Sunday, December 26, 2010

And the part of Santa Claus was played by Dr. E

There's so much to tell that I might need to split this into a couple of posts. Here goes...

I roomed in with Hope starting on Monday. This means we stayed in our own room there at the unit and I was responsible for taking care of her. Nurses checked on her, dropped off her meds, and drew blood, but for the most part we were left alone. I thought things were going well with the breastfeeding, but Hope was not gaining weight. I was getting used to taking care of a baby on oxygen and a monitor though. But when Hope's lab work turned south again, I was very discouraged. Then an ultrasound of Hope's liver and kidneys was ordered and showed that there might be some refluxing of fluid back up into her kidneys. It was Thursday and I was starting to feel like we would never get out of the hospital.

Then late in the afternoon Dr. E came to visit us and check on Hope. We talked for a couple of minutes and then he asked me what my Christmas plans were. I told him that, one way or the other, I was going home the next afternoon and staying through Christmas. He said he needed to talk to Dr. AH and walked out. Two hours later the nurse walked in and informed me that the docs were having quite the pow-wow down at the other end of the NICU.

A few minutes later, both docs walked in. They informed me that the next morning Hope was going to have another test on her kidneys. Then a home health nurse would come to teach me how to flush Hope's broviac, since she would be going home with it still in. Then we should be ready to go. Then they both proceeded to give me a zillion instructions consisting of things like "All children are to be considered sick until proven otherwise." I nodded along, afraid they were going to change their minds at any second. I finally got up and gave them big hugs.

The next day was a blur of activity. Hope had her test which showed that she did indeed have some refluxing going on. This can lead to frequent urinary infections and explains her constant down-turn on her blood work. Yay! They figured it out finally! We'd been looking in the wrong place all along. Well, she has definitely had problems with her bowels too, but it looks like this is the ticket. (For the time being she is on a daily dose of antibiotics and we have an appt to see the pediatric urologist.) Then I got trained on flushing the broviac, which is a little stressful for me. Dr. AH was quick to point out that an infection in a central line can "lead to death really quickly". Thanks, doc. No pressure. After tying up a million loose ends, we were finally ready to go at almost 5 pm. Dr. E came by on his day off to see us on our way. He wanted to make sure that I understood that he hadn't just done this because it was Christmas, it was the right thing to do. Hope needed to go home. I told him, "That may be, but Dr. AH said you were up really late last night getting us ready to go home." "All night, actually." I told him it was my best Christmas present ever and gave him another hug. I love this man!

Though I told Mike that I was coming home, we decided to keep it a secret from everyone else. That drive home took forever! I was so excited when I finally reached home and was able to walk in the door with Hope. Mike was ready with my dad's camera phone so that he could record their reaction. Mary was great. She asked me why I had the car seat with me. I think Nate was the first to realize Hope was in there. It was so cool! We'll eventually figure out how to download it and put it on the blog.

Andy has been really cute with Hope. He likes to call her "Hoper" and he know that she is "sister". He has been good about not touching her, but whenever I'm nursing her he comes over and pulls up the blanket wanting to "See it?" He was offering her eggnog this morning. He tells her "Open up. Aaaah" when we're trying to give her meds. He's been pretty cute.

Hope has been doing well at home, though she isn't gaining weight. She was unable to get her broviac out this week because she has yet to prove that she's not going to need it again. After her Wed appt with Dr. AH it was decided that she should get a tube going down her nose into her tummy so that she can get a steady drip of formula all night long. We tried it the first night with breast milk instead, since I'm still really leery of putting anything else in her with her bad gut. It was disastrous! We woke after about 3 hours (it was supposed to be a four hour run) and she was crying and in pain. Her belly was so distended and rock hard. It took until that following afternoon before she'd worked it all out and was comfortable again. Last night I weighed her and it looks like she might have dropped a little bit. Again I got really discouraged. I was crying because I can't make her gain weight and I was really worried about trying formula. We didn't know what to do. Mike finally decided to try to give her a bottle of formula. (We pulled the tube after her failed attempt and because she kept gagging. We were going to have the home health nurse put another one in and we would run it at half the rate. But she was advised to have us go to the emergency room and get an xray taken to make sure it was placed right. We decided not to mess with it.) Anyways...God gave us an answer about whether to use formula or not. Hope won't have anything to do with it. She spits it out or just refuses to swallow. Oh well, back to the drawing board. Please be praying that we'd know what to do and that Hope would start to chunk up.

I also wanted to ask you to be patient with me about returning calls and emails. I am feeling really overwhelmed right now. Hope is pretty labor-intensive. I need to flush her broviac once or twice per day and give her all her meds. She gets actagol (for her liver) three times per day, iron twice per day, amoxicillin once per day, and vitamins once per day. She loathes the vitamins with every fiber of her being (can't say as I blame her since they are a foul-smelling orange liquid) and getting them down her has become quite tricky. We have at least 3 appts every week with doctors, home health nurses, physical therapists, etc. There's oxygen and a monitor to contend with. Then there's the pumping and the fact that she doesn't sleep at night. So please extend a little grace - I'll get back to you as soon as I can.

One last positive note... Hope is doing well on her oxygen. We turned it down to 1/16 of a liter yesterday and she is still satting 100. Hooray! I think we might be able to get off of it soon.


  1. WOW!!! What an amazing adventure. You all are still in our prayers and I'll be praying especially that God gives you the wisdom about her feedings and bowel issues. I love you my dear friends. God bless you in this new year.

  2. Amy, Thanks so much for your post. Yes, it's difficult for us to wait for your next post, and sometimes I worry a bit when I don't see anything for a while. But we do understand that your primary concern is NOT what we know but what you are doing for Hope and the rest of your family.
    I'm praying for the happiest New Year ever for you and all of yours.
    Let us know what you can, when you can. We do appreciate keeping up with Hope's progress.
    I'm so happy you are all back together at home again.

    Love Betty Raiford

  3. Praise the Lord! I am so glad you and Hope are home and able to be a complete family again.

  4. Thanks for the update and don't worry about calls or emails. I loved hearing the story of Dr. E. What a great gift. :)

  5. God is so good! I know you have a long journey ahead but I'm sure healing will be there for you just by being HOME!! We continue to pray for you and Mike and little Hope and all your children. What a great Christmas present and Happy new year! Love John and Diedre