New place to follow

www.facebook.com/rarerebekah

Plastics

We have a plastics consultation again today to see what we're going to do about her cleft

Sweet

She is so amazingly awesome!

Blessings

Rebekah has been such an example of God's glory to so many people. She is so truly amazing and a wonderful blessing to all who meet her, see her, and read about her.  (Oh, and she came home Wednesday evening).

Lungs

They just did rounds: The doctor thinks that her lungs just got overworked, so their plan is to move her out to the floor when a bed becomes available and to just support her until she is back down to 1L of oxygen again. His projection is a few days of hospitalization

Weight gain

She is now 12lbs 3.8oz!

Again

She had a rough morning; she needed more oxygen this morning but went back down. She has been very lethargic all day: she didn't even wake up when she needed a diaper change which is very unusual for her, so the doctor wants her to be taken back to Winston for an evaluation by Dr.

Princess

Who's a princess? Me? Well, I do have a giant diamond ring rattle.

Sorry

Sorry it has been so long since I posted an update. Rebekah is currently doing well. Last Monday, she was admitted to the hospital and kept until Wednesday for a UTI. She is still on antibiotics for that. She had a heart echo while in and they (the lovely cardiologist team) decided to that she can no longer be weened down below 1LPM of concentrated oxygen through her nasal cannula. Her primary cardiologist also made it a point to tell me, again, that she has a combination of heart defects that are not normally found in living people and that they are opposing defects. This means that it is difficult for the cardiology team to know what to do for her because, if they fix one thing it will potentially, and likely, make other things worse. He also reiterated that they are not sure how her heart is working in the first place.  While it is so nice to hear that she is a miracle just for being alive (more than most), it is not very comforting to know that one of the best cardiology teams in NC has no clue how to help my baby heal, even with all the prayers for wisdom and guidance. It kind of makes me wonder what they do know.
    On the brighter side of things, there is a Mended Little Hearts calendar photo shoot at noon this Sunday where all the local CHD kids can dress up as what they want to be when they grow up and get their pictures taken. Niya, my older daughter, is excited because she gets to have her picture taken with Rebekah. They are both dressing up as ballerinas (Niya's choice, since Rebekah can't really tell me what she wants to be).

CDSA Updated Evaluation

     Today Rebekah was reevaluated for services through the Child Development Services Agency. This agency coordinates her various therapies. She scored within the normal range for language :) She was in the "concerning stage" for fine motor skills, cognitive abilities, and social-emotional skills. She scored as "delayed" in the gross motor skills and the self-help skills area (this one was because she doesn't eat by mouth). She's been receiving physical therapy the whole time, but they are going to add play therapy to help her develop her gross motor skills, and speech therapy to work on her oral motor skills.
     She has learned to roll from her left side to her back to her right side. She can't quite go in the other direction yet and cannot roll to her tummy or off her tummy, but it is a start! She amazes me every day.

9 months old!!!!

Sweet baby Rebekah is 9 months old. She has come a long way since her NICU stay. As a matter of fact, she lived, which is a miracle in and of itself. The doctors didn't know how long she would live (what they told us) but she's decided to write her own script for life and not let anyone but God know where it's leading and when it will end. She is such a precious blessing and a miracle.

Home again

Rebekah is so amazingly wonderful. She is such a precious gift from God. We came home and she looked around, sighed, and went to sleep for three hours (longer than she normally sleeps for one stretch). It must be such a relief to her to be able to be away from the poking and prodding of the loving hospital staff at Brenner's. Our home nurse is so great: she came out to stay with Rebekah while I picked up big sister, Niya, and picked up Rebekah's new lung pressure medicine. Niya is super excited to have her little sister back home, safe and sound. I wonder what Rebekah must think: she is taken to various doctor appointments and is out through many procedures and she never gets to voice her opinion on it all. Reminds me of the movie My Sister's Keeper a little bit. I hope she at least feels a little better each time so she realizes that it is good and not bad.

Last night

Last night, she was fighting the breathing tube so much that they really had no choice but to take it out. She was fussy throughout the night and wanted someone to hold her pacy for her. She is doing very well.

So, the pulmonary valve couldn't be stretched out, her lung pressures are too high, neither side of her heart can fully relax because the other side is too thick, and the doctor sounded dreary. They are going to put her on two lung pressure medicines in the hope that they can get the pressures low enough to qualify for open heart surgery to replace her pulmonary valve.

They've started the procedure now

Cath

They have taken her back to start putting her to sleep.

Heart Cath Tomorrow

Rebekah is scheduled to show up for her heart cath tomorrow at 10:30. This is the procedure they didn't want to do in May because they were certain she would die. Her heart structure is such that it is possible that when they correct her dysplastic pulmonary valve through angioplasty (stretching it out to be open enough to let blood through to the lungs), that her lungs will become flooded with blood because she has a hypoplastic left ventricle which is part of the problem causing her pulmonary edema. It is a delicate balance to try to figure out what needs to happen to help her pulmonary hypertension without making the pulmonary edema worse. All that's changed since May is that she has continued to grow and she was off extra oxygen for three weeks and she's been out of the hospital for 3.5 months (with the exception of the one overnight stay for the gj back on July 9). They have not said that they know how to fix her heart without flooding her lungs yet, but the stenosis of her pulmonary valve is such that they feel they need to do it before she becomes ill and has to have it done in an emergent situation. I am very worried for her, but many people have been praying for her, all over the world, so I believe that God's will will be done.

Laugh

Rebekah laughed out loud for the first time today.

Weight

Rebekah is now 11lbs 2 oz!

Ortho Appt

Her ortho appointment went well. He wants to just keep watching her since the head of her femur still hasn't developed. She does not have a curve in her spine and he doesn't think she needs braces for her wrists, just extra occupational therapy.

Doing well

Rebekah decided that she needed a little bit of oxygen to keep her stats up (by a little, I mean 0.1-0.2L), which is indicative of the heart procedure, which is scheduled for next week, is beginning to actually be needed, according to the signs to look for given to me by her cardiologist. Other than that, she is doing excellently. She spent last night in her crib, in her own room, for the very first time. Because it was her first night, I did not feel anywhere near comfortable leaving the room, so I slept, off and on, in the chair next to her crib. She did great and seemed to enjoy being able to scoot around in a circle. Of course, she did not stay laying with her head at the head of the mattress. She wanted to sleep sideways in the bed.

:D

Rebekah is doing well. She has an orthopedist appointment on Tuesday to see how her hips are developing. Her physical therapist was me to ask about braces for her wrists because she turns them in when she's on her tummy so she can't push up. The geneticist wants me to ask him about a slight curve in her spine that she noticed. I guess that will be a busy appointment.

New old pictures

These were taken on August 2nd

Head

Rebekah's neurosurgeon said she does not have hydrocephalus, even though she still has a bulging fontanel, according to the MRI she had on 8/16.

She is holding her head up so well.

Silly Girl

She is so tired! She has been fighting her nap all afternoon. Cardiology called today and scheduled her cath lab to do the angioplasty procedure on her pulmonary valve on September 10. They aren't in a big hurry and neither is she :) .

My sweet angel

Smiley

She is so ticklish!

Excellent

Rebekah has been doing excellent. Since she was sent home in no oxygen by the doctors who looked at her after her MRI and she's stayed off of it (been off for a total of 3 days now), I'd say she is better than she has been in a while. I can't believe she saw at least 5 doctors last week for her various specialty needs. She definitely receives a good deal of medical care. Not to mention, she has nurses at the house 4-5 days a week. Pretty awesome that I can go to the grocery store or take Niya to the park and not have to worry about taking Rebekah out. God has been so good to us. 

All done

My big girl was finished quickly and sent home happy.

Recover

She is in PACU and did so well that she was extubated prior to leaving the MRI room. She's a little glassy-eyed from the Ketamine but is already back to almost no oxygen!

Halfway through

No matter how much I see Rebekah go through, I don't think I will ever be used to seeing her eyes taped shut and a breathing tube down her throat. She is done with her gj replacement and is currently getting her MRI on her brain. She didn't like the gas they tried to use to put her to sleep so they used her good friend Ketamine. When we walked over to MRI, the anesthesiologist said she was doing really well.

:)

Heart echos are so much fun. Cardio appointment was interesting: her cardiologist has decided that, since she is doing so well, she should go ahead with a cath lab procedure within the next month.

Happy

Rebekah is doing well. She gets her "real" gj and has an MRI Friday morning, which will hopefully reveal the reason she has hydrocephalus. Today she enjoyed playing with her keys.

Weight Wait

Rebekah is now 10lbs 6.5oz! Yay for such a big girl! We had our first plastics consultation today for her cleft and he wants to wait until she is a bit bigger and see if she can maybe get some of her heart issues resolved first or if she will need the cleft surgery first.

Doing ok

Rebekah is still doing well.

Pacy is Mine- Hands off

Pictures

Rebekah is now 10lbs even! She is getting SO big! The neurosurgery team is going to continue to observe her fontanel because it seems fairly stable right now and will see her again in 4 weeks. 

Ok

Update

Rebekah has continued to stay happy and her fontanel is about the same as it was when we left the hospital a few days ago. 

Bulging fontanel

Yesterday, Rebekah had a cardiology appointment which went great. The doctor was very pleased and she doesn't go back for a month! She also had a neurology appointment per a referral from Dr. Jewitt to establish a baseline exam for neurology. Her fontanel had been bulging since Monday and had been carefully watched by the at home nurses and myself. The neurologist put in a call to neurosurgery and she was sent to the ED to have a hydrocephalus MRI. The results were that it looked similar to her head CT back in MAY so she was sent home and told to come back in a week. The earliest appointment happened to be the 30th, so that's when we will follow up.

Sneaky

Rebekah has been doing great. I woke up this morning at 3am to add more food to her pump bag and discovered that she had apparently decided that she did not need to wear a diaper and then proceeded to pee all over. She was sound asleep, but I felt that she needed to be cleaned and she didn't wake up until I was almost done changing blankets under her. Memories!

Growing

Rebekah is now 9lb 6oz! Woohoo!

Out already

Well, that was the fastest stay ever. They didn't have the button she needed so she had a straight j placed until the special ordered gj gets in and can be placed next week. Yay for getting to go home so quickly.

Gj tube

Rebekah had to be admitted to the hospital (general floor) because her gj tune came out and the people that put them in only work from 9-5. It won't require surgery or anything like that. She'll just go do to the X-ray floor so they can see where to place it because she already has an access point. She'll get to go home right afterwards. It feels strange to have been admitted for a non-health problem. She just had to have an IV so she could get nutrition while we wait. 

Doing well

Rebekah continues to do well at home. Since her tube surgery, she has not refluxed any bile at all. 

Month+ in pictures

Some people requested More pictures, so here they are. I did not duplicate any from previous posts.

Shortly after being home.

Sitting with Aunt Kate.

Sister Time

Smile caught by sister at home.

Sleeping before Tube Surgery.

Waiting to be called back for tube surgery.

Bright eyed and bushy tailed on July 3.

Sitting with sister shortly before tube surgery.

Sleeping in her car seat today. The nurses started using it so they could rock her more than in her monkey seat and now she loves it, so long as she isn't strapped in.