I just returned home from visiting Aiden and his Mommy and Daddy in the hospital. Oh what memories. November will be three years since Rachel's palate repair, but what you experience and what you go through are all things that won't be forgotten, or at least not hard to retrieve from the memory banks. Like how different their cry is after the palate is repaired, as soon as I heard Aiden cry, it instantly reminded me that Rachel's cry was different too after her repair.
Aiden and his family are the first cleft affected family that I've actually known in real life. Over the last few years, I've met many wonderful, wonderful families online, that have been affected by having a baby with a cleft of some sort, and being part of that "been there done that" club you have a special connection with those friends. But knowing someone in real life dealing with the same issues, the same hurdles, the exact same hospital and doctors, and being able to reach out (literally) is even more amazing.
Aiden had his lip repaired, his palate repaired, his gum (alveolar ridge) repaired, his nose repaired, AND he had tubes placed in his ears. That poor little guy went through the ringer today. He was having a rough time this evening, and really who blames him. Poor guy has had his ears messed with, his lip closed and no longer has a spot to run his tongue through, nor is his palate the large gaping hole it was when he started his day off this morning. He literally has a whole new mouth to get used to.
I know from having stayed the night with Rachel, Joy won't get much rest tonight. Pray that Aiden settles down and is able to be comforted without having to be walked all night long. And pray for Joy, and Dale, and even Aiden's older siblings. His older brother was having a rough time this afternoon, it's an adjustment for them too, they fell in love with Aiden with a wide smile and now he has an entirely new look about him.
I notice Joy's already posted an update of her own, so check it out and keep checking back there for more updates and pictures!
Showing posts with label Cleft Friends. Show all posts
Showing posts with label Cleft Friends. Show all posts
Wednesday, October 01, 2008
Sunday, September 28, 2008
Aiden's Blog
Remember a couple of weeks ago, I posted about meeting a local family who has the same craniofacial team as Rachel and we met for lunch, etc. Aiden's mommy has started her own blog! It's a blog that not only follows Aiden's journey with cleft, but the entire family. Check it out!
Please keep Aiden and his Mommy and Daddy in your prayers, Aiden has a BIG surgery this Wednesday. He is having his cleft lip AND his cleft palate repaired at the same time, as well has having tubes put in his ears. Please be praying for the doctors and nurses and all who they come in contact with. I know they covet and welcome your prayers!
Please keep Aiden and his Mommy and Daddy in your prayers, Aiden has a BIG surgery this Wednesday. He is having his cleft lip AND his cleft palate repaired at the same time, as well has having tubes put in his ears. Please be praying for the doctors and nurses and all who they come in contact with. I know they covet and welcome your prayers!
Monday, September 08, 2008
Meet Aiden
A couple of days ago I wrote a post about how a mom, after looking through Rachel's Journey had discovered we had the same plastic surgeon, etc.
Long story short, we met today for lunch and we talked for over two hours about our experiences with having a cleft affected baby, I answered her questions, told her Rachel's story, showed her the inside of Rachel's mouth and how awesome the palate repair was. It was a great time of talking, sharing our baby stories.
Aiden will have both his lip and his palate repaired on October 1st. That surgery will be lengthy and the outcome will be phenomenal to have both his lip and palate repaired in one shot. It'll be one less surgery, one less time under the anesthesia, one less time to have to deal with restraints, one less time of handing your baby over and watching the scrub nurse walk away.
Seeing his adorable little face, watching him stick his tongue through his cleft in his lip, seeing him drool and drool and drool, and then watching him eat with the Haberman, brought back soooo many memories of those first months with Rachel. The Lord has been so good to Rachel, and to us, in this journey.
It was great to meet Joy and Aiden and his big sister, Alexis (who is exactly one day older than Rachel!!). And we look forward to meeting again soon!
Long story short, we met today for lunch and we talked for over two hours about our experiences with having a cleft affected baby, I answered her questions, told her Rachel's story, showed her the inside of Rachel's mouth and how awesome the palate repair was. It was a great time of talking, sharing our baby stories.
Aiden will have both his lip and his palate repaired on October 1st. That surgery will be lengthy and the outcome will be phenomenal to have both his lip and palate repaired in one shot. It'll be one less surgery, one less time under the anesthesia, one less time to have to deal with restraints, one less time of handing your baby over and watching the scrub nurse walk away.Seeing his adorable little face, watching him stick his tongue through his cleft in his lip, seeing him drool and drool and drool, and then watching him eat with the Haberman, brought back soooo many memories of those first months with Rachel. The Lord has been so good to Rachel, and to us, in this journey.
It was great to meet Joy and Aiden and his big sister, Alexis (who is exactly one day older than Rachel!!). And we look forward to meeting again soon!
Saturday, September 06, 2008
New Cleft Friends
Yesterday afternoon, I checked out Rachel's guestbook. Something I haven't done in months because it'd been so long since anyone had signed it, I simply forget it's there. Well, there were two entries.
One, from a mommy in Illinois (thank you for your kind words) who had a son with a cleft lip and palate and then another one local to us, probably only 15 miles from where we live. She found Rachel's Journey through a link on another cleft affected friends blog and as she searched through the pages of Rachel's Journey, she recognized our plastic surgeon because it's her sons plastic surgeon as well!!! Which means essentially, we see the same craniofacial team of doctors, same hospital, etc. Her little boy is 4 1/2 months old and was scheduled to have his first surgery this coming week, but due to scheduling complications (been there, done that) it's been moved to October.
Long story short, I emailed her and we are meeting in person for lunch on Monday!!! I am so excited.
The journey of having a cleft affected baby can be a lonely one. But thankfully there are many of us cleft affected families that keep blogs now (see links in sidebar) that we have our own community of online support. However, as good as online support is, it's nice to know someone in real life whom you can talk to, ask questions of, stare at the lip repair, etc.
When Rachel was born, we had so many questions. We were scared, anxious, and clueless of the road that laid ahead. If someone had come to visit us and offered answers and encouragement, it would have maybe been a little easier to grasp. And for that very reason, at our last craniofacial team appointment, we talked to the social worker about possibly becoming a parents advocate, if you'd call it that. My idea was to be a contact for the craniofacial team to call so that a visit could be made to the families who'd had a baby born with a cleft (while they were still in the hospital) to answer any questions and show pictures of Rachel's Journey as a source of hope and encouragement for their own journey.
So it is with great excitement and anticipation that I look forward to meeting these new friends on Monday to answer her questions, offer encouragement, and support to her as she's at the very beginning of the journey we've already traveled.
One, from a mommy in Illinois (thank you for your kind words) who had a son with a cleft lip and palate and then another one local to us, probably only 15 miles from where we live. She found Rachel's Journey through a link on another cleft affected friends blog and as she searched through the pages of Rachel's Journey, she recognized our plastic surgeon because it's her sons plastic surgeon as well!!! Which means essentially, we see the same craniofacial team of doctors, same hospital, etc. Her little boy is 4 1/2 months old and was scheduled to have his first surgery this coming week, but due to scheduling complications (been there, done that) it's been moved to October.
Long story short, I emailed her and we are meeting in person for lunch on Monday!!! I am so excited.
The journey of having a cleft affected baby can be a lonely one. But thankfully there are many of us cleft affected families that keep blogs now (see links in sidebar) that we have our own community of online support. However, as good as online support is, it's nice to know someone in real life whom you can talk to, ask questions of, stare at the lip repair, etc.
When Rachel was born, we had so many questions. We were scared, anxious, and clueless of the road that laid ahead. If someone had come to visit us and offered answers and encouragement, it would have maybe been a little easier to grasp. And for that very reason, at our last craniofacial team appointment, we talked to the social worker about possibly becoming a parents advocate, if you'd call it that. My idea was to be a contact for the craniofacial team to call so that a visit could be made to the families who'd had a baby born with a cleft (while they were still in the hospital) to answer any questions and show pictures of Rachel's Journey as a source of hope and encouragement for their own journey.
So it is with great excitement and anticipation that I look forward to meeting these new friends on Monday to answer her questions, offer encouragement, and support to her as she's at the very beginning of the journey we've already traveled.
Thursday, July 17, 2008
Prayers for Ian
This is Ian and he's having his palate repaired tomorrow. Would you please add him to your prayer list for his surgery to go well. And for his Mommy and Daddy too!
Wednesday, June 11, 2008
A New Cleft Friend
The internet can be a very large place, but when you meet new people whom you can relate to, it makes it feel so such smaller! Especially when they are walking a road you once walked.
Meet Drew. Isn't he the cutest?? He's 11 months old and he was born with the exact same cleft as Rachel. He has two surgeries under his belt, his lip has been repaired, and he'll have his palate fixed in July.
Doesn't he have the biggest blue eyes?? Every cleft affected baby we've "met" has the most breath taking eyes, in a lot of cases, they are blue. I think the Lord must give these special babes such breathtaking eyes to perhaps take the attention off their mouth and scars, etc.
Meet Drew. Isn't he the cutest?? He's 11 months old and he was born with the exact same cleft as Rachel. He has two surgeries under his belt, his lip has been repaired, and he'll have his palate fixed in July.
Doesn't he have the biggest blue eyes?? Every cleft affected baby we've "met" has the most breath taking eyes, in a lot of cases, they are blue. I think the Lord must give these special babes such breathtaking eyes to perhaps take the attention off their mouth and scars, etc.
Tuesday, May 13, 2008
Baby Abigail has Arrived!
A few months back, I shared a post about a family who had learned the baby they were expecting would be born with a cleft. Baby Abigail was born on Thursday, and the ultrasounds were right, she was born with a cleft, a bilateral cleft. She was born last Friday and already had the first of many doctor appointments today.
This family has quite a road ahead of them. But Praise God they are a Christian family and knows that the Lord hasn't given them anything they can't handle. And He will help them through this journey. But I know, just as we appreciated all the prayers on behalf of Rachel, they too would appreciate prayers for Abigail. So prayer warriors, would you please be praying for the Jenson Family.
You can check out Little Miss Abigail at her own blog. Bookmark it. Follow her Journey. See God work wonders.
This family has quite a road ahead of them. But Praise God they are a Christian family and knows that the Lord hasn't given them anything they can't handle. And He will help them through this journey. But I know, just as we appreciated all the prayers on behalf of Rachel, they too would appreciate prayers for Abigail. So prayer warriors, would you please be praying for the Jenson Family.
You can check out Little Miss Abigail at her own blog. Bookmark it. Follow her Journey. See God work wonders.
Saturday, April 12, 2008
Prayers for Rylan
Rylan was born with a bilateral cleft lip and palate, and while his lip has already been repaired, he is scheduled for his palate repair on Monday. Please keep him and his parents and all the doctors in your prayers.
Tuesday, February 19, 2008
His Perfect Timing
When I was pregnant with Rachel, we had absolutely no idea about Rachel's cleft lip and palate until she was being delivered via an unscheduled c-section. In this day and age of ultrasound technology, people are often surprised that her clefts weren't picked up on ultrasound.
We thought about it a lot in the early days and truth be told, we really didn't have thorough ultrasounds when I was pregnant with Rachel like I did when I was pregnant with Hannah. With Hannah, we had ultrasounds where they showed us the kidneys, the beating heart, the arms, the legs, every little nook and cranny. But with Rachel, the ultrasounds were done in the OB/GYN's office by a tech who was simply measuring and documenting growth and measurements. So not having proper ultrasounds is one reason why her clefts weren't picked up, but the other reason, and the reason I believe was the main reason - it wasn't the Lord's will that we find out prior to Rachel's arrival. For some reason, He knew it was best for us and our family that we found out when we did. Those reasons won't ever be known, but it was His will and His perfect timing.
For others, His will and timing are different.
Last week, a comment was left by a Mommy, who at over half way through her pregnancy found out that their unborn baby will have a cleft lip, possibly a cleft palate. For that family He chose to reveal the clefts sooner, rather than later. And in their course of preparing and researching, they found Rachel's Journey!
"For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
Your works are wonderful,
I know that full well."
Psalm 139:13-14
For this family and the many others who have come our way in the last few years, I hope that the pictures and the telling of Rachel's Journey through this blog offers them encouragement and hope and joy seeing how well the Lord has taken care of our Rachel, and how He's gotten us through having had a baby been born with a birth defect.
Baby Abigail's parents have set up a blog for her journey. If you'd like to meet her and begin praying for her, and her parents, you can visit her blog.
We thought about it a lot in the early days and truth be told, we really didn't have thorough ultrasounds when I was pregnant with Rachel like I did when I was pregnant with Hannah. With Hannah, we had ultrasounds where they showed us the kidneys, the beating heart, the arms, the legs, every little nook and cranny. But with Rachel, the ultrasounds were done in the OB/GYN's office by a tech who was simply measuring and documenting growth and measurements. So not having proper ultrasounds is one reason why her clefts weren't picked up, but the other reason, and the reason I believe was the main reason - it wasn't the Lord's will that we find out prior to Rachel's arrival. For some reason, He knew it was best for us and our family that we found out when we did. Those reasons won't ever be known, but it was His will and His perfect timing.
For others, His will and timing are different.
Last week, a comment was left by a Mommy, who at over half way through her pregnancy found out that their unborn baby will have a cleft lip, possibly a cleft palate. For that family He chose to reveal the clefts sooner, rather than later. And in their course of preparing and researching, they found Rachel's Journey!
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
Your works are wonderful,
I know that full well."
Psalm 139:13-14
For this family and the many others who have come our way in the last few years, I hope that the pictures and the telling of Rachel's Journey through this blog offers them encouragement and hope and joy seeing how well the Lord has taken care of our Rachel, and how He's gotten us through having had a baby been born with a birth defect.
Baby Abigail's parents have set up a blog for her journey. If you'd like to meet her and begin praying for her, and her parents, you can visit her blog.
Saturday, December 08, 2007
Prayers for Adalynn
A while back, I introduced Adalynn. She was born with the same cleft as Rachel was. She had her lip repaired in September, and Monday she has surgery to have her palate repaired as well as tubes placed in her ears. Her surgery is scheduled for 8:00, that's 5:00 California time!
Today, I am asking all of the prayer warriors who've prayed for Rachel through her surgeries and recoveries, to add Adalynn and her Mommy (Shannon) and her Daddy (John) to your prayer lists. I know they would appreciate and be blessed by the extra prayers.
Today, I am asking all of the prayer warriors who've prayed for Rachel through her surgeries and recoveries, to add Adalynn and her Mommy (Shannon) and her Daddy (John) to your prayer lists. I know they would appreciate and be blessed by the extra prayers.
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