Wednesday, October 21, 2009

Rehabilitation Center

Well we got the word and the OK to go to the Cleveland Clinic Children's Rehabilitation Center as soon as a bed opens for Hope.  They will spend their time trying to get her to take her bottle better and trying to get her to gain some weight.  She is still hovering around 5 1/2 pounds and they really want her over 6 pounds before she comes home.  We would all like her to come home without the NG tube, but we are realizing that may not happen.  They are more worried about making sure she is growing than making sure she is taking the bottle because she has another surgery right around the corner and they want her big and strong for that surgery.

She has been eating pretty good from the bottle for me when I am able to feed her.  They still want her to only take the bottle for every other feeding, so that makes it hard.  She gets fed every 3 hours, but a bottle only every 6 hours...not often enough for me to get in more than two or three bottle feedings a day.  The other times she is doing the bottle with the nurses or the physical therapist, and then she only takes 10-15 mls.  With me, she usually takes around 15-25 mls.  Still not the full bottle, but we are getting close.  We rest a lot during the feeding and it seems to help her take more of the bottle.  No throw up today, so that is GREAT!!!  She really tries to take the bottle, but gets so tired that she ends up falling asleep at the end.

I want to thank everyone for their comments from my last post.  I am trying not to feel so guilty all the time and I know that I am doing the best I can for my whole family.   We will make it through this and 5 years from now we will all look back at this time and realize that the time spent apart was well worth it...Hope will be thriving and hopefully done with all her surgeries!

I have to tell you that one of my heart friends from BabyCenter was at the Clinic with her son Doug yesterday.  He had surgery and had to spend the night in step-down.  He is the cutest little guy and his parents are the greatest.  He has been through a lot in his young life and was still smiling like crazy when he was leaving today.  It is such a heart-warming feeling to meet other heart babies and see how well they are doing.  It gives me so much encouragement and hope and acknowledges that I made the right decision to bring Hope to the Clinic and have the surgery that has saved her life.

I left my camera at the hospital again, but I will post some new pictures tomorrow.  Hope has managed to wear all the clothes she is able to wear...they have to have front snaps...and I finally have a full load of laundry that I need to clean for her.  I can't believe after everything that we have been through in the past 6 weeks that I have a load of laundry to get done for my little girl.  I try really hard not to think back to the day at Akron Children's when they told us they would not do her surgery, but today I did and I am so happy that we got the second opinion and that I have a load of laundry to do for her.  Anyone that knows me knows I HATE doing laundry, so this is HUGE!!!

We want to thank everyone again for keeping us in your prayers.  Please also remember to keep our other heart friends in your prayers as well.  Erica and Paul's little guy is doing really good and I think he will be heading to step-down this weekend or early next week (just my prediction).  Levy and Tracy's little guy will be heading in for his surgery on Friday.  You can follow their story here.  One last person that I would like everyone to pray for is Lisette and her little Sami.  Sami is due in a few weeks and Sami has had the most eventful pregnancy of anyone I have ever known.  Please pray that the rest of the pregnancy is great and that she able to enjoy it without the excess fluid and no more itching.  You can follow her story here.  Please keep all heart babies and their parents in your prayers.  We all need them every day!

One last thing (I got this from another heart mom's website) which you can find here:

The Congenital Heart Information Network needs your help and a minute of your day..

It's that time of the year again when many CHD organizations are gearing up their efforts in spreading their CHD awareness message.

Please take this brief survey and help shape the focus of CHD Week 2010/2011 for The Congenital Heart Information Network.
You can find the survey at:

Please share also this message with families and friends affected by CHD.


  1. Lauren still has a feeding tube. She has a lot of drinking issues related to her 5 week hospital stay in January when she had a cold. That probably won't be the case with Hope. The first time they teach you to put it in, you will probably freak like I did. I said absolutely not! I am not sticking that down my baby's nose! Make my husband do it! Now, I am an old pro! I can shove it down in there in just a couple of minutes in the middle of the grocery store! Yeah! She fights now too! Just remember that no kid goes off to kindergarten with one and I think that most kids eventually realize they won't have to have it anymore if they drink for you. CHD kids can be stubborn though! Lauren is also still on Digoxin. We are hoping to get her off of it in January. They might also take her off the aspirin in January, which means she will only be on the blood pressure medicine! Yeah! We are hoping. Take care.

  2. Paula, I am glad to here that Hope is that much closer to going home. She eats better when you are around because she knows that her Mommy is the only one who can give her exactly what she needs as you have done so all these months. She is a smart little girl!!!
    I know what you mean about doing laundry, I hate it but when I washed a load of pink stuff for Sami it made me smile. I am so used just boy stuff because of Julian. In your case doing that for Hope must of meant so much because it is finally real that she is such a part of you and your family for good. After so many months of waiting and fearing the worse, you have been blessed and I am so happy. Bring that load of pink laundry, I know it must feel great.

    THANK YOU so much for the nice comment about us. It has been so hard but we are hanging in here. God will see us through, I know he will. All the aches and pains have been worth it and if she needs more of me, I have no problem with that. Once again THANK YOU from the bottom of my heart.

    Sending hugs your way. God bless.

  3. Enjoy every min of doing her wash. You deserve it! Still praying for you and Hope!

  4. PAULA