Monday, June 23, 2008

A V.I.P. came for a visit today

Elaina had a very special visitor today. Her big brother Ben came for the first time since Elaina's open heart surgery. This was a very difficult decision for me to make, and to be honest, I had to pray about it for almost a week before finally feeling good about it. It is SO hard for me to see Elaina hooked up the way she is; not only to the ventilator and draining tubes, but to see the cuts, pokes and bruises, some old and some new. I can only imagine how scary and confusing this could be to a 5 year old. I think that as a mother, I want to shield my child from these kind of things. BUT, I have now been at the hospital for 12 days without leaving, and Ben has only had the opportunity to spend an hour with me during that time. I finally decided that if Ben had the ability to see Elaina, that he would understand why Mommy had to be here instead of being with him. Ben was an only child for most of his life, and for all intents and purposes, he truly is a Mama's boy. Being apart has really taken a toll on the poor kiddo. Anyway, to make a long story short, Ben came at 1:30 and took me to lunch in the cafeteria. (Thanks Grandma for the $10!) Then we met with Joy, who is a child life specialist. She helped Ben make a "Buddy" doll and explained everything that Elaina was hooked up to. Ben was then ready to come and visit his sister. He did a lot better than I expected, but didn't want to stay very long at first. We took a trip to the playroom, he made a couple of crafts and then he wanted to go back and visit Elaina some more. It was a very positive experience, and now I feel a whole lot better about letting him have additional visits. He's going to be staying with my Mom now for a little while. He's been with my Aunt and Uncle almost exclusively since Elaina was first admitted to the hospital. On a side note, my Mom is currently staying with my Grandma who is recovering from kidney stones. Since Grandma is closer to the hospital than my house, I should be seeing more of Ben. Also, I'm hoping that in the near future I'll feel confident enough with Elaina's stability that I can go out to my Grandma's for dinner and to spend some time with Ben.

Anyway, quick Elaina update! Elaina had a very good day today! Her nurse practitioner called her "tenuously stable", but I think it was a good day. She got rid of 2 of her chest tubes, the main median tube is still in. She also got rid of the IJ (intra jugular) and her foley catheter. They started her on a couple of new medications to help in weaning her off of the nitric oxide and ventilator. She got down to 50% on her oxygen today! She did need to get a small blood transfusion this morning, and it seems to have made her look a little red - which for a "blue" baby means a little purple, but the nurse tonight is calling it her version of ruddy. They also put her NJ back in and started her feeds. She's on a high risk protocol, so right now she's only getting 1 cc per hour of Pregestimil. She had her eyes open quite a bit today and seemed to be comfortable, so all in all I feel like it was a good day. It's her first little baby steps on the road to recovery.

Now it's picture time!! What a day we had!!

The nurse last night was able to switch Elaina to a smaller crib. Perfect timing for a visit from Big Brother Ben!

Awww, he loves to pose for the camera! (She's awake looking at him!!)

Ben had to give her kisses. The only spot he could reach was her hand...

Do you see her stitches? This is just one of the many spots that will become her "medals of honor" from this visit. They had her subclavian central line here, and then removed it when Dr Hawkins attempted to do the axillary fistula attachment during her last surgery. She has a matching incision on the other side.Another one of her medals of honor. This is from the cut-down arterial line that was done before her first surgery. The line stopped working last Wednesday and had to be removed. They now have a cut-down arterial line in her other wrist. (Next to "normal" colored skin, you can tell how pink she really isn't.....)

She woke up for a little while and was looking around. She's still pretty zonked with all the sedation and pain meds. At least she's opening her eyes when you move her and talk to her.

The nurse got the best blood gas of the day shortly after this picture was taken. Way to go Elaina!!


Well, now I'm off to bed. It's actually 11:45pm. The pictures weren't uploading and it took me forever to get this done. I just had to post them though....
Thank you all again. I know I say it every day, but I know that the reason she is doing so well is because so many people are praying for her well being.

12 comments:

ssbiasutti said...

She is looking really good, Hollie! She is lucky to have a big brother that loves her so much and comes to see her. Hang in there. I would say you have handled this like a star. Can you throw some of that my way please? Stella is in NICU bed 30. I'll try to track you down sometime this week. Keep fighting, Elaina. You are doing awesome!
Sara Biasutti

Anderson Family said...

Aww Elaina and Ben look so sweet together! I'm glad he got to see her and handled it amazingly.

She truly is little tropper for earning all of those medals of honor! When shes older she can talk about how she got each one of them and they had a part of saving her life, with out proff no one would ever blieve what she had to put up with.

Shes looking so much better with every picture! I bet shes just loving the Glenn head aches. :(

We're praying and thinking of you!

Melynda and Family

Isabella said...

I am so glad Ben got to see his sissy. I know it is a hard decision to let them see their baby sister like that. I had a hard time letting our two older girls see Isabella, but in the end it was a positive experience as well. Elaina looks really good. It was great to see her with her eyes open!! I love to hear she is making baby steps in the right direction!! Praise God.
Love and Prayers Always
Megan

Vaeh's Blog said...

Despite all that she's been through in the past few weeks, she does look absolutely great!

I'm glad you decided to let Ben see her. We've had Gabby see Vaeh from day 1. She was there when they transported her from our home hospital in the isolet, & has seen her hooked up to everything with each surgery. She really seems to grasp what's going on when we explain things to her now & I think that's because she can picture how Vaeh will look in her mind.

She's on that steady path to gettin out of the hospital & going HOME!!! Always praying that she continues to improve & for you & your family as you endure this leg of the journey. It does get better!

XOXOXO

Caden said...

She looks better every time I check your blog! It's nice to see her making improvements, and from what you have described, she's making leaps and bounds! We are continuing to pray for her strength and yours.

carolyn q said...

I am so glad that things went well with Ben visiting. I am sure it felt good to have your kids together. I know it was a hard decision for you to make.
I am also glad to read that she is doing well enough to have some tubes removed and seems to be more comfortable.
I look forward to visiting you either Thursday or Friday.

Kathy said...

GOsh...I'm SO glad she's getting some milk now...that'll perk her right up!!!
Are there talks of taking the tube out?? I know that you've read about all our kiddos...so, these long intubations and this heart defect gives them very BAD lungs. So...we'll hook her up with fancy canula stickers like Isaac for her O2!!

It's amazing that she's endured all that she has...you have a little fighter on your hands!

Hey..have your immunology panels come back yet??

and the bows....that's an important thing to stay on top off..a gal always has to look GOOD!!!

You're doing an awesome job...I think Elaina is going to show us the same!!!

Lots of love,
Kathy

Jilian said...

I've been following your blog for a long time now and reading Elaina's story. I'm a doula who chats with your sister on a doula site. I also have a son who was born with a heart defect called TAPVR. He had open heart surgery @ 2 weeks old exactly one year ago. I also have a 5 yr old son and was a single mom for a few years. Our stories are eerily similar!

I think of you and Elaina and your son often and wish you well. It is such a hard road to walk. I struggled with letting my older son see my younger son after heart surgery too. I brought him in for the same reasons you mentioned. It went well for us too, it helped him to understand the severity of the situation.

I'm happy to hear that Elaina is making progress and weaning off oxygen and some of the tubes/wires. I hope you are doing ok too. It is so easy to just lose yourself during an ICU stay. Please take good care of yourself too.

Sending lots of love, strength, and healing vibes your way. You all have been through so much and my heart breaks for you. ((((Hugs)))) from a fellow heart mom and heart baby (baby Evan).

Jilian

My Three Sons said...

Hollie,

I think the pictures of big brother with his sister are just precious. I'm glad to hear that Elaina is still improving. We will keep praying for her to have a speedy recovery.

Kaci

Gourley Family said...

What a wonderful visit! I am so glad that he did so well and they were able to spend time together! Those medal-of-honors are truly marks of a hero! We will continue to pray for you guys!
Emily and Mike

The Hood's said...

omSo glad to hear about all of the improvements! She is a fighter! We are so glad Ben got to see her. We know how much it means for siblings to actually see their sister/brother. I think we forget that the other kids are just as resilient as their siblings. Good luck to all of you! We will continue to pray for each of you!

Djinni said...

I Loved this Update! Thanks for sharing it with us. It is wonderful to see Ben in the pictures with Elaina, he looks so happy to see his sister. I have pictures of my girls visiting Isaac after his last surgery and you can tell Lauren had been crying about the situation. You can tell in both situations these kids love their siblings with heart issues. Although Isaac can annoy his sisters sometimes, it is obvious they love him and never take him for granted. I am sure Ben will spoil Elaina with his love as much as he can. I can tell by the way Elaina was looking at Ben, she missed him. Those pictures you took are wonderful. When she gets all better you can make quite a scrapbook of her journey. I feel like my prayers (as well as others) for Elaina are working. I am excited to see the wonderful progress she is making.
Heart Hugs, Djinni