We had a wonderful Christmas, so much to be thankful for. Hope everyone had a great holiday. It was really nice to be able to take Jaxon out to see everyone this year. I think we saw all the grandparents and great-grandparents this year. Jaxon received so many toys I think we need to add a room onto the house to put them all in!! He loves them all though, he just looks around like what to do 1st. It's so much fun to watch him and Jason play on the floor with his toys. You can almost see Jaxon's little mind just turning when Jason teaches him how to operate parts of the toys.
On our wonderful 70 degree day yesterday we took Jaxon for his 1st tractor ride around the farm. He had a good time. He just smiled as the wind blew his hair. He also watched Brian and Uncle Nathan take out the Zombies. You should have seen him watch that video game in awe, it was funny. He didnt' have a clue what was going on but the sound and movement was entertaining.
I'm working on this New Years Eve, and on my way in I stopped to buy a lottery ticket for the Mega Millions. My dad was telling me I better buy a ticket the jackpot is something like $247 million. Well anyway to make a long story short the lady wouldn't sell it to me because I looked to young and my ID was in the car. Mind you, you only have to be 18 to buy lottery in KS. As you all know it's cold out and I was in a little hurry so I didn't have to time go back out. I told her " I'm 30 but thanks for making my day anyway" :) Looking back on the year and the joys and tears we have gone through and to think I don't even look 18. Well I know better but it was a good laugh anyway. However I did just buy my ticket at another store and I'll let everyone know if I win!!
I wanted to share a pleasant surprise to me today. I met the wife and children of a man I work with today. They have a little boy who just turned 6 yesterday. He is the most polite and handsome little man. He was born with down-syndrome. You wouldn't know it other than the obvious signs. It was great to talk with her. She shared her story with Trenton. Much of the same things we go through just some in a little different light. She told the hours they put in with physical, occupational and speech therapy. I got to see the results of it and it really gave me inspiration with Jaxon. I know Jaxon is doing well but sometimes you just wonder if you are doing enough and if your efforts are going to pay off. She said her son didn't walk until he was
2 1/2 and now you wouldn't have a clue. He chases his sister around the office just like little brothers do. It was a nice addition to my day.
We have a busy week ahead, but in a good way. We are doing his last set of pictures on Thursday to finish up his 1st year pictures. We didn't quite get them done the way normal people do, but what's the fun in normal. I'm anticipating Jaxon's cleft appointment on Friday. I'm hoping we will get some real answers and maybe a plan of action.
Friday, December 31, 2010
Thursday, December 16, 2010
A Quick Update Before Christmas
Just wanted to let everyone know we are getting a 2nd opinion on Jaxon's cleft palate. He has a appointment with the KU med center cleft palate team on Jan 7th. Jason didn't like the surgeon we met with a Children's Mercy. I don't think he like us questioning his 1st opinion. And his attitude was terrible. He kept telling us Jaxon's has a swallowing problem. Well duh we know this. We know cleft surgery isn't going to be a miracle cure and all of the sudden Jaxon will eat. Nope it's just a missing piece of the puzzle. If they think therapy is the only answer then we are going to ask them to help our OT therapist. Jaxon's is a very rare case and there is not a lot of documentation for kids with clefts and complications of prematurity. Our OT therapist is wanting to introduce electrode therapy for swallowing I have read a little about it but need to do more research before we decide if this is right for us. Anyway just wanted to update everyone who has been wondering where this is going.
A funny side note. Jaxon is extremely scared of the vacuum. As soon as it comes on he just breaks down. Poor guy, and poor carpet.
Hope everyone has a wonderful Christmas.
A funny side note. Jaxon is extremely scared of the vacuum. As soon as it comes on he just breaks down. Poor guy, and poor carpet.
Hope everyone has a wonderful Christmas.
Saturday, December 11, 2010
Thanksgiving and a Little of Everything
We had a wonderful Thanksgiving week. On Tuesday night we made a surprise visit to see Grandma and Grandpa Melton. Jaxon had a good time showing off of course. We went to visit Dad and Michelle afterward and Nana let Jaxon take a cat nap and you'll never guess who was up till 12:00??
On thanksgiving day we went to Jason's grandma Kaff's house for lunch. It was perfect we stuffed our faces and then I had to leave for work. Jaxon had a great time cracking up at Dale's little dog. We got a video and I will try to share it on facebook when I figure out how to get it off my phone. Since my phone doesn't do video it makes it a little difficult. We then had a Saturday dinner and Dad's. Same thing eat and run for me. Jaxon stayed and entertained everyone.
We had our first visit with Santa. Jaxon was so interested in his beard and he just couldn't stop staring at him. We had a hard time getting him to look at the camera. It was funny at least he didn't cry. The pictures turned out really cute and I can't wait to get them back. I hope they come before Christmas. We have been waiting on our family pictures for 2 months and still haven't gotten them back so who knows. One of Jaxon's nurses has taken off doing photography and she does so really good work so I'm hoping to maybe use her.
We were asked if we were interested in being an Ambassador family for the March of Dimes for the Topeka area next year. If we are selected we will basically be the face of the MOD in the Topeka area for 2011. It means pictures, speeches and any other public events to promote the March of Dimes. The largest event in Topeka is March for Babies. I'm also considering being on the board for the walk. I just want to make sure I have enough time to do everything so we benefit the MOD. They do great things.
Jaxon's update: Both he and I got a terrible tummy bug. We both were sick for a couple days and then it was over. He began taking small amounts of water from a sippy cup after his tummy felt better since he was so dehydrated. This was a big improvement. He actually thinks its fun. He has gotten his 2nd round of synagis. Went about the same as the first. He was heartbroken. 2 down 3 to go. He is doing really well on physical skills. He has learned to turn around on his butt and sit up from a lying position. He thinks he's big stuff. He is starting to move forward toward the crawling position he's just not sure enough of himself yet. Eating is at a standstill currently. We are debating getting a 2nd opinion on his cleft from a cleft palate team at KU med. We will see his OT therapist on Monday at children's mercy for a normal monthly appointment and consult her about a 2nd opinion. I just want to make sure we are doing everything we can for his progress.
On thanksgiving day we went to Jason's grandma Kaff's house for lunch. It was perfect we stuffed our faces and then I had to leave for work. Jaxon had a great time cracking up at Dale's little dog. We got a video and I will try to share it on facebook when I figure out how to get it off my phone. Since my phone doesn't do video it makes it a little difficult. We then had a Saturday dinner and Dad's. Same thing eat and run for me. Jaxon stayed and entertained everyone.
We had our first visit with Santa. Jaxon was so interested in his beard and he just couldn't stop staring at him. We had a hard time getting him to look at the camera. It was funny at least he didn't cry. The pictures turned out really cute and I can't wait to get them back. I hope they come before Christmas. We have been waiting on our family pictures for 2 months and still haven't gotten them back so who knows. One of Jaxon's nurses has taken off doing photography and she does so really good work so I'm hoping to maybe use her.
We were asked if we were interested in being an Ambassador family for the March of Dimes for the Topeka area next year. If we are selected we will basically be the face of the MOD in the Topeka area for 2011. It means pictures, speeches and any other public events to promote the March of Dimes. The largest event in Topeka is March for Babies. I'm also considering being on the board for the walk. I just want to make sure I have enough time to do everything so we benefit the MOD. They do great things.
Jaxon's update: Both he and I got a terrible tummy bug. We both were sick for a couple days and then it was over. He began taking small amounts of water from a sippy cup after his tummy felt better since he was so dehydrated. This was a big improvement. He actually thinks its fun. He has gotten his 2nd round of synagis. Went about the same as the first. He was heartbroken. 2 down 3 to go. He is doing really well on physical skills. He has learned to turn around on his butt and sit up from a lying position. He thinks he's big stuff. He is starting to move forward toward the crawling position he's just not sure enough of himself yet. Eating is at a standstill currently. We are debating getting a 2nd opinion on his cleft from a cleft palate team at KU med. We will see his OT therapist on Monday at children's mercy for a normal monthly appointment and consult her about a 2nd opinion. I just want to make sure we are doing everything we can for his progress.
Monday, November 15, 2010
Busy Week
This is going to be a very busy week at our house. Jaxon has 5 appointments 4 of them at Children's Mercy. Today we had 2. 1st was occupational therapy for eating and 2nd was urology follow-up from his surgery. His OT therapist, Jodi, was very impressed with his head control this month. Since we only see her once a month she was amazed at how much he had grown in length. However growing in length means tightness in his muscles so stretch stretch stretch she says. He has hip helpers they are like biker shorts with the crotch sewn together to help with keeping his legs together and building strength in his hips. Jodi would like to see him wear them all day long while we are at home. I'm gonna just say now, i doubt it. He isn't a real fan. We are going to start with 3 hours a day and try to work up. She was very excited about his tongue play, and how many different tastes he has tolerated in the last month. We still aren't working toward volume that will come later. We have also been working toward using a straw. He is very fascinated by the fact he sees us using one so he wants to try. He takes water pretty well. We just put the straw up to his lips and when he accepts it we let water in. He has not yet mastered using his lips or any amount of suction. This appointment is probably the best appointment we have every month. Jaxon loves Jodi. She can make him so angry and the next minute he is smiling at her.
Next was urology. It was a very quick appointment to make sure everything from surgery was looking good. It went well and we will go back in 6 months. This is something we will have for most of Jaxon's childhood. As he grows it may need repaired or patched as the Dr called it. Dr Murphy his urologist is probably one of the most personable Dr's we have ever met. He is just very down to earth.
Since its premature awareness month I'm working an information table at the hospital on Wed over the lunch hour. It should be fun. Then we have a vision specialist and physical therapy appointment in one at home in the afternoon. This is through TARC. Phyllis will evaluate Jaxon's vision while he has physical therapy. She will then send her report to his opthamologist for our December appointment, so we can get a better idea how his eyes are responding and weather or not further treatment is needed.
Last, on Thursday we will see his cleft palate surgeon and an Ear Nose and Throat Dr. Jodi, Jaxon's OT therapist was not happy with the course of action the cleft palate team suggested so she pushed for us to see his surgeon again and a ENT Dr for a second evaluation. Then Jaxon is going to join me in Christmas shopping. Just me and the little guy hanging out should be fun. Jason didn't think he wanted to stay up all day after working all night to join us, party pooper :)
Next was urology. It was a very quick appointment to make sure everything from surgery was looking good. It went well and we will go back in 6 months. This is something we will have for most of Jaxon's childhood. As he grows it may need repaired or patched as the Dr called it. Dr Murphy his urologist is probably one of the most personable Dr's we have ever met. He is just very down to earth.
Since its premature awareness month I'm working an information table at the hospital on Wed over the lunch hour. It should be fun. Then we have a vision specialist and physical therapy appointment in one at home in the afternoon. This is through TARC. Phyllis will evaluate Jaxon's vision while he has physical therapy. She will then send her report to his opthamologist for our December appointment, so we can get a better idea how his eyes are responding and weather or not further treatment is needed.
Last, on Thursday we will see his cleft palate surgeon and an Ear Nose and Throat Dr. Jodi, Jaxon's OT therapist was not happy with the course of action the cleft palate team suggested so she pushed for us to see his surgeon again and a ENT Dr for a second evaluation. Then Jaxon is going to join me in Christmas shopping. Just me and the little guy hanging out should be fun. Jason didn't think he wanted to stay up all day after working all night to join us, party pooper :)
Friday, November 12, 2010
1st Synagis injection of the season/ A day I have rarely talked about
I can't believe Nov is almost half over. It has been a very busy month at our house I guess. Jaxon and Jason have both been sick for the last week. The crap is going around. Jaxon is still trying to recover. It's breathing treatments and suction all day long. He went for his 1st round of synagis shots this morning. It was a lot harder than last year. Since he's older now it just broke his little heart when they stuck him. He had to get 2 shots this time because of his weight. He will get shots once a month through March. This shot is not a vaccination it is actually anti-bodies against RSV (respiratory virus) which hospitalized him twice last year. Since he was born early he didn't get these anti-bodies most babies get, and he's still high risk because his lungs are so damaged and he's on oxygen at night. If you are all interested here is a link to the synagis website and the 1st diagram on this page shows the difference between a term baby and a premature babies airways when they have RSV http://www.synagis.com/what-is-rsv.aspx..
I pushed for the shots for him because I know they give him the best possible chance at a healthy winter. They are very expensive so insurance can drag their feet approving them. But we finally got them approved through both insurances.
I had a NICU flashback today on the way to work. I guess Jaxon getting shots kind of brought it on. That is the most difficult part even though he is a healthy year old I guess you never get past almost losing him. I remember walking into the big open nurses station at the back of the NICU after having been gone for maybe 30min for lunch to see his door open, overhead lights on and nurses running everywhere. The neonatologist was standing in his room overseeing every move and watching his monitor. Things were going bad in a hurry. He had gotten a fungal infection in his blood. His blood pressure had dropped, his sugars were out of whack, and he was having seizures and his respiratory was fading fast. I just stood there not knowing what to do thinking "this may be it." Nurse Kathy told me to go into his room and she had me put gloves on and just hold my hands on his tiny little body while they worked. He just kept seizing under my hands. He had 5 IV's and several blood transfusions that day. I stood with my hands on his little body for several hours. The heat lamp for his bed to keep him warm made the gloves on my hands feel like they were melting, and my arms were so bruised from holding them over the sides of his bed. My hands and arms could have fallen off and I would never have let go. They finally got him stable but he kept seizing so I asked the next neonatologist to give him more medication to stop it and she agreed and finally they stopped. That was the last time he ever had a seizure.
Every time you step foot in the unit to go see your baby there is the dreaded walk to his room, you never really know what you are going to find. Is it a good day or a bad day. But I'll tell you going to eat lunch everyday after was very nerve racking. At our next care conference meeting we were asked to make one of the most difficult decisions we ever had to make. If this were to happen again and his heart began to fail what did we want done.
I haven't shared that day much and I guess part of me needs to so thanks for letting me share.
I pushed for the shots for him because I know they give him the best possible chance at a healthy winter. They are very expensive so insurance can drag their feet approving them. But we finally got them approved through both insurances.
I had a NICU flashback today on the way to work. I guess Jaxon getting shots kind of brought it on. That is the most difficult part even though he is a healthy year old I guess you never get past almost losing him. I remember walking into the big open nurses station at the back of the NICU after having been gone for maybe 30min for lunch to see his door open, overhead lights on and nurses running everywhere. The neonatologist was standing in his room overseeing every move and watching his monitor. Things were going bad in a hurry. He had gotten a fungal infection in his blood. His blood pressure had dropped, his sugars were out of whack, and he was having seizures and his respiratory was fading fast. I just stood there not knowing what to do thinking "this may be it." Nurse Kathy told me to go into his room and she had me put gloves on and just hold my hands on his tiny little body while they worked. He just kept seizing under my hands. He had 5 IV's and several blood transfusions that day. I stood with my hands on his little body for several hours. The heat lamp for his bed to keep him warm made the gloves on my hands feel like they were melting, and my arms were so bruised from holding them over the sides of his bed. My hands and arms could have fallen off and I would never have let go. They finally got him stable but he kept seizing so I asked the next neonatologist to give him more medication to stop it and she agreed and finally they stopped. That was the last time he ever had a seizure.
Every time you step foot in the unit to go see your baby there is the dreaded walk to his room, you never really know what you are going to find. Is it a good day or a bad day. But I'll tell you going to eat lunch everyday after was very nerve racking. At our next care conference meeting we were asked to make one of the most difficult decisions we ever had to make. If this were to happen again and his heart began to fail what did we want done.
I haven't shared that day much and I guess part of me needs to so thanks for letting me share.
Wednesday, November 3, 2010
Halloween
We had a wonderful Halloween this year. Jason and I finally came to an agreement and Jaxon was a dragon. He was so cute. On Thursday morning I took him to TARC for their Halloween parade and story time. He really liked the story time, it was very animated. It didn't hurt that his caseworker was the one telling the stories. Since he still doesn't eat by mouth the candy and cookies had no appeal but he had fun seeing all the other kids in their costumes.
Now I'll back up a little bit. On Thursday we had an appointment to decide if Jaxon was going to get a helmet to re-shape his head. The nurse took his measurements and said he really needs a helmet, but the bad news is he's really to old and it won't do much good. This was where I got really frustrated. I've been pushing for a helmet since he was 6 months old and no one would listen. When I finally got someone to listen now he's to old. I went through all the usual blame someone else, blame myself, and so on. She went on to tell me the flat spot he currently has will most likely be like that forever. I was really upset. Its not that I wanted him to have to wear the stupid thing I just wanted him to have as much of a chance at normal as he can. Kids can be very cruel at a young age and I don't want him to have to deal with it anymore than necessary. I know kids will find something but being self-conscious about appearance is no fun. I guess I've come to peace with it. I've decided we have been to hell and back and if this is the worst thing we have to deal with I guess we are doing alright. He has many more challenges to come so I will focus on those and forget about the stupid helmet.
We have been doing water physical therapy once and week when we can. He still isn't real sure about being in the water but after awhile he warms up to the idea and splashes around. His physical therapist (PT) is really encouraging us to go. He sees his physical therapist and occupational therapist at home once a month. They give us a list of things to work towards for the month. Then we have occupational therapy once a month at Childrens Mercy for his eating skills. Although Jaxon only sits up right now he is making improvements toward wanting to move. We don't know weather it will be crawling or actually rolling toward things but he seems interested anyway.
We have discovered chocolate and its a beautiful thing. I decided to give him an Andes mint and wouldn't you know it was the 1st step toward putting anything in his mouth. He has now tried cinnamon apple sauce, butterscotch pudding, ranch dressing, among a ton of other things. They are only tastes he still refuses to actually eat anything but we are making slow progress. He has a sub-mucous cleft palate. Basically he's missing the cartilage in the roof of his mouth toward the back which is the soft palate. This allows food and liquids to go up into his nose. We saw his cleft team and they recommended therapy which we had already been doing so we have another appointment on Nov 18th to re-evaluate and come up with another plan of action. Therapy is helping but not enough.
Well I wrote most of this a week ago and saved it and now I'm just getting back to it. The only thing I would like to add is we got approved for synagis shots today. I tell myself I'm happy and relieved but at the same time it really sucks to take him to get shots every month and on the months he gets immunizations its two sets of shots. Its the best thing we can do for his lungs coming into the flu season so here goes.
Now I'll back up a little bit. On Thursday we had an appointment to decide if Jaxon was going to get a helmet to re-shape his head. The nurse took his measurements and said he really needs a helmet, but the bad news is he's really to old and it won't do much good. This was where I got really frustrated. I've been pushing for a helmet since he was 6 months old and no one would listen. When I finally got someone to listen now he's to old. I went through all the usual blame someone else, blame myself, and so on. She went on to tell me the flat spot he currently has will most likely be like that forever. I was really upset. Its not that I wanted him to have to wear the stupid thing I just wanted him to have as much of a chance at normal as he can. Kids can be very cruel at a young age and I don't want him to have to deal with it anymore than necessary. I know kids will find something but being self-conscious about appearance is no fun. I guess I've come to peace with it. I've decided we have been to hell and back and if this is the worst thing we have to deal with I guess we are doing alright. He has many more challenges to come so I will focus on those and forget about the stupid helmet.
We have been doing water physical therapy once and week when we can. He still isn't real sure about being in the water but after awhile he warms up to the idea and splashes around. His physical therapist (PT) is really encouraging us to go. He sees his physical therapist and occupational therapist at home once a month. They give us a list of things to work towards for the month. Then we have occupational therapy once a month at Childrens Mercy for his eating skills. Although Jaxon only sits up right now he is making improvements toward wanting to move. We don't know weather it will be crawling or actually rolling toward things but he seems interested anyway.
We have discovered chocolate and its a beautiful thing. I decided to give him an Andes mint and wouldn't you know it was the 1st step toward putting anything in his mouth. He has now tried cinnamon apple sauce, butterscotch pudding, ranch dressing, among a ton of other things. They are only tastes he still refuses to actually eat anything but we are making slow progress. He has a sub-mucous cleft palate. Basically he's missing the cartilage in the roof of his mouth toward the back which is the soft palate. This allows food and liquids to go up into his nose. We saw his cleft team and they recommended therapy which we had already been doing so we have another appointment on Nov 18th to re-evaluate and come up with another plan of action. Therapy is helping but not enough.
Well I wrote most of this a week ago and saved it and now I'm just getting back to it. The only thing I would like to add is we got approved for synagis shots today. I tell myself I'm happy and relieved but at the same time it really sucks to take him to get shots every month and on the months he gets immunizations its two sets of shots. Its the best thing we can do for his lungs coming into the flu season so here goes.
Wednesday, October 27, 2010
My very first Blog.
Well, I have decided to start a blog for a variety of reasons so here goes. This blogging thing is a little more complicated than I thought so please be patient. First things first I am a horrible speller so get over it. I promise to use spell check but that is as good as it gets. This is going to be more of a private thing than facebook so it will be by invitation only. If you don't want to read our blog and for some reason you get updates just let me know and I can delete you. Trust me I will not be offended as I know we are really just boring people.
I guess the real reason this all came about was for me to be able to explain what is going on in Jaxon's life mostly. I would like to document his progress so later in life he can see where he's been. I have my days when I get down and just being able to type out what is going on helps me relax. I DO NOT want anyone's sympathy for anyone in our family. We are very blessed with our health, jobs, and a wonderful loving support system. That's not what this is about. We come across family members who still don't know some of the basic things and I guess I'm going to make it easier to keep up. Like I said if you don't want to that's fine. I of all people know everyone is busy, everyone has something going on in their lives so if you don't want to keep up we don't mind. I will try to keep up with this. It may end up being a bust so we'll see.
I guess I'll just start with today. Jaxon and I had a wonderful afternoon at the park with my sister Amanda's kids. The wind was crazy and it was a little chilly but when has that ever stopped kiddos from wanting to go to the park. Brynna is gonna be 2 in a few days, she went through the whole list asking where everyone was 1st it was Papa, Mommy, Nana. I said sorry sister your stuck with me!! She seemed ok with that when it was all finalized LOL. Jaxon loves being outside and watching the kids running around just topped it off. Grandma Kaff came by the park to visit with Jaxon. He just soaks up the attention of course. I got practice with a busted lip, missing shoes, missing mommy, other kids not playing nice. With that said watching the kids enjoying each other made all those things look small. To be young again.
I've been asked to be on a March of Dimes family support group council. I was very excited to begin doing this. We do all kinds of things for families in the NICU. Everyone kind of does something different. We have sibling classes, donuts and coffee days, craft days for the parents to make their preemie something. We also do stuff for the mothers on bedrest, informational classes on NICU, movies, and so on. It's a great program that was just taking off when we had Jaxon and I really benefited from some of the classes, so to be able to give back I felt was a great opportunity. I will begin talking to mothers on bed rest in the hospital tomorrow. I really feel like maybe this is something I'm supposed to do. I do believe we were given Jaxon for a reason. I have begun to see many of them in the last year. A few are: how strong I really am, how strong my marriage is, "You don't know what you would do until its you", Who our true friends are, how judgemental/ignorant/rude people can be, To ask for help, its ok to cry when you need to just to name a few.
Well that's enough for now. I will try to post tomorrow and give a little more information on Jaxon so we can begin our journey of documenting.
I guess the real reason this all came about was for me to be able to explain what is going on in Jaxon's life mostly. I would like to document his progress so later in life he can see where he's been. I have my days when I get down and just being able to type out what is going on helps me relax. I DO NOT want anyone's sympathy for anyone in our family. We are very blessed with our health, jobs, and a wonderful loving support system. That's not what this is about. We come across family members who still don't know some of the basic things and I guess I'm going to make it easier to keep up. Like I said if you don't want to that's fine. I of all people know everyone is busy, everyone has something going on in their lives so if you don't want to keep up we don't mind. I will try to keep up with this. It may end up being a bust so we'll see.
I guess I'll just start with today. Jaxon and I had a wonderful afternoon at the park with my sister Amanda's kids. The wind was crazy and it was a little chilly but when has that ever stopped kiddos from wanting to go to the park. Brynna is gonna be 2 in a few days, she went through the whole list asking where everyone was 1st it was Papa, Mommy, Nana. I said sorry sister your stuck with me!! She seemed ok with that when it was all finalized LOL. Jaxon loves being outside and watching the kids running around just topped it off. Grandma Kaff came by the park to visit with Jaxon. He just soaks up the attention of course. I got practice with a busted lip, missing shoes, missing mommy, other kids not playing nice. With that said watching the kids enjoying each other made all those things look small. To be young again.
I've been asked to be on a March of Dimes family support group council. I was very excited to begin doing this. We do all kinds of things for families in the NICU. Everyone kind of does something different. We have sibling classes, donuts and coffee days, craft days for the parents to make their preemie something. We also do stuff for the mothers on bedrest, informational classes on NICU, movies, and so on. It's a great program that was just taking off when we had Jaxon and I really benefited from some of the classes, so to be able to give back I felt was a great opportunity. I will begin talking to mothers on bed rest in the hospital tomorrow. I really feel like maybe this is something I'm supposed to do. I do believe we were given Jaxon for a reason. I have begun to see many of them in the last year. A few are: how strong I really am, how strong my marriage is, "You don't know what you would do until its you", Who our true friends are, how judgemental/ignorant/rude people can be, To ask for help, its ok to cry when you need to just to name a few.
Well that's enough for now. I will try to post tomorrow and give a little more information on Jaxon so we can begin our journey of documenting.
Friday, October 1, 2010
Jaxon's Journey
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| 1 day old. |
I'm going backwards and introducing my favorite little guy for those of you who are just joining us or don't already know us. Jaxon was born in July 2009 at 26 weeks (14 weeks premature) due to pre eclampisa. I spent 2 weeks on hospital bed rest and it was decided he would have a better chance in the NICU.
Jaxon came into the world at 1lb 3oz 10.75inches. I never dreamed a baby could look so small. He fought many times for his life. He couldn't breath on his own, got a very serious blood infection, Grade IV brain bleed and hydrocephalus. Due to the brain bleed he has mild Cerebral Palsy and the hydrocephalus has caused him to have epileptic seizures. During our stay Jaxon had 1 surgery to close the ventricle by his heart (PDA ligation) that normally closes upon birth. At almost 2 lbs, he just seemed so tiny for a surgeon to cut on his little body. We spent 126days in the NICU and finally got a release to go home.
Jaxon never ate from a bottle in the NICU and so shortly after arriving home a g-tube was placed, which he still has today. This little boy is the model of "Superman" He has a strength that cannot be matched. Jason and I are the luckiest parents in the world to be blessed with such a miracle.
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| 3 days old. Eyes still sealed shut. |
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| Our 1st time getting to hold him in our hands. |
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| 1st Family Picture at almost 1 month. He was scheduled for surgery the next day. |
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