Thursday, November 21, 2013

WOW if has been 2 months since my last blog :(

I guess it has been a busy two months since I apparently didn't have time to blog :( HMMM lets see. Jackson is now 12lbs 15oz as of last week so he is probably about 13 lbs now. He is 7 months old :( It seems like he just came home yesterday. He has been making lots of progress with physical therapy and OT. He saw the orthopedic who suggested that he wear corrective shoes to help his feet to straighten out a bit. His pediatrician recommended that we see an OMT and an Optometrist. She feels that if he sees the OMT it will help with the swelling in his feet and hands and help with his low muscle tone. His OT said that she is so excited to see how much it will help because she knows a lot of people that it has worked wonders with. The optometrist is because she thinks that his left eye may turn in slightly but it is hard to tell because he has small eye openings. We met with his geneticist last week and she thinks that he is going wonderful. This not know what to expect from him leaves us with lots of wonder not just us parents but also all of his doctors but he is already showing up what he can do. He only seems to be delayed in a couple of areas (growth and fine motor skills) but he is making so much progress in the fine motor skills with the help of his awesome OT and physical therapist!!!
Next week he is having his hearing test where they have to put him to sleep :( Not looking forward to that. I am thankful that my mom has the day off so that take Gray to the movies and keep him entertained while I am at the hospital with Jack. I am hoping that they find his hearing is perfect or that it is not extreme loss. He is such and amazing, happy baby. He is been a little fussy lately which is not like him so I think he is finally teething, he is going to be so stinking cute with little teeth.
 
Grayson is doing awesome. He is loving school and is just an amazing loving little man. He is learning so much it is crazy. He has been playing PBS Kids games online and it able to sound out letter and build small words with very little help. He also learned how to tie Jackson's shoe with a little help but he is really starting to get the hang of it :) He just blows my mind with how much he has accomplished in his 3 years.
He is also very excited to start wrestling this season :)

Tuesday, September 17, 2013

5 months already :(

Wow I didn't realize that it has been so long since my last post. Having two little men all day keeps me pretty busy. Well Jack had his re-check with the cardiologist and she said everything looks great and seems to working the way it should. He still has the small whole in the middle of the top two chambers of his heart and the bottom two but they are getting smaller. The artery that goes to his lung with the extra curve in it is clear and working the way it should and the one that has the little bit of cupping to it is working they way it should as well. He has been making lots of progress with PT but she suggested that he sees an OT to help him with grasping things and with putting weight on his arms. We finally have an appointment with the orthopedic for his feet even though he is putting a lot more weight on them they are still turned in quite a bit. He is getting such a personality on him and is constantly talking. He is such an amazing little man. He is still a little peanut. At 5 months he is still wearing 0-3 month clothing. He has his recheck with the hearing doctors on the first. After that we will know (hopefully) if the hearing loss is permanent and what out next steps will be for that. CDS has given me paperwork about Hearing Maine and suggests that I contact them for information and support. I am not the type of person that asks for help EVER but Jackson is making me realize that I can't do everything on my own and that it is nice sometimes to have someone there to help :)

Grayson is still having issues with his bowels :( They think that he is still constipated and have upped his dose of Miralax. He has also been having accidents with peeing which they think is due to the pressure of having a full colon :( I feel so bad because there is nothing I can do :( He just complains about his belly hurting and isn't as interested in eating. We went to the GI specialist yesterday and he suggested that he has more miralax and that he has to sit on the toilet after every meal which is not easy for him. Last night was out first attempt and he cried and said he didn't want to. Finally he did and only last for 1 minute. No matter what I bribed him with he wouldn't give it. The GI doctor said that it this doesn't help then he is going to want to run some blood work to see if there is something more serious going on. It is starting to affect his mood. He is a little bit more short fused then normal which I am wondering if that has to do with his emotions lately. He has always been a super caring and sensitive little man but lately it has gotten worse. If I raise my voice or send him to his room it as if the world is over. He is also having a hard time with the drop off at preschool. He says he loves it and loves his teacher but cries when I drop him off. Today his teacher said it wasn't as bad as the first day so I am hoping it will eventually stop. His teacher is amazing. She calls him the night before school to let him know that she has his favorite game ready for him and that she is excited to see him. She is so awesome with kids. He also has a little crush on the only girl in his class. Thursday when we got home from school he was playing with his guitar and making up a song about his girlfriend Maggie. :) He is such a loving little man.

Tuesday, August 27, 2013

4 Month and lots of progress!!!!

Jackson just had his 4 month check up and he had his CDS evaluation last Thursday. He is now 10lbs and 5oz and 21.5 inches long. He is growing slowly but still growing :) He is now rolling from his back to belly all the time and is now starting to put weight in his legs :) We borrowed a activity mat that has toys hanging from it because he didn't seem to be reaching for objects well now he reaches out and tries to grab them and he will wiggle himself to get underneath and open his mouth to see if he can get it in his mouth.

During his CDS evaluation he scored average or above on everything except for hearing in his left ear which we already knew and fine motor skills but in this last week his fine motor skills have progressed so much. His physical therapist said that CDS would be pleased with what he can do now. He is such a strong boy and when you mention that he isn't doing something the next day he does it. He is truly proving to us that he can accomplish anything.

We got the results back from his bone age x-ray and it is showing that last month he has the bone age of a newborn. They aren't really sure if anything is going to need to be done about that because he is so small but they are going to monitor it. We are still waiting to hear about his hormone and thyroid levels.

They have now spaced out his weight checks to ones a month and he doesn't have to see the pediatrician until he is 6 months :) This was a hard appointment since he had to get three shots and have a liquid medicine. He cried of course and then Grayson did and then mommy got teary eyed. It is so awesome to see such a bond grow between my two little men. Grayson is getting very protective over him and just can't get enough. They are sending in a request for occupational therapy to work with his hands and feet also we have to go back to the orthopedic and see if he thinks he will need some special shoes to correct his feet so he will be able to put more weight on his feet.

He also tried cereal for the first time on Thursday and he loved it :)


Grayson had his checkup with his doctor about his stomach. While we were there he had an xray to see what was going on in there before we went to the GI specialist. They found that he has a large stool blockage :( He is now on a stool softener and can now have dairy again which he is very happy about :) Hopefully this will take care of it and we won't have to do anything thing else.

Wednesday, August 14, 2013

Never ends

I can't win if it is not one kid it is another :( Grayson has been complaining about his belly hurting for about 3 weeks now. I first thought it was because he didn't want to eat but I noticed it even happens when he is not eating :( So I called Friday and the suggested that we go to the weekend walk in clinic. They asked a bunch of questions and decided to have us try a dairy free diet for about 2 weeks. We are only 4 days in and he is already going crazy :( I never really noticed how much dairy he eats until everything he has been asking for has milk in it :( Poor little man can't have anything he loves but we found out that he loves Almond Milk!!! They also wanted his stools collected so that they can run a Giardia test. So much fun. He heard the doctor say to collect his poop and take it to the hospital. Poor little man thought that meant he had to go so he decided to hold his poop for 2 days since the last time he was at the hospital he had his tonsils out. Well he tested negative for Giardia which is good but we still don't know why his belly hurts. We have a follow up appointment with his Doctor and they also are calling in a referral for a peds GI doctor. Hopefully we get some answers soon.


Jackson is doing awesome. He is progressing with physical therapy. He is getting so much stronger. On the first he rolled from his back to belly all by himself and I was very lucky to catch it on tape :) He is getting an awesome personality. He is so smiley and happy. He makes gasping noises to show his excitement :) It is so cute. He is such an easy baby. He is doing great being on just formula which is a big relief. He is such a great sleeper. He will go to bed be tween 7:30 and 8:30 and will sleep  any where from 1-4 and then eat and got back to sleep til about 6. He is starting to have a hard time going back to sleep though when he wakes up. Sometimes he is up 2 hours before he finally goes back to sleep :( It is a good thing he is cute because he is really cutting in on my sleeping time :) Oh and I notices the other day that there was a big amount of hair on his head support in the car seat :( Which means his hair is starting to fall out. I have notice a bald spot on the right side of his head.

Monday, July 29, 2013

So fitting :)

First Endrocrinology appointment

Well today was Jackson's first endro appointment. He weighed in at 9lbs 14 oz :) which is good for him but he still falls in the 0 percentile for kids his age. This appointment was pretty much just to get some medical background and some history about the family. They also decided to run more blood work and he took it like a champ. He let out a little fuss when the needle went in but not a peep while she threaded the needle to find his vein and the couple of minutes it took to get as much blood as they needed he just laid there and talked to them :) He is such a strong and brave little man. His doctor also requested that he has an x-ray of his left hand to find the bone age.

I love his endro doctor. He made me feel very comfortable and did not get at all annoyed with my scatter brain or the very bored 3 year old :) He also acknowledged how hard it must be on me to take of all Jackson's appointments and both boys (sometimes all 3) on my own all week and that he hopes my boyfriend realizes how hard it is. Not sure if he noticed the huge bags under my eyes today or what :) Don't get me wrong I wouldn't trade places with anyone in the world but it is nice to get that kind of acknowledgement from someone and have them realize how truly difficult some days really are. I am very grateful that I have a boyfriend that works hard so that I can stay home with my children and you always hear that from other people but very rarely do you hear them say how hard your "job" is. I love being a mom but there are some days where I wish I could just stay in bed all day never mind sleep more then 3 hours straight on a regular basis. With a job you work 8 hours with a 15 minute break and an hour lunch but as a stay at home mother/father there is no such thing as a break. You can't just call in when you are sick or sleep through an alarm clock or decided not to go to work because you just don't feel like going. You give up everything you need, want or desire so that your child has everything it could possibly need even if that means you go without.  The saying is true, the job of a mother is never done and it is nice to feel like what you do is appreciated even if it is by your son's doctor.

This past week I also made the hard decision to stop pumping :( He never seems full and ends up needing formula anyway and then he would be hungry an hour and a half to 2 hours later. Also with all the stress of everything my milk supply had decreased big time and he his appetite had grown to more then I could produce. I know it sounds like I am trying to convince everyone that it was a good idea for me to stop but actually I think I am still trying to convince myself :( I feel guilty that I am no longer pumping. It was so much easier with Grayson because he would latch on but with Jackson it takes him 30 mins to an hour to eat and me 15 mins to pump so if felt like I was  always pumping or feeding him and he seems so much more satisfied with the formula. Plus with being on the road all the time with his appointments it seemed like I was never able to pump while he was eating.

To top everything off Grayson will be starting pre-school this fall. :( Since the day he was born I dreaded the beginning of school :( It means that my baby is no longer a baby. He is so excited and talks about it non stop and absolutely loves his teacher. He needs this. I feel so bad for him being at home all week with boring, tired, old mommy and little brother that can't do anything. He is such a smart boy and he is going to do so well. 

Bryce is doing a transitional program with school to help with the transfer from kindergarten to first grade. After not being very happy about it he is actually enjoying it. He said they take hikes on nature trails and learn about trees and he got to pick blueberries :)

I am a lucky mom to have such amazing little boys in my life.

Friday, July 19, 2013

3 month Check up

Yesterday Jackson had his 3 month check up :) He is 9lbs 6oz and 20 inches long. He is still a little peanut but he is growing pretty steady. He is finally going from newborn clothes to 0-3 months :) He is getting so vocal. I love to see how much progress he is making in such a short amount of time. On the 29th we will be having our first visit with the endocrinologist were they will begin to monitor his growth.

Wednesday, July 17, 2013

3 months

My little man is 3 months :(


I wanted to make this update yesterday but we were very busy with two appointments one that lasted 3 hours :( Well we started the morning with physical therapy. Jackson has some tight muscles in the left side of his next which is causing him to tip his head to the side. We also learned that he has low muscle tone in his limbs and that is why he doesn't put weight on his legs. It is not that he can't it is just that it is harder to do so he only does it when he gets mad. She gave us some stretches we have to do and she will be back every week to work with him.

Then after that we headed off on our hour ride to Portland with a very upset little man since he couldn't eat for 4 hours so that he would sleep during his hearing test. After a bottle, burping, snooping and some fighting and 1.5 hours later he finally fell asleep. He did an awesome job. He passed with flying colors on his right ear but he still is showing some hearing loss in his left ear. She said that the movement on the left ear drum isn't what they would like to see at his age so they think he many just have a blockage. We have to go back in October and do some more tests to see if it is a blockage or if it has to do with the nerve.

Tomorrow we will have his 3 month appointment. With all these doctors appointment and other summer obligations it has been so difficult to keep up with pumping and he is now eating way more then I can pump :( It make me sad that I am not able to supply all he can eat and that we have had to start supplementing with formula. It is just so much harder then just breast feeding. Especially with a little 3 year old running around. It seems like every time I start pumping some one needs something and all of you moms out there know that if you are not relaxed it make pumping so much harder. As of right now I am still pumping when I can and he is getting about half formula and half breast milk at each feeding.

While we were at that long appointment my mother took Grayson to see his first movie in a movie theater. He loved it except for the face dive into the door. He is such a clumsy little man. After falling off the slide this weekend, falling into a door and then falling into a chair when we were out to eat yesterday I am hoping that he takes a little bit of a break from accidents. His poor little head can't take much more ;)

Today I am going to try and do Jackson's 3 month photo shoot :)

Sunday, July 7, 2013

Questions

So after a lot of thinking I decided that I would try and do some research about Jackson's condition. Mostly because of not knowing what to expect is kind of scary and wondering if the choice to not label him is actually hurting us. I got a letter in the mail stating that Maine Care will not cover the supplies for the equipment that the hospital had said we needed in order to bring him home. My question is why would they cover the cost of the rental of the equipment but no the supplies that are needed to use the equipment. First of all I am mad because I didn't want the stuff in the first place. I knew he didn't need it and I was right. We never used any of it. The hospital pretty much told us that if we went against what they said it would be consider child endangerment and going against medical advise. So we went along with their advice and now our insurance is saying based on the information that was provided by our provider they have denied our request. So I am just wondering if my stubbornness to not label my child is going to hurt him in they way he is provided for medically.

 I decided that I would try and prepare myself for what the future may hold but I was very disappointed. There is not a lot of information out this since this genetic condition is very rare. He has the 15 q 26.2 deletion. I find a lot of varying information but most of it is for other 15 q deletions. So I guess we are going to just learn from him as he grows. He has already amazed us in some many different ways and I am sure he will continue to as he grows. A good friend of mine recommended that I read an article that was posted on CNN about a father and his daughter titled "I almost left my disabled daughter" It was a great article and it really makes you think. Life is rough but no matter what your child didn't ask to be different and all they want is for you to love them no matter what. They are the most amazing gift you will ever have in life. Thank you Duane it really helped me put my life in perspective.

On a happier note our camping experience this weekend was awesome. All 3 boys enjoyed the tenting experience minus the bug bites. It was also great to spend some time with some great family and to witness an engagement of two awesome people.

Tuesday, July 2, 2013

Update

Wow I didn't realize how long it had been since I have updated this blog. I guess not to much has happened since the last time I wrote. I have been super busy helping my best friend get ready for her wedding. It ended up being a beautiful day. Grayson and Bryce were the ring bearers and they did awesome.

Jackson gave me a little bit of a scare last thursday. I came home from helping my bestfriend decorate for her wedding and Corey told me that Jackson had some bloody in his stools :( So Friday we ended up at the doctors having blood drawn and an xray of his belly. Good news is the test came back all normal but he may have a dairy allergy. It is now just a waiting game. If it happens again we will have to go completely dairy free.

This month is going to be super busy with his 3 month appointment, 3 hour hearing test and his endroconology appointment. During his 3 month appointment we will talk about him being evaluated by a developemental specialist to see if he will need some physical theraphy. His doctor said as of now she isn't sure if he will need it because his trunk strength seems great.

On a happy note all his equipment got picked up today :) and we are packing for Grayson, Jackson and Bryce's real first camping trip :) Bryce has camped in the yard but this Thursday we are headed to Vermont to do some ral camping :) and spending time with losts of family. I am hoping that Grayson does ok. Last time we were at camp he cried every night that he wanted to go home. He is such a home body. This time we will be in tents some hopefully he will think it is more fun. We are stocked up on glow sticks :)

Jackson got to meet Uncle Tony, Auntie Veronica and Maddox, Zoey and Emma this past Sunday and we get to spend some more time with them at camp.

Monday, June 17, 2013

Big Boy is 2 months

It is so hard to believe that Jackson is already 2 months old. He is getting so big and so strong. He had his once a week weight check today and he is 8lbs and 7oz. He got to meet some more family yesterday. His great grandmother and great grandfather, his great aunt Erin, great uncle Piet, first cousin once removed Tasha and her boyfriend Nick and second cousin Jaelyn. He was very excited to see his great aunt Nat and Great uncle Kevin. His appetite is growing he is now eating 70 to 90 mls almost every two hours to 3 hours. Saturday night he slept through the night from 9:30pm to 5 am. I am hoping that he continues with that sleep schedule :)

Grayson is feeling a lot better and has a huge appetite which is not like him at all. I guess having his tonsils out has helped a lot with that. He is still not sleeping through the night but he is doing a lot better with only getting up once or twice. He is still having crazy dreams and doing a lot of dream talking. I am hoping that he grows out of that. He asks to go outside or cries because he doesn't want to eat something but after I explain to him that he doesn't have to eat whatever it is and that he can't go outside he lays right back down but sometimes he just screams and not matter what I say he will just cry and cry. I will ask him the next morning why he was so upset and he has no idea what I am talking about :( Poor guy.

Bryce is almost done with school and he will officially be a 1st grader. It will be nice to have him more this summer since he won't be in school. It is good for him and Grayson to have some more time together.

Tuesday, June 11, 2013

2 month check up

Jackson had his 2 month check up today.  He is up 2lbs and 2.5 inches since birth. He has great head control and eye contact. They have reduced his visits from the visiting nurse to 1 time a week and we now only have to got to the pediatrician once a month :) She said that she is very happy with how far he has come. I am so happy that each time we go to the doctors we are getting lots of good news and positive feed back on him and that he seems to be progressing the way he should for his age. Also he smiled at me for the first time today which was very reassuring since I was a little concerned because he hadn't yet but once again he is showing  me that he is going to take his time but prove everyone wrong. He is his own person and he is going to show us all that he can do anything he wants to and this genetic condition is not going to hold him back from what he wants to do. Tonight will involve lots of snuggling him since he is very sore from his 3 shots. Hopefully he sleeps as well as he did last night. He went to bed at 8:30pm and didn't get up until 4 and then slept til 7.


Tonight I am making the transition of getting Grayson back to his own bed since he is no longer up every 3 hours for medicine and has pretty much completely recovered from his surgery. I am going to miss having a snuggle buddy all night :(

Saturday, June 8, 2013

Weight Check

Jackson Update:

Thursday Jackson had his bi-weekly weight check and he gained a whole onces. He is now up to the big 8lbs 2 oz. I am hoping that id he gains more by wednesday that they won't make us have weight checks twice a week. He has been constantly gaining since he left the hospital and they are now lowering there expectations on how much he is going to gains since he is going to be smaller then and average child.

I tried having a mini photo shoot with Jackson. He is so not a fan. How come all of my kids hate having their pictures taken :(

Grayson Update:

He seems to be almost recovered he is eating like a pig which is not like him. He has never been a big eater since he gagged on everything he would try to eat. I am so happy that the surgery seems to be helping there but he was still up alot last night which I am hoping changes when all the swelling is gone.

 

Thursday, June 6, 2013

Brotherly love

It is so awesome to see the connection between Grayson and Jackson. I was not sure how Grayson would handle having to share his mommy but he is adapting rather well. We had a little bit of a set back a few weeks ago when Grayson had his tonsils and adenoids out. What a traumatic event for my little man but he was so brave and did an awesome job. Before he had them out we talked about it a lot and he said over and over again that it was not going to happen.

The morning of the surgery he was quiet the whole ride to Mercy. When we got there he was still saying that they were not taking them out. After we got to the waiting area he started to come around a little bit while he was watching tv and finally let me put on his "Jammies" but he wanted me to lay in the bed with him and hold him. Thank god my mother came with me so she could take care of Jackson. I felt so bad for Grayson because I knew that he was scared but I was also very nervous about him having to be put under at such a young age.

One of the doctors came in and explained to him that while he was in the other room he would have to try and blow up a green balloon while blowing in the mask. When he heard Green balloon he was so excited. Then they gave him the relaxation medicine. At first he was very funny because he started saying random stuff and laughing and pointing at the ceiling. Then it started getting creepy because his eyes would sort of roll and he would be very still.

It was time so they were getting him ready to wheel down to the operating room while I was putting my suit on so I could go in with him while he was put out. He wanted me to ride with him in the bed so I did :) As we got into the room they put him on the operating bed as I stood there holding his hand and then they had him start blowing up the balloon. As he is blowing he keeps asking if it was getting bigger. The doctor then explained to me that it would look like he was fighting it. That wasn't enough of an explanation to get me ready to watching him start squirming and being held down as I stood there not being able to do anything. Then I was told I had to leave and I could give him a kiss.

The next 45 minutes seemed like hours. Dr Hearst came in and told me that he did well and that he was in the recovery room until he woke up and then he would be brought out to me. Within 15 mins they were wheeling him in and he was an emotional mess. I know that they have to make sure he is ok before they will let me see him but I can only imagine what he was thinking when he came to and I wasn't there and he was in pain looking at a bunch of faces he didn't know. I just held him as he cried and threw up. What an awful feeling to not be able to do anything to make him feel better.

Well it has been 2 weeks since then and he has recovered nicely. He is back to his very energetic self. Back to loving on his brother non -stop. So needless to say I have not had to worry about him adjusting to having his little brother around. After a month of going back and forth to the hospital he is just as happy as I am to have him home.

Wednesday, June 5, 2013

After a night of barely any sleep Dr Danby had decided to release me from the hospital early because they still had no room for me at Maine Med. Which I was very grateful that I was able to have a successful V-Bac or I would still have had to remain at the hospital for a few more days.

Still with alot of unanswered questions Corey, Grayson and I headed to see Jackson. The only thing we knew for sure was that he was indeed a boy. The reason for them being unsure of his gender was because he has a buried penis. That news was a huge relief. It was hard not to think of the many months that I was convinced that he was a girl and to think that this was some how my fault but also explains why during the last ultra sound I did not see a penis. Then I was mad at the doctors for not letting me have another ultra sound because if they did maybe we would have seen the things about him that they were questioning and we would have been more prepared.

We arrived to see Jackson in a closed bassinet with a bunch of wires coming from him and a breathing tube. We were given very little information due to them being unsure of what was going on with him and still running a bunch of tests. They had ruled out downs but due to all the swelling they still felt that he had some sort of syndrome. They had called in a genetics specialist to try and get more answers but they said the tests could take up to two weeks. They did an echo gram and found that there was alot of pressure around his heart and lungs which was causing the rapid breathing and high heart rate. They also found that he has a hole between the top chambers of his heart and a smaller hole in between the bottom two chambers. Also his feet where turned in sort of like clubbed feet so they wanted an orthopedic to check him out. They though during an x ray that they found a small mass in his abdomen and they also thought that his long bones where shorter then normal. They wanted to follow up with an ultra sound and more x rays. It was awful hearing all these things that could be wrong with him and not being to hold him and sooth him besides putting your hands in the little opening in his bed.

During the next couple of days he was getting stronger and they took up the breathing tube and he was given just a little bit of oxygen. I was able to finally hold him after a little over 52 hours which were the longest 52 hours of my life. They were still doing lots of blood work and everything was coming back fine. The extra oxygen was relieving the pressures around his heart and lungs. Due to him still having points where he would breath really fast they decided that it would not be a good idea to try and feed him by breast or bottle so they inserted a feeding tube. His swelling was going down slowly but each day he started looking better.

Eventually he was strong enough to have the cover removed from his bassinet and the orthopedic came and said that his feet should be fine with just a little bit of stretching because they are not true club feet. We also found out that there was no mass in his stomach and that his long bones where fine. Within no time he was transferred to a regular crib but was still having rapid breathing so he was still being fed by the tube. The pressure around his heart and lungs were better so they decided to stop the extra oxygen April 22 which meant that if he did well then I would be able to try bottle feeding him the following day. His was not able to take all of his food with the bottle so they continued giving him the rest in the feeding tube. Since that was his only issue they decided he was well enough to go to continuing care.

He was moved to Continuing Care on April 25. The next day I was able to give him his first bath!!! Finally thing we starting to progress. I got a call from the Genetic Specialist and the results were in and she wanted to meet with me. All I could think was there must be something wrong or she wouldn't want to meet with me. I am thankful that my grandparents were there with me that day so I wouldn't have to get the news alone. The genetic specialist started talking about different chromosomes and what was normally and then she began to explain what they had found out about Jackson. The found out that he was missing part of his 15 chromosome and has an extra part of the 4. What does that mean? Honestly they are not completely sure because he is missing a smaller part then what is normally missing with the 15q Deletion and has an extra part of the 4 which is also smaller then normal. I was given pictures to show what his chromosomes look like compare to a normal set that everyone else has. We were informed that either Corey and I could be a carrier so we should get tested because it could show up again when the boys have kids or it could just be something that just happened without any reason. She explained that this would cause Jackson to be smaller and to possibly have a problem with learning different things. It also explains the buried penis, the heart defects and the feet and smaller fingers. I was given information on both Chromosome defects to look over.

After getting home and settling in I got a call that Jackson had an episode and was back in the NICU. He was having his diaper changed and got really mad and stopped breathing and had to be bagged. What a terrible day finding out that my poor little boy may have all these complications as he grows and then hear that he had a rough night and I was not there with him. It made me mad to think that I had done everything right while I was pregnant. No drinking, no smoking and no doing drugs. Eating what I should, taking my vitamins and having my regular check ups and my poor little man was still suffering and the people that do everything wrong and they have a perfectly healthy kids how is that fair. That night couldn't get over fast enough so that I could be back there with my little man.

I showed up the next morning and they said that he was doing so much better but they wanted to keep him there an extra day so that they could monitor him closer. I was so happy to see him. The next day they moved him back to continuing care were we worked to get him to eat all he could by bottle. It was so frustrating because the kept saying he wasn't gaining enough weight so they kept increasing his food amount. I didn't think we would ever get him home. During my time at home I began reading the information that was given to me by the genetic specialist and it just made things worse. Parents had written stuff about there children still having feeding tubes at 7 and not being able to walk at the age of 4 and they had a picture of a brother and sister standing together and the sister that was 4 was about a foot shorter then her brother that was 2. It killed me reading that stuff not because I was upset by what I would possibly have to deal with but of what he will have to go through as a child. Growing up is hard enough but to grow up and being different was something that I was not prepared to hear my child would have to deal with but he is proving to me that he is strong and will continue to amaze me and everyone else as he grows.

After lots of talk with his doctors they had agreed to let him come home but he had to continue with his feeding tube. They set me up with a monitor and feeding pump and showed me how to use everything. A day before he turned a month old they were letting him come home finally. In came all the specialists to check him out one last time and lots of follow up appointments had be scheduled. It was decided that he will need to be circumcised at a year old to help with his buried penis because they think that it is being forced down by the tight foreskin. He will need to follow up with a hearing specialist because he refereed on his left ear, follow up with the cardiologist, and monitoring as he grows from the genetics specialist.

That day he took his whole feeding twice before we left and has continued to do so since we left which is one less thing to worry about and I finally have all my boys under the same roof after almost a month. After a day of him being home he was eating like a champ and at a month old rolled over so much for having delayed learning. He is amazing me more and more every day.

His first follow up with the cardiologist is showing improvement and she feels that nothing should effect him as he grows but would like to follow up in 3 months. He is gaining weight like a champ he is now 8lbs and 1oz!!!! He will continue to have his weight checked 2 times a week with a visiting nurse and every 2 weeks with his doctor but my little man is showing me what an awesome and amazing little man that he is. I was not going to share the details about him because I didn't want anyone putting a label on him but I decided that I would share to show everyone how amazing and what a fighter he is.

Tuesday, June 4, 2013

Since everyone keeps asking for updates on Jackson and the rest of the family I've decided that I would create a blog focusing on just that...

First of all for those of you that don't know Jackson made a very dramatic entrance to this world on April 16, 2013 at 11:08 am. Weighing in at 6lbs 6oz and 17 inches long. Since that day life has been crazy busy but I would not change it for the world. I had decided that I was not going to share the details of what we are learning about him but then I thought and I don't want him to ever think that I am embarrassed or disappointed by him in any way. He is an amazing little man and I am so proud to be his mother. I will start by sharing info about his entrance into this world.

My pregnancy and labor was really normal. My water broke at 9:30 pm on April 15, 2013 at home so we loaded the boys into the car and we were off to the hospital. Instantly my contractions were 3-5 minutes apart which made the 45 minute trip to SMMC seem like a life time. Shortly after we arrived at the hospital my mother and sister showed up. My plan was to have my baby naturally but my body had another idea. Pretty much as soon as they had me all hooked up to the monitors and everything my contractions were full strength and one right on top of eachother. I asked for something to take the edge off which pretty much just knocked me out until I would have a contraction and then  I would wake up in pain. After about 5 hours I had had enough and asked for the epidural. Which I did not want because all I heard was that you couldn't move your own legs or feel anything and after have a c-section and not being able to feel anything from the waist down that was not something I was looking forward to go through again. I did not experience that sensation at all. I was still able to feel and move my legs it just really dulled the contractions which gave me a little bit of time to rest. My mother and sister left around 7:30am and by 8:30am I was fully dialeted and ready to push. In the mean time my sister had some back and my bestfriend had shown up. With my sister on one leg and my bestfriend watching and Corey taking pictures I pushed for 2.5 hours since my contractions had slowed down to 5 to 7 minutes apart. Thank goodness for nurse Nancy she was amazing!!!! Finally all the pushing was worth it and my little man was brought into the world.

 Little did I know but that brought on a whole bunch of unanswered questions and worries. Dr Danby put him on my chest and Corey cut the cord and then with still no sound coming from my little man he was brought over to the baby station and the room instantly filled with people. After a few minutes we could hear a little bit of noise coming from Jackson but we still had no answers. They brought him over so that we could kiss him and then he was gone. After a little we heard that he was having some issues with his breathing and then we were overloaded with a million possibilities of what could be wrong with him. We heard everything from he may have downs to them not know what his gender was. What was suppose to be one of the best days of my life had turned into the worst. Still with no answers they decided that it would be best to have Jackson transfered to Maine Med. During the process of getting him ready to be transported he had stopped breathing so they ended up having to insert a breathing tube. So after a quick visit with him but still unable to hold himn he was brought to Maine Med while I had to remain ay SMMC due to them having no room for me at Maine Medical Center. So with no answers and no child I was left to get some rest.

to be continued...