I am going to use Caring Bridge to update for now. I hope to be back to a normal blogger at some point.
www.caringbridge.org/visit/colinlochamy
Sunday, September 19, 2010
Monday, September 13, 2010
The next part of our journey...
At the boys' 9 month check-up, Colin's iron tested low. Dr. Kim put him on a supplement for a month then we re-tested. It was still low. On August 9th, he had a CBC (complete blood count) test. It still showed his iron was low, but no other problems. Last Tuesday evening, Andrea was here helping me. I picked Colin up to play and he felt a little warm. Sure enough, he had a pretty high fever for him. It stayed over 100 to 101 the next few days. Sometimes Tylenol and Advil would bring it down, but not all the way down. At the same time, at some point, I noticed he had a cold sore. I thought maybe he was just fighting a virus. Boy did I think wrong. On Wednesday night, Allen's mom was here and all of a sudden we noticed some sores on his body. I took him to the pediatrican Thursday morning and we were sent straight to the ER. Yikes. I am not sure the reason she sent us was the problem, but I sure am grateful for Tania at Dr. Kim's office. She told me "I don't like his color and these sores need antibiotics but I won't give them to him without some further testing."
Long story short, Colin's blood is low and his immune system was so low that he couldn't fight even a cold sore. So teething-Colin spread the virus to his little fingers and to his nose since he won't keep his fingers out of his mouth. It is a scary thing to be told everything that could be wrong. I won't go into details yet because we truthfully don't know all of the answers. So far, I can tell you that leukemia has been MOSTLY ruled out. We are waiting on test results to confirm. The doctor today explained "there could be hundreds of things wrong and we are eliminating them...sometimes one at a time." It could possibly takes weeks or even months to figure out what is going on. It has been a long weekend and we are just getting started.
Please pray for his bone marrow and blood counts to be healed and normal. We love you all and thank you for your prayers.
Long story short, Colin's blood is low and his immune system was so low that he couldn't fight even a cold sore. So teething-Colin spread the virus to his little fingers and to his nose since he won't keep his fingers out of his mouth. It is a scary thing to be told everything that could be wrong. I won't go into details yet because we truthfully don't know all of the answers. So far, I can tell you that leukemia has been MOSTLY ruled out. We are waiting on test results to confirm. The doctor today explained "there could be hundreds of things wrong and we are eliminating them...sometimes one at a time." It could possibly takes weeks or even months to figure out what is going on. It has been a long weekend and we are just getting started.
Please pray for his bone marrow and blood counts to be healed and normal. We love you all and thank you for your prayers.
Monday, August 2, 2010
The boys are 1!! Saturday July 31, 2010
Colin and Ethan turn 1 today. Wow. WOW!
We had a party and invited lots of family and a few close friends. It was hard making the list...I wanted to invite EVERYONE! About 74 people showed up which was about half. Not a bad turnout for a hot Saturday afternoon! We had it at Jumpits - a very kid-friendly place with a party room. I did Krispy Kreme donuts instead of traditional cake. I just never found a cake I was happy with that I could afford to feed that many people! HA!
We had a party and invited lots of family and a few close friends. It was hard making the list...I wanted to invite EVERYONE! About 74 people showed up which was about half. Not a bad turnout for a hot Saturday afternoon! We had it at Jumpits - a very kid-friendly place with a party room. I did Krispy Kreme donuts instead of traditional cake. I just never found a cake I was happy with that I could afford to feed that many people! HA!
 |
Donuts and milk |
.jpg) |
| The boys' birthday "cakes" |
.jpg) |
Colin's first picture |
 |
| Colin |
.jpg) |
| Ethan's first picture |
 |
| Ethan |
 |
| Happy 1st Birthday!! |
Wednesday, June 23, 2010
Ethan has a world to his left!
Ethan is smiling even while wearing the annoying neck brace. He only has to wear it for a week.
Dr. Williams performed a muscle release surgery on Ethan last Wednesday June 16th. Allen and I both had a lot of "what if" questions about this - could we have done his exercises more often or positioned him better to help with this problem. Dr. Williams told us after surgery that therapy NEVER would have released what he removed. We were relieved and just have to move forward with getting him better! In less than a week, we can already tell that Ethan's neck is improving! He starts rehab and physical therapy on Thursday, so please pray for effective exercises that will help him gain full range of motion with his neck...and for overall strength for his muscles in his body. He really seems to be doing great but we still want more for him!
During the same surgery, another doctor took out his g-tube and put in a low profile button. It doesn't change anything...he is still being tube-fed. It does make it a whole lot easier to remove WHEN he is eating by mouth. We are going to The Marcus Center on June 30th for a feeding program evaluation. We've heard it is like boot camp for "stubborn" or problem eaters. They have a whole team of doctors that work together to see if Ethan is eligible for treatment.
The third procedure was a scope of his vocal cords. Dr. Gower DID find a deformity in his vocal cords that seems to prevent them from closing. We thought up until now it was his low tone that was doing that. So...what does this mean? We have no idea! I'm gathering information and asking questions. She did mention a very tedious surgery that might or might not help - and we have A LOT more questions about that.
Please continue to pray for Ethan...for overall strength, for the desire and ability to eat by mouth and for developmental milestones to be natural for him to accomplish. We are seeing definite improvements and progress and that is so encouraging. It will still be months, possibly years, before Ethan is doing things that Colin is already doing. For THAT, I ask for prayers for his self-consciousness and self-confidence. We know he can do it (at least until someone tells us otherwise)!!
Sunday, May 23, 2010
Time Flies!
It has been almost a month since my last update. I think that is probably not a bad thing...it means nothing big has happened. But at the same time, a lot has happened! I thought I would take a few minutes on this very quiet Sunday morning to catch you up on The Lochamy Boys...
Colin is simply amazing. All of a sudden (with some restless days and nights), he has 8 teeth! I think it is 8...he clamps his mouth shut if we try to look. He also clamps down on fingers so no way am I putting my finger in to feel exactly how many, but I think all 8 have finally poked through. He learns new things very quickly...you can watch him watching something new and can just see his wheels turning. He has also just figured out a few things on his own. When I am "high 5-ing" with him, sometimes I close my hand. He pries my fingers open so he can keep hitting my palm. He loves ANYTHING that spins...a lot of the toys have moving parts, but the wheels and gadgets that spin are definitely his favorite. HOW DOES HE KNOW TO DO THESE THINGS?! He is so much fun to watch! He isn't crawling but wow can he move around! Crawling is the very next thing, I'm sure. We haven't encouraged it because I know once he figures it out, we will spend most of our day trying to keep him corralled! I am pretty sure in the next few weeks, we are going to put the dining room furniture in storage and turn that area into the boys' play room. I'm thinking the rubber mat squares on the floor and all of their toys will make a fun place! Plus gates of course!
And then there is sweet, brave, strong (in the character-sense) Ethan! Within the last week and a half, he has transitioned to wearing his helmet 23 hours a day (and is doing VERY well in it). He is so cute...Allen's mom says with his face framed by the helmet, he looks more like Allen than ever. Personally, Allen and I think he also looks a lot like her...which is very sweet to see, since he is named after her! My mom calls him "Super Ethan!" He is having surgery on June 16th to have his neck muscle that is still so tight "released." The doctor actually cuts some of the tight muscle out to allow it to stretch. Ugh...but the he is VERY confident that we will see good results quickly. THAT is good news! I have been very careful using the words "special needs" when talking about Ethan. Everything we know about Ethan's "condition" (which isn't much and we still don't have a diagnosis, more on that later) tells us that he should grow out of a lot of this, if not all. Well, what I mean is that as he gets stronger, strength will help him compensate for his low tone. His physical therapist says she has seen low tone babies sit up, crawl, walk...just delayed, which we already knew. His doctors tell us, without making promises, that things SHOULD improve as he gets bigger and stronger. All of that to say...we did buy him a special needs chair. I gulped as I ordered it...but it is called a Tomato Seat and is specifically designed to help babies with low tone build core strength. Ethan LOVES to sit up, so we can't wait to learn how to position him in it so he will be able to sit up more during the day. Right now, he lies down to eat (Dad...is that proper grammar?) with his head turned to the right. Unfortunately, that positioning does not help his neck at all. I really try not to do a lot of "what ifs" in life. I don't think it is constructive and it certainly doesn't show a lot of faith in God...and I think He can make all decisions "work." I do think that we could've helped Ethan a lot more with positioning...and maybe we wouldn't have to have surgery. There are a lot of ways to think about it...but I am trusting that we are walking down the right road for right now. We want what is best for Ethan...always...and we don't enter into any decision lightly.
Whew...so...we have put off another surgery that another doctor wanted to do on June 16th. Every doctor we've ever seen with Ethan has mentioned a muscle biopsy. We now are working with Dr. John Shoffner. He is the director of Medical Neurogenetics, which is a lab that does LOTS of specialty testing. He wants to do a muscle biopsy and a spinal tap on Ethan to see if he can diagnose him. At this time, we are staying active as a patient but have declined surgery for now. Ethan is progressing, so Allen and I aren't in a hurry for a diagnosis. As I type that, I do have to say that this testing IS in Ethan's future. There could be medicine or treatment that would help him, so we don't want to miss out on that. But for now, we are fine with putting off the pain of additional surgeries.
Both boys are very happy. The both clap their hands in response to "yay Colin or yay Ethan!" They both love to smile and laugh. Colin and I look at each other sometimes and just start laughing for no reason. You can see his whole body shake. Ethan's laugh is so different, but it is a wonderful sound. Their smiles and laughter are my VERY favorite part of being a mommy!!
Colin is simply amazing. All of a sudden (with some restless days and nights), he has 8 teeth! I think it is 8...he clamps his mouth shut if we try to look. He also clamps down on fingers so no way am I putting my finger in to feel exactly how many, but I think all 8 have finally poked through. He learns new things very quickly...you can watch him watching something new and can just see his wheels turning. He has also just figured out a few things on his own. When I am "high 5-ing" with him, sometimes I close my hand. He pries my fingers open so he can keep hitting my palm. He loves ANYTHING that spins...a lot of the toys have moving parts, but the wheels and gadgets that spin are definitely his favorite. HOW DOES HE KNOW TO DO THESE THINGS?! He is so much fun to watch! He isn't crawling but wow can he move around! Crawling is the very next thing, I'm sure. We haven't encouraged it because I know once he figures it out, we will spend most of our day trying to keep him corralled! I am pretty sure in the next few weeks, we are going to put the dining room furniture in storage and turn that area into the boys' play room. I'm thinking the rubber mat squares on the floor and all of their toys will make a fun place! Plus gates of course!
And then there is sweet, brave, strong (in the character-sense) Ethan! Within the last week and a half, he has transitioned to wearing his helmet 23 hours a day (and is doing VERY well in it). He is so cute...Allen's mom says with his face framed by the helmet, he looks more like Allen than ever. Personally, Allen and I think he also looks a lot like her...which is very sweet to see, since he is named after her! My mom calls him "Super Ethan!" He is having surgery on June 16th to have his neck muscle that is still so tight "released." The doctor actually cuts some of the tight muscle out to allow it to stretch. Ugh...but the he is VERY confident that we will see good results quickly. THAT is good news! I have been very careful using the words "special needs" when talking about Ethan. Everything we know about Ethan's "condition" (which isn't much and we still don't have a diagnosis, more on that later) tells us that he should grow out of a lot of this, if not all. Well, what I mean is that as he gets stronger, strength will help him compensate for his low tone. His physical therapist says she has seen low tone babies sit up, crawl, walk...just delayed, which we already knew. His doctors tell us, without making promises, that things SHOULD improve as he gets bigger and stronger. All of that to say...we did buy him a special needs chair. I gulped as I ordered it...but it is called a Tomato Seat and is specifically designed to help babies with low tone build core strength. Ethan LOVES to sit up, so we can't wait to learn how to position him in it so he will be able to sit up more during the day. Right now, he lies down to eat (Dad...is that proper grammar?) with his head turned to the right. Unfortunately, that positioning does not help his neck at all. I really try not to do a lot of "what ifs" in life. I don't think it is constructive and it certainly doesn't show a lot of faith in God...and I think He can make all decisions "work." I do think that we could've helped Ethan a lot more with positioning...and maybe we wouldn't have to have surgery. There are a lot of ways to think about it...but I am trusting that we are walking down the right road for right now. We want what is best for Ethan...always...and we don't enter into any decision lightly.
Whew...so...we have put off another surgery that another doctor wanted to do on June 16th. Every doctor we've ever seen with Ethan has mentioned a muscle biopsy. We now are working with Dr. John Shoffner. He is the director of Medical Neurogenetics, which is a lab that does LOTS of specialty testing. He wants to do a muscle biopsy and a spinal tap on Ethan to see if he can diagnose him. At this time, we are staying active as a patient but have declined surgery for now. Ethan is progressing, so Allen and I aren't in a hurry for a diagnosis. As I type that, I do have to say that this testing IS in Ethan's future. There could be medicine or treatment that would help him, so we don't want to miss out on that. But for now, we are fine with putting off the pain of additional surgeries.
Both boys are very happy. The both clap their hands in response to "yay Colin or yay Ethan!" They both love to smile and laugh. Colin and I look at each other sometimes and just start laughing for no reason. You can see his whole body shake. Ethan's laugh is so different, but it is a wonderful sound. Their smiles and laughter are my VERY favorite part of being a mommy!!
Tuesday, April 27, 2010
In His Grip and By His Grace
I read a fundraiser letter today for Cobb Pregnancy Services. The person ended her letter with "In His Grip and By His Grace." I liked that so I'm using it today to blog about the latest with Ethan. Things are happening fast!
First of all, good news, he weighs 16 pounds 12 ounces (or so). We are on a rigid feeding schedule every 3 hours, but it is working so I'm commited to it for now. I even got us up at 4 this morning so we don't have to skip a feeding today because of a doctor appointment. Yawn...but EVERYONE tells us the more Ethan weighs, the stronger he will get. Come on 17 pounds!! That was the goal for him by 9 months, and that deadline is fast approaching us on Friday!
We did see Dr. Williams last week. He is putting Ethan in a STARband helmet. You can see some amazing, sweet pictures at http://www.starbandkids.com/. Some of the before and after pictures in the documentation makes me realize just how much this will help Ethan. His head shape is so OFF because of him laying on his side so much to eat. And that fights with his torticollis because he now has a flat spot and that is where his head automatically falls unless he is "on" and is holding it a different way. Unless we position him just right, he sleeps on that flat spot...which just makes the head shape, neck muscles and possibility of surgery worse. We DO have surgery scheduled for the middle of June. However, his therapist is really excited about getting him in his "motorcycle helmet" and seeing what we can accomplish between now and then. The doctor is fine with cancelling surgery if it isn't needed. He would prefer that, too!
This is a picture of something similar to what Ethan will be wearing. My first thought when I saw this is "ast least the little boy doesn't look MISERABLE! He will have to wear the helmet all day, every day except for maybe an hour (for bathing and some of his therapy). Please pray for God's grace for little Ethan (and for us). He has to sleep, eat, watch t.v., play in this helmet and his neck muscles are NOT strong enough yet for him to hold his head up. He is going to have quite an adjustment! The therapist says this will help strengthen his neck, but he already works so hard...I'm just a sad Mommy today thinking about this next phase. Glad they have this kind of thing to help, but sad nevertheless...
In His Grip and By His Grace...we can do this!
We did get the boys' hair cut on Saturday. Jerry Potts from Bass Hair Salon made a house call and trimmed their hair. They both did really well. Colin had less patience and really just wanted to know what Jerry was doing. When we held his head still, he got "sad Colin face" so we only trimmed around his ears. We owe a huge thanks to Jerry for helping us out!
Tuesday, April 20, 2010
No news = good news!
There really hasn't been much new to report...and I am thankful!
Colin is growing, growing...and is really wanting to crawl. He gets on his hands and knees and rocks...then does a belly flop and "swims." Allen and I can't wait to get him in the pool and let him splish-splash! He surprised us both this weekend by yelling out his first word. Mama! Allen and I are both shocked...everyone said they would say "da da" first and they've both said "ma ma" first! I am working with them both so they will hurry up and add "da da" to their words!!
Ethan is, well, Ethan. He has a head FULL of hair. We are trying to figure out someone that can come here and give them both a trim (nothing drastic, just really to shape it up so they don't look scraggly). He jabbers and has the sweet, soft voice. When he says "ma ma" it is hard to get anything else done but just talk back to him...and smile lots! He is still very unpredictable with the throwing up, but he is ssslllooowwwlllyyy gaining weight. It seems like he was stuck at 15 pounds 12 ounces for days. Now the number is 16 pounds 3 ounces. We are taking him to the cranial-facial doctor Thursday. He should look at Ethan's head shape and his torticollis and make some recommendations on treatment. His physical therapist feels sure they are going to recommend a helmet. All I can think is "what else can this child take?" I am so thankful that God's grace is sufficient. I don't know how much more this mommy can take! He has made some GREAT strides with his torticollis in the past few weeks, so I am really hoping to avoid any extreme treatment (like surgery or a brace) for that.
So things are probably just pretty "normal" for us right now. And that is a good thing!
Colin is growing, growing...and is really wanting to crawl. He gets on his hands and knees and rocks...then does a belly flop and "swims." Allen and I can't wait to get him in the pool and let him splish-splash! He surprised us both this weekend by yelling out his first word. Mama! Allen and I are both shocked...everyone said they would say "da da" first and they've both said "ma ma" first! I am working with them both so they will hurry up and add "da da" to their words!!
Ethan is, well, Ethan. He has a head FULL of hair. We are trying to figure out someone that can come here and give them both a trim (nothing drastic, just really to shape it up so they don't look scraggly). He jabbers and has the sweet, soft voice. When he says "ma ma" it is hard to get anything else done but just talk back to him...and smile lots! He is still very unpredictable with the throwing up, but he is ssslllooowwwlllyyy gaining weight. It seems like he was stuck at 15 pounds 12 ounces for days. Now the number is 16 pounds 3 ounces. We are taking him to the cranial-facial doctor Thursday. He should look at Ethan's head shape and his torticollis and make some recommendations on treatment. His physical therapist feels sure they are going to recommend a helmet. All I can think is "what else can this child take?" I am so thankful that God's grace is sufficient. I don't know how much more this mommy can take! He has made some GREAT strides with his torticollis in the past few weeks, so I am really hoping to avoid any extreme treatment (like surgery or a brace) for that.
So things are probably just pretty "normal" for us right now. And that is a good thing!
Tuesday, April 6, 2010
The doctor said "I don't know why you are here!"
I took Ethan to see Dr. Rastegar, a cardiologist at Sibley Heart Center, today. We were referred to him by Ethan's pediatrician AND his pulmonologist. They wanted to make sure his pectus (sunken chest) wasn't affecting his heart (and lungs, but we won't know that until later).
We walked (Ethan strolled) into the office. It was so calm and quiet - there were only two other families in the waiting room. We were called back and the nurses took Ethan's history, blood pressure, measured the oxygen in his blood, did an EKG and weighed him. They were both ssooooo sweet!
They put us in Room 1. 30 seconds later, Dr. Rastegar came in and said "I don't know why you are here!" I had NEVER heard such sweet words in one of Ethan's doctors' offices before! He does want to do an echocardiogram in a year just to make sure everything is still good. But...he said "Ethan's heart is perfectly normal. His heart rate is good, blood pressure is normal...there is nothing I can do for you."
I came home and wrote the office a thank you note. It was such a pleasure to be in an office full of warm, caring, CALM people...and to know they won't be one of our regular offices! I was almost sad!!
Colin is really growing. He is sitting up and playing as I am writing this. If he topples over, he just rolls onto his tummy and keeps playing. He has been really vocal the last few days...still just babbling, but I think full sentences are coming soon! HAHA!
.jpg)
Ethan is in his Nap Nanny next to me on the sofa. He just finished eating about 30 minutes ago, so still has a little "quiet time" before I get him up to play. We changed his formula this week and I think we are seeing some improvement. He is still throwing up, but not as often and not as much. As I started typing that, he spit up a little, but I will take it!
We walked (Ethan strolled) into the office. It was so calm and quiet - there were only two other families in the waiting room. We were called back and the nurses took Ethan's history, blood pressure, measured the oxygen in his blood, did an EKG and weighed him. They were both ssooooo sweet!
They put us in Room 1. 30 seconds later, Dr. Rastegar came in and said "I don't know why you are here!" I had NEVER heard such sweet words in one of Ethan's doctors' offices before! He does want to do an echocardiogram in a year just to make sure everything is still good. But...he said "Ethan's heart is perfectly normal. His heart rate is good, blood pressure is normal...there is nothing I can do for you."
I came home and wrote the office a thank you note. It was such a pleasure to be in an office full of warm, caring, CALM people...and to know they won't be one of our regular offices! I was almost sad!!
Colin is really growing. He is sitting up and playing as I am writing this. If he topples over, he just rolls onto his tummy and keeps playing. He has been really vocal the last few days...still just babbling, but I think full sentences are coming soon! HAHA!
.jpg)
Ethan is in his Nap Nanny next to me on the sofa. He just finished eating about 30 minutes ago, so still has a little "quiet time" before I get him up to play. We changed his formula this week and I think we are seeing some improvement. He is still throwing up, but not as often and not as much. As I started typing that, he spit up a little, but I will take it!
Sunday, March 21, 2010
Everything I know, I've learned by being a Mom
Seriously, I think I am pretty smart. Mom and Dad did a great job...I think I have a good balance of book knowledge, people skills and common sense. I say all of that without pride...because all of a sudden, I wonder where all of those "smarts" went?!?!
When it comes to being a mother, I have a lot to learn. For instance...today we took Colin and Ethan to have their Spring/Easter pictures made. I took a ton of stuff...toys, changes of clothes, Easter baskets, etc. The reality is...we had about 10 minutes of "good" time...but not the same 10 minutes for either baby! When the photographer first starting shooting, Colin was smiling and talking. Ethan had his serious face on wondering "where the heck am I and what is going on?" Then about the time Ethan got comfortable enough to smile, Colin went into FULL meltdown. Tears streaming down his face and everything!
Turns out, he was STARVING. This mother had forgotten to check the schedule before we left or I would've KNOWN he needed to eat BEFORE we left!! Oh well...in the end, we got some cute shots. My biggest SAD for the day is that we didn't get one of both boys smiling at the same time. At least now I have a goal...it is good to have goals, right? Maybe when the boys are, what...8?, I can get a picture where they are both smiling? Just promise them an ice cream or new game? Can't do that with 7-1/2 month olds!! Boy do I have a lot to learn!!
When it comes to being a mother, I have a lot to learn. For instance...today we took Colin and Ethan to have their Spring/Easter pictures made. I took a ton of stuff...toys, changes of clothes, Easter baskets, etc. The reality is...we had about 10 minutes of "good" time...but not the same 10 minutes for either baby! When the photographer first starting shooting, Colin was smiling and talking. Ethan had his serious face on wondering "where the heck am I and what is going on?" Then about the time Ethan got comfortable enough to smile, Colin went into FULL meltdown. Tears streaming down his face and everything!
Turns out, he was STARVING. This mother had forgotten to check the schedule before we left or I would've KNOWN he needed to eat BEFORE we left!! Oh well...in the end, we got some cute shots. My biggest SAD for the day is that we didn't get one of both boys smiling at the same time. At least now I have a goal...it is good to have goals, right? Maybe when the boys are, what...8?, I can get a picture where they are both smiling? Just promise them an ice cream or new game? Can't do that with 7-1/2 month olds!! Boy do I have a lot to learn!!
Friday, March 12, 2010
It's a "good" Friday!
No, it isn't Good Friday yet...but my dad always says "every Friday is good." Today has been a really good day for me in some ways...and sad, too. I always like to talk about the bad news first and end with the good news (Mom, did you teach me that?). It has rained most of today and I am thankful for the rain. But I have been sad today...missing sweet Julia. I can even hear her voice in my memories and just wish it were out loud and she was sitting right here with me! I guess that is what grief is but today caught me off guard. I wasn't expecting to just feel so sad. I think maybe I just wish she could see (and I guess she does KNOW) the boys - how much they are growing and how good they are doing!
Colin is watching me type. He is in his exersaucer and pretty much "done" with it and wishing for my attention. Give me a few more minutes, pumpkin! He is almost 20 pounds and is really trying hard to sit up on his own. He does pretty good until something distracts him and then he just falls right over! He is also wanting to be on the move. When he has tummy-time, he gets his arms and legs going and I just KNOW that as soon as he figures out crawling, there will be no stopping him!! He has always had this wonderful really big smile that lights up his whole face. I hope he ALWAYS has that great smile...and lots of reasons to use it!!
Ethan is on day 9 of having a g-tube (a tube in his tummy instead of his nose) for his feedings. The throw-ups are still happening, but less often and if they do happen they are (most of the time) not as much. That is so great! We weighed him today and he is 16 pounds. I'm really excited about that because it means he has gained in spite of all of the throw-ups. He is still sleeping A LOT, but I am hoping that is just because he isn't getting all of his calories and/or maybe just doing some serious growing! He is strong enough now that he reaches and grabs his toes on his own. And hallelujah, he has even started SUCKING his thumb and chomping on his pacifier. He still doesn't really want any formula in his mouth, but the sucking and chomping are really good progress for a week! More, Lord...please!! He has lots to smile about too...I think he is REALLY glad to have the tube out of his nose and throat and the tape off his face. He seems to be talking more and his voice is stronger, too. These are all great things and I am so thankful!!
Colin is watching me type. He is in his exersaucer and pretty much "done" with it and wishing for my attention. Give me a few more minutes, pumpkin! He is almost 20 pounds and is really trying hard to sit up on his own. He does pretty good until something distracts him and then he just falls right over! He is also wanting to be on the move. When he has tummy-time, he gets his arms and legs going and I just KNOW that as soon as he figures out crawling, there will be no stopping him!! He has always had this wonderful really big smile that lights up his whole face. I hope he ALWAYS has that great smile...and lots of reasons to use it!!
Saturday, March 6, 2010
Ethan has no more tape on his face!
Ethan had surgery on Wednesday, March 3 to have a g-tube (PEG) put in his tummy. He is quite our little trooper. The anesthesiologist was very concerned about Ethan's low tone and how he would react to being put to sleep. She warned us that he might have to be on a ventilator and/or oxygen if he was slow to start breathing on his own. I think that took all of my focus off the negatives of the procedure itself - all I was focused on was him waking up and breathing on his own!
She came in and said "he did perfect!" He had zero problems and I was so relieved! It was a while before we could see him. They kept waffling from bringing him back to his pre-op room or waiting for us to see him when they got him to a room. Thankfully they brought him to us in pre-op and he looked so good! I pulled his little (purple, much to Allen's dismay) gown up and looked at the PEG...it wasn't NEARLY as "bad" as I was expecting. I was sssooooo relieved. It does stick up a bit more than I was expecting. They equate it to getting an ear pierced - the skin around the tube will heal and it won't hurt him at all. Right now, it is still pretty tender and hard to clean, but we are doing our best to follow instructions to avoid anything gross.
We ended up on the surgical floor and not on the G.I. floor. I was disappointed because Shana Owen was working and even if she wasn't our nurse I knew I could count on her help. However, I have to say that we have 3 really wonderful nurses. The first nurse was my least favorite and she was still great. Because of Ethan's neck problems, when he was laying in his crib he was facing the wall away from us. We got permission to turn him around and it was so much better! He could see us from his bed and I think he felt better. I felt better because I didn't constantly have to stand next to his bed! The night nurse and the nurse we had Thursday were just awesome! They were pleased with how well I was doing with the g-tube. Apparently, LOTS of parents have regrets and don't want to handle the tube. I am not like that. I wanted to learn and do as much as possible so I don't have any surprises here at home!
Things are going well. Ethan doesn't really seem to have any pain. He is tender when I have to move it to change his diaper or clean around it, but he still doesn't cry. The hardest part now is that he is not getting nearly the amount of calories he needs. We have to build back up to the quantity...but the main thing is for him to manage his feeds (or not throw up). He went for almost 24 hours without throwing up but then had a really bad episode after his 1 o'clock feeding this afternoon. He is eating now and I am on pins and needles although I laugh at myself for being so anxious. He either will or he won't, right?! He has thrown up so much...I just hate him having to go through this.
The best part is being able to see his whole face and his sweet smile with no tape! This picture was taken Wednesay afternoon after surgery. He was being really cute!
She came in and said "he did perfect!" He had zero problems and I was so relieved! It was a while before we could see him. They kept waffling from bringing him back to his pre-op room or waiting for us to see him when they got him to a room. Thankfully they brought him to us in pre-op and he looked so good! I pulled his little (purple, much to Allen's dismay) gown up and looked at the PEG...it wasn't NEARLY as "bad" as I was expecting. I was sssooooo relieved. It does stick up a bit more than I was expecting. They equate it to getting an ear pierced - the skin around the tube will heal and it won't hurt him at all. Right now, it is still pretty tender and hard to clean, but we are doing our best to follow instructions to avoid anything gross.
We ended up on the surgical floor and not on the G.I. floor. I was disappointed because Shana Owen was working and even if she wasn't our nurse I knew I could count on her help. However, I have to say that we have 3 really wonderful nurses. The first nurse was my least favorite and she was still great. Because of Ethan's neck problems, when he was laying in his crib he was facing the wall away from us. We got permission to turn him around and it was so much better! He could see us from his bed and I think he felt better. I felt better because I didn't constantly have to stand next to his bed! The night nurse and the nurse we had Thursday were just awesome! They were pleased with how well I was doing with the g-tube. Apparently, LOTS of parents have regrets and don't want to handle the tube. I am not like that. I wanted to learn and do as much as possible so I don't have any surprises here at home!
Things are going well. Ethan doesn't really seem to have any pain. He is tender when I have to move it to change his diaper or clean around it, but he still doesn't cry. The hardest part now is that he is not getting nearly the amount of calories he needs. We have to build back up to the quantity...but the main thing is for him to manage his feeds (or not throw up). He went for almost 24 hours without throwing up but then had a really bad episode after his 1 o'clock feeding this afternoon. He is eating now and I am on pins and needles although I laugh at myself for being so anxious. He either will or he won't, right?! He has thrown up so much...I just hate him having to go through this.
The best part is being able to see his whole face and his sweet smile with no tape! This picture was taken Wednesay afternoon after surgery. He was being really cute!
Sunday, February 28, 2010
Ethan is getting rid of his NG-tube, but at what cost?
I've been saying for months that I can't wait for Ethan to be DONE with the ng-tube. Well, I'm getting my wish...but not really. On Wednesday, his G.I. doctor and a surgeon are going to put a G-tube into his stomach. Allen and I did NOT make this decision lightly. Ethan has beautiful clear skin and the last thing I want to do is put a "boo-boo" on him that will leave a scar. Mom told him the other night "you are going to have two belly-buttons" and that just makes me sad.
The deciding factor last week was that his G.I. doctor, his regular pediatrician AND his speech (feeding) therapist all agree that Ethan probably will make better progress eating by mouth if he doesn't have the tube on his face or down his throat. All also agree that getting rid of the oral aversion will most likely be a long, slow process. So my idea of taking out the ng-tube this weekend and "getting him really hungry" wasn't a really popular idea with anyone. We certainly don't want to take the chance of dehydrating him three days before surgery.
Allen and I also read a lot of parent blogs about similar situations. Most agreed that the positives outweigh the negatives of having a g-tube put in. The postives for me are no more tape on his face, no more risking putting in a new tube and scratching his throat, no more watching him spend so much of his awake-time swiping at the tube and tape, not having to answer questions from strangers, being more mobile (we SHOULD be able to feed him faster and easier with the larger tube), and the best thing is that we SHOULD be able to hold him while he eats now. For months we've had to put him in the nap nanny or prop him up on a pillow and watch him eat. The negatives are...well, the anesthesia is probably the biggest concern at this point. The anethesia people really reacted badly to Ethan having low tone. The almost worst case is that he has a bad reaction to the anesthesia and they have to reverse it or keep him on the ventilator and/or oxygen longer than just for surgery. Ethan will be in pain for a few days. While he is in the hospital, he will be getting morphine and then he comes home on Tylenol 3. Pretty strong medicine for a 7 month old. I guess for Mommy, the worst lasting thing is that there will be a hole in my baby's tummy with a tube the size of a McDonald's straw hanging out of him. It will be hidden in his clothes, but it will be there and we will know it. Oh, and another negative that remains to be seen...a lot of times reflux gets WORSE before it gets better with the surgery. I am holding onto the hope that eventually getting the tube out of his throat (and tickling his gag-reflex and holding everything open) will allow the reflux to get better.
I am so grateful that there are options. I keep trying to reason with Ethan. "If you will just eat from a bottle, WE won't have to go through this surgery." So far, he is still resisting. I love his stubborness and I hate it at the same time. I think Ethan has come so very far with his strength and development...further than I thought he would be at 7 months in a way. So I am glad he is stubborn and fighting for that. From the very first time I heard the words "oral aversion," I was told "you don't want that." They were right. I don't want that at all. I still remember the first time Allen got Ethan to suck on his pacifier in the NICU. And the first time he finished a bottle. Those were sweet milestones for a baby that had no suck reflex when he was first born! Now we just need for him to remember how to suck, to want to eat, to swallow like he is supposed to...well, you get the idea.
I got sad today about something kind of trivial. I was taking video of Colin in his new jumpy-toy and thinking I wish I could take video of Ethan in this thing. Then is dawned on me that Colin gets the pictures and videos of his milestones...and Ethan gets blogged about.
So to say a few words about Colin...he is doing so great. We switched his schedule around yesterday and he took it like a champ. He went to bed at 7:30 last night and I had to wake him up at 7 this morning. We were late tonight getting him in bed because of baths, but he went right to sleep. He loves solid foods and actually I think would rather EAT than DRINK now. His favorite combination today was oatmeal, mashed avocado and mashed banana. He even squealed a couple of times during that meal! Oh, and he got to go with Daddy twice today to run errands. He was so cute but came back both times passed out in his car seat. He takes after Mommy that way...I love sleeping in the car!
The deciding factor last week was that his G.I. doctor, his regular pediatrician AND his speech (feeding) therapist all agree that Ethan probably will make better progress eating by mouth if he doesn't have the tube on his face or down his throat. All also agree that getting rid of the oral aversion will most likely be a long, slow process. So my idea of taking out the ng-tube this weekend and "getting him really hungry" wasn't a really popular idea with anyone. We certainly don't want to take the chance of dehydrating him three days before surgery.
Allen and I also read a lot of parent blogs about similar situations. Most agreed that the positives outweigh the negatives of having a g-tube put in. The postives for me are no more tape on his face, no more risking putting in a new tube and scratching his throat, no more watching him spend so much of his awake-time swiping at the tube and tape, not having to answer questions from strangers, being more mobile (we SHOULD be able to feed him faster and easier with the larger tube), and the best thing is that we SHOULD be able to hold him while he eats now. For months we've had to put him in the nap nanny or prop him up on a pillow and watch him eat. The negatives are...well, the anesthesia is probably the biggest concern at this point. The anethesia people really reacted badly to Ethan having low tone. The almost worst case is that he has a bad reaction to the anesthesia and they have to reverse it or keep him on the ventilator and/or oxygen longer than just for surgery. Ethan will be in pain for a few days. While he is in the hospital, he will be getting morphine and then he comes home on Tylenol 3. Pretty strong medicine for a 7 month old. I guess for Mommy, the worst lasting thing is that there will be a hole in my baby's tummy with a tube the size of a McDonald's straw hanging out of him. It will be hidden in his clothes, but it will be there and we will know it. Oh, and another negative that remains to be seen...a lot of times reflux gets WORSE before it gets better with the surgery. I am holding onto the hope that eventually getting the tube out of his throat (and tickling his gag-reflex and holding everything open) will allow the reflux to get better.
I am so grateful that there are options. I keep trying to reason with Ethan. "If you will just eat from a bottle, WE won't have to go through this surgery." So far, he is still resisting. I love his stubborness and I hate it at the same time. I think Ethan has come so very far with his strength and development...further than I thought he would be at 7 months in a way. So I am glad he is stubborn and fighting for that. From the very first time I heard the words "oral aversion," I was told "you don't want that." They were right. I don't want that at all. I still remember the first time Allen got Ethan to suck on his pacifier in the NICU. And the first time he finished a bottle. Those were sweet milestones for a baby that had no suck reflex when he was first born! Now we just need for him to remember how to suck, to want to eat, to swallow like he is supposed to...well, you get the idea.
I got sad today about something kind of trivial. I was taking video of Colin in his new jumpy-toy and thinking I wish I could take video of Ethan in this thing. Then is dawned on me that Colin gets the pictures and videos of his milestones...and Ethan gets blogged about.
So to say a few words about Colin...he is doing so great. We switched his schedule around yesterday and he took it like a champ. He went to bed at 7:30 last night and I had to wake him up at 7 this morning. We were late tonight getting him in bed because of baths, but he went right to sleep. He loves solid foods and actually I think would rather EAT than DRINK now. His favorite combination today was oatmeal, mashed avocado and mashed banana. He even squealed a couple of times during that meal! Oh, and he got to go with Daddy twice today to run errands. He was so cute but came back both times passed out in his car seat. He takes after Mommy that way...I love sleeping in the car!
Saturday, February 20, 2010
The Second Trimester - Pregnant with Twins
So, as promised, about week 14 of my pregnancy the morning sickness (or afternoon/evening sickness for me) finally eased up. I did continue to have some nausea, but no longer the kind that made me come home and glue myself to the couch and try not to move! It is making me sad that I didn't journal along the way because I know there are so many details I'll never get back. Some events are permanently stuck in my memory. Some time around 12:30 a.m. on Monday, March 16, my heart went into AFib. Atrial fibrillation is an abnormal heartbeat - some slow beats and some racing. Overall, my heartrate is very fast. I was diagnosed in 1994 and the cardiologist had released me since I don't have any structural reason for the AFib nor does medicine prevent epidsodes. Until March 16, I've always worked, slept, even exercised through my episodes and eventually they resolve on their own. About two hours into this particular episode, I started worrying that it might affect bloodflow to the boys. I called my OB-on-call and she said "AFib is EXTREMELY dangerous and you need to get to the ER right away." I thought she meant for the babies, so we went racing to the ER. Since the babies were only 16 weeks, they wouldn't monitor them AND THAT IS WHY I WENT! The cardiologist came in and they tried several different "safe" medicines to try to regulate my heartbeat. Nothing helped. They admitted me to the telemetry floor (I think) for monitoring and for administering some different medications that I thought the doctor told me I didn't have to have. The worst part was that they wouldn't let me eat. 16 weeks pregnant and not even a drop of water. ARRGGHHH!! I was on I.V. fluids, but I can promise you they don't help pregnancy hunger! My "new" cardiologist, Dr. Egoavil, came in later that morning. He discussed my options with Allen and me...and scared the poop out of me. Apparently AFib IS dangerous...for ME! I always knew it put me at risk for having a stroke, but have assumed that since it resolved on its own that I was OK. NOT. Ultimately, they ended up doing a cardio-conversion on me. Basically that means shocking my heart back into regular heartrate submission. Thankfully they did give me the quick-on/quick-off anesthia and they DID monitor the boys heartrates right before and right after the procedure. In fact, I woke up to the words "your babies heartrates are normal." We will always wonder what effect the procedure had on the boys. I have to trust that, if any, it was short-lived and not serious. Also, as soon as I woke up, I heard the BOM-BOM...BOM-BOM of my heart at 88 beats per minute instead of 190!! After pregnancy, I now have a "rescue" medicine that I take as soon as my heart gets out of rhythm. My episode last Saturday only lasted 4 hours instead of 24 to 36!! YAY! Thankfully, I only had one episode while pregnant. They normally happen about every 5 to 6 months and I am now back under the care of a cardiologist (since I'm OLDER...ugh!).
The rest of my second trimester was fairly uneventful. I do remember thinking at about the six month mark that I LOOKED nine months pregnant. Oh well...that feeling was just part of having twins. I think it was during this time that my appetite REALLY picked up. If you know me at all, I normally don't eat a lot. I had trouble eating ENOUGH while pregnant to gain weight AND to get full! Big Mac's and large portion lunches became a part of my regular routine...anything to get enough calories to gain instead of lose weight. The further into my pregnancy I got, the bigger my belly got and the skinnier my arms and legs got! I looked FUNNY towards the end...ALL belly. But that is a story for another trimester!
Monday, February 15, 2010
6 month check-ups
Both boys had their six month check-ups today. Dr. Kim walked in the room and said "I am so happy with Ethan's growth!" That started the visit well...and it really continued. We spent most of the time talking about Ethan and his overall health. From his standpoint, he is happy with what he sees (ears are clear, heart sounds good, etc.). You know, the things the general pediatrician checks. Then we talked about Ethan's torticollis (the muscle in his neck that is knotted and hard, causing him to have restricted movement to his left). I told him we aren't really seeing any improvement with his physical therapy. He gave us the first referal of three...to see a cranial-facial doctor. They have different surgeries and procedures they can do to relieve the muscle. One newer procedure is done endoscopically, so we will go see what they have to say. The sooner we get it fixed, the less of a problem he should have with the shape of his face. Then we talked about his lack of strength in his legs. Eventually, we will probably see an orthopedist (second "eventual" referal) to talk about some braces or options for strengthening his legs. However, he was encouraging about what Ethan is already doing - stretching his legs out straight and holding them up. He just tends to get "frog-leggy" and lazy...and that is the concern for his development later on (for crawling, walking etc.). It can also cause problems with his hips. The third referal was to a cardiologist. I felt like this one was coming and kind of wonder why we haven't seen one yet (we've seen just about every other kind!). Ethan has a pectus, or an indention in his chest. Dr. Kim (and mommy and daddy) want some assurance that this isn't causing any restrictions on his heart or lungs.
So some of the things we talked about today are potentially "scary," but I think it will be good to get the experts' opinions...and hopefully we can rule out or take care of any problems before they become REAL problems.
Colin is just doing great. His only "problem" is his eczema. So far, we've had good results using a combination of a prescription creme and Aquaphor. He is sitting up unassisted although still wobbly. He is also doing really well sleeping, finally. He is eating solids and loves his new Yummy Spoonfuls green peas. Someone put on Facebook "he likes them for now!" I'm hoping both boys will just be good eaters of a variety of fruits and vegetables. I am not sure I can bring myself to feed them baby food meat, so who knows about THAT part of eating! We'll figure something out!
So some of the things we talked about today are potentially "scary," but I think it will be good to get the experts' opinions...and hopefully we can rule out or take care of any problems before they become REAL problems.
Colin is just doing great. His only "problem" is his eczema. So far, we've had good results using a combination of a prescription creme and Aquaphor. He is sitting up unassisted although still wobbly. He is also doing really well sleeping, finally. He is eating solids and loves his new Yummy Spoonfuls green peas. Someone put on Facebook "he likes them for now!" I'm hoping both boys will just be good eaters of a variety of fruits and vegetables. I am not sure I can bring myself to feed them baby food meat, so who knows about THAT part of eating! We'll figure something out!
Wednesday, February 10, 2010
The first trimester - pregnant with twins
After the three different blood tests confirmed pregnancy, the next step was an ultrasound to make sure things were physically progressing correctly. We saw a new doctor at the specialist. He was NOT our favorite doctor. He did show us two "black holes" that were the developing babies. He told us he didn't see heartbeats and I about cried...THEN he said "well, I guess it is a little soon." Oh the emotional ups and downs!
On Christmas morning, I woke up about 3:30 a.m. Since I was awake, I went the the restroom. I discovered some bleeding and really had my first moment of absolute panic. I woke Allen up and we talked about it for a few minute. I don't think I went back to sleep at all, but I think by morning it had stopped. I remembered being REALLY sleepy at Allen's Mom's Christmas breakfast...and later my sister-in-law, Nicole, would admit that she wondered if I was pregnant. I couldn't keep my eyes open!
The fertility specialist wanted to do one more ultrasound in early January, but I decided, for insurance and emotional purposes, to see my regular OB (Dr. Bardwell). Allen and I went to the appointment and Dena did the ultrasound and confirmed twins and that everything looked normal. I think we did see heartbeats that day. The very next morning at work, I went to the restroom and discovered I was bleeding. I would say "spotting" but it was, in my opinion, more serious than that. I called Dr. B's office and was told to come in. Dena immediately got me back and Kim Long came in to confirm...I had a Subchorionic Hematoma. Kim basically said that it should resolve itself but she did put me on bed rest until the bleeding stopped. Thankfully it did stop that very night. Oh...and Allen couldn't leave work that day, but we got to HEAR heartbeats! I called Allen and he listened over the phone, and Dena recorded it for us. Oh, what sweet, sweet sounds!
I think morning sickness hit in early to mid January. Thankfully, I wasn't sick at all in the mornings. Mine was more late afternoon and evening sickness! It hit like clockwork about 4 p.m. when I was driving home from work. I had no idea that the motion of the car would make a difference in pregnancy sickness, but oh my did it ever make me sick! And I have NEVER been motion sick before! It was bad when I was driving, but much worse if I was riding. I would get home, change clothes, and sit very still on the couch to see if I was going to be able to eat dinner that night.
I was telling someone this week that the ONLY craving I had my entire pregnancy wasn't really even a craving to me. It was more like a preference. I wanted Mexican food...I could eat it for lunch and dinner almost every day! Even if I was sick at night, I could eat Taco Bell tacos. We jokingly nicknamed the boys Paco and Jose.
On Christmas morning, I woke up about 3:30 a.m. Since I was awake, I went the the restroom. I discovered some bleeding and really had my first moment of absolute panic. I woke Allen up and we talked about it for a few minute. I don't think I went back to sleep at all, but I think by morning it had stopped. I remembered being REALLY sleepy at Allen's Mom's Christmas breakfast...and later my sister-in-law, Nicole, would admit that she wondered if I was pregnant. I couldn't keep my eyes open!
The fertility specialist wanted to do one more ultrasound in early January, but I decided, for insurance and emotional purposes, to see my regular OB (Dr. Bardwell). Allen and I went to the appointment and Dena did the ultrasound and confirmed twins and that everything looked normal. I think we did see heartbeats that day. The very next morning at work, I went to the restroom and discovered I was bleeding. I would say "spotting" but it was, in my opinion, more serious than that. I called Dr. B's office and was told to come in. Dena immediately got me back and Kim Long came in to confirm...I had a Subchorionic Hematoma. Kim basically said that it should resolve itself but she did put me on bed rest until the bleeding stopped. Thankfully it did stop that very night. Oh...and Allen couldn't leave work that day, but we got to HEAR heartbeats! I called Allen and he listened over the phone, and Dena recorded it for us. Oh, what sweet, sweet sounds!
I think morning sickness hit in early to mid January. Thankfully, I wasn't sick at all in the mornings. Mine was more late afternoon and evening sickness! It hit like clockwork about 4 p.m. when I was driving home from work. I had no idea that the motion of the car would make a difference in pregnancy sickness, but oh my did it ever make me sick! And I have NEVER been motion sick before! It was bad when I was driving, but much worse if I was riding. I would get home, change clothes, and sit very still on the couch to see if I was going to be able to eat dinner that night.
I was telling someone this week that the ONLY craving I had my entire pregnancy wasn't really even a craving to me. It was more like a preference. I wanted Mexican food...I could eat it for lunch and dinner almost every day! Even if I was sick at night, I could eat Taco Bell tacos. We jokingly nicknamed the boys Paco and Jose.
We have a nanny!
When it came time for me to go back to work, Allen and I knew what we wanted to do...that was to have someone come to the house and stay with the boys. The original plan was to take them to day care. With Ethan's issues, day care wasn't really an option. Our whole goal with him is to keep him as healthy as possible. That is the main reason we have stayed so isolated from family events, church, etc. I know lots of people are still wanting to meet the boys...and I promise it WILL happen eventually. For now, isolation is our game and health is our goal.
So mid-December, I was in complete denial about needing a sitter or nanny. I guess I thought we might win the lottery and Allen and I could both just stay home and enjoy every minute with the twins! HA. Allen had to do the initial search and he narrowed it down. There was one applicant that just stood out. I won't lie...I was hesitant but I think that was more me than anything about her (if that makes sense). Her name is Kristi. We interviewed her once and then had her over for a second visit. She is young and energetic and has some really good experience with children.
She started on Monday, February 1 and has done really well so far with the boys. I learned during the month Allen was home with them that things are not always going to be done the way I would do them...but the goal is to get the boys fed, diapers changed, Ethan's exercises, play time, and if most of that gets done every day, then things are pretty darn good. I think we've even seen a benefit of having a third adult that is responsible for the boys...she brings a new perspective to daily life. The boys are her job...and she is handling it very well.
While I am not 100% happy to be at work (and neither is Allen), we are relaxed about leaving them with Kristi and know that they are in good hands. Meanwhile, Allen and I are still playing the lottery ;-)
So mid-December, I was in complete denial about needing a sitter or nanny. I guess I thought we might win the lottery and Allen and I could both just stay home and enjoy every minute with the twins! HA. Allen had to do the initial search and he narrowed it down. There was one applicant that just stood out. I won't lie...I was hesitant but I think that was more me than anything about her (if that makes sense). Her name is Kristi. We interviewed her once and then had her over for a second visit. She is young and energetic and has some really good experience with children.
She started on Monday, February 1 and has done really well so far with the boys. I learned during the month Allen was home with them that things are not always going to be done the way I would do them...but the goal is to get the boys fed, diapers changed, Ethan's exercises, play time, and if most of that gets done every day, then things are pretty darn good. I think we've even seen a benefit of having a third adult that is responsible for the boys...she brings a new perspective to daily life. The boys are her job...and she is handling it very well.
While I am not 100% happy to be at work (and neither is Allen), we are relaxed about leaving them with Kristi and know that they are in good hands. Meanwhile, Allen and I are still playing the lottery ;-)
Friday, February 5, 2010
Colin wants a turn
So I've been updating on Ethan's issues. Colin told me today (hehehe) that he wants a turn. We went to see Dr. Dobo at Marietta Dermatology about his eczema. He said it wasn't that bad of a case (he's seen much worse) but infant eczema is tricky to treat because of limited options. He agreed with me to stay away from steroid treatment if possible, so that will be our last option. He gave us a prescription for a new lotion that is safe for infants called Epiceram. Even the copay is YIKES expensive so I have really high hopes for it! We are supposed to use it twice a day and then use Aquaphor at the other diaper changes. So far, we are seeing some fairly clear skin. He still scratches a lot and of course HATES having his nails clipped (and it doesn't help to wait until he is asleep...he is just as resistant then!).
I started him on rice cereal last week and then read that it can cause constipation, which he does NOT need help with, so I did the requisite 5 days then switched to oatmeal. He absolutely slurps it off the spoon (hasn't QUITE gotten the open the mouth wide thing yet). He totally gets the eating thing and it is SO cute!
I started him on rice cereal last week and then read that it can cause constipation, which he does NOT need help with, so I did the requisite 5 days then switched to oatmeal. He absolutely slurps it off the spoon (hasn't QUITE gotten the open the mouth wide thing yet). He totally gets the eating thing and it is SO cute!
Ethan and eating
Melissa the speech therapist just left. She brought several ideas today and they seemed to work. The first thing she did was use this tiny little vibrating tool around and then in his mouth. He is teething so he REALLY liked it. Then she put some Just Pears puree on the end and he smacked his lips around that! I tried giving him a bottle and he didn't scream but neither did he suck. So I guess two steps forward and one back for today...but progress. She was happy with how he did today and that is good news.
Thursday, February 4, 2010
Update on Ethan - swallow test
We took Ethan for his repeat swallow test last Friday, January 29. This was to see if he can have regular (thin) formula in a bottle. We got him situated in the chair and he was happy and talking. Then we had to WAIT for 20 minutes for the doctor and by then, he was not longer happy. When the therapist tried putting the bottle in his mouth he just started crying. She literally had to put formula in his mouth and force him jaw to make the motions to swallow. They did record maybe 3 swallows and the good news was that he didn't aspirate. The bad news is they didn't really see enough to discharge him. We are working with his regular Speech Therapist to try to get him to "have a good food experience in his mouth." I am NOT excited because we have to repeat the swallow test down the road when he will actively take formula...the little guy has had so many x-rays, I think sometimes he might glow in the dark.
So you PRAY-ERS, please pray against oral aversion and the hypersensitivity in his mouth (I felt of his gums this afternoon to see if any teeth were popping through, he gagged and threw up).
The next few weeks are full of doctor appointments. All of his doctors (pediatrician, neurologist, geneticist, G.I., pulmonologist, ENT and eye doctor) wanted to see him at 6 months. We did get GOOD NEWS from his eye doctor today...the immaturity he saw in Ethan's eyes at 5 weeks has matured and his eyes are "normal" with the exception of his bottom eyelashes grow in towards his eyeballs instead of out. Good grief! So far, the recurring theme is that most of his issues are things "he will grow out of." BOY, are Allen and I ready for that day!!
So you PRAY-ERS, please pray against oral aversion and the hypersensitivity in his mouth (I felt of his gums this afternoon to see if any teeth were popping through, he gagged and threw up).
The next few weeks are full of doctor appointments. All of his doctors (pediatrician, neurologist, geneticist, G.I., pulmonologist, ENT and eye doctor) wanted to see him at 6 months. We did get GOOD NEWS from his eye doctor today...the immaturity he saw in Ethan's eyes at 5 weeks has matured and his eyes are "normal" with the exception of his bottom eyelashes grow in towards his eyeballs instead of out. Good grief! So far, the recurring theme is that most of his issues are things "he will grow out of." BOY, are Allen and I ready for that day!!
Monday, January 25, 2010
Making the announcement - February 2009
I so wish that I had started journaling during my pregnancy…maybe even before. It is hard to remember the order of everything that happened. I’m still going to try to tell the stories because I want the boys to have it so they will know how very much we wanted them…and what we went through to get them here (and honestly, to keep them here)!
So once we found out that we were officially pregnant, I wanted to shout it from the rooftops. I knew, however, that wasn’t the best idea. I was very NEW pregnant, and with what I would learn is called a “clinical” pregnancy. Plus, stuff just happens. Allen and I agreed to wait until I was twelve weeks before making the news public. We knew we had to tell our parents, but we just wanted to make sure things were good before announcing to everyone.
Our parents KNEW we had done the invitro cycle. Mom especially drove me crazy. “When are you going for your pregnancy test?” was the question asked lots! I finally told her we would be able to tell them something by Christmas. Once we heard we had to take all three of the blood tests for confirmation, we wanted to just be sure.
Christmas 2008 was on a Thursday. On the Tuesday night before, Mom and Dad came over for dinner. After dinner, we were sitting in the living room. I had finally, just for grins and giggles, done the home pregnancy test. I bought the one that actually said the word “pregnant” so there wouldn’t be any confusion. I handed it to Mom. She looked at it and PROMPTLY started gagging. Sympathy morning sickness? Excitement? Who knows! It was funny, though. We knew Nana Lynn and GrandBob would be excited…and they were. Mom’s phrase she couldn’t wait to share was “first there was one…then there were four!” Camilla had announced not too much before me that she was pregnant and due in May, so there would eventually be Jonah, Edie, Colin and Ethan.
Christmas Day, we had my parents and Allen’s parents over for dinner. I told them “we have some news…I am pregnant…(pregnant, ha, pause here)…with twins! Tommie (Allen’s mom) started crying and wouldn’t/couldn’t stop saying “Really? Really?” I told her after everything we’d been through I certainly wouldn’t be lying about that!!
The rough thing for everyone, except maybe for Allen, was keeping the news a secret. Mom kept talking to my tummy saying “grow babies, GROW!” She wanted me to get big quick so she could tell! Well, she got her wish. We finally agreed she could tell on her birthday which was about a month earlier than we’d hoped. The boys (we wouldn’t learn until later they were both boys) just made their presence known early, much to my clothes’ dismay! I remember the day we told…Mom, Margaret and Terry were in a meeting. I showed up with the ultrasound pictures and interrupted their meeting. I think Margaret’s scream might’ve been heard around the world! Mom called Julia, Biddie and Susanne. When I got back in the car, my phone rang…and it was Julia. I remember her saying “Michelle…you are living your dream!” She and Tom had prayed for me so much about a spouse and family…and it was coming true!
Mom and Dad had Mema and Troy, Kevin, Camilla and Jonah over…I think to celebrate her birthday. I do not remember now the exact dates…we might’ve even told them first…maybe even the weekend before telling everyone else. We were sitting around after dinner. Jonah and I were talking and I said “Jonah, can you say babies?” Before the word “babies” could come out of his mouth, which it did, Camilla’s head whipped around and her eyes got really big. I asked Jonah “can you say ‘Aunt Chelle’ is going to have babies?’” Well…Kevin came over and grabbed me in this really big hug and squeezed me so tight that I finally had to tell him “LET ME GO - I CAN’T BREATHE!” When we finally got to telling the details to my grandparents, I will NEVER forget Mema saying “are you big enough to carry twins?” We got a good laugh over that.
The news spread like wildfire. My way of telling was “I’m pregnant…with twins!” I think back now on the different reactions and how sweet most everyone was…and so excited for us! It is such a blessing to have family and friends that are so supportive. Boy, we didn’t know just how much we would need their support!
So once we found out that we were officially pregnant, I wanted to shout it from the rooftops. I knew, however, that wasn’t the best idea. I was very NEW pregnant, and with what I would learn is called a “clinical” pregnancy. Plus, stuff just happens. Allen and I agreed to wait until I was twelve weeks before making the news public. We knew we had to tell our parents, but we just wanted to make sure things were good before announcing to everyone.
Our parents KNEW we had done the invitro cycle. Mom especially drove me crazy. “When are you going for your pregnancy test?” was the question asked lots! I finally told her we would be able to tell them something by Christmas. Once we heard we had to take all three of the blood tests for confirmation, we wanted to just be sure.
Christmas 2008 was on a Thursday. On the Tuesday night before, Mom and Dad came over for dinner. After dinner, we were sitting in the living room. I had finally, just for grins and giggles, done the home pregnancy test. I bought the one that actually said the word “pregnant” so there wouldn’t be any confusion. I handed it to Mom. She looked at it and PROMPTLY started gagging. Sympathy morning sickness? Excitement? Who knows! It was funny, though. We knew Nana Lynn and GrandBob would be excited…and they were. Mom’s phrase she couldn’t wait to share was “first there was one…then there were four!” Camilla had announced not too much before me that she was pregnant and due in May, so there would eventually be Jonah, Edie, Colin and Ethan.
Christmas Day, we had my parents and Allen’s parents over for dinner. I told them “we have some news…I am pregnant…(pregnant, ha, pause here)…with twins! Tommie (Allen’s mom) started crying and wouldn’t/couldn’t stop saying “Really? Really?” I told her after everything we’d been through I certainly wouldn’t be lying about that!!
The rough thing for everyone, except maybe for Allen, was keeping the news a secret. Mom kept talking to my tummy saying “grow babies, GROW!” She wanted me to get big quick so she could tell! Well, she got her wish. We finally agreed she could tell on her birthday which was about a month earlier than we’d hoped. The boys (we wouldn’t learn until later they were both boys) just made their presence known early, much to my clothes’ dismay! I remember the day we told…Mom, Margaret and Terry were in a meeting. I showed up with the ultrasound pictures and interrupted their meeting. I think Margaret’s scream might’ve been heard around the world! Mom called Julia, Biddie and Susanne. When I got back in the car, my phone rang…and it was Julia. I remember her saying “Michelle…you are living your dream!” She and Tom had prayed for me so much about a spouse and family…and it was coming true!
Mom and Dad had Mema and Troy, Kevin, Camilla and Jonah over…I think to celebrate her birthday. I do not remember now the exact dates…we might’ve even told them first…maybe even the weekend before telling everyone else. We were sitting around after dinner. Jonah and I were talking and I said “Jonah, can you say babies?” Before the word “babies” could come out of his mouth, which it did, Camilla’s head whipped around and her eyes got really big. I asked Jonah “can you say ‘Aunt Chelle’ is going to have babies?’” Well…Kevin came over and grabbed me in this really big hug and squeezed me so tight that I finally had to tell him “LET ME GO - I CAN’T BREATHE!” When we finally got to telling the details to my grandparents, I will NEVER forget Mema saying “are you big enough to carry twins?” We got a good laugh over that.
The news spread like wildfire. My way of telling was “I’m pregnant…with twins!” I think back now on the different reactions and how sweet most everyone was…and so excited for us! It is such a blessing to have family and friends that are so supportive. Boy, we didn’t know just how much we would need their support!
Wednesday, January 20, 2010
Quick Ethan update - Wed 01/20/2010
We liked Ethan's neurologist. She has some ideas and will be reviewing all of his previous tests before deciding what is next. There are still many, many possibilities of what could be causing Ethan's issues. I just keep reminding myself how very well he is doing right now and keep hoping for continued good news.
Tuesday, January 19, 2010
How it all began - December 2008
The boys are almost six months old now. I think, for the first time since they were born, that I feel like I can take a long enough break to tell you our story.
Allen and I got married late, according to some people’s norms. I think God’s timing is perfect! We talked about having children so when I went to see my gynecologist for my annual check-up, I mentioned the situation to him. He said, because of my age, let’s go ahead and do some testing on you and your husband so we don’t waste any time. Test after test later, we were told that we would most likely have to have help to get pregnant. Dr. Bardwell did a couple of procedures in his office with no result of pregnancy. That was in the summer of 2006.
In October of 2006, Allen and I met with a fertility specialist. Dr. Hasty looked at our test results and was encouraging, so we went forward with a cycle of invitro fertilization in December. We were not successful. I was heartbroken. They did transfer an embryo but it didn’t “take.” We talked to a counselor who said that “emotional miscarriage” is very real, so I took lots of time to grieve. Almost nine months to be exact! Allen kept asking me “what are we going to do” and I wouldn’t discuss it until September of 2007. I finally decided I wanted to try again, if Allen was still OK with it. You see, invitro is expensive and we didn’t have insurance coverage for it, so not only was it an emotional decision, but a financial one as well.
We had better results this time! On Monday, December 8, 2008, the doctor transferred two embryos. On Thursday, December 18, we went for our first blood test. I didn’t cheat and take an at-home pregnancy test, but was CRAZY to know! When we got to the appointment for the blood test, the nurse said “Dr. Hasty will call you this afternoon with the results.” WHAT – WE HAD TO WAIT?! So I asked “would you please have them call Allen?” I was going back to work and just didn’t want to get bad news. At 3:00 that afternoon, my cell phone rang and the caller I.D. showed “Dr. Hasty.” I said a bad word then answered the phone. Dr. Hasty said “Michelle, I am so happy that I get to call you with this news…and I am now seeing that I was supposed to call Allen!” I said “oh who cares since the news is good!” She called Allen anyway and then Allen and I talked on the phone. I was afraid to MOVE…didn’t want to do ANYTHING to risk losing the babies. Yes, babies. When Dr. Hasty called, she told us based on the levels that it was very likely that both embryos were still there. THEN we found out we didn’t just have to have one blood test…but 3! Something about it being not a natural pregnancy, they want to make sure the numbers keep going up. So we went back Saturday and then again on Tuesday. The numbers kept climbing so yes, I was officially pregnant!
Allen and I got married late, according to some people’s norms. I think God’s timing is perfect! We talked about having children so when I went to see my gynecologist for my annual check-up, I mentioned the situation to him. He said, because of my age, let’s go ahead and do some testing on you and your husband so we don’t waste any time. Test after test later, we were told that we would most likely have to have help to get pregnant. Dr. Bardwell did a couple of procedures in his office with no result of pregnancy. That was in the summer of 2006.
In October of 2006, Allen and I met with a fertility specialist. Dr. Hasty looked at our test results and was encouraging, so we went forward with a cycle of invitro fertilization in December. We were not successful. I was heartbroken. They did transfer an embryo but it didn’t “take.” We talked to a counselor who said that “emotional miscarriage” is very real, so I took lots of time to grieve. Almost nine months to be exact! Allen kept asking me “what are we going to do” and I wouldn’t discuss it until September of 2007. I finally decided I wanted to try again, if Allen was still OK with it. You see, invitro is expensive and we didn’t have insurance coverage for it, so not only was it an emotional decision, but a financial one as well.
We had better results this time! On Monday, December 8, 2008, the doctor transferred two embryos. On Thursday, December 18, we went for our first blood test. I didn’t cheat and take an at-home pregnancy test, but was CRAZY to know! When we got to the appointment for the blood test, the nurse said “Dr. Hasty will call you this afternoon with the results.” WHAT – WE HAD TO WAIT?! So I asked “would you please have them call Allen?” I was going back to work and just didn’t want to get bad news. At 3:00 that afternoon, my cell phone rang and the caller I.D. showed “Dr. Hasty.” I said a bad word then answered the phone. Dr. Hasty said “Michelle, I am so happy that I get to call you with this news…and I am now seeing that I was supposed to call Allen!” I said “oh who cares since the news is good!” She called Allen anyway and then Allen and I talked on the phone. I was afraid to MOVE…didn’t want to do ANYTHING to risk losing the babies. Yes, babies. When Dr. Hasty called, she told us based on the levels that it was very likely that both embryos were still there. THEN we found out we didn’t just have to have one blood test…but 3! Something about it being not a natural pregnancy, they want to make sure the numbers keep going up. So we went back Saturday and then again on Tuesday. The numbers kept climbing so yes, I was officially pregnant!
Mommy's (Michelle's) update
Allen and I are so thankful for the prayers, food and help that our church family has done for us. We have felt completely supported in so many ways and are even humbled by the number of you that don't really even know us (some not at all) but have been willing to give anyway. Your generosity has been a blessing.
Colin...as Mom says, is doing very well. We think he is "stinking" cute! The skin issue...I keep thinking it COULD be a milk allergy, but am hesitant to change his formula to soy. We all know that internet research can be both good and bad. The 'stuff' I have seen on giving soy to infant boys isn't good...there is a lot of controversy over the amount of estrogen in soy and what that can do to boys during puberty and adulthood. Please pray for wisdom..and a CLEAR, RIGHT answer for his skin. Healing would be the best. Second to that I will take a non-medical cream or new formula or SOMETHING to give him relief. The other problem I have is putting too much cortisone on his skin. It doesn't seem to help all that much and it is a medicine, nothing does to be honest. I don't want to give either of the boys medicine unless it is absolutely necessary.
Ethan...sweet, sweet Ethan! We have made a change in his position while he eats and so far, so good. He still has spit-ups...but the throw-ups are less, even with the tube in the dreaded left nostril. The best news I can give you is that starting this past Saturday (I don't believe in coincidences so if this is when you got Mom's email and started praying, all I can say is YAY!), Ethan has just been showing improvements that Allen and I are so pleased about. We started earlier this month increasing the amount of formula. It is very frustrating because when he was throwing up so much, the first answer was "don't feed him so much." That never seemed to solve the problem and I think that ultimately we just haven't been feeding him enough. He still has times of "where are you Ethan" where he just doesn't seem alert or care to move. But those times are less and the movement and talking and interaction ARE better! His physical therapist said yesterday "a few weeks ago I was really worried about him, but not any more!" She was very pleased at how he is not only holding his head up, but moving it around (even SOME to the left on his own). He is also starting to finally pick up his legs more. He has been moving them back and forth, but only this weekend have we seen him actually lifting his legs off of the ground (or whatever he is on). Last night I grabbed his feet to pick them up and let him "hold his toes." He straightened his legs out strong, lifted up his butt and I could NOT believe how strong he felt!
So keep on keeping on with us...we want you right there with us when we rejoice as we pull the tube out for the last time (Mommy can't WAIT!)! You are precious to us and we thank you from the bottom of our hearts!
Colin...as Mom says, is doing very well. We think he is "stinking" cute! The skin issue...I keep thinking it COULD be a milk allergy, but am hesitant to change his formula to soy. We all know that internet research can be both good and bad. The 'stuff' I have seen on giving soy to infant boys isn't good...there is a lot of controversy over the amount of estrogen in soy and what that can do to boys during puberty and adulthood. Please pray for wisdom..and a CLEAR, RIGHT answer for his skin. Healing would be the best. Second to that I will take a non-medical cream or new formula or SOMETHING to give him relief. The other problem I have is putting too much cortisone on his skin. It doesn't seem to help all that much and it is a medicine, nothing does to be honest. I don't want to give either of the boys medicine unless it is absolutely necessary.
Ethan...sweet, sweet Ethan! We have made a change in his position while he eats and so far, so good. He still has spit-ups...but the throw-ups are less, even with the tube in the dreaded left nostril. The best news I can give you is that starting this past Saturday (I don't believe in coincidences so if this is when you got Mom's email and started praying, all I can say is YAY!), Ethan has just been showing improvements that Allen and I are so pleased about. We started earlier this month increasing the amount of formula. It is very frustrating because when he was throwing up so much, the first answer was "don't feed him so much." That never seemed to solve the problem and I think that ultimately we just haven't been feeding him enough. He still has times of "where are you Ethan" where he just doesn't seem alert or care to move. But those times are less and the movement and talking and interaction ARE better! His physical therapist said yesterday "a few weeks ago I was really worried about him, but not any more!" She was very pleased at how he is not only holding his head up, but moving it around (even SOME to the left on his own). He is also starting to finally pick up his legs more. He has been moving them back and forth, but only this weekend have we seen him actually lifting his legs off of the ground (or whatever he is on). Last night I grabbed his feet to pick them up and let him "hold his toes." He straightened his legs out strong, lifted up his butt and I could NOT believe how strong he felt!
So keep on keeping on with us...we want you right there with us when we rejoice as we pull the tube out for the last time (Mommy can't WAIT!)! You are precious to us and we thank you from the bottom of our hearts!
Nana's update
Dear family and friends - so many of you have asked for an update on the boys and I know so many of you are faithfully praying for them and especially Ethan - thank you for asking and for continuing to pray -
Colin is doing very well - he is cute beyond and we think his smile is the best - he smiles with every thing he has and it makes us all smile and laugh - please pray for healing for his skin - he has very dry skin and eczema and itches - especially at night which interferes with his sleep -
Ethan is just a beautiful boy - he is so handsome - recently his physical therapist made a comment which has given me a new direction to pray for him - Ethan has benign hypotonia (low muscle tone) = he also was put back on a ng feeding tube because when he was sucking due to "immaturity" in his throat and vocal cord area he was aspirating and at risk for pneumonia - the only formula he can take by mouth is literally the thickness of honey and he cannot suck enough of it to live - thus the feeding tube - and along with the tube he has had lots of throwups, and has lost interest in sucking which is not uncommon - it has been very intense and challenging for Michelle and Allen - they are praying and we are praying that whatever needs to heal and mature in his body will be healed so that he can take regular milk again and that he will quickly learn to suck - he is scheduled for another "swallow" test at the end of this month - we are praying it will show a change - also, he does better with the tube in his right nostril - that also is not uncommon we are told that one side will be better - but it does have to be changed and this week he will probably have to be switched back and pray that he will tolerate it well and not throw up so much. the third issue he has - about a month after birth he manifested a muscle knot in his neck which is diagnosed as torticollis - probably from the position he was in the womb - that has shown very slow if any improvement and if not healed soon, doctors are talking surgery - which we so do not want him to have to go through - so that day the therapist remarked how the feeding issue keeps him from gaining strength and the hypotonia and neck issue are all three working against him - that reminded me of the scripture in Ec 4:2 which says "... a threefold cord is not quickly broken", so would you pray with us that this threefold cord of torticollis, hypotonia, and eating would be broken from working against Ethan and that each of these things will begin to heal - he has an appointment next Wednesday, the 20th, with a pediatric neurologist who specializes in neuromuscular issues - please pray that God would direct her in any testing and for a good report - as many of you know many tests have been run on Ethan and so far, no bad diagnosis has been spoken or found - and we are grateful for every negative test result. Everyone has said that he will be developmentally slow but that he will get there - I am thankful for that but also want you to know that the family is crying out for and believing for his healing - we would love to see a "suddenly" and thank you for praying with us - blessings to all, lynn
Colin is doing very well - he is cute beyond and we think his smile is the best - he smiles with every thing he has and it makes us all smile and laugh - please pray for healing for his skin - he has very dry skin and eczema and itches - especially at night which interferes with his sleep -
Ethan is just a beautiful boy - he is so handsome - recently his physical therapist made a comment which has given me a new direction to pray for him - Ethan has benign hypotonia (low muscle tone) = he also was put back on a ng feeding tube because when he was sucking due to "immaturity" in his throat and vocal cord area he was aspirating and at risk for pneumonia - the only formula he can take by mouth is literally the thickness of honey and he cannot suck enough of it to live - thus the feeding tube - and along with the tube he has had lots of throwups, and has lost interest in sucking which is not uncommon - it has been very intense and challenging for Michelle and Allen - they are praying and we are praying that whatever needs to heal and mature in his body will be healed so that he can take regular milk again and that he will quickly learn to suck - he is scheduled for another "swallow" test at the end of this month - we are praying it will show a change - also, he does better with the tube in his right nostril - that also is not uncommon we are told that one side will be better - but it does have to be changed and this week he will probably have to be switched back and pray that he will tolerate it well and not throw up so much. the third issue he has - about a month after birth he manifested a muscle knot in his neck which is diagnosed as torticollis - probably from the position he was in the womb - that has shown very slow if any improvement and if not healed soon, doctors are talking surgery - which we so do not want him to have to go through - so that day the therapist remarked how the feeding issue keeps him from gaining strength and the hypotonia and neck issue are all three working against him - that reminded me of the scripture in Ec 4:2 which says "... a threefold cord is not quickly broken", so would you pray with us that this threefold cord of torticollis, hypotonia, and eating would be broken from working against Ethan and that each of these things will begin to heal - he has an appointment next Wednesday, the 20th, with a pediatric neurologist who specializes in neuromuscular issues - please pray that God would direct her in any testing and for a good report - as many of you know many tests have been run on Ethan and so far, no bad diagnosis has been spoken or found - and we are grateful for every negative test result. Everyone has said that he will be developmentally slow but that he will get there - I am thankful for that but also want you to know that the family is crying out for and believing for his healing - we would love to see a "suddenly" and thank you for praying with us - blessings to all, lynn
Subscribe to:
Posts (Atom)
