September Prayer Requests

We thought we would share some updated requests and needs. We have two big ones around here. One being I still do not have a permanent job. While the Lord has been gracious to provide for our needs with my heart felt gifts and some hours here and there on odd jobs we are still praying for some thing more stable.

Our other big request as always is Rebekah and her care. We are specifically praying for wisdom on making the best choices for her care. As you know if you have been following along Rebekah is looking to have a G-tube installed very shortly. We are praying that this surgery will go smoothly and that there will not be a lot of recovery time. We are praying for funds to come in so that we will be able to make at least 2 trips to MUSC to have this procedure done. We will mostly likely have a 2 day trip for a clinical visit and then a 2nd trip up to a week long stay to actually have the surgery.

We are praying for 2 things to come out of this surgery. One that Rebekah's reflux will be stopped so she is more comfortable and able to eat right. Two to help her to move forward with the right growth and weight gain.

Also like last time with the open heart surgery we are praying for all the details of child care and strength for the rest of the family.

Of course along with prayer requests I will mention some praises too. I am thankfully for all the hours and help Grammy and Grampy have given to taking care of the boys. I am also thankful that the boys are so flexible and go where ever we need them too. Most of all we Praise the Lord for caring for our family and guiding us each step of the way.

D

100!!

A few weeks ago, we went to a local park with a friend of ours who is a professional photographer. She took some beautiful photos of our family and Rebekah. Hop on over to her blog to see some of her work and check our family blog for pictures of the boys. Thanks for such great pictures, Rachel!!

I realized just as I was about to start this post that it will be the one-hundredth post on Rebekah's blog! It has been a short, yet long, journey to this point, and we are just at the beginning. We are so thankful for all the Lord has brought us through to this point and for all He will do in Rebekah's life.

We made the difficult decision this week to go ahead with the surgery to have a G-tube placed for Rebekah. In some ways, this is even harder for me than her heart surgery. I know that Rebekah needs her heart surgeries in order to live, but the G-tube is somewhat different. It will be closing the door on nursing Rebekah - something that I have always had as a goal once we got past her big heart surgery. It will also mean the end of bottle feeding as well, and I am so very torn about this. For some reason, I am really struggling with giving up feeding Rebekah in conventional ways. I know she will still be getting breastmilk and that the method of delivery isn't really important, but it is disappointing just the same.

The details aren't in place yet, and we will let you know when we know the dates for sure. It looks like we will be heading to Charleston in the next couple of weeks for a one-day pre-op of sorts. Rebekah will probably have another upper GI done and we will meet with the surgeon (or one of his assistants) to go over procedures and anything else that needs to be done. Then at that point they will be giving us a firm surgery date. It is possible that the surgeon will be able to place the G-tube laparoscopically which will be a much faster surgery and recovery time. Please pray that he will be able to do the surgery this way. If he can, we will probably only be in Charleston 2 or 3 days and then back home.

Rebekah has an appointment on Wednesday with BabyNet (a division of the No Child Left Behind act which services 0-3 year olds). The purpose of the appointment is to evaluate and assess Rebekah's strengths and weaknesses and determine which services she needs at this time. She has been a little slower to meet some of her developmental milestones, but nothing out of normal ranges yet. She may possibly qualify for up to 16 different categories (not all of them apply - they are just available if needed).

Miss Bekah is now weighing in at 7 pounds and 13 ounces. She made a 4 ounce weight gain in her last week. She is 21 and 1/2 inches long and some of her newborn outfits are starting to get a little snug. Her newborn clothes are adorable, but I must say after almost 10 weeks of being in this size, Mommy is ready for some new clothing options! :) I'm anxious for a little more hair so we can start accessorizing with hairbows and barrettes! :)

Rebekah has started to suck her thumb just a little bit. Usually she misses her mouth and pokes herself in the eye or nose or something, but a couple of times recently I have caught her getting her thumb in her mouth. It is so cute!!

Please keep Josiah and his family in your prayers this week. The doctors have decided that it is time to take him back to the OR this week for a surgery similar to the one Rebekah had to band his pulmonary artery.

That's about all the news for now. Enjoy the holiday weekend everyone! :)

Nancy

Sick Germies!

I was awakened (more than once!) in the night by Caleb who has spiked a fever hovering around 100.5. Not sure yet what he has or what is causing it, but he also doesn't want to eat anything. Please pray that whatever it is will not be spread to the rest of us and especially to Rebekah. We will be fighting the bugs and sterilizing everything around here!

Nancy

Happy Two Months!!

It's almost unbelievable, but Miss Rebekah celebrated her two month birthday today! She had a very low-key day, but did get to see Grampy and Grammy last night and this morning.

Justin loves his sister!

Rebekah is doing much better with her eating. Thank you all for praying; we are very excited to say that after a rough 24 hours immediately following the tube placement, Rebekah has done very well! The tube Rebekah has right now is an Ng tube (goes in through her nose to her stomach), and it is a more temporary type of Ng tube. Because it is more temporary, it is very stiff and does not stay taped to her cheek well. Rebekah surprised us (well, not really if you remember this) by pulling her tube out Thursday night. Thankfully it went in relatively easily and we were able to continue feeding her through the night. We are hoping that the doctor will replace it with a more flexible type of Ng tube that is designed to stay in for a few weeks at a time when we go for our follow-up appointment on Wednesday.

These two turkeys love their sister, too! Zachary and Aaron love to pose with Rebekah.

Speaking of Wednesday, we have another follow-up appointment with our cardiologist also. The two doctor's offices are conveniently located in the same building, so we will be able to go from one to the other easily. I know we will have an echo done on Wednesday, but I am not sure if there will be any other tests done.

Mommy loves the headwraps with bows! :)

We are hoping for a good weight gain when we have our check-up this week. I'm personally hoping for at least 8 ounces....we'll let you know!!

Have a blessed Lord's Day tomorrow!

Nancy

Good News, Bad News

The good news is.....I am posting! The bad news is....I was going to post pictures and couldn't get them uploaded. I will try again tomorrw. :)

Now for the real good news/bad news. The good news is that Rebekah gained six, yes, count them - six! - ounces last week. That was the largest weight gain in her life...literally! :) We were very excited that Rebekah gained so much. She probably won't find that very exciting in 20 years, but we're cheering for it now!

And now, for the rest of the story.....since Sunday Rebekah has been much more tired during her feedings. Actually, she has been tired to the point of drinking about half of her bottle and then sleeping for 15 or 20 minutes only to wake up hungry and finish the bottle. She has also been spitting up her medications about once a day, and that's not helping her tummy issues!

The solution? A feeding tube. Yes, I know, it's not the route we had hoped to take, but it seems that Rebekah is telling us that it's time. For now we have an Ng tube (nasogastric tube) which is inserted in her nose and ends in her stomach. The good news is that all of her medications and milk can be sent effortlessly to her stomach with no effort on Rebekah's part. The bad news is that it significantly increases Rebekah's reflux because the tube prevents the valve at the top of the stomach from closing completely.

So the plan is to feed Rebekah by bottle as much as she will take in twenty minutes. If it is at least 50cc's (almost 2 ounces) then we call it a good feed. If it is less than 50cc's, we will push the rest into her tube with a syringe. During the night Rebekah will be getting continuous feeds of 15cc's per hour to see if we can boost her growth and weight gain a little more.

Since the feeding tube was inserted this morning, Rebekah has had three episodes of spitting up significant amounts of her feedings along with some medication. They all occured during bottle feeding, not while she was on continuous feeds. We are waiting to see how she does through the night and will be talking with the doctor in the morning to reevaluate the plan.

We would appreciate your prayers for Rebekah's growth and comfort and also for wisdom for us and for Rebekah's doctors as we try to find a feeding plan that works for Rebekah.

Nancy