Thursday, May 17, 2007

Notice anything?

Take a good look at the picture.  (I'll give you some hints ... spaced out a little bit if you want to guess.)

Look at her cute little face.  See it?

Or rather do you see what is missing?

Yes - she pulled out her tube again!  It's been 3 days and even though I have retaped, she is good at getting it out!

I don't remember if I mentioned that I noticed last week we were running low on her feeding tubes.  I called and ordered more.  I was very specific about the type, the size, the brand name, the model number.  I really want the type that we currently use.  I ordered 15 to go along with our months' supply of feeding tube bags.  The gal on the phone asked if I was sure I needed that many.  I told her that Eliana pulled out her tube on average every other day at times.  So in a month - yes, I would need that many.

Well the shipment arrived, but I didn't check it right away.  I checked it on Monday when I realized that we had only 1 tube left and discovered that the wrong size was sent!  Only 3 were in the package and it listed that it was backordered.  I thought perhaps they sent this to hold us over until the others arrived.  Thankfully I called.  The backorder was for the same wrong size.  I told the gal on the phone about my conversation last week and as I explained she remembered talking to me.  She asked if we could make do with what was sent.  I told her that no we couldn't.

The size that Eliana needs is a 5Fr (the diameter of the tube) and we were sent an 8Fr.  Her nose is so tiny!  And I wonder if it hurts her throat at times when I have to keep putting it in.  It can't feel good to have had that down your throat for over 3 months.  Also the last 2 tube placements have been rough!  So no, I wasn't willing to try a bigger tube.  She told me that we should have the new tubes by the end of the week.

Well on Monday Eliana pulled her tube and I placed the last one in.  I was hoping that she would just leave this one in until the new shipment arrived.  Well, tonight she pulled out that one.  I have a couple of options.

1.  Go to the hospital and ask for a tube.  If they won't give me one then I take her to the ER and have them place one for me.

2.  I use a different brand tube that I have on hand.  It's the right size but not the same style.  I like the style we use as I'm comfortable with it.  I know how far to place it based on the markings on the tube.  I'm comfortable with this one - well, as comfortable as I can be.  The other tube is about 3 feet long (the one we use is 16 inches) but at least it is the right diameter.

Since it is night, Roger isn't home, and I'm home with the 3 little ones - option 2 looks good to me.  I go to our supplies and get the tube ready.  I measure it against the tube she has pulled and mark it with tape so that I'll know how far to insert it.  (I've also been taught how to measure against her body, but wanted a double check on length.)  I get everything prepared and wait.

Shortly before Roger arrives home, I look again in our supplies.  I am greatly surprised to find ONE more of the right type of tube!  It wasn't buried in our supplies so that I just missed it.  It was sitting right on top.  What a sweet thing to see.  It's a small thing, but I'm thankful that by whatever means, God has given me this tube.  When I tell Roger about it, he asks if I just dug around to find it.  I told him no.  I had even moved the supplies around tonight looking for everything and had not seen it.  I looked earlier in the week and didn't see it then either.  I had counted prior to Monday and had seen one in there - the one we used on Monday.  Thank you God for this small gift that has your loving hands all over it.

The tube is in now.  It went in pretty easily with a minimal amount of crying.  That is a praise and thank you as well!



PS  There's another entry from earlier tonight just below this one. 

Therapy ... lots and lots of therapy

There are so many things we take for granted.  Skills that are mastered by babies every day without any special help or intervention - they just learn on their own.  I have loved watching my babies learn and grow but never really thought about all that went into each new skill that they mastered.  I did get a new perspective when my friend Catherine's son was born with Down syndrome.  I learned a lot from watching all that they did to teach and help him learn.  Never did I imagine that one day it would be my turn.  I didn't really want a turn, but here it is - my turn - nonetheless.

Hmmm ... where to start on what has been going on?  Probably feeding since that is the big one!  We are still using the feeding tube.  Still trying to bottle feed as well, but she isn't really taking in much more than she was before - even with not doing full feedings twice in a row.  (The cardiologist said that we could try only bottle feeding for 2 feedings per day to see if hunger helped her to eat more.)  I really don't think hunger is going to drive her.  There is more going on that needs to be addressed.  I'm not sure how - but am hopeful that with some help we will figure this out.  

Today I met with Eliana's case manager (she manages therapy services in the home until age 3) and an occupational therapist (OT) with that agency.  The OT did an evaluation of Eliana and agreed that she needed specialized feeding therapy.  I have hopes of meeting with someone that is in a local hospital which is outside of the coverage of the therapy services in the "natural environment".  (One of Catherine's therapists that has experience that would help Eliana.)  The OT thought that this was reasonable since feeding is a very specific skill and she needs someone trained to help her.  Someone that understands the issues of cardiac, feeding tubes and Down syndrom.  He was very supportive and said he is going to write his report to that effect.  We'll have to wait and see if this is approved to have them cover therapy outside of the home.  Now, I'd MUCH rather have someone come here, but if the people that are most experienced are not able to do that, then we will go to them!  (Incidentally two feeding therapists that I've spoken with think that hunger-driven feedings  are not the way to go with Eliana.  I think I'm finding it hard to trust my Mom instincts sometimes because so much is new to me - and there are so many "experts" involved in her care.  It's affirming to know that my instincts are on target.)

The OT observed some of her skills, asked questions and wanted to watch a feeding.  Eliana was cooperative for awhile then started getting tired.  She ate 5cc (1/6 of an ounce) and then fell fast asleep. 

Next came our session with our Physical Therapist (PT).  She works in helping Eliana to strengthen various muscles.  Babies with Down syndrome have hypotonia which is a low muscle tone all over their bodies.  This can make it harder to many things - probably most things.  This is why they need to learn new positions to strengthen muscles that may not be being used properly.  For example, often when Eliana is relaxed her arms will be out to her sides - not into to her body like most infants.  She has weaker shoulder muscles which we are working to help strengthen which will make it easier for her to reach and grab things.  (I hope some of this is helpful.  I know that for many Down syndrome is new - and a lot of unknowns.  There is a lot to learn.)

Today we were working on rolling.  I told her PT that she almost rolled over today.  She got her legs all the way around, but couldn't get her hands out of the way.  We worked on a couple of exercises to help teach her how to do this and strengthen the muscles needed to do this in her legs and shoulders.  Towards the end of her session while we were talking and just letting her play - she rolled over!!!  We were so excited to see this!    Eliana's milestones are really going to be celebrated I think.

We also introduced a new toy - one with toys that dangled to try to get her to reach up.  She learned this really quickly.  I had pulled this toy out of the donation pile - it's one of Christopher's toys.  The PT told me not to get rid of it as it is perfect for Eliana.  She learned this quickly too.  Her PT even commented that she thought Eliana had learned this skill quicker than anyone she had seen.  I so appreciated this encouragment.

The PT left an evaluation that she had done a couple of weeks ago.  I was reading it and all was fine until I got to a part at the end in which Eliana's motor skills were measured on some scale as 2 month 1 week when she was 4 mo and 2 weeks.  This just made me sad.  I hate to think that she is behind already.  I know that is part of it - that skills will come only more slowly than the average child.  The last line of the report was encouraging though.  "She is still recovering from cardiac surgery and her gross motor skills will probably accelerate."  Yes that is my hope as well. 

I've been practicing some of the games and exercises with Eliana.  It's really just a more intentional way of playing with her.  I can see her copying and learning some of those things.  She is learning - my precious little girl.

Eliana and I also went out tonight.  This is one of our first outings.  We haven't been many other places that weren't medically related.  I told someone the other day that I thought that Eliana in her first 4 months of life has had more medical appointments than ALL of my other children in their entire lives - COMBINED!  We don't visit the doctor often, though Eliana has more than made up for that.

Since her cardiologist said we could start to go out - we did.  Roger's work had a family day event.  We wanted to introduce Eliana as the people there have been so supportive and encouraging to our family!   Really, really wonderful in so many ways both large and small.  What fun it was to be there and to have so many people excited about seeing our sweet girl.  She was held and loved on and enjoyed.  I love seeing other people enjoy our little girl.  I think that has always warmed my heart - but it touches it more deeply now.  I sometimes wonder how she will be received by others - so far, we have been blessed tremendously by the response of others to her.  I love that people think she is cute - even cuter than her photos some commented to me tonight. 

She is asleep at the moment after her feeding.  (We tried a bottle while we were out, but she only took 1/2 ounce.)  She has had a very full day.  It's been a good day.

With love,