So Far So Good

So Caleb is so stable and doing so well they have decided to wake him up a little bit! And I just saw him move ever so slightly since Tuesday. He even moved his head a bit. He reacts to our touch which is awesome.

We also got some excellent news from Dr. Jennings in just 2 days of stretching Caleb has gained 2 and 1/2 cms!!!!!!!!! He did warn us that the rest of the needed growth may come slowly but we are optimistic that he will need the shortest time! They are also going to be start inflating the balloon 3 times a day now. Thank goodness the other Drs did not attempt to repair him. If they had it would have been much harder to get the results we are currently getting.

The other little boy who got here on Wednesday and had surgery yesterday is also doing well. Gracen (I have been spelling his name wrong) is doing well.

We are actually doing very well. Even staying in the hospital dorm room has not gotten old yet. I actually like it because I have 24 hr access to the little man.

Please continue to pray for us. Those prayers are keeping our son healthy and safe and keeping us sane!

Love you guys!

Ernestine, Joel, and Caleb

Evening Update

Well today was pretty routine after the trauma of last evening. Caleb looks much better today and his stats are completely stable and calm. The calm stats indicate he is not in pain or excited and stable means his health is good. They started him on intravenous nutrition as his digestion has not "woken" up yet. Apparently surgical anesthetics cause the digestion to stop moving things along for awhile. I read him several books and Ernestine filed his nails. I also started massage on his limbs to help keep things moving in his extremities as the muscle relaxers slow down blood flow and inhibit lymph node function. If I remembered to bring my headset we'll make him a CD of us reading stories for the nurse to play as well as his night night and church music cds.

Morning Check

I just left Caleb and he is doing well. His heart rate was in the low 140s except when they repositioned him and picked him up for his daily xray to check growth of his esophagus. They were able to turn down his oxygen to 27% which is good. 21% is room air. They also were able to reduce the number of breathes the vent takes for him. He is now getting 24 breathes per minute and his stats are really good. He has another really great nurse today.

All in all Caleb is doing very well! He just looks like he is sleeping. His color is great and even in his sleep he is breaking hearts! His respiratory therapist is so in love, she is very sweet.

There is another baby preparing for surgery in a couple of days so I asked that everyone pray that all goes well for her. Special prayers for Gracin as well!

Love you guys!

Super hard end to a long day

SO Caleb got back into his room at around 7:30 and they let us go in immediately. I was so not prepared for what I was going to see. It was so hard I had to leave for about 15 minutes. He is vented, he came back all taped up including his eyes. He has all sorts of things coming from every part of his body... chest tube, central line in his groin, folley cathether, a ripogual, the two devices which are inducing the growth of his esophagus.

It was also hard because they told us he would be completely paralyzed, movement would not be a good sign because it meant he was 1. waking up and 2. in pain, he twitched just ever so slightly and of course i noticed it to which they said oh no hes not moving but then he moved again and they say him and immediately went into action getting him the drugs he needed! They were so fast and his nurse tonight is outstanding besides that she was able to make me laugh which was need. There are some really great people here looking after him. It is so crazy how the doctors go by first names, there are no egos here just everyone working together to get the best outcomes possible.

Joel is exhausted to I made him go back to the parent sleep space to get some rest. He has been up since 5 am and of course worrying the hole time but being incredible strong making sure I was taking care of and rested. I can imagine how I could love him and Caleb more than I already do. I am so grateful to Heavenly Father for giving them both to me. I f Joel was not here with me I would fallen a part and I know Heavenly Father knew that and made it possible for him to be here and I thank Him.

So if you can handle it I have posted some pictures

Update #5 They are closing!

It looks like the end is in sight! There are closing up and Caleb should be back in is room in about an hour... I cannot wait to see my baby... 9 hours later and we are almost done yippeeeeee!!!!!!

We will post one more time tonight after we see him and know he is okay... Thank you everyone especially to Grandma Liz!!!!!! We will call you shortly!!!!!!!!!

We love you!

Ernestine, Joel, and Caleb

Update #4

Joel Says:
Thanks for the encouragement and prayers. We just got the update that they are in the process of installing the sutures for stretching now. I'm scared to see him after though. He's going to look like something out of The Matrix. He will be on a ventilator, I.V. with three medicine drips, g-tube feed, continuous suction, have a chest drain, tubes coming out of his back and sutures coming out his back wrapped around the tubes. He will of course be drugged insensate and have a muscle relaxer to prevent movement. If he could remember this it would be the most miserable week of his life but at least it is only a week not six months to three years.

In the end I think Ernestine and I will suffer more than he will. This waiting is so hard. The only thing holding us together is the support of the holy spirit. I have not gotten the sinking feeling in my stomach that would indicate something is wrong just the warm feeling that all is well. Without that I would be a complete nervous wreck pacing in circles and generally losing my mind.

Again I want to say thanks for your support and prayers.

Update #3

Which I totally missed because I was in the cafeteria! Joel got to met the great Dr. Foker, who is very old and I am glad he pioneered this procedure but am extremely happy he is just watching and coaching! So Update two was not completely correct. There were two scope procedures the first one was fine the second on showed a very small mound on his trechea which indicates a fistula. They wont know until the go in and look at it. If it is a fistula they will be able to just repair it.

So they have just now started the big surgery. But they assured us that Caleb is doing very well. He is tolerating everything very well and there are a whole team of about 10 doctors in there taking care of him.

One of the other families that are here just came down to check on us. They are SUPER sweet people from South Carolina. There som Gracin is so cute I think there is some so special about EA babies. Another EA baby arrived yesterday. We have been so wrapped in our stuff that we have not met them yet.

Joel is doing very well and I just sent him down to eat. The best thing is that there is a huge famil waiting area and the provide pillows and blankets so I will be taking a nap :)

More to come I am sure.

Update #2

The first part of the surgery is done! His scope is done and he has his central line. The BIG surgery has began... This is suppose to be the slow part as they have to carefully move the heart, calapse a lunge and get to esophagus!


I am including in the post some of the pictures from Caleb's med flight!

Here he is leaving Norfolk














Here he is on the plane!














Here he is arriving in Lexington, Mass

Caleb is in the OR! Update #1

So they got a late start today he didn't go down until about 10:30 so he has been down for just over an hour. They are going to be updating us every 90 minutes. The actual sutures wont be put in for a couple of hours. They have a million things they want to do first.

We walked with until we couldnt walk anymore, he was complete awake looking at us with those big brown eyes as we were starting to crumble. I think he was wondering why mommy and daddy kept kissing him, well mommy got way to obsessive about it!

I am so afraid but I know everything is going to be okay. Calebs surgeon is the sweetest man, he came up to see us before surgery, he gave me a pep talk and asked if I had any questions of concerns. I had no questions just a request that he take the best care of Caleb that he could, he he would only do what he would do for his own children. He then assured me that if there were any changes to plan he had went over with us he would personally come out and talk to us first.

I was seconding guessing our decision to come especially with all the other stuff going on in our lives but I have NO doubts that this is where we should be right now. I pray for Caleb every second as well as Drs Foker, Jennings, Linden, Mogi, his 3 anastegeologists! Please add yours to ours!

We love you guys and thank you for you your support. I will update when we get news!

In the meantime here we are getting in out last bit of loving for the next 5-10 days!

Baby Torture Day!

So today was officially baby torture day! Caleb had an ego done on his heart which is completely painless right??? For this procedure he was sedated but for his upper GI thing which has a tiny pit of pain associated with it but is way more complicated he got NOTHING!

I made a big mistake of deciding to stay in the room for the procedure, where took out his g tube stuck a catheter in there and then dye and barium. He has a good amount of esophagus down there so they were very pleased. They then put dye into his upper pouch to measure distance... Without stretching the distance between the two pieces is 4 cm, so once them distance is 2 or less than we can have our repair in what should be less then a week!

So of course I we are super excited. He has been sleeping since this afternoon so we are going to go wake him up for his bath and story time!

So I will update after surgery tomorrow!

Remember to pray for my baby tomorrow!

Ernestine, Joel, and Caleb

Too Cute!

Okay even though there is so much to update I decided to do a fun post for now. Grandma Liz just sent these pictures to us and I had to show the world! We took them on Saturday since Caleb will be sedated on Halloween we decided to celebrate early. Tell me he is not the cutest monkey in the world!

We Are Finally Here!

As most of you know we arrived safely in Boston, Joel actually beat Caleb and I here by three hours. Caleb and I got to ride on a jet which was really nice but I think I will stick with full size planes!

Arriving was awesome! Every nurse in the NICU knows what EA is and there are special nurses who have been especially trained to take care of these babies before, during, and after the repair surgery. It is so funny how Calebs spirit captivates the people he encounters. After 2 minutes with the charge nurse who is also on the EA team, Caleb had her wrapped around his fingers and she immediately sighed up to be his primary nurse which I was excited by even after we gave her the third degree and Joel kept giving her instructions on how to treat Caleb at on point when she was suctioning Caleb, Joel tells her to "STOP, he needs a break." She was so nice and said "dad why don't you show me how you guys do it." She was so open to learning about Caleb and really wanted to do things our way. The nurse was so funny one of the fellows and surgery residents wanted to do all this stuff to Caleb and she told them NO, I could not believe it. She said he had had a long day and needed to rest so the only thing that would get down right then was the blood draw, which she got on the first try, the placement of his continious suction which is not a salem sump and works a hundred times better, and his MRSA screening. Later he had some xrays done, both chest and stomach.

Everyone was so surprised how well we knew Calebs history and how familiar we were with the procedures Caleb is about to undergo. They commended us on being able to take care of Caleb so well at home and were shocked that he had never developed pneumonia because it is very commom with all those secretions.

So today is a busy day we have to see cardiology, we will get to meet DRS Foker and Jennings, and he is having something that is like an upper GI but isnt an upper GI. I forgot what it is called.

The nest news was that his suction cath went down 13 cms!!!!!!!!!!!!!!!!!!!!!!!!!!!! That is AWESOME. When he left the NICU at CHKD it only went down 11! So their has been growth.

I have lots of pictures but cannot post them until I find the ubs cable which is some where in all our stuff!

Joel and I are doing very well. Calebs seems unphased! Tomorrow is the big day!

More to come later after all the testing is done

Ernestine, Joel, and Caleb

Everything is a go!

So we finally got confirmation that the insurance company will be allowing medical transport to Boston! We will leave sometime around 8:30am and be in Boston way before lunch time. I will be sure to take plenty of photos and they will be posted tomorrow evening after Joel fixes what I messed!

Don't forget to pray for Caleb at 7:30 am EST. For all the West coasters please be sure to pray when you wake up!

We love all you guys and we are SO grateful for your continued support!

With love,

Joel, Ernestine, and especially Caleb

Deflated!

As Caleb gets better and better, he is teaching me to be a stronger person. Just as I am about to throw in the towel and just say I give up, I think of him and all that he must endure and I realize that what ever pain or discomfort I am experiencing pales in comparison yet he is the one who gave me a BIG gummy smile as I left the hospital tonight. As I visualize that smile that is forever imprinted on my heart I know that what ever challenges we face we face them together as an eternal family surrounded by Heavenly Fathers love. Which was evident from a visitor tonight to whom I can simply say thank you.

Someone sent this following article to me and it simple describes how I feel which I could never before express as the mommy of a special needs child. Juliana can you relate to this???

Welcome to Holland
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans: the Coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills – and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy ... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very, very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you many never be free to enjoy the very special, the very lovely things about Holland.

Great News!

We just found out the insurance company has approved everything that is a HUGE weight off our back! Though they keep changing our mode of transportation. Once again they are saying that they want to air left him out because they don't want him driving that long distance with his airway issues, we will know for sure tomorrow.

Caleb is a champ he is doing so MUCH better and has actually been awake today, looking around, and playing. One of his nurses came back today and commented on what a different baby he is! Once again he has gotten his nurses to fall in love with him! Even his nurse practitioner Julia has been up to see him from the NICU, yesterday when she came he was ALL smiles even though ALL day all he gave me were a bunch of frowns and cries. Come to think of it when his Grandma Liz came to visit he smiled at her... Caleb and I are going to have to have a long talk!
Here are some pics of the little man that I took today! He looks SOOOOOO much better!

His giraffe blanket is like his favorite! Thanks Auntie Tata!

Caleb says hello and thanks everyone for praying for him!

Who runs insurance companies?

SO the insurance company wants Caleb to be released because they say he is fine. However if he is released he will not qualify for hospital transport which is why I think they are pushing for him to released. His fever is down but he is still not maintaining his STATS the way he should be. They still have him on O2 which qualifies him to remain hospitalized. All the drs are working very hard to get everything approved so hopefully Caleb will have door to door service. They are saying no that they don't believe the life flight will be approved so they are pushing for ground transport. At this point I could care less as long as he gets to Boston safely.

So once again his surgery date has changed because of all this mess he will be admitted this Sunday and go to the OR on Tuesday.

I came home tonight to get some sleep but left Caleb in the hands of his daddy, they are doing great though I did warn the nurse that once Joel is sleep that is it! SO she is suppose to leave his door open and check on him frequently.

I have been getting us all packed up. I hope I remembered everything as I wont be back home until Caleb is... Of course I left everything wreaked, I hope Joel will take pity on me and clean up when he is home tomorrow and when he returns back home from Boston.

I am SOOOOOOOOOOO tired I hope I get up by noon because I have so much to do before getting to the hospital in the morning!

Please continue to pray for us!

Big BIG hugs,

Ernestine

My Poor Poor Boy

So after a fun visit at grandma's on Sunday where Caleb was kind of off, we went home where he was very clingy and only wanted to be held. His nurse came and after about in hour she told me he was desating so I went up stairs to check on him and his O2 was going between 82 and 90. So I woke him up and they went up to about 96. As soon as he would go back to sleep he would go back down so we started out for the hospital. We ended up needing to stop and call an ambulance because his O2 went down to 77 and his lovely nurse grabbed an empty can! Lets just say she will no longer be working at Casa de Joines.

Anyway to make a long story short Caleb is back at CHKD as a resident and the drs both here and in Boston are pushing for him to stay here until Tuesday, a week from today and then be medically transported to Boston Children's, which I am starting to agree with because what if something happens on the road??? We wont be able to find a hospital fast so better safe than sorry.

He is currently still running a temp of 102 without Tylenol. With Tylenol he goes to back to normal. His flu and RSV test came back negative so that's a plus. His chest xray show no signs of aspiration or pneumonia WHICH IS FANTASTICO!

He is sleeping peacefully, I have been with him and he LOVES to wake up just as I am falling a asleep.

I cannot wait until this is all over and his repair is done! Its funny his surgery nurse practitioner stopped by and tried to convince me not to take him to Boston but instead wait and allow his current surgeon to do his operation which she doesn't want to do for 6-12 months and from what my research says the wait and see approach never works and the esophagus never growns enough for surgery to be done without (a)using a piece of the colon (b) without it being under too much tension or (c) it completely falls and the stomach has to be moved up into his chest! I cannot say what Heavenly Father has in store for use but none of those sound very good to me SO I nicely told her WE would be going to Boston for the operation. She then told me that Caleb will be unable to be seen in their surgery practice to which I said, "thats fine." Did she really think that would make me change my mind???

T minus 6 days and we are otta here!

Caleb says hello and thanks for all your prayer!

Bathtime at Casa de Joines

This is usually the best time of day for me because bathtime means BEDTIME!

Bathtime has become daddy and son time! Joel gives Caleb his bath everynight! It is so sweet to watch.

So I hope he doesnt get made at me when he is older but he is so cute! His hair is falling out! I hope it comes back soon

Its finally time for the baby rub down!

I love the smell of baby lotion!

I have had my rub down and now I am ready for bed!

After all that he is all asleep and ready for bed................................ Or so we thought!!!!!!

He is wide a wake watching his favorite toy... His mobile. He could watch this thing for hours!

But just when my hands are getting tired here comes NURSE DONNA!

Now after beginning the process at 7:30 it is 10:53 and he is finally asleep!

And it begins

With more than a week left before we head to Boston, I decided it was time I started documenting this journey we find ourselves on. So far it has been a hard road with Caleb being in the NICU for the first 2 months of his life because of this black cloud hanging over our head known as Esophageal Atresia. I never even heard of this before Caleb was diagnosed with it on his first day of life, Caleb has a pure Atresia which happens in about 1 and 200,000 births, I am not sure how we got so lucky but I guess we did.

Caleb has been home for a month and it has been wonderful even with ER visits, his g tube came out twice, and then he got sick which was a big no no, I am just glad they didn't feel the need to hospitalize him but it has been a long 2 weeks!

Caleb's surgery will now be on Thursday, Oct 29th. We will be wheeled out just before 7:30 am. Joel and I will be able to walk down with him.

It so strange how I am both SOOOO excited and SOOOOOOOOOO scared at the same time. I completely trust his Doctors I mean it is Boston Children's Hospital it is in the top 2 of Children's Hospitals. I know he is in good hands .

From what I understand the repair happens in 3 stages. The first is the most difficult and the longest. After his first operation he will be completely sedated for 5-7 days while the Doctors stretch his esophagus. He will then go in for the second surgery which is the actual repair! Oh my goodness NO MORE SUCTION! This is the worst part of our day, when he needs to be cleared out, he hates it! The third surgery is to prevent reflux.

So stay tuned. I will be updating frequently as things will probably return to the way they were in the NICU-- cell phone turned off and by the time I leave the hospital it will be too late to talk to anyone.

Prayers will be much appreciated!