God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.
(2 Corinthians 1:3b-4, NLT)

Friday, February 27, 2009

Museum, playtime, and surprises!

Friday, February 27 (evening)
Well, I accomplished everything on my "to-do" list today. I spoke with both Dr. Soden and Dr. Partrick today. Dr. Soden is a nice guy. He really is. But his favorite word seems to be that yucky "T" word. We spoke for at least 10 minutes or so this afternoon, and I think he said it at least 15 times during our conversation. When he left, I really had the impression that his opinion is that Dave and I should talk about it and go to Pittsburgh for the transplant evaluation.
When Dr. Partrick came to talk to us tonight, he was much more moderate in his approach to things. He is optimistic that we will be able to get her to at least 50% enteral feeds, if not more than that, by just taking things slow with the continuous NJ tube feeds. If this is the case, and her liver numbers stay stable and/or get better, we won't have to talk about a transplant or Omegaven. He said that even if she fails this attempt at feeds, it doesn't necessarily mean total failure, and they will just take it down to whatever amount she did tolerate and send us home on a combination of continuous feeds and TPN. We felt much more optimistic after talking to him.
Yesterday we took Noah to the museum with Dave's parents and Noah's cousin, Jordan. Noah LOVES the museum, especially the dinosaurs. Next time I think we will save the dinosaurs for last, because once he's seen those, it's hard to get him interested in anything else. It's nice now that we have military ID's, we get in for free. Noah also likes spending time with Faith, he is a good big brother.
Faith has been very happy the past few days, just full of smiles for everyone! We took advantage of her good mood earlier today and spent at least an hour playing on her mat on the floor. We're working on getting her to realize she can control her arms and reach for the toys that hang over her. She seemed like she was starting to understand, before she started to be too tired and lost interest. Hopefully next time, Sheryl the PT will be able to come and give me some more pointers on how to help Faith start doing some of the things that are developmentally appropriate for her age.
For the past couple of days, I had said we should feel in Faith's mouth and see if she's getting any teeth yet, since she's about 3 1/2 months old now, and Noah got his first tooth right around 4 months. So tonight, I stuck my finger in there and was shocked to feel that Faith has her first tooth!! We think it's the bottom left tooth, and it probably came through a few days ago, based on how much of it is already through the gum.
On a much more negative note, we also got an unpleasant surprise today. Dave lost his job. They gave him the impression that he would still have a job until he leaves for basic training (which has been pushed back now until August, for the time being), and told him to come back today and be there at 8:30, and by 9:00 he had called me to tell me they let him go. Please keep us in your thoughts and prayers during this tough time, and if you know anyone who's hiring or looking for someone with 2 bachelor's degrees in Criminal Justice and Social Work, let us know!


Jenae said...

I'm so sorry to hear about Dave losing his job. What tough times for your family! I hope this will open the door for new and better opportunities for you all.

I can believe Faith got her first tooth already and I haven't even met her. She is getting so big.

I have not been writing as many comments lately, but I have been keeping up with all your posts. I too can't believe they are saying the 'T' word. I hope Faith and you have the answers you need soon. I hope Faith begins eating well enough to avoid a 'T' and can come home. (((HUGS))) to all!!!

Anonymous said...

My heart goes out to you all. Emma was in the hospital less than three weeks and I thought I was going to lose my mind. Somehow, you have summoned the strength to push through over three months in the hospital. I cannot believe that they are talking about a transplant at this point. It seems premature and I truly hope that Faith proves them all wrong.

Faith is our prayers and we are waiting anxiously to see the post titled "Home At Last." She is absolutely beautiful and she is going to be so happy to get out of that hospital!

I am so sorry to hear about Dave's job. That is the last thing that you all needed. Stay strong. You are in the prayers of many.

With Love,
Baby Emma & Family

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