-day while we're in Dallas. Again, I really appreciate you caring enough to read about Clark and pray for him. It means so much to us.
Sunday, October 17, 2010
Loss
Here I am, at 5am, sitting on the couch I spent 71 days on last year. I can't sleep. Exactly one year ago, my life changed forever. I came to know the meaning of pPROM, I learned what it meant to fight for someone's life. Someone I didn't really even know.
Looking back on this day a year ago still sends me to tears. I can't explain the feeling of making it to the 2nd trimester after a more-than-rocky 1st trimester, only to have your water break at 2am at 16 weeks. I could try to explain it, but there really aren't words. I can't explain being on bed rest for 95 days, but I can tell you that despite the horror of it, the fear of losing everything, that it was the easiest part.
I could never really explain the joy of Clark's birth day. Smack in the middle of the worst days of my life was the most beautiful day. Seeing his tiny pink nose, the rest of him obscured in a tight swaddle of blanket was the most beautiful sight I have ever beheld. I had all the faith in the world on that day. All of my doubts and fears were dulled by the faith that God had heard the millions of prayers and Clark would have lungs.
There is no possible way I can explain the NICU. For parents of micro-preemies and very sick babies, it's not just some inconvenience. It is their BEST case scenario. Above everything, we wanted to be in that unit. Being there meant we still had a baby. There were moments of sheer terror, unexplainable frustration, tears of fear & of joy and those from being absolutely shell shocked for over 100 days. I still cry every day for some reason related to Clark's journey or something to do with premature birth. Yep, I'm crying right now.
I awoke at 4 this morning to news that another of my pPROM/NICU moms had lost her precious baby after a hard 6 month battle. I ask that you please pray for Jennifer & Steve Teegarden in the coming days and months. Baby Natalie was a loved and wanted baby. She put up an extremely hard and courageous fight and her parents wanted her here to love and raise. There is nothing more unfair and heartbreaking than a parent losing a child.
May I just say that I was pro-life before all of this. It would be more accurate to say that I am now anti-death. As hard as we worked, as I've seen others fight for their children, I can't comprehend how someone could end their child's life simply because it's inconvenient for them. Keep walking for March of Dimes, lighting candles in memory of those lost, but please, never forget the real people behind those causes.
________________________________________________________________
Clark's surgery is 3 days away. I am terrified. You don't come out of a situation we've been in and ever want to walk back in a hospital. You especially do not want your child going under the knife, being under anesthesia or on a ventilator. And it's not just the "I don't want them to go through this" feeling. It's the fear of death, of the worst happening, for everything you've fought for & love to be gone in an instant.
We know, all too well, that it can and does happen. Far too often.
I'm praying for a very uneventful surgery and hospital stay, and after what God has done for us I know, beyond the shadow of a doubt, that he can move mountains. But, I can't explain how scared I am of something bad happening. And don't think for an instant we doubt His power, because we certainly don't. Please join us in prayer, specifically on Tuesday (when we meet the surgical team), Wednesday (surgery), and Thursday (the 1st full day of recovery). Your prayers over the last year have been answered. There is no limit to what God can do.
May I wrap this up by saying that Clark is 9 months old today. He has blossomed so much in the past 2 weeks, it's unreal. He's laughing at more people, returning smiles, almost sitting up, rolling everywhere and bouncing like crazy. The love I have for this sweet boy is fierce and the most powerful feeling I've ever had. I want to thank you for your prayers that made it all possible.
Looking back on this day a year ago still sends me to tears. I can't explain the feeling of making it to the 2nd trimester after a more-than-rocky 1st trimester, only to have your water break at 2am at 16 weeks. I could try to explain it, but there really aren't words. I can't explain being on bed rest for 95 days, but I can tell you that despite the horror of it, the fear of losing everything, that it was the easiest part.
I could never really explain the joy of Clark's birth day. Smack in the middle of the worst days of my life was the most beautiful day. Seeing his tiny pink nose, the rest of him obscured in a tight swaddle of blanket was the most beautiful sight I have ever beheld. I had all the faith in the world on that day. All of my doubts and fears were dulled by the faith that God had heard the millions of prayers and Clark would have lungs.
There is no possible way I can explain the NICU. For parents of micro-preemies and very sick babies, it's not just some inconvenience. It is their BEST case scenario. Above everything, we wanted to be in that unit. Being there meant we still had a baby. There were moments of sheer terror, unexplainable frustration, tears of fear & of joy and those from being absolutely shell shocked for over 100 days. I still cry every day for some reason related to Clark's journey or something to do with premature birth. Yep, I'm crying right now.
I awoke at 4 this morning to news that another of my pPROM/NICU moms had lost her precious baby after a hard 6 month battle. I ask that you please pray for Jennifer & Steve Teegarden in the coming days and months. Baby Natalie was a loved and wanted baby. She put up an extremely hard and courageous fight and her parents wanted her here to love and raise. There is nothing more unfair and heartbreaking than a parent losing a child.
May I just say that I was pro-life before all of this. It would be more accurate to say that I am now anti-death. As hard as we worked, as I've seen others fight for their children, I can't comprehend how someone could end their child's life simply because it's inconvenient for them. Keep walking for March of Dimes, lighting candles in memory of those lost, but please, never forget the real people behind those causes.
________________________________________________________________
Clark's surgery is 3 days away. I am terrified. You don't come out of a situation we've been in and ever want to walk back in a hospital. You especially do not want your child going under the knife, being under anesthesia or on a ventilator. And it's not just the "I don't want them to go through this" feeling. It's the fear of death, of the worst happening, for everything you've fought for & love to be gone in an instant.
We know, all too well, that it can and does happen. Far too often.
I'm praying for a very uneventful surgery and hospital stay, and after what God has done for us I know, beyond the shadow of a doubt, that he can move mountains. But, I can't explain how scared I am of something bad happening. And don't think for an instant we doubt His power, because we certainly don't. Please join us in prayer, specifically on Tuesday (when we meet the surgical team), Wednesday (surgery), and Thursday (the 1st full day of recovery). Your prayers over the last year have been answered. There is no limit to what God can do.
May I wrap this up by saying that Clark is 9 months old today. He has blossomed so much in the past 2 weeks, it's unreal. He's laughing at more people, returning smiles, almost sitting up, rolling everywhere and bouncing like crazy. The love I have for this sweet boy is fierce and the most powerful feeling I've ever had. I want to thank you for your prayers that made it all possible.
Tuesday, October 12, 2010
Prairies & Pineywoods
"Following the Lampasas River from the Stillhouse Hollow Dam, travelers soon enter a tall bottomland forest. Throughout this forest, a series of boardwalks and bridges cross creeks flowing into the river. Visitors can enjoy several impressive waterfalls along the way."
Today Jeramy, Kade, Clark & I went to Chalk Ridge Falls, one of the parks in the Chisolm Trail loop of the Prairies & Pineywoods Wildlife Trail. I've been going there to hike for over 15 years and while the trail isn't near what it once was (hint, hint Corps of Engineers...) it is still a treasure in our area.
There are tons of animals & other wildlife at this park. In the years I've been going there, I've seen raccoon, armadillo, possum, deer, owls, snakes, tons of birds and even one otter! Today I noticed lots of butterfly. It really is a great place to hike.
We brought the camera along today & captured some great pictures.
Today Jeramy, Kade, Clark & I went to Chalk Ridge Falls, one of the parks in the Chisolm Trail loop of the Prairies & Pineywoods Wildlife Trail. I've been going there to hike for over 15 years and while the trail isn't near what it once was (hint, hint Corps of Engineers...) it is still a treasure in our area.
There are tons of animals & other wildlife at this park. In the years I've been going there, I've seen raccoon, armadillo, possum, deer, owls, snakes, tons of birds and even one otter! Today I noticed lots of butterfly. It really is a great place to hike.
We brought the camera along today & captured some great pictures.
With Clark's surgery fast approaching, I had the urge to get out and enjoy some "normal". Your prayers are needed for a successful surgery & a very uneventful hospital stay.
Sunday, October 10, 2010
NICU Reunion 10/10/10
Today was the NICU reunion. We debated over and over about whether to go or not, considering Clark has surgery in 10 days and has been in quarantine for awhile now to stay well. We eventually decided not to go & I even sent out emails telling our NICU family that we wouldn't be there, regretfully. Then I had a change of heart. I had a feeling that it would be ok if we went (and brought a gallon of Purell and a tank of Lysol, of course). I knew I would regret it if we didn't go.
I am so glad we decided to. We saw people that we haven't seen in months and Clark got to meet some of the other babies. I'll tell the story in the pictures I took..since there are about a million....
I am so glad we decided to. We saw people that we haven't seen in months and Clark got to meet some of the other babies. I'll tell the story in the pictures I took..since there are about a million....
LaRhesa & Kaidyn
I love how Clark & Kaidyn are doing the same pose!
The wonder team from the night Clark's lung collapsed.
Neonatal Nurse Practitioners,
Amy & Melissa
Clark's doctor,
Dr Cheryl Cipriani, baby whisperer &
certainly the most stylish doctor I've ever met.
Nurse Mela, ironically she was never Clark's nurse.
But, we were on the same volleyball team in 7th grade...haha.
Clark and the beautiful baby Cadence.
Clark & his bff, Mary
He gave her lots of good snuggles today.
Hi Deborah!!
Deborah was always there to lift our spirits on the tough days.
Clark & Maya's 1st meeting...
yes, he is trying to hold her hand
It didn't go over well..
sorry MayaBug, we <3 you!
Dr Govande, he was Clark's doctor from
time-to-time when Dr Cipriani was out.
Nurse Dynisha, giver of Clark's 1st tub bath &
our transporting nurse to the CCN.
Nurse Isolde, the one we gave many gray hairs
with the big "bath crash".
Dr Little, the surgeon who operated on Clark's hernias.
Apparently those were the stuff of legend and are now a part
of Dr Little's teaching curriculum because of their
gigantic-ness.
One sleepy little boy, post reunion.
We missed a lot of people that we hoped to see today. But I know they had to leave someone in the NICU to hold down the fort. We hope to catch them next time we go up there for a visit.
Wednesday, October 6, 2010
Let's see how well my memory is working..
We've been very, very busy lately. So I do apologize for not blogging sooner. Most recently Clark has had his 6 month NICU follow-up appointment & a pediatric visit.
The NICU follow-up went well. He's 2 months advanced cognitively, 1 month advanced with fine motor skills and behind in gross motor, expressive & receptive communication. The gross motor can be explained by his limitations due to his hip issues. He's not able to start therapy yet because of the ongoing process of fixing the hip. The low score on receptive communication is due to his vision problems. And I'm not really sure about the expressive communication issue. That one could just be his personality.
Speaking of vision, his eye appointment is in December. His eyes will be dilated and refracted and then he'll likely be fitted with glasses. We fully expect a "legally blind" diagnosis, considering the underdevelopment of his optic nerve . I'm just putting that out there so that if it is the case, none of you will be shocked. If you know us personally, you may have noticed that Clark does not make eye contact and rarely interacts visually. If you've wondered about that, it's due to his underdeveloped optic nerve because of his missing septum pellucidum.
The pediatric appointment did not go so well. Firstly, Clark was denied by his insurance for his RSV vaccine. For those of you who don't know what RSV is, it is basically like a common cold in adults but in infants and preemies, in particular, it is deadly...extremely serious business. I am currently appealing the denial and I'm hopeful, but not holding my breath. This is a $1,000/month vaccine, folks. Every time I go out and interact with people I come home and decontaminate with antimicrobial soap..from head to toe. Yes, that green stuff from the hospital. Somehow, I'm sure that I'm shortening my lifespan by slathering that stuff on, but if it keeps the germies away, then GREAT. Clark has been in quarantine for over a month now.
The bad part is that Jeramy works for the airline. He comes in contact with people and luggage that has been everywhere in the world, from the Middle East to Russia, Central America and Africa, even. There is literally no telling what kinds of germs he's bringing into our house. Clark's pediatrician said that Jeramy's job is not conducive to Clark's health. That's not bad news at all. Ugh.
He also had to have labs drawn because he is anemic and his doctor wanted to check his iron levels and his cortisol levels before clearing him for surgery. They did a finger prick and filled 2 vials with his blood. Yes, it was 3 minutes of pure screaming torture. Poor baby. :( I'm waiting on pins and needles to hear from her about those results.
The good news is that Clark is growing! He's ON THE CHART height-wise!!! The 5th percentile never felt so good. He's making his own tiny curve weight-wise, but he is starting to eat more baby food and cereal and yogurt so hopefully he can pack on some more ounces. Send good growing vibes Clark's way, he's currently 13 lbs 1.25oz & 8.5 months old. Yes...he looks like a 2-3 month old.
Speaking of that sweet little boy, here's a recent pic:
The NICU follow-up went well. He's 2 months advanced cognitively, 1 month advanced with fine motor skills and behind in gross motor, expressive & receptive communication. The gross motor can be explained by his limitations due to his hip issues. He's not able to start therapy yet because of the ongoing process of fixing the hip. The low score on receptive communication is due to his vision problems. And I'm not really sure about the expressive communication issue. That one could just be his personality.
Speaking of vision, his eye appointment is in December. His eyes will be dilated and refracted and then he'll likely be fitted with glasses. We fully expect a "legally blind" diagnosis, considering the underdevelopment of his optic nerve . I'm just putting that out there so that if it is the case, none of you will be shocked. If you know us personally, you may have noticed that Clark does not make eye contact and rarely interacts visually. If you've wondered about that, it's due to his underdeveloped optic nerve because of his missing septum pellucidum.
The pediatric appointment did not go so well. Firstly, Clark was denied by his insurance for his RSV vaccine. For those of you who don't know what RSV is, it is basically like a common cold in adults but in infants and preemies, in particular, it is deadly...extremely serious business. I am currently appealing the denial and I'm hopeful, but not holding my breath. This is a $1,000/month vaccine, folks. Every time I go out and interact with people I come home and decontaminate with antimicrobial soap..from head to toe. Yes, that green stuff from the hospital. Somehow, I'm sure that I'm shortening my lifespan by slathering that stuff on, but if it keeps the germies away, then GREAT. Clark has been in quarantine for over a month now.
The bad part is that Jeramy works for the airline. He comes in contact with people and luggage that has been everywhere in the world, from the Middle East to Russia, Central America and Africa, even. There is literally no telling what kinds of germs he's bringing into our house. Clark's pediatrician said that Jeramy's job is not conducive to Clark's health. That's not bad news at all. Ugh.
He also had to have labs drawn because he is anemic and his doctor wanted to check his iron levels and his cortisol levels before clearing him for surgery. They did a finger prick and filled 2 vials with his blood. Yes, it was 3 minutes of pure screaming torture. Poor baby. :( I'm waiting on pins and needles to hear from her about those results.
The good news is that Clark is growing! He's ON THE CHART height-wise!!! The 5th percentile never felt so good. He's making his own tiny curve weight-wise, but he is starting to eat more baby food and cereal and yogurt so hopefully he can pack on some more ounces. Send good growing vibes Clark's way, he's currently 13 lbs 1.25oz & 8.5 months old. Yes...he looks like a 2-3 month old.
Speaking of that sweet little boy, here's a recent pic:
I know all of you are and have been praying for Clark and we can't tell you how much we appreciate that. I have all the confidence in the world in our team at Scottish Rite and I am praying for them to do everything that Clark needs to get his hip fixed and stay healthy in the process. His doctor/surgeon's name is Dr Birch if you'd like to pray for him, specifically. Clark's surgery is scheduled for October 20. Bearing all complications, that will be the big day. Please also pray for Jeramy & I, especially me...that we can hold it together and be strong for Clark.
Also, keep our friends, the Gallaways, in your prayers. Adjusting back to "normal" life after what they have been through is not easy. They need all the prayers and good thoughts you can send their way.
I'm sure there's something I skipped over in this update, and I do apologize. I feel like I've been crazy-busy lately and if I didn't have everything programmed into the calendar on my phone, I'd never know what I was supposed to be doing! Well, thank you for caring about Clark enough to come visit and read. Until next time...
Subscribe to:
Posts (Atom)