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

Emma held Benjamin!!!

Today was great....we went to visit Benjamin, and for the first time since he was on ECMO...Emma got to see and even hold her little brother. It was amazing!! The hospital is now allowing the siblings to come visit again, which is awesome. It's been over 2 months since Emma has seen Benjamin!! She was so excited and Benjamin loved being held by her today. Elsa is still getting over a sinus infection, so we will keep her away until she is completely over everything. It's been even longer since Elsa has seen Ben. I cannot wait to see her reaction to her 'Baby Doll'....she knows how to say Benjamin, but prefers to call him Baby Doll. She asks to see pictures of him every night...she grabs my phone or the camera and says 'my Baby Doll' repeatedly until I take the time to show her new pictures..it's adorable. She says 'aww' and kisses the photos. Ben is still doing great and we are making some progress, but still have a long way to go.

For those of you who say daily prayers for Benjamin, thank you...If you could, please also keep all the NICU in your prayers...for the babies, their parents and families, the nurses and doctors. The moms have a mothers milk lunch once a week, so we all share and hear of eachothers stories through that...there are some real heartbreakers there right now and unfortunately not all of those babies will be going home with their parents. Some will choose wings over feet as the NICU staff says. I know all too well what emotions the parents of those super sick kiddos must be experiencing right now as they hear heartbreaking news. The doctors tried to prepare us for that type of outcome also...but by the grace of God, we were one of the BLESSED families..and His plan for Benjamin continues....thank God. We are not lucky, but genuinely blessed by God to have this beautiful baby boy. I have never in my life believed so much in the power of prayer as I do now. Again, thanks for the continued support and I'll try to update more asap...enjoy the photos :)

Love, Kel

Merry CHRISTMas 2009

Well, as you can see we were truly blessed this Christmas...even though all of our family could not be together at home....Emma, Elsa and Benjamin are all doing great. As you can see, Ben was rather happy on Christmas....it was quite the gift. He was cooing and talking up a storm on Christmas, more than he ever has before. He was laughing and just doing wonderful. The girls were absolutely adorable also....they were so amazed with everything Christmas morning, it was awesome. (I tried to load more pictures, but it kept giving an error...so I'll try to add more of the girls on Christmas morning in a few days). For now, we hope everyone had a wonderful Christmas and we just thought we'd share these adorable pictures. God is GREAT! Also, just a quick status update...Ben is up to 34ml/hour on his feeds and down to 2 liters of oxygen and about 38% as of today...he is doing better each day....still working on getting him off his meds..Love and blessings to everyone as we have experienced Christmas in the most amazing ways this year...people have been ridiculously good to us...Thank You.....Kelly

First of all, I would like to wish our little miracle baby a Happy 3 month Birthday!!! These are some pictures we took today,

(with the exception of the one in the orange striped shirt...that was a few days ago)....and just to make it clear....he was just doin' what little boys do in the picture with his daddy....Ben was poopin'! Anyway, I am in love all over again each day with Benjamin...today he was just so cute it was ridiculous. He was letting us hold him again more the past few days and is just completely chilled out when we are loving on him. A few quick updates....As of this morning, he is a whopping 14 pounds 7 ounces!!! (I suspect it will be a bit lower tonight, they increased his diuretic as he had taken on more fluid the past few days)... He is now up to 23ml/hour on his breast milk and doing great. Laura, one of his night nurses has him trained to sleep through the night already, which is much better than either of the girls ever did...THANK YOU LAURA!!! She was kidding around tonight about him getting so big and heavy that she may have to ask for a different baby to watch...I said yeah right, you better start lifting weights, because we're not letting you go anywhere :) She also bought him some onesies last week which are totally cute on him... Also, we would like to wish Katie a very happy birthday today....she is one of Ben's biggest fans at the NICU...she totally spoils him too. She likes to bring him in all of his books and find him different things for his room. She is super sweet as well....Not too much else to report, just thought I'd share the pictures and give an update...Kel

Day 89....

Benjamin is closing in on his 3 month birthday now...it is so hard to believe that he is going to be that old already. In some ways, it has flown by and in others it seems like he's been here for a long time already. Last Sunday, I had attempted to give Ben his first haircut, as he was sporting a mullet....let me just say, he is the only person I think is cute in that hairdo these days...Anyway, I attempted to start to cut his hair and he had a pretty good fit. So he only got part of his hair cut that day...the rest didn't get finished until aunt Laure came to visit on Thursday. The past week and a half has held a bunch of milestones for Benjamin...he is now off of his versed (sedation medication), but is undergoing some pretty bad withdrawals from it...they added a less potent medication on to help take the edge off...but it is pretty much just knocking him out, so he has been very sleepy the past few days. He is now up to 21ml/hour on his breast milk and he is off of his lipids....now we just have to get him off of his TPN and his fentanyl and then he pretty much won't need the broviac line in his right leg anymore. Today, he is very touchy again...as he has been the past few days when we've been up to visit. I don't think he is feeling very well, and really doesn't do well with being held these past few days. Earlier in the week, he was such a big boy....he sat up in his bumbo seat, which he isn't too fond of, and he had play time on exercise mats on the floor in his room!! It was pretty cute. He also rolled over from his belly to his back! Way to go Ben....Today, his oxygen flow got turned down to 3 liters (he has to be down to 1 to go home)....this may take a while yet. We also have to get him to be able to take his feeds at a larger rate before we can even try giving them to him by mouth....so right now is a waiting game.....some good and some bad.....more good than bad these days. He is getting so big and so handsome!! I will try to post some new photos of earlier in the week when he was feeling better....he is smiling in a few and just looks quite amazing. He will be weighed and measured tonight, but as of last check that I heard, he is about 13 pounds, 5 ounces. We would also like to say a big thanks to our little 'elf' friends who surprised us with an early Christmas present...the delivery of a new deep freeze to store Benjamin's food in.....it is so appreciated and was totally unexpected! Hopefully, when I post next, Benjamin will be feeling much better and we'll have even more great progress to share....til next time....Love to all....Kelly

Check me out.....Luv, Ben

So, Ben is now over 11 weeks old...we have officially spent 78 days in the NICU at this point. We have been super busy this past week and haven't had time or quite honestly the energy to post. Benjamin is each day getting cuter and cuter as he becomes more aware of his surroundings and is acting more like a 2½ month old baby should. As you can see in the picture with daddy that Ben had quite the 'tan'....he was and is still pretty jaundiced from his TPN. Luckily, he is tolerating the breast milk he is being given via his NG tube pretty well....he is now up to 10ml/hour....so as they increase on this, the TPN decreases and this should allow the jaundice to resolve over time. They will be considering bolus feeds for tomorrow. He has also been just acting adorable...finding his voice (which still kind of sounds like a mad lion/cat), finding his hands, smiling, etc. It is amazing going to see him now...we can hold him anytime that we want to at this point. He now sits in his boppy, in his bouncy seat, and we will be attempting the swing next. He is becoming quite the little snuggler...he likes to take naps on my chest while I'm visiting. We are so blessed to have come this far with him. Now that he is doing better, it is getting harder to leave him at night, I just want to take him home with us. He is still a pretty far ways from that, a date hasn't even been discussed yet. He still has to wean off his pain/sedation meds, of which he is still going thru withdrawal, learn how to eat, and also wean down on the oxygen support some more. It has been nice to call to get reports on how he is doing when we are not there and the list isn't a mile long each time. I talked to Laura tonight, the report was simply....'He's sleeping right now, I'm going to take care of the other kiddo I have and then go in and wake up Ben to do his care and play with him for a while".....sweet music to my ears, heart and soul. We'll try to update more asap.
Luv, Kel