Happy Five Months!

Rebekah is officially five months old today! Time seems to be flying by - it really doesn't feel like we headed to Charleston to begin this adventure five months ago.

As you know if you have been following the blog, Rebekah is still struggling to gain weight. This has been her biggest challenge so far. We have been seeing Rebekah's dietitian weekly for weight checks and adjustments to Rebekah's feeding plan. The frustrating thing is that we haven't seemed to be able to find the "magic" combination of feeding times and amounts to allow Rebekah to gain weight. In the last few days, Rebekah seems to be showing an intolerance to the formula that we are using to fortify her milk, so we are back to the drawing board to figure that out.

Developmentally, Rebekah is really making some good progress! Of course she is still not where the boys were at five months old, but we are really pleased to see how far she has come in the last month or so. Rebekah is holding her head up on her own almost all of the time now. She does tire easily, so we don't push her for long periods of time, but she is getting stronger all the time. We are currently working on teaching Rebekah to roll over. She is getting to be a pro if we help her by rolling her onto her side first. Then she can get right to her tummy or her back on her own. Rebekah is also working hard at playing with her toys - grasping toys in both hands, bringing toys to her mouth, and turning her head both directions to follow a toy or some other object. Our therapists have been great in helping us learn how to work with Rebekah on her developmental skills.

Mommy loves Rebekah's dimples!

Other than therapy this week, Rebekah has her weight check and an appointment with the infectious disease doctor. I'm not sure exactly what they will be looking for or testing, but they will be checking her immune system. I think it will involve labwork, so please pray that it will go smoothly!

We will update later in the week after Rebekah's doctor's appointments and let everyone know how things are going.

Nancy

Charleston

What a day! It was a long day, but Rebekah has her Mic-key button now. It was not without a little trouble, though. Her old tube seemed to be perfectly happy right where it was and had no desire to come out, so it was a little painful for Rebekah. The new button is in now, and it will be much nicer for Rebekah. After a couple of doses of Tylenol and some sleep on the way home, Rebekah seems to be feeling a little better.

Rebekah has occupational therapy in the morning, so we're off for hopefully a good night's sleep!

Nancy

Disappointing

I have to say that Rebekah's weight check today was disappointing. For the first time in her struggle to grow, she actually lost weight this week. Not much - just an ounce and a half, but still it's not the way we want to go. So our dietitian is tweaking Rebekah's feeding plan again. We will have another weight check next Tuesday. We (Rebekah's doctors and Drew and I) are really working hard to find the right combination of feeding amounts/times/frequency that works for Rebekah. Too little and she doesn't grow; too much and she becomes overfed and refuses to eat at all. This is a very difficult and very frustrating hurdle for us to get over right now. Please pray with us that Rebekah will be able to gain some weight this week.

Rebekah "talking" to her brothers!

On a brighter note, Rebekah's endocrinologist had nothing but good things to say about Rebekah today. He was so pleased with how she was doing that he didn't see a need for labwork today. Rebekah will be seeing an infectious disease doctor in the next few weeks to follow her immune system, so we will be able to check her calcium and vitamin D levels during the labwork that the infectious disease doctor will require. Rebekah didn't know enough to be happy about getting out of the labwork, but it sure made my day! She is a hard stick and the last blood draw we had was rather rough.

Tomorrow we are heading to Charleston to change Rebekah's tube for a Mic-key button. It should be a quick in-office procedure, so hopefully we will be back tomorrow evening. We will try to update tomorrow night and let everyone know how things went.

Nancy

Updated prayer requests

We seem to have found a break in the chaos here. I thought I would take some time to update the prayer requests for Rebekah and the family. We appreciate all of you who have faithfully prayed and followed along with us as Rebekah has joined our lives and begun her long journey. Please check out the updated side bar to the right for our current praises and prayer request.


D

Feeding......

Bekah is not responding well to the increased feeding. We are trying a totally new approach for her feeds for a week. We will let you know how it goes. Hopefully we can get this little girl figured out. I some how misplaced the manual on her.....

D

What's Up, Doc?

Rebekah is feeling a little grumpy tonight since she had shots at her well visit this morning. She is letting us know that she isn't really appreciative of the effort we made on her behalf to vaccinate her! :) After a bottle and a few more complaints, she is now sleeping peacefully on Daddy's shoulder.

This has been a busy week of doctor's appointments for Rebekah in addition to her regular therapies. On Mondays, Rebekah's Early Interventionist comes to see her for an hour, followed by an hour of Physical Therapy. Rebekah's Speech Therapist comes on Wednesdays for a half hour, and we have Occupational Therapy on Thursdays for an hour. Of course, that schedule is all subject to change depending on the doctor's appointments that are scheduled for any given week.

All this therapy is hard work and makes Rebekah sleepy!

This week Rebekah saw Dr. Lucas on Tuesday. I mentioned to Dr. Lucas that we had seen a few things in the last couple of weeks that we have not noticed before. Several times Drew and I have noticed that Rebekah's heart rate is elevated significantly and her breathing becomes more rapid. Also, Rebekah has been sweating for no apparent reason. When Rebekah's O2 sats were measured on Tuesday, she was a little higher than her normal. A person with a normally functioning heart would have an oxygen saturation level at 100%. Because of her heart defect, a "normal" oxygen saturation level for Rebekah is in the 85-90% range. On Tuesday, Rebekah's sats were hanging out around 94%. All of that combined to give Dr. Lucas hope that the collaterals are finally starting to grow and that is causing extra work for her heart. The plan for now is to give Rebekah a little more Lasix to rid her heart of a little more fluid and plan for a catheterization sometime in January or February. We are praying that the collaterals are indeed growing and will be large enough for the surgeon to work with to make and artery to connect Rebekah's lung to her heart.

I love chewing on my fingers!

After visiting Dr. Lucas, we went downstairs to see our friends in the GI office. We were a little disappointed to find that Rebekah had only gained an ounce in the past week. So we are increasing her intake again (from 95cc's per feeding to 105cc's per feeding). The doctors are closely watching Rebekah's growth, but they are not necessarily looking for a specific amount of weight gain. What the doctors are looking for is that Rebekah grow following along her growth curve, and right now her curve is a little flat. We are working to give that flat line a little upward curve.

Rebekah has also been chewing on her hands and fingers a lot more in the last week or so. All of the boys cut their first tooth when they were five months old, and Rebekah is 4 and 1/2 months old this week. We'll see if she follows in her brothers footsteps!

Next week's agenda includes a trip back to GI to check Rebekah's weight gain and a trip to visit the endocrinologist. Rebekah will have labs done to check her calcium and vitamin D levels, among other things. On Wednesday we head back to Charleston to get Rebekah's g-tube changed to a Mic-key button. This one will sit flush with her skin and not have any tubing attached to it unless we hook the tubing up to use it. Hopefully, there will be much less of a chance of Rebekah pulling it out, and dressing her will be much easier! They will be able to change the button in the office during a regular office visit, so this trip will just be down and back in the same day. Please pray for traveling safety for Rebekah and I as we travel and for no problems getting the button changed when we are there.

Until next time,

Nancy

Weight gain??

Miss Rebekah is plugging along. She is very busy with lots of doctor appointments and therapies. She seems to be responding well. This week she was removed from some of her medications. This has caused her to be much more awake and alert. She follows her brothers everywhere with her eyes. She likes to cuddle and play with her brothers. She has begun to make lots of faces and started a little bit of noise or chatter. I put her in her chair so she could watch the boys eat their breakfast before school the other morning, and she ate it up with Justin. He kept talking and goofing for her and she cooed and tried to giggle at him.

Rebekah did have a GI check up this week. She is gaining a little weight, but still not enough. They have increased her intake to 95cc's a feed. We are trying to fatten her up. I think she is now over 9lbs. We are hoping to see some bigger progress this week or we may have to go back to continuous feeds at night on a pump. We will see.

Mom and Bekah are returning to MUSC to have her button replaced with one that is not so cumbersome on the 18th. Hopefully this will be our last trip for a couple months. The next trip should be the heart cath. to determine if Bekah is ready for surgery.

Looks like we should be able to have a somewhat quiet and relaxing Christmas all together. I think that is about it for updates for now.

Thanks for your prayers and continued support for our little Rebekah Grace.

D