Wednesday, June 24, 2009

Waiting game...

Dear Family and Friends,

So this blog used to be about goofy, silly things going on in our life but recently it has changed to give updates to those who love Raina and Andy...and now their little guy Eli. I have been struggling being so far away and not being able to help or fix this. But I guess giving updates so that they don't have to repeat the experience is helping. So I will sleep tonight knowing I am doing something as a big sister. It was a really rough day for Raina and Andy..and of course Eli. And also rough for all of us that hear little tidbits of information but not the whole story. I wait all day, carrying my phone for an update from my sister. I don't expect her to worry about updating us all, but boy am I anxious to hear any little bit of information! During a rough hour here Charley came and said, "Mama, I know you are sad but how about we play camping." Tough for a little guy see his mama sad. He doesn't understand that his new little cousin is struggling a bit.

The tough part...the medical gunk. Even Raina admits that explaining and understanding is in her words:

the focus on platelet count has now transferred over to a new worry about a possible virus that came back positive that could indicate a central nervous infection. Everyone believes it is a false positive-the whole team, and the head of the infection disease (ID) department too. They have him on antibiotics so he is covered if it is in fact positive, but our nurse said that all her patients that have had this have been wayyyyyyyyy sicker (not eating, lethargic, problems with liver etc) so they are hopeful that it is really negative. They ended up giving him platelets so they could do a lumbar puncture/ spinal tap (b/c of the risk of bleeding, they ended up doing the platelet transfusion which was depressing to me, because now his platelet count will go up and it will be b/c of the transfusion so we can't watch to see what it does on it's own) anyways....he had the lumbar puncture but the doctor was unable to get the sample of his CSF (spinal fluid) so they have to take him to IR tomorrow to do it where they can see an xray and 'hit" the right spot. Then we have to wait 2 days to get the results.
We are praying harder and harder that it comes back negative. Unsure of the plan after that. We'll see. He is a trooper and is sleeping soundly now after the procedure (which we stepped out of the room for.)

Exciting news! My sister just called...and we don't talk via the phone these days because I will make her cry, she will make me cry...etc. So when I saw on my phone that Raina was calling I knew something was up. Good or bad? GOOD! Really good! They got good news. His tests came back with his liver function results. They came back showing that his liver is functioning normally/wonderfully/ however you want to describe it! This is really good news and they are celebrating. This is a good sign that means that the virus thing is most likely not a worry. His platelets were also up quite a bit so that added to the happiness. They knew they would go up with the transfusion but they are still celebrating!

Honestly, my mom saw him today and she witnessed him pooping -without a diaper! It sprayed all over! She said he adorable and doesn't look like he has any challenges or things bothering him. So we will hold onto the good that just came about in the last hour! I am so joyful because the nights are the toughest for Raina and Andy and now they can go to sleep with such positive news.

Raina also said,
very very thoughtful coworkers and friends who are bringing lunches for us-SO nice, even though we not that hungry we are continuing to make ourselves eat. Andy will put off going back to work for a few more days to be here with me and for the little guy. A lot of this is a total waiting game and that is so hard. We just know that he is in good hands-as Andy says- 5th in the nation for the neonatal ICU and 3rd in the nation for Children's hospital. Just amazing that our little guy is being taken care of by some of the best doctors in the nation (seen by hematology, head of ID and many other neonatologists!) The nurses are awesome too.

As we waited for baby to arrive I had a hard time believing that Raina was going to be a mother. She is my little sister and she was always the baby when we played house. She was always the student when we played school. She has been a wonderful aunt to my boys. And Andy...well gosh he is FUN Uncle Andy who gets down and wrestles, tosses, and laughs with my boys. He mixes my drink a little too strong, plays a good hand of Hearts, and is always ready for a good time. When I saw my sister in the last weeks of her pregnancy it became more of a reality that she was going to have this little responsibility who would call her mama! There is no question that my sister and Andy are parents. They are making decisions, having worries that most parents don't have to deal with. Their priorities are different, they wake thinking of their little Eli, and they fall asleep dreaming of him. I can bet their conversations during the day include Eli. This isn't how they planned for Eli's first couple days to go...but they are going with it, trying to enjoy it, and for sure -loving him up every second of every hour.

Keep them in your thoughts and prayers. Thank you to those who are helping keep them nourished. Peggy, thank you for running over little things they need - they know you are there. Mom thanks for taking the calls from all of us, relaying information, and popping in to see little Eli and Raina and Andy. I know Raina would love to be able to update everyone individually, so would my mom and I. But it really is hard to keep telling the sad stuff and the happy stuff gives us peace. So thanks for allowing us to update you this way.

More tomorrow! Night everyone!


Anonymous said...

The liver test is good news! I'll be sending Eli strength for his tests tomorrow.


April said...

He is so cute. Glad there was good news tonight! We will keep him in our prayers!!!

Barb said...

Sarah - thank you so much for sharing all of this. We all can't wait to hold him! Love, Grandma Barb PS: Did you play camping?

Peggy said...

love the new pics!! he looks so peaceful and happy--very good to see! love the little whale romper!

Nora said...

I've always found play camping to be very therapeutic :) Eli is such a darling in his little baby clothes. I think you're doing a great job keeping us all up to date. Thank you!

Anonymous said...

Thanks for the update... Our thoughts and prayers are with Eli and family that he will return home with mom and dad very soon!!

Much love to the family,


Related Posts with Thumbnails