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

Mama Sharon held me/Ben yawning from all his hard work

Today, Benjamin is 10 weeks and 1 day old. He had a pretty good day today. He is still off of the ventilator and is doing really well as far as his respiratory status goes!! He has been having some rough times withdrawing from his pain and sedation meds the past few days though. There have been times that he is not able to be consoled at all and needs another bolus of his meds that we are trying to wean him off of....and then other times he calms down pretty easily. It's been a different situation once again....he is not used to being held, so unfortunately, that isn't what necessarily calms him down. In fact, given his mood, it could make him worse until he gets used to the touch of being held. Today, he had a good day for me, and as you can see, it was great for Mama too!! It was the first time she got to hold Benjamin.

Ben acted up just in time for Dave to show up tonight after work. He finally calmed down though after getting his boluses after crying for about an hour....I just called to check in on him...Laura, Ben's nurse tonight, said he is doing fine now. She just finished up giving him a bath and he is comfy. Hopefully, we can get him through this withdrawal sooner than later and get him further on the road to recovery. We definitely have much to be thankful for this year...We hope everyone has a wonderful Thanksgiving and it is spent with those you love. We will try to update again asap.

Thanks to the Thanksgiving sneaks who left us a present on the front porch last night :)

Breaths for Benjamin

Today was a monumental day for Benjamin.....are you sitting down everyone? He made so much progress weaning on the ventilator support that they removed his breathing tube! We knew this was likely coming today, and we were anxiously awaiting this to happen. This is what we were praying for...that he would do well enough to have the ventilator support taken away and for him to be able to breathe on his own. Sometimes, once the vent tube is removed, the kiddos can wear out from having to do all the breathing on their own, and need to have a new tube put back in....but as of right now, he has been off the vent now for roughly 10 hours and he is still doing wonderful. We are now praying for him to continue doing well so he can eventually wean off of the high humidity oxygen flow as well. Check out his pictures....I think the looks say it all, he looks so relaxed on the first pic and so excited on the second pic to have the tube out.....more to come soon!!

November 20th (CHECK OUT BELOW FOR BLOG)

More good news

As I begin to blog tonight, it's been a few posts since I've written one....I am nearing the point of exhaustion, as any parent knows comes when the end of a day is nearing. Our home was filled with joyful screams and laughter tonight as the girls were acting goofy playing dress-up while I was attempting to clean. We have the Lady Antebellum CD on in the background, I am writing this and David is working. This CD was on earlier in the night and the girls and I were dancing and just playing around. Elsa is now drifting off to sleep and Emma is playing Barbies in the playroom with her cousin Delilah who is staying the night. It has been a wonderful night, following another wonderful day. The past few days have again been huge for Benjamin. Yesterday, they really started to wean off Benjamin's nitric oxide (this goes in with his oxygen, it's to help treat the pulmonary hypertension = high blood pressure in the lungs...this is the most difficult part to treat in CDH babes). When I walked into his room today, I realized how quiet and peaceful it was in there. I don't think I even realized how loud the machine that delivered the nitric was. As Ben was sleeping today, I stepped outside of his room into the larger room where they have enough room for at least 12 more babies. When I stepped into that room, the alarms were going crazy as they have a lot of babies out in that more open room. I was watching their monitors, and it took me back to when he was so much more unstable and he was setting off his alarms all the time. Then I looked over my shoulder back into his room, and it was still peaceful...no alarms, no more loud machines, just the quiet you'd expect while your baby is sleeping. I was so thankful, it took a minute to soak it all in. As horrible as I feel for the parents of those babies who are in distress currently, it felt good that THIS time, it WASN'T Benjamin.
He has now been off of the nitric for about 12 hours and his ventilator settings are getting lower and lower. Yesterday, when I left, his rate (BREATHS per minute) was at 20...tonight as I write this, the machine is only assisting with giving him with 14 breaths per minute, the rest of it, he is doing on his own. He still is getting pressure assistance from the machine to help keep the lungs open, but once the rate is down to 10, the plan is to start weaning the pressure as well. After that, we are hoping that in the next few weeks, he will be able to successfully come off the life support/ventilator...for good.
Today was his off day for his narcotic weans....but they did start weaning on another medication, milrenone... this helps make his heart contract more effectively. Now, it appears he will not be needing this much longer either. In a few days, we are hoping this medication will be gone forever also, and when this happens, he will be able to have the PIC line removed from his left leg. (It's been in since he was 2 days old).
Yesterday, Benjamin also started a new therapy with Renee. He got moved into his boppy. This gave him a completely different view on his room. It is quite a production moving him with the breathing tube still in him. They have to keep the tube in place and even a 1cm movement could be bad news..but it is doable, we just need a few extra hands to get it all done. He also started getting pedialyte introduced into his feeding tube yesterday, at the rate of 1ml per hour. That's only 1/5th of a teaspoonful over the course of an hour! Since he tolerated it so well, they actually replaced the pedialyte with breast milk...Yeah, he is finally getting the good stuff!! Although, from how quickly he is growing, you'd never know the difference. He is definitely going to be a big boy. At last check he was almost 12 pounds and almost 25 inches tall.
One concern that has surfaced in the past few days is a condition called nystagmus. It basically means that his eyes, particularly the right one, is wobbly when he looks around. They are unsure if this is a result of the narcotic wean or if it is a result of the brain bleeds that he had. Either way, this is in my opinion, a small issue. He has been through much more difficult times than this and beaten all those obstacles so far, so I believe he will be able to overcome this as well. Of course, this will also require intervention from GOD as he calling all the shots...Benjamin just relays what the results are to us.
Benjamin is definitely making moves in the right direction...Emma has already said several times how all she really wants for Christmas is to have her baby brother home. She made me cry yesterday when I was trying to probe her for what she was going to request from Santa this year. Her response was that she really didn't need much of anything, as she already has plenty of toys. She did say it would be nice if she got surprised with a few new things and then suddenly, she burst out..'Mom, I just had a great idea pop in my head, wouldn't it be great if Santa could bring Benjamin home for Christmas?!?!' That would be a wonderful Christmas miracle.....and the only present any of us would ever need for Christmas again. As I close this, I am hopeful for Emma's (and our) Christmas wish to come true, so our family can be where they should be at Christmas, at home...all together. This year, if that happens, there won't be words strong enough to express the emotions, but if he needs more time to recover, I'm OK with that too. I just think this Christmas would be so wonderful having all of our babies here with us and I believe either way, Christmas will be a celebration of the TRUE meaning this year.....more than any other we've had. God Bless and Love you all.....Kelly

Ben's Dressed and Movin!!

Three Big Days for Ben......
On Sunday the 15th, Ben's two month Birthday, he and I shared a much anticipated Birthday present with each other. I was able to hold my son for the very first time in 2 months. It was amazing!!! When Kelly and I arrived at the hospital on Sunday afternoon we were standing at the bedside looking at Ben as usual and Mindy (Ben's Nurse) asked who is going to hold him. I thought she was joking. She said she didn't know how we could just keep coming to see him and only be able to stare at him. Finally, It was our time, Thanks Mindy. I held him for about 45 minutes and he was wide awake when he was first placed in my arms and we just looked at each other for what seemed like forever. Eventually I rocked him to sleep and it was wonderful. It's hard to describe something as normal as holding your 2 month old son as being incredible, but everything has been different with Ben. It's nice to have those normal moments with him.
Monday was another milestone for Ben. He got dressed!! Since Ben had his chest tube removed last week and his wounds were heeled the nurses said we could bring in some clothes. Kelly had picked out a onesie from where else........Target. Monday when we went to visit Ben we were able to dress him for the very first time. He looks so grown up with that outfit on, and we took plenty of pictures. It was a fun day for all of us.
When we arrived at the hospital today it was Kelly's turn. She held him for over an hour and then I held him for about an hour. It was our second time, mine in three days. Hopefully this becomes more normal and I won't get so excited that I have to write about each time I hold my child. Ben did great and Sats were mostly 100/100. As of 10:00 p.m., Nov. 17th Ben is doing great, his life support vent for beats per minute is down to 26!! His oxygen setting is down to 54%!! Keep in mind he was at 70 and 100% a little over 2 weeks ago. Way to go Ben, keep it up.

More thanks:

Thanks to Holly Debbie & DeeDee for all the work you did for the benefit, you guys are awesome.

Thanks to Danielle and Drew for babysitting Emma and Elsa during the benefit, the house was not even on fire when we got home. They were so cute and drooling all over our couches I almost let them sleep. You guys are so sweet, thanks.

Thanks to Tanya and Josh for donating way more than enough, and to Matt & Misty for driving all the way from Ozark, MO to be there.

Thanks to my Bro Timmy and his wife Laurie for all of their support and for helping us find Christ Church, we wouldn't have the strength to get through this with out that support.

Thanks to the all the people from Express Scripts for their donations and for the gift card book. We have been living off of that since Sunday, you guys are an excellent support team for our family and now I know why Kelly drives all the way to Maryland Heights to work.

Thanks to everyone else for your prayers, keep going, for they are being answered in the form of a little Miracle named Benjamin David.

Benjamin's Benefit was AWESOME....Thank You!!

Check out this pic of Ben, Tracy (Ben's Guardian Angel Nurse) took this while we were at his benefit. Benjamin was happy and excited to have approximately 400 friends and family show up on his behalf. Also our sincere apologies to the over 60 people that showed up and had to be turned away at the completely packed Catholic War Vet in Smithton. Kelly and I were completely overwhelmed to see the line to get into the hall all the way into the middle of the parking lot. (Thanks for the use of the hall Tiffany). That means a lot to see so many people still care about other people in this world. GOD is GOOD All the TIME!! We dream of the day when Ben is growing up and we can sit him down and tell him the story of how his incredible journey has touched the lives of so many people in the most positive ways. Special Thanks to Karen, Vic, Dale, Donna, Nate, Johna, Abby, Lexi, Wally, Tiffany, Jim or Tim, Sharon, Ian, Chrissy, Rev. Allen who led the prayer and the many others that donated time or gifts on behalf of Ben.
Benjamin has responded to all the Love that was shown last night. Today he is doing amazing. His vent rate is down to 36, Oxygen 80%, he is still scoring 100/100, keep going Ben. Hopefully Mindy (Ben's Nurse today) can stay awake long enough to watch Ben today. She was at the benefit and I'm pretty sure she wasn't holding that Smirnoff for Renee who bought half the silent auction. Just Kidding, we Love Mindy and all the Children's staff. Renee made the most awesome pins for the benefit that will most likely end up being on the shirts we will have made for Ben. As if the Children's staff doesn't spend enough time helping all the children while at work, they devote personal time outside of work to help the families even more. That is what makes Children's a special place, the people. THANK YOU!
A boy scout and his Father just came to the door, I couldn't help but buy some expensive popcorn after all the support everyone has shown for us. I also hate to tell Ben when he grows up he and I will be going to all the supporters and neighbors houses and he will have a lot of leaves to rake, snow to shovel, grass to cut, etc..... He will be happy to do it.
Speaking of neighbors, Diane, Leslie, Dee Ann........ AMAZING!!! You guys never ask for anything but are always the first to offer help.
I wanted to Thank my Dad for helping keep my business going when I need him and giving advice and support through our roughest times. My mom for coming and watching the girls so we can see Ben. Kel and I want to thank Jim And Sharon for leading by example, they are ALWAYS there for us when we need them, for anything at anytime. If we are half the parents they are to us, when our kids grow up, we will be parents of the year.
James and Christine, the parents of Ellis, Ben's ex-NICU neighbor... Thank You. James stayed at the benefit and helped clean up after everyone left, and he just continues to amaze me. My life is better for just knowing them.
Kristy, thanks for being there for Kelly and I. Your babies are amazing and you are a wonderful Mom. I can't wait for a play date with the L's and Ben. Love you.
I could thank people all day, I will save it for another post..... Don't worry if I didn't thank you, I will, and I appreciate everything from everyone.
O.K. just one more I promise. My sister Laure. I just wanted to Thank You for always cheering me up when I'm down. Always seeing the bright side. Just for always knowing the right things to say and do. I overheard James and her talking last night. Everyone who reads this go hug your kids right now. Some people never get the chance. James and I are lucky. He has Ellis home and gets to hold him anytime he wants to. I don't get to hold Ben, but I will never complain. I have gotten to see Ben for the last 61 days... Read him his bed time stories, say his good night prayers, and just Love him. Laure, when I see Ben I always think of your son Gabriel, he is not forgotten, He is in our hearts. He is looking over his baby cousin, Ben. Love ya Sis.

More good progress

Right now it is Saturday and we are visiting with our little man while he snoozes. We are excited about tonight, but even more excited that Benjamin is making more progress. His blood gas was really good again this morning and they were able to wean his ventilator settings again...this time more aggressively than they've tried before....his rate is down by 4 today...to 40 and his oxygen percent is also down by 4...to 84%. Even with these weans, he's got oxygen sats of 100/100 with no fluctuations! We still have a long way to go, but we are headed in the right direction.
We can't wait to see everyone tonight and celebrate how far he's come so far...one of the most important people so far in his life will not be able to come as she will be busy watching over him at the hospital...Tracy is really his Guardian Angel.

Keep the good days coming!!

Today when I arrived, Benjamin was crying a bit and his sats were drooping just slightly. It appeared that he didn't like his position, so his nurse Mindy helped to get him back to a more comfortable position for him and he settled right in. He was awake and comfortable for almost 2 hours while I was there this am!! He was moving around quite a bit, and this time it wasn't movement from distress, just perfectly normal baby movements. The only other time he had any issues while I was there was when some mucous settled in his chest...Becky came in to suction him and then he threw up again...but again very quickly settled in and was very chilled out. During his awake time, I read him one of his favorite books..'Yummy Yucky' (thanks Katie) and then I watched him play with his elephant and his giraffe for a while. The giraffe was right above his head and he kept moving his little arm like he was trying to hug him...each time the giraffe came down it looked like he was giving it a kiss on the lips! After all that playful excitement, he had a few adorable little yawns and finally drifted off to sleep.

His blood gases were so good today that they were able to wean his rate twice today, come down 2% more on his oxygen, decrease his pain med, and he didn't even need his boluses that he usually gets with his care at 4pm because he was so comfy and chilled out. Mindy said she did all of his care and he was awake and then just fell back asleep comfortably after she was done. (Awesome!! Thank you God!)

Also I was told that I can now bring in button up onesies for him to wear now that his chest tube is out and he is more stable. This will be the first time he's ever been able to wear any clothes of any sort, so I am very excited about this. I can finally get him a few items to wear. I'll definitely have to pay attention to the weight and take his height into consideration...the 'little' stinker is greater than 97th percentile for his height...big shocker, right?

Right now, Daddy is over at the hospital with Ben and he is getting another bath. I hope to hear more good news tonight when he gets home.

I am anxiously awaiting this weekend and can't wait to see everyone!! Hope to post more good news tomorrow.

Another great day

Today makes day #57 for Benjamin in the NICU. When we arrived today, Benjamin was totally relaxed...he had just finished getting a massage from his personal masseuse/girlfriend...Renee. He's very fond of her and really enjoys her visits. She made him the sign I've included in this post, way too cute! Overall, today Benjamin had a pretty big day. They removed his chest tube..one less thing sticking out of him. We just hope he tolerates this well and gets to keep it out. Also, they were able to make another ventilator wean today.
Not long after we got there, his nurse, Amanda and Renee tried to move his head mid-line, and as soon as they did this, Ben threw up. Next thing we knew, we had 2 doctors and several other staff in his room. We very quickly found out that they were actually pleased with him doing this...basically, he was strong enough to get the fluid that would normally require some suctioning out on his own this time. They are expecting him to have pretty bad reflux, so they started him on protonix to help with this. They also said they are going to hold off on starting to feed him breast milk for a bit longer. Tomorrow the plan is to make another wean on his pain medication and hopefully another wean on the ventilator.
After visiting with Ben tonight, we picked up the girls...Emma talked about wishing on a star tonight for Ben to be well enough to come home for Christmas. Like any little kid, she had more than one wish, the next was for Ben to be well enough to take the trip to Florida that she talks about all the time. Then she drifted off to sleep on the ride home, likely dreaming about the ocean. Elsa on the other hand, had to be woke up when we got to mama and papa's, so she was awake on the whole ride home. When we got home, I took her in her room, rocked her and sang 'Jesus Loves Me'...every time I stopped singing, she would start. It was so adorable.
I would like to add that Ellis is loving being at home with his family and we could not be happier for them!! I spoke to his mommy last night and he had a great first night and day at home, where he should be. Speaking of yesterday, it was quite a big day for our kiddos as well...we celebrated 8 weeks of life with Ben, Elsa turned 17 months, and Emma got her first loose tooth!! Emma's tooth came loose at lunch, biting into a hot dog. She has been very busy wiggling it around so the tooth fairy can make a visit ASAP.
For those of you attending Ben's benefit this weekend, thank you in advance. We cannot wait to see everyone and truly appreciate everyone who is making it to the event. We are planning to have a great time and we hope to have more positive news to share that night..FYI...the official color for CDH awareness is turquoise if anyone is struggling with what color to wear :)

Happy 8 week Birthday Comfy Ben

DAY 56

When I arrived at the hospital to see Ben today Kelly was taking pictures of Ben as usual. Tracy, (Ben's Nurse), had him laying in the most comfortable position. He was on his side and had his lion that his sister Emma had given him (because he is so brave), laying under his left cheek supporting his head. A small cloth tucked between his little legs and covered by a yellow blanky. I just wanted to scoop him up and hold him in my arms. (As I am typing this, Kelly is watching tv and a Sandals Resort ad came on for 65% off. I'm listening to my Ipod and typing and I could hear her say UUUGGGGHH. I said "what". She said "were not going there any time soon"). I'm gonna say that's pretty accurate. I think Ben and his sisters would rather go to Florida anyway, we will wait for Ben. He has made us so much closer as a family and I have never looked at Kelly , Emma and Elsa the way that I look at them since Ben has come into our lives. Matter of fact I see everything differently. Thanks Ben.
By the way Ben is doing wonderful and is taking his baby steps with his vent and pain med weans. They removed his NG tube and inserted a feeding tube. We are just waiting for him to let us know when it's ok to start 'feeds'. He is enjoying his twice a day flips from back to belly, maybe he will take after the Megahy's and be a gymnast. The last couple of times we have visited he has looked super comfy. Ben, Kelly and I want to thank all of his NICU nurses for taking extra care to make him as comfy as possible. God Bless everyone that has been there for Benjamin's Journey. Love, Benjamin, Emma, Elsa, Kelly and David.

November 7th: Day 53

Benjamin had a more touchy day again yesterday, but he settled in pretty well overnight. He also had a good day today, they were able to regain some of the ground on the vent that was lost a few days back. He has been a bit more touchy again tonight while we have been here with him. He has been weighed and measured and the 'little' stinker is 11 pounds 11 ounces and 24.8 inches long!! So he is definitely growing. Today, they also turned his NG tube (the one going into his stomach) from suction to gravity...they are trying to see if he can tolerate this so we can then start feedings of breast milk. Right now, he is sleeping comfortably and we hope to keep him like this or better so they can continue to make progress.
On another note, we are VERY pleased to say that Ellis is supposed to be busting out of here soon...Monday is the plan. We will miss them terribly, but we are SOOOOO happy that he has recovered from everything this well. He is doing much better than expected.
We will try to post more asap.

November 5th: Day 51

Yesterday, they went down on Benjamin's vent settings, both the oxygen and the rate...they are also weaning his pain/sedation meds (narcotics) and his seizure medication is going to be 'auto-weaned'...basically, this means they will keep his dose the same as he grows, so eventually he will just outgrow the med and hopefully not need it anymore. So with these things, he is going thru withdrawal from the narcotics, and they expect he is going to be much more touchy again. He's basically detoxing. Last night Tammy was able to get his head mid-line and he actually tolerated it quite well. We got to have a period of awake time with him that was about an hour and a half which was great. We just talked to him, sang to him and read him some books. He really seemed to enjoy all of this. Benjamin's blood gases are not quite what the Dr's would like right now, as he is holding on to excess carbon dioxide. So today, they are going to replace his NG tube and also flip him onto his belly for the first time since before his surgeries. Hopefully this will help him get rid of some of the carbon dioxide. His chest tube is lessening in the amount of fluid it is putting out...if it doesn't drain anything for roughly 48 hours, they will consider removing it. Also, yesterday, his mucous secretions increased again...so they are doing cultures from his trach tube and his broviac in his leg to rule out infection. I'm assuming this will mean he will be in isolation for the third time until the cultures would rule out anything contagious. So overall, he had a more bumpy night after we left...hopefully, he will have a better day today. I'm just glad we got to enjoy some time with him yesterday while he was quite comfy. I will update more when I can.
Kel

November 3rd: 49th day

Yesterday, when Dave and I went to visit Ben, we both thought that he looked so much different..older. While we were with him, even though his oxygen sats were good, he was shunting, and more than he usually does..(his oxygenation was not as good to the lower extremities). It was still acceptable, but not really his norm. Today, when I got to the hospital, his heart rate was elevated and his sats were separated again. Mindy said on rounds the doctors had decided to give him an extra dose of his lasix to help pull off some of the extra fluid after the results of his daily chest x-ray....I realized today this extra fluid was probably why he looked a bit older, his face had been fuller, not swollen, but just fuller. He had therapy today and with this they attempted to put his head a bit more to the mid-line, but he really doesn't like this. Afterwards he just had a furrowed brow, not super uncomfortable, or looking like he was in a great deal of pain, but I knew something was making him feel bad. Well, Mindy moved his head back to the side and had also given him his lasix dose...I left for a few minutes and when I came back, everything was looking much better. Ben just looked more comfortable, and his sats both came up into the 90-100 range...which is much better. Even though his sats were better after he urinated quite a bit, he was still much more 'touchy' today than he had been in the past few days. Even with this they are still making progress on weaning his vent support and pain meds. He also had another cardiac echo today, of which we are still awaiting the results. This is basically how his day went today, we are hoping for a quiet night for him. This picture was from today after we got him more comfy....

Pictures of Mommy holding me for 1st time and of incision

November 2nd **MOMMY GOT TO HOLD ME!!**

Today was absolutely amazing. Ben had quite a big day...never did I think it would be such a big day for me as well...Benjamin is on his 48th day of life and I got to hold my little angel for the very first time today. I cannot even explain how that felt....there are not words for it. He is such a beautiful little boy and he was so good when I held him that they let me keep him in my arms for a bit over an hour. He just slept in my arms, and as any parent knows, it is a wonderful gift to watch your baby peacefully sleeping, especially when it's in your arms after waiting nearly 7 weeks. It was very hard to give him back, as I'm not sure when I will get to hold him next. (I feel that Daddy should get the next chance....I offered the option to him today, but he graciously let me be the one to hold Benjamin). Part of the reason I got to hold him was because he got a big boy bed today. He was pretty much too big for the original bed from the beginning, but needed that type of bed for a while. Now he has more than enough room for him and all of his zoo...the stuffed animal collection just keeps growing.
Ben also had his art line removed today, so that is just one less line coming out of him. He will now be getting stuck in his heel twice a day to get his blood gases done. They also said his fluid from the chest tube is starting to lessen, so hopefully soon we will get to the point that the chest tube will be able to come out as well. In the meantime, they are weaning his pain and sedation meds by very small increments, only weaning one every other day. They are also making slow steady weans on his ventilator as well. Ben has been trying to breathe with the vent quite a bit more lately. We are also hoping to get to the point soon where he can start taking some breast milk thru a NG tube. We will of course need to see how he tolerates this and it will be VERY small amounts given at first...probably only one ml..(1/5 of a teaspoon) at a time...(this will be happening while he is also getting nutrition via his TPN). So, in other words, he will still be having a lot of changes going on and hopefully he will continue to tolerate everything even better than expected.
Again, we are still not at the point where we are guaranteed that we will be able to bring him home, and believe me...when we get to that point, I will be shouting it from the mountain tops....but I am so grateful that God has brought Benjamin this far and continue to pray for good things for our son. We spoke to one of the NICU nurses today who has a 6 year old son who is a CDH survivor...we discussed what types of things to expect both in and out of the hospital...The road to recovery is likely long, but I truly feel like we are on the right path....and will appreciate each day for it's progress and continue to be thankful for everything as it comes.
Check out the pics of his incision and even better, me holding Ben.
Love to all.

BENJAMIN'S BENEFIT/FUNDRAISER

Details for Benefit/Fundraiser for Benjamin....
Date: Saturday, November 14, 2009
Time: Doors open 6pm, Trivia starts at 7pm
Silent Auction tables close at 10pm
Place: Catholic War Vets (off Route 159 between Belleville and Smithton)
Cost: Trivia will be $80.oo per table.
Individuals will be $10.00.
There will be 8 people/table
Please bring your own snacks.
Drinks available at the bar.
Any donations for the silent auction or pre-registration please contact Karen and Vic Morris @ vvbarron69@hotmail.com OR dhubble3@charter.net
Donations are still needed and are tax deductible.

November 1st

It's been a few days and I haven't had time to update until now....Benjamin's last surgery went great on Thursday. He is completely closed up now. He did wind up having another pleural effusion issue that morning, so they bumped his surgery up to an earlier time in the day due to this. They also inserted a chest tube to be able to drain off the excess fluid that has been accumulating in the chest. After the surgery for the first day or so he was definitely more touchy again and required more medication to help out with the pain. I just got off the phone with his nurse, Beth, and she said he made some good baby steps in the right direction last night. He required less pain meds and his fluid from his chest started to decrease in amount. He had his catheter removed this week, so now he just gets his diaper changed like you would normally do. He's still producing a good amount of urine and making his own stool which is great because it means his intestines are functioning pretty well. They may have to take the art line out of his heel and resort to heel sticks for his blood gas work now, as the line isn't reading well and is not allowing them to access the blood required for the blood work anymore, (this is pretty typical, they don't last too long). I can't imagine getting poked with a needle in the heel would be very comfortable, but at least it's one more line out of him and hopefully they can make sure he gets it done after a dose of his normal pain meds.
Yesterday, I talked with one of his nurses, Mindy....I asked if she thought maybe in the next month, as long as he is improving, if we would be able to hold him for the first time. She thought that would be ok coming up soon, but obviously Dr. Saito would be the one to clear this. Obviously, Dave and I do not want to do anything that would make it harder for Ben, but it has been so hard not getting to hold him for this long! That will be a wonderful day!
Well, we are off to church for the day, and to spend some time with our kids. Hopefully, we can update some pictures today. God Bless.

October 28th: Day 43

Last night I had the best of intentions of posting pictures, but a migraine won out...imagine that. Early this morning when I called to check on Ben, I learned he had an ok night, but was still very easily agitated and dropping his sats with minimal stimulation and routine care. This morning, the chest x-ray looked not so great again, so they again had to 'tap' his chest. They pulled off roughly the same amount they did before when the pleural effusion was causing him trouble. They had also turned up the pressure on his vent, but today I talked with Dr. Anna (an-ya) and she said that it was not because he was worse, but simply to compensate for the air leak around his tube. Since they tapped his chest this morning he has been doing pretty perfect today...his sats have been 100/100 for most of the day and he had one of his best blood gases this afternoon. So, they decided to wean a bit of his oxygen, just by 2%, but if he continues to do good for several hours, they will continue to back down another small increment. So far, it looks like tomorrow will be the last surgery to close him up fully. I am looking forward to getting this taken care of. If he continues to have issues with the pleural effusion, they are considering inserting a chest tube, but I don't think we are there yet.
On another note, his best buddy Ellis is doing great also. They are starting to hear the 'h' word ...(home). I am so happy that going home is even beginning to be discussed...he is such an amazing little guy too! Keep up the good work Ellis, you need to show Ben how to do this so he can get home too!
Right now, Ben is resting peacefully with his little buddy the giraffe and a bear. He looks so cute and calm today. Days like this help to get thru the rough days. We've talked about Halloween costumes for him...Ben and Ellis are thinking about being boxers...they're tougher than any professional boxer I've ever seen! The little engine that could was also brought up....personally, I'd say he's more of a freight train :) Take care everyone, I'll try to update asap.

October 27th: update

After they removed the excess fluid from the left side of Ben's chest, he improved quite a bit. He was stable enough to proceed with the next surgery to close his abdomen more. They did this procedure and removed one of the 2 drains in his abdomen that were placed to remove excess fluid from the abdominal cavity after the surgery last Thursday. After the procedure today, he was doing well at recovering, but then had several episodes where he has desaturated (his oxygen sats went down). His nurse, Tracy, and the doctors have been watching over him very closely and we are very lucky they know him so well so they can adjust quickly to the signals he is giving us to let us know when something isn't quite right. They have repeated 2 more chest x-rays today and have made some vent changes...decreasing his rate and increasing the pressure a bit... and he's required more suctioning, which initially he doesn't like, but he is starting to settle in again to his norm. Again he has proven to us just how strong he is...he's so amazing. (Also, Ben opened his eyes just after surgery today, I will try to add that picture tonight).

October 27th: Day 42

Happy Birthday Daddy and also to Benjamin who is now 6 weeks old. Each week we make it thru is another milestone for little Ben. Ben continued to be very touchy throughout the night last night. This morning, his chest x-ray looked worse, they determined that his pleural effusion they've been watching was the cause of some of his agitation. A pleural effusion is an excess of fluid that accumulates in the pleural cavity, the fluid-filled space that surrounds the lungs. In his case, they were aware of this, but were hoping the tissues would reabsorb some of the fluid. This didn't happen, so they wound up having to insert a needle into his chest to drain the excess fluid out today...they got about 3 ounces of fluid off the left side. After speaking to his nurse, she said he instantly opened his eyes after this was removed and his sats went up. We are now awaiting the repeat chest x-ray...(he gets daily chest x-rays typically). For today, the original plan was to try to close some more of his incision, but I'm awaiting a call from the hospital to see if they feel he is now stable enough to undergo this surgery. Also, they had another head ultrasound scheduled to assess the size of the ventricles in the brain...his were enlarged on previous studies likely due to the brain bleeds he experienced. Also, there is a chest echo scheduled to assess his heart function. We were on a bit more of the emotional dip in the roller coaster ride of his journey yesterday and even though a lot is planned for today, we are hoping for great things for Ben today. Please continue to pray....

There is also an article in the Belleville News Democrat today regarding a bit about his story and the benefit my family is putting together for Ben's medical bills. It is definitely scheduled for November 14th at 6pm at the Smithton Catholic War Vets. A sincere thanks to everyone involved in setting up this event and to those who have donated their time and items for the silent auction and trivia night. As many of you know, it is uncertain how long Ben will be in the hospital hopefully on his way to recovery and if we will even be able to bring him home...we pray every day for miracles and God's grace for Ben and really appreciate everyones support. His is still a very long journey which we will gladly walk with him, this type of event will help to take some of the burden off of us.
With much love and thanks, Kelly and Dave

October 26th update

Ben continued to have a rough day today. He was very touchy and we are hoping for an easy night for him....but look how cute he is in his pumpkin hat....

October 26th: Day 41

Benjamin had a rough night last night. They feel like he had a 'plug' in his breathing tube, likely caused from thicker secretions stopping up the bottom of the tube. This caused his heart rate and blood pressure to increase quite a bit and his sats to drop. They had to increase his rate on his vent again. We got a call at 5:30am to come over due to these issues. His carbon dioxide level was VERY high as well as a number of other monitoring parameters, including his white blood cell count. They are sending off cultures, but believe this is more of an acute event due to the plug and not an infection. They have adjusted a few of his meds, replaced his NG tube because it also had very thick secretions clogging it and adjusted a bit more of his vent settings. Right now, he is trying to settle back in to his groove and our hope for today is a lot of rest and no more events. Please pray for a non-eventful day for Ben, unless it gets better. Thanks.

October 25th: Day 40

Last night they had to adjust one of Ben's vent settings, they had to increase his rate slightly, (rate=breaths/minute), to help him with his oxygen sats as they were sagging a bit. When we visited with him, he just seemed more tired to both Dave and I. After adjusting the rate, it did help him. Dr. Saito came in this morning and did the 2nd surgery to close his incision. She said that he did really well with the surgery. They also changed out his catheter and removed his stitches from his ecmo cannula's that were in his neck. His dopamine has been completely removed, as his blood pressure is staying up where they want it to. He is resting peacefully right now with his daddy holding his hand and hopefully will continue to stay chilled out for the rest of the day. We would like to thank Shannon, Ben's ecmo nurse and girlfriend, for her post the other day. It has touched more people than she will ever know....every one of which said it made them cry, including us. Ben has been very blessed to have such caring nurses and doctors watch over him through all of this. We really couldn't ask for more in that respect. The plan for the rest of today is to let him rest and settle in before the next surgery to close the incision more...they are expecting 2-3 more surgeries this week to accomplish this. As always, we will try to keep everyone posted the best we can. We also wanted to let everyone know that some of my family members are planning a benefit for Baby Benjamin on November 14th at 6pm. We don't have all the details yet, but I will try to put these on the blog asap as I confirm all the details. If you can come, we would really love to see everyone...God Bless everyone for caring so much...

Our first family photo

This was from when Ben was still on ecmo...it's our first family photo with all 5 of us...

October 24th

Today is another blessed day...Benjamin had a wonderful night last night and they are going to try to wean some of his ventilator support today in anticipation of needing to go back up a bit tomorrow....that is when Dr. Saito is planning on checking to see if she can 'cinch' part of his surgical incision in to sew it up a bit more. With this, they are expecting that to be a stress on him again and that they will need to go back up on the vent support a bit. Ben again had awake times this morning where he has been completely comfortable and his oxygenation sats are higher than yesterday. The girls have a birthday party today, so Dave and I are planning on going over after that to visit for the day. Also they weaned some of his dopamine (this medication keeps his systemic blood pressure up so it can reduce the blood pressure to the lungs). As rough as this journey has been for our family, we are so excited that Benjamin is doing so well...this truly couldn't have happened without God continuing to hold him up thru all of this. We feel so blessed by having him in our lives, it's unbelievable. This journey has taught us so much about TRUE faith in God and His plans, He truly does walk with us thru everything. We love you all and thanks for the continuing support. Please also pray for Ben's best buddy Ellis...he had MAS (meconium aspiration syndrome) at birth and is another miracle baby...he has repeatedly beaten the odds as well....he is Ben's next door neighbor and he was also on ecmo for 20 days. He also had brain bleeds from the machine that saved our boys, and they both will be facing a long recovery.....We are still not out of the woods by a long shot with Ben, but I would like to say that Ellis, thank God, is definitely on the road to recovery. He is several steps ahead of Ben in this journey, and is doing better each day. Both of these boys are in our hearts and thoughts every second of every day... and these little fighters melt our hearts everyday.....please send your prayers his way as well as Ben's. More updates to come....

October 23rd

Today is the first day after Ben's surgery and overnight he did really well. Praise God!! Currently his oxygenation ('sats') are really good and his heart rate came down overnight like the doctors wanted it to. They are planning just a few minor changes on his medication doses today, but the main goal is to let him rest. This morning, I came around to check on him and was able to catch rounds with the doctors. They were also quite impressed with how he is doing so far. After rounds, I went into his room and he was very calm and peaceful and opened his eyes and was just looking around taking everything in. Our son has been the most amazing gift and has taught us so many things it's incredible. Today, along with prayers for Ben, I'm going to ask of all our family and friends to take a little bit of extra time out of their busy schedules and focus on the good in their lives....(read an extra bedtime story, play for 5 more minutes when the kids ask, make time for your significant other.... and just REALLY enjoy and be thankful for what you have)....as that's our plan for the day as well. We really appreciate everyones love and help...(we also want to thank Chris and Dianne for watching the girls for us yesterday). Today is a good day.....

3rd surgery update

Benjamin made it thru surgery fine. His hernia was VERY large. In fact, there was not much diaphragm to work with, but there was enough to sew in the patch. Dr. Saito said she has done 15-20 of these surgeries and Benjamins is either the largest or second largest she's actually repaired. (Her partners have dealt with hernias this size though). Benjamins liver and spleen are also quite enlarged, so when attempting to put the abdominal contents back into the abdomen, a patch was required there (on the outside) also. Basically his incision is at least 6 inches across his abdomen, so pretty much across his entire belly, with a patch that is in the shape of an eye over it to allow for the abdominal contents to be covered up. The plan is to slowly close this patched area every couple days until it is fully closed. He also has 2 drains in his abdomen to allow any extra fluid a way to come out. His art line that was placed during surgery is already not working, so they attempted another one, but it was unsuccessful. They will be attempting another one tonight so they can draw his blood from it and monitor his blood pressure. His oxygenation is the range they want it to be and his carbon dioxide level is slowly coming down. His heart rate is the highest we've seen it yet and they are working on ways to try to bring this down. We have been told to expect him to become quite puffy in the next few days and that things are going to be rough for a bit until we can hopefully get him to calm down and settle back in to his comfort zone. He will continue to needs lots of prayers and loving....thanks for continuing to keep him in prayer.

2nd update on surgery

One of the surgical nurses just came in to tell us that they are sewing in the patch on the diaphragm. Apparently, it took longer than they thought to get everything out of the chest cavity. He is being transfused with some blood products....not exactly sure whose, but it was from one of our friends who donated. They really can't tell us anything more than that right now, but they said if they are still working on him at 5:30pm, they will come in to update us the progress at that point. We will try to keep you posted.

Surgery update

Well, Ben is currently in surgery. It is about 2:50pm and they are just getting started on the hernia repair. This could take anywhere from 1 to 3 hours. Earlier today, prior to surgery, they tried an art line in his right ankle, although it worked initially, the line slipped and so they knew another attempt would be required. He received boluses of pain/sedative medications to attempt this line, and he did really well with it. Before he got those doses, he was wide awake for some quality time with us this morning. We were able to hold his little hands and look into his eyes to give him a pep talk before all of this today. Our pastors came up to say a prayer with us this morning and Bernie and Connie from church came up to visit also. (Thanks for bringing us drinks and food). Currently we are sitting in the conference room with my mom and dad, Dave's mom, Laure, Kristy and James (Ben's best friends daddy). They told us so far, they have a successful art line in his right wrist and they have placed a broviac line in as well. We will attempt to give more updates as they come. Thanks for the continued support and prayers, keep 'em coming! Kelly

October 19th - Surgery ?

Well, Benjamin has continued to be stable with just a few episodes where his oxygenation has fallen for a brief time to lower than we would like, but as I said, he recovered, on his own quite nicely. He was a bit fluid overloaded which may have contributed to this, so they repositioned him and increased his medication to clear more fluid and then his oxygenation improved to some of the best numbers since being on ecmo. Ben's surgeon, Dr. Saito, is tentatively planning the repair of his diaphragmatic hernia for Thursday of this week if he continues to stay stable or improve a bit. After that, we will be in for a more tenuous period again as the surgery itself will be a big stress for him....and the recovery as well. This is not a cure-all, and we are in no way out of the woods when the surgery is completed. This will simply remove the abdominal contents from the chest cavity and allow the lungs and heart the room they should have had in the first place. Since his abdominal cavity hasn't had these organs in it, this will be a literal stretch for the abdominal portion of his body. Since baby's belly breathe quite a bit, this could initially make it harder to try to breathe as it could then put pressure on the organs that are normally in the abdominal cavity. He will also most likely take on quite a bit of fluid retention from the surgery as well....these things along with the pain from the surgery will all be stresses that could potentially affect him. I will try my best to update everything as often as possible, but as you can imagine, being with Ben will be a main priority. Also, if any status changes occur even right before the surgery, it could be postponed. Please continue to pray for a safe surgery and fast recovery for our little sweetie. Thanks, Kel

CT scan results

Well, today we had another sit down with the doctors. This time it was to go over the results of the CT scan. They did not find any evidence of a brain bleed on the right side which is wonderful because as of last weekend, we were told there was something suspicious on that side also and that wcould have been potentially devastating for Benjamin. Today they did confirm that he had a bleed between the brain and the skull, which they had suspected. The good news is that it is not significant enough to require surgical intervention or any type of reservoir or shunt...this should resolve on it's own over time....He does however have evidence of damage to the brain on the left side that may result in motor and sensory issues for him. Since the damage is on the left side of his brain, this will affect the right side of his body...this is the area that presented most of the movement when his seizures occurred. He will most likely be requiring a lot of therapy to help him with his coordination....but we are still very positive about this news. Considering how bad the results could have been, we feel very blessed that more area isn't involved. There is a great resiliency about babies that we as adults do not have...they can recover much more from injury like this that an adult could ever hope to. We are hoping for the best possible outcome for Benjamin, and still praying for a miracle, (because as any true believer knows, God can intervene at any point), but we will not know how Ben will actually be affected until he is older....seems that will again be determined by God and Benjamin as they seem to call all the shots...(and a lot of help from us). His blood gas after his move to the CT scan was actually the best he's had since being taken off ecmo last Thursday. He is also in isolation currently as of today. There is bacterial growth in his endotracheal tube that could potentially be dangerous to the other babies in the unit....he is and has already been getting treated for this. We should know more about this in a few days when the full cultures are back. For now, the plan is to continue to keep him stable and then provided no other major hurdles present their ugly heads, we should be able to start talking about surgery to repair his CDH soon. As always, please keep him in your prayers....he is such a little fighter.

CT scan

Just a quick update, he made the travel to and from the CT scanner fine. He has recovered nicely. He had one dose of a paralytic and 3 doses of sedation, and the little stinker still popped his eyes wide open during the CT scan. One of the nurses remarked, 'he's and ox!!' I'd say I have to agree. We are now anxiously awaiting the results of the CT scan, they said they definitely see something, but are waiting for neurology to give them the actual results. Keep praying that it will be minimal. I'll try to update later. Kel

Happy Birthday Benjamin

Happy 1 month birthday baby!! Benjamin has been behaving pretty decently the past few days, but don't tell him that....that seems to be when he starts to misbehave again. Our little sweetie has a VERY big day coming up tomorrow. He is currenly scheduled for a head CT at 12:10pm to assess the severity of the brain bleeds that resulted most likely from being on heparin while on the ecmo machine. We are simply asking for all of your prayers for a miracle...the move to the CT scanner is going to be a big production on it's own and is quite scary for us as well. They will have to take his IV tree, his nitric oxide, and will have to be bagged on the way to the scanner, then they will attempt to do the scan, but as usual, Benjamin is the boss, he calls all the shots. They are taking him up to the PICU to do the scan instead of downstairs, that way if we need any assistance it will be most readily available. I would also like to thank everyone for continuing to pray for our little baby and ask that you continue to. I will try to post a birthday photo later for him...after all, this is a pretty big milestone for him.

October 13th

Well, yesterday was another rollercoaster ride. When we got the call his numbers weren't recovering like they should, we were again very nervous and concerned about his status. When we arrived at the hospital, there were 2 members of our church family there along with my parents to greet us. Connie and Bernie (Bernadine), were the members of the church family who came to visit. They came to show their support and to also reiterate to me that everything concerning Benjamin is truly in God's hands and that no matter what God's will is, He will make sure we have what we need to get through this. They prayed with us and also visited with Benjamin. His numbers did stabilize back out again and then later in the afternoon he opened his right eye for us again...(the left one was still quite swollen from being on his belly for the past few days and laying on that side)...that was pretty amazing. It was the first time he had opened his eyes since last Wednesday night before he came off of ecmo. He also was moving quite a bit and grabbing our hands and responding appropriately to touch and stimulation. We are still so proud of our little guy, he is such a fighter. They flipped him on his belly again this morning at about 4:15am and the plans for today are to flip him on his back again later in the shift to help with swelling, etc... and possibly wean a bit on his ventilator settings if surgery is ok with it (the surgery Dr's call all the shots with his care). His ventilator settings are pretty maxed out right now, so if he can tolerate it, they want to back off a bit. I'm praying he will allow them to do this and will stay stable. I'll keep you all posted as much as I can on his progress. Luv, Kel