Sunday, October 4, 2009

Some Tubes Out

What a surprise we had today...Hope had one of the drainage tubes removed and the peritoneal dialysis catheter removed.  The best news is that it means Hope is doing a good enough job peeing on her own that she won't be needing dialysis.  Most of her puffiness is gone and she looked so good today.  I can't tell you how blessed we feel every day when we see how well she is doing.

Today she spent a bit of time awake and alert...which the nurses really didn't like too much.  It was kind of scary to think about how much she has been through and how much pain she must be in when she wakes up.  They even gave her some additional sedation medicine and she still decided she wanted to see everyone, so she fought the medicine to stay awake.  I loved every minute of her time awake, but I know it is best that she rests until they are ready for her to be awake.

They will probably remove the other drainage tube tomorrow or Tuesday and they are going to start weaning her from the blood pressure medicine she is on.  They are also going to continue weaning her from the ventilator and I am guessing they will try and take the breathing tube out one day this week.  I like that they do everything slowly because it gives Hope time to get used to everything before they remove them from her.  I get excited thinking that maybe this week or next we will be able to start working on her feeding with a bottle.  She has been sucking on the breathing tube and she loved her pacifier, so I am hoping she will love her bottle too.

Jerry is starting back to work tomorrow after bring off for 3 weeks on FMLA.  It has been hard without his paycheck and we checked into it and he will be able to take more FMLA time if anything comes up with Hope.  I know I am going to need him when she first comes home and definitely when she has her second surgery in a few months.

Our entire family is so thankful for everything everyone has done to support us these past 3 weeks.  We know we are going to need a lot more help as we try to get a schedule together and we are thankful for our families extending us their help.  Words cannot express how thankful and grateful we are to everyone for their thoughts, prayers, and help!


  1. Paula! She looks so good. I am so happy to hear that she is doing so well. She is so strong and such a little doll! I am so glad that everything is working out. I think of you guys every day!

  2. Hi Paula & Jerry

    Oh my gosh, she looks great! What a difference a day or two makes! I so wanted to stop in yesterday but we got a late start. Sami visited with Greg's Mom & Dad while we went to see Sarah. They were making dinner for us at 6:00 so we had to get right back. His parents are leaving for Florida this Sunday so I wanted to make sure and spend some time with them since we won't see them again until April.

    I just want to smooch on that little cutie of yours! I have a bunch of people here at work praying for her too! Everyone loves your blog! Dawn, our receptionist, has her entire congregation praying for Hope and asking about her.

    I am thinking and praying for you and Jerry too. I know it is going to be very hard on Jerry to go to work. It is going to drive him crazy not being with you guys. But it is also a good distraction, concentrating your efforts on something other than worry.

    I miss you guys! I will try to visit here in the next couple of weeks. Love you - Beth

  3. She looks so great! She really is a strong little girl. I remember how happy we were each time they took a tube out or Lauren reached a goal. I know just how you feel! Soon Hope won't look like she just had heart surgery at all. She really is a miracle baby. I hope feeding goes well for her. It can be a challenge. Lauren has had a lot of feeding challenges and is still on a feeding tube. Just yesterday she started drinking Pediasure out of a Nuby cup and I think she took in a whole ounce! I was so excited! If you ever need any support or advice, please contact me. There are a lot of tricks you can use. Patience is the biggest. Just remember she will not go off to kindergarten with a feeding tube and you will be okay! Make sure to use the feeding thereapists in your county. We have one come to our house once a week to work with Lauren on feeding. Help me Grow has been a really big help. Take care. Jessica Makuh