Looking Good

Caleb continues to do well. He keeps breaking through his sedation. Last night he was awake doe about 30 minutes until he got a little bit agitated so his nurse had to give him a bolus. His eyes were open wide, they were a bit confused but as he looked at me I knew he wanted to be held so I stood up and wrapped my airs around him to give him the sensation even though I could not truly hold him.

He has had 2 greats days in a row so they think the antibiotics are finally killing off the pneumonia. They decided to wait until tomorrow the stop the paralytic and I am just find with that. He may have a leak around his anostamosis(sp) but surgeons don't seem to be too worried. They said these primary repairs often have leaks and they should heal on its own.

Friday Caleb is suppose to go in for a dilation and his fundo but it may have to put off for a few days because of the pneumonia. I get to finally hold him this week after 4 weeks so I am SO HAPPY.

But sadly some babies aren't doing as well as Caleb and baby Bryce died yesterday. It was absolutely horrible, I could not imagine losing Caleb. Donna and Demosio are doing well and I hope that you will add your prayers with ours as they go through this very tough time. It is hard getting close other parents and then have the outcome be not good.

Donovan is doing well. They started waking him up yesterday, such a cutie he is. Gracen has a surgery date of December 15, I know his parents are very relieved. I am not sure where they get their patience from, they have been waiting so long and I am so happy their day is finally coming! GO GRACEN!!!!!!!!!!!!!!

Joel gets back on Wednesday and I CANNOT WAIT!

I hope everyone is doing well. Though we are consumed by what is going on with Caleb, our thoughts and prayers are with you!

Ernestine and Caleb

So Much To Be Thankful For

We have so much to be thankful for so I made a list:

1. Heavenly Father Who has given us the strength to over come and endure to the end
2. Our Baby Caleb, who has been our bright spot since we found we were going to have him.
3. Our families and friends who has showered us with love and support
4. The church, that has offered us prayers and support at ever turn
5. Our health
6. Our marriage
7. Our little house, I have been appreciating it so much more lately
8. Buddy, I miss his excitement
9. The doctors and nurses caring for Caleb

WIthout all these things and more, I don't think I would have gotten through this. Joel and I are strong. Joel especially, I am in awe of strength, faith, and resolve. He is the strongest man I know. I don't know any man who would have or could have handled all this the way he has.

I love you sweetheart!

See you on Wednesday!

Love always, Ernestine and Caleb

Still Sleeping... Well Mostly

Caleb is doing well today... He had a few rough days where his heart rate was really up high, his blood pressure was up. They kept giving him bolus' but that just was not working for him. They then started sending off blood work and things including a culture from his lung secretions which came back positive for pneumonia. The great thing is that they started giving him the necessary antibiotics for it before hand so he has five more days of it. His symptoms have already resolved themselves and he is doing amazingly well. His heart rate is 128, bp 88/49, O2 SAT is 96% so he is sleeping and having a GREAT DAY!

I must just say that I am so thankful to be here is Boston. The Church here has been AMAZING, they have been there every step of the way providing support and meals to us. Just today I walked off the elevator and there was a member coming up to bring me food, it was Divine intervention because I was starving LOL! The young women made him a super soft blanket, and the primary made him a TON of cards, which we will put up when Caleb wakes up. The Bishop here is an amazing man and I love talking with him! I am grateful to have the church here with me.

Joel had to go home to take care of stuff and he already misses Caleb... He will be back to visit in 2 weeks and then come for Christmas as we were told to expect to have Christmas in the Hospital. It sucks but at least Caleb will be well and awake, though we will not officially celebrate until we get back home. Oh my how I miss our little house in little Wakefield, I even miss Buddy, stinky and all!

Thanks for all the prayers! Hopefully we will get to see you all close to the new year!

Caleb sends is love!

Ernestine

Return to Surgery: Update Final

Well Caleb returned from surgery around 7pm yesterday. He is repaired however it is still very tight so they have to keep his chin on his chest for two weeks so he will remain sedated. He is still strong and healthy so this should not be too much of a hardship.

It is so hard to see him still sedated though. We are trying to see it as he is now on the mend. Once this heals they should be able to begin waking him up. More excitement mixed with trepidation. Ernestine should be back shortly. I'm sure Caleb will enjoy hearing her voice and she will be sooooooo happy to see him again.

Love,
Joel and Caleb

Return to Surgery: Update

The Liaison came by and announced they are performing the anastomosis(sp?) so Caleb is getting his repair. We are scared they might be trying to force it together and wind up like his buddy Donovan who ended up needing a piece of bovine tissue to reinforce the repair because they were pulling too hard. We are also hopeful that Caleb pulled some more miracle growth and should not be under too much tension.

Cross your fingers and pray that we get a good outcome from this.

-Joel, Caleb and Grandma Liz

Return to Surgery

Well here we go again. They are going to try to repair again today. They took Caleb and hour and a half earlier than planned so Grandma and I got here just in time to walk him down and kiss him bye. Poor Ernestine it was 3:30am her time and I rang her phone a bunch so she could say love you and be strong before they whisked him off.

I'm not really very confident that he is ready to repair today. As Dr. Jennings stated Tuesday that his gap had not really changed from the 1cm it was at last attempt. They put him under strong traction Tuesday so we can only hope and pray that the tension produced the nearly miraculous grown from the beginning.

Love,
Joel, Caleb and Grandma Liz.

Caleb is doing well

Sorry I did not update after Caleb got back from surgery. The Surgeon tells us they put him under internal traction and that with the tension the ends meet but they can not repair under tension so they are giving him till Thursday then will attempt again.

Today is doing well and he is feisty. When grandma and I came in he started moving and opening his eyes. He calmed down a bit after I let him see me and talked to him a minute. He is definitely aware of us and wants to wake up and play.

We all are praying that he will grow enough this time.

Love Joel, Caleb and Grandma.

Surger Update

Well the Liaison tells us that they are again unable to repair Caleb. They are putting internal traction in place. They might try again Thursday. We still have a couple of hours before they close him up and we can see him.

Surgery Begins

Well today is Caleb's big day. The doctors are confident that this time they will be able to perform the repair. It will be another hour or two before they are ready to begin the actual surgery.

We are excited and scared and nervous all at once. Caleb's grandma (My mother) arrived yesterday to support me and Caleb today since Ernestine has to be in California for her mothers funeral. Due to the vagaries of the Airlines she will not be able return till Sunday. Caleb has sooo many folks praying and rooting for him I know he will be strong and surgery will have good results.

Sad News...

Just a brief update as we're not up to much right now...

Ernestine's mother Passed this morning sometime around four. Our prays and our love go with her. I'm at a complete loss for what else to say. I know there is so much more but I can not put it into words.

Ernestine was doing well, when we spoke, as well as possible all things considered. She is safe and her family and Tammy are helping her there out in Cali.

Caleb is doing well and opened his eyes to see me again today. His stats are solid the pressure spots are healing up with a little more attention to positioning so he is comfortable. Surgery is firmly scheduled Tuesday. Ernestine is scheduled for 6am arrival so should be here for it. *(Correction: Ernestine is now returning Thursday so my mother will be coming up to keep me company during the long surgery wait.)*

The blog will likely be quiet through the weekend unless something else happens.

Love,
Caleb, Joel and Ernestine.

Ernestine is on her way

Ernestine is on her way to California to visit her mother. Please pray for her mother and for Ernestine to have the strength to cope with all this and for her safe journey.

Caleb continues to do well. He has a few of the things we were afraid of with the invalid state but overall they are very minor. He has a tiny bit of skin damage where the catheter presses inside his diaper. He is losing his hair more quickly but that was happening already so it may be unrelated.

Prayers for Grandma Loretta

Unfortunately my moms health has taken a turn for the worst. She is in the hospital and is on life support. I sadly have to leave Caleb tomorrow to go be with her. I know that know matter where I am my heart will be in the place where I am not. I need to see her though, I would never forgive myself if I didn't. I feel like I am abandoning Caleb but his dad will be with him. I will be back on Tuesday morning 6am, they are thinking Caleb will go back to the O R on Tuesday or Wednesday, so I am thankful I will be here for that. If I cannot then Grandma Liz will step in my place and I know she will be as fierce as I am with the Doctors and nurses if need be.

Please Please pray for her. It is so crazy how all this stuff is happening to us at once but we are enduring as painful as it all is of faith is strong and we will never yield!

Ernestine

A Special Request

So I decided to put together a book of thoughts for Caleb from the people who have been thinking about and praying for him. So if you do not mind emailing me a picture of you/your family with a thought, message, prayer, quote or scripture I will combine everything in a book for him and read them to him everyday and show him the pictures, I think he needs to know that there is a whole host of people out there who love him and who are praying for a speedy hospital stay. I would like to start immediately get started :) you can email it to me at e.davisonjoines@gmail.com.

Thanks everyone,
Ernestine

The Plan

I spoke with Caleb's Neonatologist today and she went over Calebs plan with me. Thursday he goes back down to Radiology for an espogram, if all is well on Friday he goes back to the O R for repair. Hopefully, all will go well. I am trusting in the Lord that it will turn out the way it is meant too.

The last couple of days have been easier. Tammy came to offer so extra support and it has really helped! She is actually hanging out with Caleb right not while I get stuff moved in to the Devon Nicole house and Joel is waiting for AAA to jump start our car. I have no idea how it happened but the battery is SOOOOOO dead! Sometime in the near future we will talk about all these things and laugh.

Thanks Liz for ALL of your support, you are doing SO much behind the scenes and I am TRULY grateful. Thanks for the message Megan, it made me feel a whole lot better. SOrry I couldn't talk when you called I was just so upset. Thanks Tam, for coming all this way to help us! Thanks to all the people praying for us!

Special prayers for baby Donavon who is SO cute, who is having the same procedure done as Caleb, he too was unable to be repaired on Friday and is still sedated. It's funny they both openned there eyes today, which they were not suppose to do! Prayers for Gracen who will be having surgery in about 3 weeks! Go Gracen!

Thanks Guys!

I FORGOT...

In everything that is going on Caleb is 4 months old today! It doesn't seem like he should be that old!

So Very Hard

Yesterday was probably the hardest day I have had since Caleb was born and I actually learned a few lessons. After talking to the Docs, well in my case NOT talking to the Docs I was so upset I had to go off and be by myself. It was kind of like I was in mourning, I needed to mourn the fact that I did not have a perfect pregnancy, the perfect delivery, the perfect baby, the perfect anything, nothing happened the way I thought it should, the way I planned it. I am finally realizing that though Caleb WILL eventually have his primary repair, life STILL wont be perfect, he will be able to swallow and eat normally but he will ALWAYS have Esophageal Atresia, we will always have doctors appointments associated with this condition, we will always have to be careful about what he eats and how big the bites are but that is SO OKAY. In the end what most matters s that HE IS Here and he is my baby and I love him more than my own life. I would do anything for Caleb and Joel, they are the lights of my life but I know that no one knows or loves them more than my Heavenly Father.

I realized yesterday that I need to rely on Him a lot more than I have, I hadn't thought so but maybe I was putting more trust in the Doctors and not enough in God. I know that they are His instruments and no miracle happens without His hands.

I must say the Doctors had me so angry yesterday. On Monday they had said he was ready, the 2 ends were crossing, and they stopped inflating his balloons, on Thursday the Radiologist said the inner lining still had a small gap but the repair should still happen and yesterday they say a few more days. I feel bad because I was not very nice to them and I could tell they were disappointed as well and they were sorry that they had not discussed this possibility with us because they were sure all would go well, so I am trying to exercise forgiveness but if one more person tells me to be patient I am going to scream because I feel I have been very patient, and I wonder how patient they would be if their child was in the same position.

But I will exercise patience because i do want the best outcome for Caleb. He deserves it. And I do have faith, I know this s all happening for a reason and as soon as I find out what that reason is I will let you all know.

I must say that Joel has been absolutely fantastic! He took complete care of me and was by my side when I was ready to jump out a window. I love that he can be sensitive and strong at the same time. He is an AMAZING man, father, and husband, I wonder how many men could or would do as well as him!

Thanks for all of you prayers!

Ernestine

The Good and the bad

Caleb is out of surgery now. The good news is nothing went wrong and he has grown allot. The bad is that they were unable to attempt repair today. They want him to grow a little more before they do.

They had to rebuild the traction system. Part of the reason he didn't make the connect today is that his bottom pouch had reached the exit site of the attached sutures so pulling on them any more would not have put tension on the pouch. Rebuilding the traction system will allow him to get good stretching and hopefully we will see speedy growth like last time.

We are both disappointed but we know that these choices are best. If they had tried to force it today he would have ended up with months and months of repair work to correct it so this is the best choice even though it is the hardest choice.

We thank God for doctors that are wise as well as skilled.

Love,
Joel, Ernestine and Caleb

Surgery Update 1

Joel Says:
Well it is 11/06/09 12:30 and they are finally prepping Caleb to go down to surgery. They asked that only one person go with him as there will be a crowd to handle his drips, vent ect during transit so we sent Ernestine with him and I'm waiting down in the OR waiting area for her to join me and the and the big wait to begin.

Today is the Day1

So tonight we finally got confirmation that Caleb will be taken into the OR at 9 am today. It still looks like there is a small gap less than a cm but they seem confident that everything will go well!

Please pray for us we will post as we get up dates!

Lots of prayers please!

Ernestine, Joel, and Caleb

Unwelcome news.

Well we finally spoke with Dr Jennings and he explained to us that they will have to stick with the Friday surgical date as Dr Foker and his radiologist are not available till Thursday and Friday. They need the radiologist to do a special study to ensure the lining of the esophagus overlaps not just the outside, that gets done Thursday. On Friday Dr Foker is available to assist in the attachment surgery. They want him to come as he has developed a new technique for attachment with less scarring. So we will have to keep Caleb under sedation till Friday. We are a bit distressed at the additional delay but since it looks like this really is the best choice we are practicing patience.

Caleb's nurse told us she was manually suctioning his pouch today and reached the end of her 17cm tube without hitting the bottom of his pouch. It was 14cm, maybe a bit less, from his nose to the bottom. He's growing like a champ. The poor guy is so puffy now it's hard for us to see him like that, but the nurses tell us it doesn't hurt him and he'll work the puffy out in a couple days after he is allowed to be active.

So in brief Caleb will not get surgery till Friday and mom and dad are trying desperately to endure.

THE GROWING IS COMPLETE!!!!!!!!!!!

So we went to the Bishops house for dinner tonight and got a very surprising phone call from Caleb's nurse. Of course I was a little bit scared but she had fantastic news! Caleb esophagus in now over lapping!!!!!!!!!! Which is absolutely positively CRAZY!!!!!!!! Everyone is in a state of shock! We have to wait to see Dr. Jennings tomorrow, no one can imagine him waiting til Friday to do the repair if Caleb is ready now but of course they tell us he may so don't get our hopes up! But of prayers are being answered and Heavenly Father is working all sorts of miracles! We leave it in his hands!

We have all of you to thank all the prayers you guys have sent up on our behalf has really enriched and blessed us! We have SOOOOO much support. The church here has been awesome offering help and support at every turn. On Friday all of us were able to get blessings which lifted all our spirits. The temple was amazing and only reinforced of belief and love for our Father in Heaven!

More tomorrow as soon as we hear from Dr. Jennings!

Mom and dad take a break

Well this Saturday mom and dad took a break to visit the Boston temple and renew their spirits. They had a pleasant outing and took some time for a date night as well.

It's a good thing they got to renew a bit as tonight has been a little rough for me. I'm tired of being asleep so I'm fighting the drugs. I keep waking up enough to wiggle my feet and my hands and shrug my shoulders. The nurses have had to give me extra doses twice now. Hopefully the surgeon tomorrow will tell them to up my drips so I can't hurt myself. I had a little desat spell too so the nurses had to suction my vent tube extra. My nurse tonight also forgot to turn me on schedule so mom had to get tough on them. These Boston nurses had not seen momma bear yet so were a little shocked by it. Momma is taking such good care of me and making sure the nurses don't get too busy and forget which is good as the NICU here has gotten so busy they can not allow a nurse to have only one baby to care for even one who has such a big job as taking care of me. :)

I'm resting well and growing so fast thanks to mom and dads attention and everyones prayers. I only have one more centemeter to grow! The surery fellow whose name is Alex was quite surprised that I'm still growing so fast. I'm growing so fast they have to tighten my traction three times a day! So far my growing looks like this: Tuesday 2cm, Wednesday 0.5cm, Thursday 3mm, Friday 7mm... Since my gap was only 4.5cm when they took me to surgery I only have one cm left! Mom and dad were really excited. I can't wait to finish growing so I can wake up and play with them again.