Another week of appointments

Just a quick update.

Rebekah has been doing ok with eating, as far as the volume that she is taking in. We are not sure if she is gaining any weight. We have a weight check on Wednesday morning. I will be surprised if it is anything big. She still is doing a lot of sleeping and seems to tire fast. I have had several feedings where she has fallen asleep in the middle and taken a 15 min nap then wanted to finish. We will see how she weighs in hopefully I will be surprised and she will have had good growth this week.

Also Rebekah has an appointment on Wednesday to she the GI doctor. We are waiting to see what their thoughts are on Rebekah and where they want to head from here.

We will continue to update you as we find out more.

D

Plan C, D, or maybe....Q!

What a difference a week makes! Last week we were excited about Rebekah's eating and saw a definite improvement in the amount she was taking at each feeding. Since this weekend, we have seen a significant difference as well.....just not in the right direction! Rebekah has been eating less at each feeding and has been very agitated during most of her feedings - a sign that appears to indicate that her reflux medications are not controlling her reflux adequately.

Yep! That's our sister! Justin and Aaron love to help take care of Rebekah.

Rebekah has also been more lethargic this week and has been sleeping more than she was last week. We decided to blame that on the less frequent doses of Lasix that Rebekah has been getting since last week's cardiologist visit. Rebekah's doctors today decided to go back to the original dose and frequency to see if that can get us back to where we were last week before we made the changes. Of course, it doesn't help at all when Rebekah spits up immediately following her medications!

Sleeping in spite of my brothers!

The official weight check numbers for this week were consistent....consistently low! In the previous week, Rebekah had only gained three ounces, and this week she decided to make a repeat performance. Rebekah gained three ounces this week to bring her up to seven pounds and three ounces. We didn't measure length today, but one or two of her little outfits are getting snug in the length, so she may be adding a little growth in that direction.

Silly monkeys!

In developmental news, Rebekah has started to smile just a little bit in response to Drew or I. It is fast and fleeting, so I haven't really been able to capture it on camera yet. I'm still trying, though! Rebekah is also getting better at holding her head up for a few seconds at a time. Because of her reflux, we haven't had much tummy time at all, but she does lift her head when Drew or I put her up to our shoulders.

Almost everyone! Caleb bailed out at the last minute. :)

We will have another weight check next Wednesday at our pediatrician's office. In the meantime, we are being referred to a gastroenterologist (GI doctor) to figure out what the next plan for feeding Rebekah will be. Some days it feels like we are swinging on a pendulum between good days and bad, plan A and plan Z, but it is comforting to know that God has a plan for Rebekah. He has had that plan since before she was born, before we even knew she existed. And we are so thankful for the doctors that He included in that plan to help us care for Rebekah. We have been blessed by a truly amazing team of doctors and medical personnel, and we are grateful for them!

Zachary bought this outfit for Rebekah. She looks so cute in it!

Please continue to keep Rebekah in your prayers in the next few weeks. The feeding tube is definitely on the table as an option again, and we are willing to pursue that option if it will be best for Rebekah. Please pray for wisdom for all of the doctors involved, for Drew and I as we care for Rebekah, and for Rebekah. Pray specifically for Rebekah that her tummy issues will be resolved and she will be able to grow as she needs to.

Thank you to everyone who continues to pray for our family and especially for Rebekah. We appreciate you all more than you know!

Nancy

P.S. Click on over to our family blog here for new pictures of the boys!

Wednesday check up

Pray for Rebekah; she has a weight check today, and she has had a couple of down days this week. She has been extra sleepy and having trouble eating. Hopefully Dr. DeMoss will have some helpful answers today. Will post when she gets home later.

D

Wall Street Journal

I just wanted to pass along an interesting article from the Wall Street Journal. The article highlights just how (relatively) new major heart reconstruction is in young children. You can click here to read it.

Nancy

Wednesday Weight Check

Hello all!

After being very excited about Rebekah's eating, we were a little disappointed to find out that she has only gained three ounces in the last week. Little Miss is now seven pounds even, but that weight gain put her at a little less than half an ounce a day. If you remember, her pediatrician would like to see a weight gain of an ounce each day or even a little more. We had really thought she was doing better in the last week.

Because everything else looks so good and Rebekah seems to be otherwise doing well, our pediatrician is going to give her another week and check her weight again next Wednesday. I will be able to continue breastfeeding between now and then, but we are going to try alternating between breastfeeding and botte feeding so that Rebekah does not have to work as hard at each feeding. We will also be fortifying the breastmilk she gets in bottles with a little more formula than we had been using before.

Please pray that in the next week Rebekah will gain close to half a pound and will continue to do well with her feeding. Also, I forgot to mention yesterday that we need to pray for her collaterals (the small arteries from her heart to her right lung) to continue to grow. That was the reason for postponing her surgery in the first place, so we really need those to be big enough to work with by the time she has her second surgery.

We are looking forward to a hopefully slower week next week. Zachary will be starting school on Wednesday and is looking forward to going back to school. Rebekah only has a weight check next week, so we should have a lighter doctor schedule. We are intending to enjoy the last few days before we start the school schedule again!!

Nancy