I almost had a nervous break down today.

Hi everyone. Things are going really good, Jackson continues to thrive at home. We had our first pulmonologist appointment this morning. When we got there we went straight to x-ray for chest x-rays. When we were done with that we met the doctor. I really liked him. He was at Texas Children's until recently, and really seems to know a lot about CDH and pulmonary hypertension. He checked Jackson out and said he was doing really good for as sick as he had been. He asked if we had had any recent x-rays and we told him we had just had one, he was then able to pull up the films on the screen in the room. When he saw the x-ray I could see in his face he was not happy. He asked how this x-ray compared to others, I said it looked more hazy. The he said, "I think he has reherniated again". I almost lost it, hence the title of this entry. He got some numbers from us of people that had taken care of Jackson at Texas Children's. He was able to talk to Dr. Olutoye and they compared today's films with older films and decided to make a long story short, he had not reherniated. So I was able to bypass the nervous breakdown. He decided Jackson could probably come off of his Lasix so we are going to cut his dose in half and see how he does if he does ok we will discontinue it, then we can also discontinue the sodium and potassium too. That's about all for the pulmonologist appointment, I really do like him.
Jackson is still trying to learn to eat. We try to give applesauce everyday and he just screams. The therapist says he is doing good, because he moves it around in his mouth and swallows it, he just screams in between. He is doing good with other developmental things as well. I put him on his tummy on the boppy today and he pushed himself almost all the way off of it with his legs, it was like he was trying to crawl, I was so excited. He has also started blowing raspberries. He sticks out his little tongue and blows, basically he can;t make the noise very often just bubbles. I keep trying to get a picture, but always miss. As soon as I get one I will post it. He has also discovered his toes. He loves his toe, especially the one with the pulse ox monitor on it. My mom calls it his Rudolph toe. He also tries to eat his toes, it is so cute. I guess that's all as far as Jackson goes.
Adam and I are doing really good and adjusting to life at home with baby. Sometimes everything we have just been though hits me and just start bawling. But other then that we are great. I started back to work about a week ago and that is going really well. Adam and Jackson have fun together while I am away. My mom leaves on Saturday, it has been such a blessing to have her here.
Just for laughs
We had only been home a short time when I decided we needed a bigger car (I drive a bug). My mom and I went to look at cars. We had only been at the dealership for a few minutes when my cell phone rang, it was Adam Jackson had pulled out his NG tube. It was still an hour or so until another feed was due so my mom and I kept looking, and even decided to test drive a car. Adam then called and said he could not get the tube in and ask me to come home. His feed was no running a little late, and it was a 30 minute drive back to the house. On the way home my mom and I decided we should probably get some lubricant to make it easier. I was in a big hurry and did not want to stop, but agreed, it probably would be easier. So we stopped at Target. I literally RAN in straight to the pharmacy and found a large tube of KY Jelly "personal lubricant" then ran to the checkout. The checkout was very close to the pharmacy so the young man that checked me out had seen me run in. I ran up to the check out handed over the lube, and got the weirdest look ever!!!! This poor kid, lord only knows what he was thinking. I died laughing the rest of the way home. That guy probably told all his friends some crazy lady was in a huge hurry to buy a lot of lube.
that's all for now
Sorry about the long post.
Love
Kimberly and Adam

Amazing Baby

Jackson is doing great. He really seems to like being at home. He is already starting to catch up on some of his developmental delays. He holds his head up pretty much all on his own now. When we give him tummy time he lifts his head up looks around and just smiles ( pics included). He likes to be held sitting up in peoples laps, he likes to face out so he can see everything that is going on around him. When we hold him like this he is pushing up with his feet and putting weight on his legs. He also tries to push with his legs when he is on his tummy, he only pushes out though not up yet. When he is on his back if he has something to push against he will push off and scoot backwards. He rolled from his back to his stomach the other day. He has been going from his back to side for a while. We walked into his room one morning and he was sleeping on his tummy, I had put him to bed on his back!!!!!!!! He also likes to scoot in a circle around his crib. I am amazed at him everyday. He is going to take off soon, and I won't be able to catch up. HE is really starting to like applesauce and is really starting to learn what his mouth is for. All of his therapist have been very impressed by him.
We really miss our friends at Texas Children's. A special hello to all of you. Especially Jackie, Allyson, Emily, and Rosalind. By the way I lost of the info Rosalind gave me, if anyone from Texas Children's reads this please help me get all of Rosalind's info, again. Thank you all so much.
Thanks for reading
Love
Kimberly and Adam

P.S. I talked to baby Finn's mom today and he is doing great. He spent 9 days on ECMO. He came off on Sunday, and had his hernia repair on Tuesday. Please continue to pray for this family.
Jackson likes to pull everything off his face. I decided to take a picture of it one morning.

Oscar speech

I feel like I am trying to write a speech for wining an award when I think of all the people I need to thank for everything they have done for us. Adam, Jackson, and I would not be where we are without a great deal of help. I am just going to make a list.

Dr Daum and Dr Connors in Dallas for making the diagnosis
Sherri for helping me find Texas Children's
Everyone at work for being so understanding about my long absence and covering my shifts.
Jennifer and Heath for EVERYTHING!!!!!!!!!!!!!!!
Butch for keeping up with the yard, fence etc. While we were gone.
Kelly for staying at our empty house.
The amazing scrapbook: Elizabeth, Stacy, Mandi, Donna, Susan, Nakia, and Lori (I still cry when I look at it)
Everyone at Texas Children's
Bella, Dr Olutoye, Dr Cass and anyone else in this group who saw Jackson.
Dr. Weisman, Dr. Adcock, Dr. Johnson, Dr. Adams, Dr. Kahn, Dr. Lawrence, Dr. Horst, Dr. Speer, Dr. Lam, Dr. Soderberg, Holly Boyd NNP, Elizabeth NNP, I know there were probably a million other doctors these are the ones we had the most contact with. I don't even know any of neurologist, pulmonologist, or urologist names. Thank you to all the amazing doctors who took care of Jackson.
Nurses: Jackie :), Allyson :), Kristy:), Melanie:), Della, Beena, Eudora, Elizabeth, Emily, Estrella, Nancy, Cheryl, Lori, Belinda, Kirsten, Stephanie, Inger, Lolita, Morgan, Lisa, Michelle, Carrie, Leah. I know there are tons more we loved all of our nurses and thank you all, please know if you helped take care of Jackson we truly appreciate it.
Rosalind, we miss you. We would have starved in Houston without you.
Perfusionist: Ted, Jim, Jim, Dwight, Terry, David, Pertima, Ed, Bruce, Tiffany
Ann. We know ECMO (and God) saved his life, a special thanks to all of you.
My Parents, we would not have made it home without you guys, and we would still be running around like unorganized chickens with our heads cut off without my mom, and nothing would be unpacked.
Sheila, Adam's mom, there are not words to express how thankful we are, I have no idea what would have happened if we had not had her in our lives. She is an amazing, and generous person. We are forever thankful.
All other family members, we truly needed everyone's support.
All the other CDH families we have met. The support we have gotten from everyone has been amazing, it is so great to get to talk to others who have been through the same thing. Thank you all, I think about you all and pray for everyday.

Lastly, like all Oscar speeches we have to thank God. We know without him none of this would have been possible. I have always believed in miracles and Jackson just proves that they do happen. I know all babies are miracles, I just feel twice blessed. I thank God countless times everyday.

I know there are people I probably left off, and it is not because I am not thankful. So many people helped us in so many ways there is no way to thank them all. Please know I am thankful for each and every person that has helped us along this amazing journey.

Love
Kimberly and Adam

Home Sweet Home

Hi everyone. Sorry it has been so long since we posted. We made it Monday without any issues. Jackson did great in the car seat. He only fussed a couple of times, and even took a nap. It took us so long to get to everything unloaded, and we still have not totally unpacked yet. It is truly amazing what you can acquire in 5 months living away from home. Jackson is doing so good. He is such a sweet baby. His breathing gets a little better everyday, he does not seem to be breathing as fast as he was, and even seems to be working less hard. He is getting really good at holding his head up and moving it around. He really likes to pull it back and then knock heads with whoever is holding him. He has pulled his feeding tube out twice so far, he hates having it put back in, but we do ok. We have had a pediatrician appointment and we really liked her. Getting Jackson to the doctor was an experience though. My car would not start so we had to take Adam's little 2 seater truck. We got all of us plus the oxygen and pulse ox in there, good thing it was a short trip. It is a full time job to take care of Jackson right now but it is such a blessing. We are really starting to get a system going and a routine, which is very helpful. I think we are probably ready for some visitors. We still would like you to call first, we don't want too many in one day. We also would still like to hold off visits if you or anyone in your house has had cold symptoms in the past 48 hours. If anyone at Texas Children's read this tell everyone we said hi we miss all of our new friends. I will post new pics of Jackson soon, I have some really cute pics, I have not had time to download them onto this computer yet. I guess that is all for now. Thanks for reading.
Love
Kimberly Adam and Jackson.
P.S. Jackson and the dogs love each other they get along great.