A week filled with doctor appts

I have thought so many times of things I'd like to add to this blog - but finding the time to actually type is been tough!  My days are filled with pumping and then feeding - and on and on goes the cycle.  It's been hard!  In fact just tonight my 11yo daughter was about in tears talking about how "different" things are - and the pumping seems to be what has hit her the hardest.  I spend about 4 hours per day pumping and that much or more in feeding Eliana.  It's a LOT of time - and it's hard work.  I've received a lot of encouragment to keep it up - but also encouragment that if it gets to be too much for me or my family that it's alright to stop.  It is just hard to know what is best.

Last Wed, we had a physical therapist here to do an evaluation of Eliana.  She was pleased with what she saw and at the moment Eliana is not "behind" in any way.  She is trying to lift her head when on her tummy and when being held upright.  She gave me some ideas of a few things to do with Eliana, but didn't feel that we needed to start therapy immediately.  She was positive and encouraging which was nice.

On Thur we visited with our pediatrician for 2 hours.  She is very thorough and concerned not only for Eliana but also for the rest of our family.  I feel blessed to have someone that cares for us in this way.  Eliana had gained 4 ounces in the last week.  We were glad to see that as she had lost weight from week 2 to 3.  She weighed 7# 14 oz.  That is just 2 ounces above her birth weight.  We've been told that we need to fortify her food - both breastmilk and formula - with additional formula to boost the calorie count.  So far, her heart is doing fine.

On Fri, we visited Duke for a renal ultrasound.  During my prenatal u/s a problem showed up on the size of her kidneys and this was just a follow-up.  Unfortunately, the lab tech was not allowed to give us any  information and I could tell nothing from looking at the screen.  We'll have to wait and get the information from our ped.  Eliana slept through the u/s so it was a quick and easy procedure.

After finishing here, I met with the lactation consultant who was working at Duke that day.  This is a wonderful gal that has helped me from day 3 with Eliana.  She is a great encourager in so many ways!  I'm thankful to have had her help.  She helped me try a supplemental nursing system with Eliana.  It's really the last different thing we can try.  She did nurse some - both with and without it that day!  It's this that keeps me going on the pumping.  I really think that she CAN nurse - once we work past being sleepy and getting proper amounts of  milk.    Oh, they also tested my milk to see what the calorie content was for it.  Normal is 20 calories/ounce and that is what formula is too.  Mine tested at 21+!!!  I was very encouraged by that.  So while I don't have a lot of milk - at least what I do have is good. 

Please keep praying for us - for our whole family.  This is a big adjustment for all of us.  Will type more later, but for now I need to go pump.

With love,
Leslie

Cardiologist has good news!

Eliana had an appt with the cardiologist today.  She had another echocardiogram done today.  The first was done shortly after birth and transmitted to the cardiologist.  He wanted a better look at her heart.  He had good news for us after the echo - one of the problems that was thought to be present in her heart is not!!!     She does not have the AV canal defect (no separation between the canal on the right and left side of her heart).  Instead she does have these separated.  This will mean a less complicated surgery and hopefully less chance of problems in this area down the road. 

She does still have two holes in her heart that will require surgery.  One in the upper chambers and a larger one in the lower chambers.  Both holes are between the two chambers.  I have a really great picture from the cardiologist that helps to explain this - but I know that isn't all that helpful to those that are reading here.  Maybe I can find a link.

The bad news we received today is that she has not gained weight in the last week.  They are asking us to add formula to the breastmilk she receives in order to boost the calorie content for her.  She has to work extra hard due to the holes in her heart which burns more calories.  She is also still really sleepy and at times has a hard time staying awake for feedings. 

At this point in regards to her heart we are just waiting to see how she does.  If things go badly in regards to weight gain, she may have the surgery sooner - as early as 2 months.  The cardiologist expected that the surgery will probably take place between 3 and 6 months.  We are just in a waiting mode right now.

Things are expected to get hard for her sometime in the next month (between 4 and 7 weeks perhaps).  She will gradually begin to go into heart failure.  I told him that this sounded awful!  He assured me that it sounded worse than it was and that it would be gradual.  Also that it needed to happen before she could have the surgery.  We hope to know at least a week, possibly two, in advance of when the surgery will take place.

Please keep praying for all of us.  We are so encouraged by the notes and prayers of so many on our behalf!!!  I know it has helped to carry us these last couple of weeks.  Here are some specific requests.

Pray for health for our family.  For the last two weeks every member of our family - except Eliana and I - have been sick.  My dh has been out since last Friday!  It's been really hard. 

Please pray for me as I try to pump milk for Eliana as I know that this is really good for her.   Also for her feeding that she would get the calories she needs to be able to grow.

Pray also for our family as this adjustment has been a hard one for all of - especially with all of the sickness.

We are thankful for you dear friends!

Love,
Leslie

One more picture

Please continue to pray for our family.  The adjustment to having Eliana join our family has been a hard one.  We were unprepared for her medical needs and this has been hard.  Additionally, since we've been home from the hospital we've had sick children - and dh!  Only Mommy and Eliana have remained healthy.  We have not figured out nursing and pumping around the clock is very hard!

I know that there will be joy to come.  I know that God is good.  I know that He is carrying us through all of this.  I am so very thankful for the friends and family that have reached out in support of ours. 

Pictures of Eliana Joy

We've had a number of people ask and thus we wanted to share a few photos of our newest little cutie.   She sleeps a lot and has had very few awake/alert times. 

She has a head full of dark hair - not sure where that came from as all of my other babies were "bald".  It's  taken some getting used to  - seeing hair on my baby's head!    She is adorable!