Finally...I had time to post.....

Hello everyone,

I know it has been a LONG time since we've posted anything, but things have been crazy busy at our house. Since Benjamin came home we have been loving every minute of it. I really want to thank everyone for continuing to pray for our little man and our family. Yesterday was very memorable…it was like all of the sudden he just figured out how to eat!! It made me tear up several times. We have been working on this for SO long and yesterday, it was like something just clicked....he just started to get it, he was eating and it was amazing! He’s still only doing about 15ml per feed, but it’s every feed now and about 3 x’s what he was doing before. As I am writing this, my mom called and said he just did close to 25ml!! I am praying he continues to improve on this. Overall, if he continues to keep doing well, he could ALSO be off his oxygen in less than one month! Ben is down to 0.3L of flow on his oxygen, that is 30% of the support he came home on!! He is scheduled to go down to 0.2L on Monday. This week he has pulled the tape of his face and removed his nasal cannula's multiple times….I keep joking with him asking him if he’s trying to tell me he doesn’t need it anymore. Last night after I put him to sleep, he woke up fussing and then it turned into a full screaming fit …I went in to check on him and he was screaming and satting 100%, with no oxygen on his face, he again had pulled off his tape. It was a great day, and kind of ironic also considering that yesterday was national CDH awareness day.
For now, we will continue to work diligently with him so he can be tube free asap. Mom texted me earlier and said his occupational therapist, Trish, sees fabulous changes in him since she saw him last and his 'saliva control' is getting way better, whatever that means..I just know he's sucking and swallowing now….Keep up the good prayers, they are working, indeed.

It has been difficult at times working on all these issues, but all this hard work will make these next victories on the horizon much sweeter. We are really proud of him and both of his big sisters. They love on him and make him laugh every day, which is awesome to see. I think it is also great therapy for him. They do not cut him much slack, he's just thrown in the mix with them. Emma loves to kiss him, hold him and sing to him and make him laugh... Elsa loves to repeat his name, kiss all over him, and sometimes just do what siblings do...pinch him or try to smack him. We've been out enjoying the weather....he's been able to see the sun, the sky, feel the wind (which he hates by the way). It's awesome, all the simple dreams we have for him are coming true.....After we tackle these hurdles, we are still working on his strength and getting his helmet mess straightened out. Ugh...don't ask. He is starting to get stronger, but we still need to work on a lot of things... One more tidbit...he now has 2 teeth as well :) There was a lot to say, and there is much more, but I'll save it for another day.

Kelly

BENJAMIN is HOME!!!!

We have been caught up in a whirlwind of activity this week. After 125 days, Benjamin finally came home this past Monday afternoon!! All the things we prayed for have come true..... Benjamin felt fresh air, saw clouds in the sky, and experienced what it feels like to have the sun on his skin.....God has truly blessed our family with a genuine miracle. As we left for home, the first country song on the radio was 'History in the Making', it was perfect. We left behind a wonderful group of caring people at the St. Louis Children's NICU....and although we will truly miss them, we are so happy that we are all home together where we belong. It has been nice to call the NICU to give THEM the updates on Benjamin, instead of calling them to find out how he is doing.

Now that we are home, we start the next phase of this journey. Ben is going to need a little extra love, care and work to make it to the 'normal' milestones....he is currently still on oxygen and a feeding tube. The adjustment has gone pretty well so far, it was rough the first few days, but it is getting better. We love having him here and he loves how crazy the girls are around him. What I originally thought may scare him, he seems to love...all the squealing and laughter, the girls are just nuts in a good way :) Ben is so amused by them, he just watches them, coos and smiles really big. Both Emma and Elsa can't get enough of him, they both want to hold him and give him tons of kisses.

Obviously, we are happy to do whatever he needs to give him the best chance in this lifetime. While we have experienced this change in the past week, we are realizing how intense his care regimen is. He requires medications every 4 hours around the clock and we are still working on his feeding schedule and his therapies that need to be done with him daily. He will have nurse visits, physical therapy, occupational therapy and speech therapy weekly and multiple appointments for follow-up at Children's.

We would love to make it around to show him off to everyone, but unfortunately with all his equipment, and it still being cold and flu season, we won't be taking him anywhere except for his follow-up appointments. A simple cold will not just be a 'simple cold' for him. Since his lungs are still compromised, an infection of this sort could land him back in the hospital. Also, it's quite an ordeal getting him out of the house....we took him to his first doctor visit yesterday and it took us nearly an hour to get him and his equipment ready to get out of the house. Granted we were nervous about forgetting something he needs, but we had to have his breast milk and feeding pump, portable oxygen, pulse ox and his normal diaper bag goodies. We are looking forward to him getting stronger and easier to transport, (or just getting us more used to all the things we need to bring)....and then we can start showing our 'lil miracle off. Until then, we will continue to update the blog...We intend to do this more than we have these past few weeks....Please continue to pray for health for him and the family and for continued improvement for Benjamin.

With love and thanks for all the prayers,

Kelly and Dave