Continued prayer for our little lady

Rebekah has had a busy week so far. We met with the cardiologist here at home yesterday. Lots of info and I am sure my wife will post more when she has time. But the biggest concern at the moment is that Rebekah is having trouble with her feeds. She is so tired out that she has been sleeping 6 hours at night. While normally this is a good thing, for her it means she is missing a feed. She has very low endurance right now and just the short time during her echo yesterday exhausted her. We are going for a weight check tomorrow, and if we don't have some forward progress, they are going to get aggressive with her feeds. The first step will be to fortify her milk with even more calories than it is fortified with right now. After that, the doctors would try to hospitalize her in Greenville and feed her through an NG tube like she had in Charleston. They would try that for a week to see if she can gain a little weight without expending the calories to eat. Sometimes babies need just a little extra growth to get over the hump and begin to eat well on their own. If those two options still don't produce the growth that the doctors want to see, we have been told that Rebekah will probably have to go back to Charleston for a G-tube. We knew this might be a possibility, but were hoping it would not be necessary.

As far as Rebekah's heart, it is doing great. She is retaining very little fluid and her heart function is very good. Her lungs are also doing well right now.

We hope as you think of us and Rebekah that you would continue to pray for us. While we have gotten through the scary part and returned home for now, there are still many miles to go down the road. We ask you to continue to pray for Rebekah's growth, and our adjustment to a new kind of "normal" for our family. The boys are doing great and have been wonderfully helpful, but it is still a lot of adjusting for all of us to make the family run again. Also continue to pray for the Lord's gracious provision for all our needs financially and emotionally.

We have to give all the praise to the Lord. He has lifted us up and walked us through all of this adjustment and adventure. Through all of this He has given Nancy and I the most precious gifts, our children.

Once again thank you to all the family and friends who have prayed and given to help us.

D

Settling In

As you can well imagine, we have been busy trying to settle in and get things back to normal, or at least for us, a new normal. As normal as can be with the addition of a small female into a house full of small males, that is!! :)

Rebekah all dressed up for her first pediatrician's appointment.

Friday morning Rebekah had her first visit with our pediatrician. We were excited to show her off! Rebekah weighed in at 6 pounds and 5 ounces, so she has gained a few ounces since her discharge (or there is a slight difference in the scales!). We prefer to think she gained a few ounces. ;)

Rebekah will be referred to a geneticist to follow her DiGeorge syndrome, as well as an endocrinologist to advise us on a list of potential scenarios that might come up due to DiGeorge. Some of what the endocrinologist will be watching includes Rebekah's calcium and potassium levels, her growth, and her thyroid and parathyroid glands. The parathyroid is also involved in the immune system as it produces T-cells which are building blocks of the immune system. There is also a good chance that Rebekah will add several other specialists to her lineup, but we are starting with these. Oh, and she will also receive speech and occupational therapy to continue working on building up her endurance during eating and to get a head start on any potential developmental delays that may come from her hospital stay and surgery and from the DiGeorge syndrome.

My first tub bath!

Rebekah had her first bath in a "real" bath tub! Because of her healing incision, we could not giver her more than a sponge bath in the hospital. But as long as we don't let her soak in water that covers her incision, we are able to bathe her in an infant bath tub. She wasn't very sure of it at first, but she likes having her hair washed.

Rebekah in her swing - she's studying the toys.

We had been warned that Rebekah may have an adjustment to being home after her long hospital stay, and especially that it might be hard for her to sleep at night. In the hospital, there is always some level of light, although it was much dimmer when she moved to the step-down unit. And there is constant activity of monitors beeping, people talking, doors opening and closing and nurses coming to check in. After all of that activity for almost four weeks, we were not sure how she would do at home in a relatively quiet setting. If you don't count the boys, that is! Thankfully, Rebekah has done very well. She sleeps in her own crib in her own room with only a night light on. We do have a monitor in her crib so we can hear her, but she has done just fine. She can even sleep through her brothers' loud and rambunctious playing!!

Zachary loves to help with Rebekah; he even changes diapers (with supervision) and enjoys picking out Rebekah's outfits!!

Justin is very protective of his sister and usually anticipates what will make her more comfortable.

Aaron loves to hold Rebekah and is taking hand washing VERY seriously!

Caleb is the most fun to watch. He wants to touch "Dekah" and is fascinated when he hears her crying. He did a little happy dance when he got home and saw her.

Watching all of my brothers is hard work!

This week will prove to be a busy one as we get back into our regular schedule. Rebekah has her first cardiology visit on Tuesday, and we are hoping that everything looks good. She is doing well with her eating, but we feel that she maybe could do a little better. Her system seems to be slow in emptying and it seems like things get backed up with an eventual spit-up eruption. She also wants to sleep about six hours straight at night (Mommy is not complaining!) but we are having a hard time getting in the extra calories from that missed feeding during the day. Rebekah just gets tired out from eating, and sometimes she tires before she finishes all of what she needs. Please pray specifically that she will build up some endurance and be able to take all of what she needs from a bottle. The next step is a feeding tube, and we don't want to go that route if we don't have to!

More pictures and updates to come later....right now the little girl needs her next bottle! :)

Nancy

Big Praise - WE ARE HOME!!

We have some wonderful news to share! The Lord is great. Rebekah is doing so well that the doctors sent us home yesterday evening. All three of us were so pleased to be home and sleeping in our own beds.

We would love to see everyone and want to share our little miracle with all of you, but due to Rebekah's health needs, the doctors have asked us not to expose her to a lot of being around people for a few weeks. So we are asking that you not visit just yet, especially if you have been sick or have been around someone else that is sick. We have so many of you that we want to see and share Rebekah with, but we just need to give her all the chances we can to stay healthy and growing to prepare for the next surgery. We are pleased she is doing so well, but have to remember that she still needs her heart and lung fixed soon.

We thank all of you for the prayers and support that have gotten us through the first few weeks. We can't wait to share Rebekah with you and we hope that you continue to pray for her as we take the next steps in this adventure in Rebekah's life.

We should have the boys home tomorrow and then we will be a family again. I am excited to see how they will interact with Rebekah now that there are no wires and tubes attached. Sister is finally here and at home to complicate their lives.

We are so blessed with all of our kids and thank the Lord for five wonderful gifts to take care of.

D

P. S.-If you didn't catch it on our family blog, I have a 3rd interview on Wednesday next week. Lots of praises today.

Big Surprises!!

Look closely.....Rebekah is missing her NG tube!!!!!! And, no, she did not pull it out herself this time! Rebekah's nurse took it out per doctor's orders. Rebekah has done so well bottle-feeding that she was given the okay to lose the feeding tube for today to see how she would do. Five bottles later, we are still tube-free!

Lookin' good!!

Also, Rebekah has been gaining a little bit of weight! She was six pounds and two and a half ounces at her weight check today. We are attempting nursing at some feedings, and by the last time today Rebekah had latched on and was sucking a bit. It will be a slow process to work up to nursing because it tires her out more. We are only trying every other feeding right now so Rebekah doesn't use all of her energy eating and not growing! As far as the reflux goes, Rebekah seems to be much more comfortable and having less episodes of reflux. She did spit up quite a bit at her noon feeding today, but that was the first time in two days. Hopefully between the medicines, the bottle feedings and the removal of the NG tube, her episodes of reflux will diminish.

Rebekah really enjoys the swing that her nurses brought in for her.

We are still optimistic that we will be home before Rebekah's one-month birthday. The doctors haven't made any firm promises, but things are looking good. For anyone who may have sent mail, we have been assured that anything that comes after we leave will be forwarded. We are looking forward to having some normal, boring days at home with all of our kids in the same place!

She's so talented!! :)

Rebekah would like to wish Uncle David a very happy birthday!!! Maybe next year we can celebrate together, but for now this is the best we can do!

Nancy

Swallow Study #3

The results are in, and Rebekah is cleared for take-off; well, in the eating department, anyway! She passed her swallow study today which means that she can have any kind of liquids from thick to thin! Our first attempt at nursing will be later this afternoon at her next feeding. We're excited! :)

Dr. Hsia came by earlier today and told us good-bye. He said he will be looking forward to seeing us again, but not for 4-6 months. It's nice to feel that we aren't really wanted here anymore!!! :)

Nancy

Three Week Recap

It's hard to believe that in three week's time, we have gone from this.....

to this!!

Rebekah managed to sleep right through the floor buffer outside her door. :)

In those three weeks, Rebekah has had countless echocardiograms, chest x-rays, a CT angiogram, a heart catheterization, open heart surgery to place a band around her left pulmonary artery, two swallow studies and an upper GI. Not to mention learning how to breathe with only one lung, and learning to eat with an NG tube down her nose and throat! I'd say we've made incredible progress! Our little girl is definitely a fighter!!

This morning we had the best news yet - Rebekah drank ALL of her first bottle today!!!! She actually showed off a little bit and drank a few more cc's than what her target is. Overachiever! She did so well, in fact, that her speech therapist has scheduled Rebekah for a repeat swallow study this afternoon to see if she will now be able to drink thin (or regular) liquids. The repeat swallow study was something that we were prepared for a few weeks from now, so she has made excellent progress!! There is a possibility that if the swallow study goes well, Rebekah may be able to breastfeed for at least a portion of her feedings. Yippee!!!!

Rebekah sends her love and hugs. It has been rumored that Rebekah may be able to go home before her one-month birthday on July 29. But don't tell anyone....we'll keep it a secret! :)

Nancy

Sunday's Snippets

Rebekah has had a fairly uneventful day today. We started out with a bottle at noon. Rebekah finished about half of the bottle before she was ready for a nap. She drank almost 30 cc's (30cc's = 1 ounce). Our 3:00 feeding was through the tube to let Rebekah rest some more, and we will try the bottle again at 6:00. She will have another tube feeding at 9:00 then a bottle at midnight. As long as she is tolerating her bottle well, we will be adding in one more bottle feeding each day until she is drinking a bottle at every feeding. What she doesn't finish from her bottle, she gets in her tube to ensure that she is still getting all of her required nutrition.

Daddy got Rebekah to drink more than Mommy!!

Don't. Touch. My. Paci!!

Trying to get the burping thing figured out.

Ready to go back to sleep after all of the excitement!

Today has been a fairly quiet, low-key day. We are just enjoying Rebekah and letting her rest so she can have another good bottle feeding. About half of the kids on our floor were discharged Friday or Saturday, so there are only five of us left in our unit now. It's kind of nice and slower-paced. I'm sure it will fill up again soon!!

Enjoy your Sunday!!

Nancy

On the move again!

Rebekah now has a new room - and, no, it's not at our house! It would be nice, but she still has a ways to go before that happens.

Our former room (#786) was at the end of the hall farthest from the nurses station. When several patients on this floor were discharged yesterday and today, the nurses gave us the opportunity to move up closer. I think we are going to enjoy our new room! I especially like the new view from the window - I can actually see some of the city streets and part of the ocean! :)

So, our new room is #779. I have updated the side bar with the new address and phone number. No worries; if you already sent something, it will get to us. All of the nurses on the floor know Rebekah! :)

Rebekah did exceptionally well with her second bottle today. She drank 42 cc's of thickened, fortified breast milk from her bottle. Our feeding goal is 54 cc's, so she is well on her way toward that goal! Once she is able to drink 54 cc's at one time, we will work on adding more bottle feedings each day until she is completely drinking from a bottle. Rebekah did reflux and spit up some with the bottle, but not too much. We're still working on coming up with a plan that works well for Rebekah.

Have a good night, all! Thanks for the calls, emails and prayers.

Nancy

Pictures!

Rebekah somewhat grudgingly cooperated with Mommy's picture taking. We did get some cute ones out of all of the ones we took. Then she promptly settled in with Daddy and took a nap! :)

Just let me sleep!

I love the butterfly and baby toes.

Priceless!

Nancy

Due Date!!

Today was Rebekah's official due date! Obviously, she had other plans!! :) It is almost overwhelming to think about all that has happened in the last three weeks. We arrived in Charleston three weeks ago today, and what an adventure it has been!

I had a fun start to my morning today - I got to feed Rebekah a bottle for the first time!! She did very well and drank about 28 cc's. She did have some reflux and spit up some of her feeding, but the doctors and nurses are still very excited over her progress. In fact, one of her doctors (who had been leaning toward the feeding tube) told us this morning that he was very glad that Rebekah had another swallow study. The doctors did increase one of Rebekah's reflux medications in the hope that she will be more comfortable and not refluxing as much. Now we have to wait and see if Rebekah's digestive system will tolerate a full feeding over 30 minutes. According to Rebekah's speech therapist, Diane, if the feeding is longer than 30 minutes, then babies are burning more calories eating than they are taking in. Obviously that will not help her grow! So, the feeding tube possibility is still lingering out there. We are just going to give Rebekah every chance to bottle feed that we possibly can.

Rebekah has had her bath already this morning and is dressed in a cute yellow outfit with butterflies. Drew and I are going to try to get some pictures this afternoon after she's had some time to rest.

Happy Saturday!! :)

Nancy

Busy little girl!

Rebekah started her morning out by waiting. Her swallow test was bumped back from 9:30 unitl 1:30. So in the meantime, she slept through her doctors' rounds, had a feeding, and got all of her lines and leads taken off for bath time!

Daddy holding Rebekah with nothing attached (except the NG tube)!

Rebekah's surgeon's assistant, Kathy, told us that Rebekah's incision looks great, and gave us the go-ahead to take off all of the steri-strips from surgery! We are pleased with how well her incision is healing. All of the redness around it is from the tape, not because it is infected. Rebekah seems to be sensitive to some of the tape used in the hospital and sometimes when the tape comes off, her skin is red for several hours.

Look! I'm free!!

Of course, after bath time, we had to put all of her leads back on so she could be hooked up to the monitors again, but it was nice to have her free for a little bit! To be honest, the thought of taking her home with no monitors is a bit scary. It's so reassuring to know exactly what her heart and lungs are doing at any given time.

Shortly after bath time, the radiology assistant came to get us for Rebekah's swallow study. She did very well, and is now able to take thickened liquids from a bottle. The consistancy that we have to thicken it is "nectar," which is a step thinner than "honey," but not as thin as milk. :) Who knew it was such a science to make a bottle?? There is a thickener that we will be adding to her fortified breast milk so that she can drink from a bottle without aspirating. The speech therapist is recommending another swallow study in a few weeks to check Rebekah's progress. She feels that if Rebekah does well on thick liquids over the next few weeks, that we will probably be able to move on to thin liquids.

Rebekah trying the bottle again!

The doctors certainly don't waste time here! About twenty minutes after Rebekah's swallow study was finished, she was having a trial run at the bottle. Her speech therapist was very pleased with how well she did. In about 30 minutes, Rebekah met just over half of her feeding goal - she drank 27 cc's (almost one ounce)!! We still have a long way to go in the feeding department, and there is still the possibility for a feeding tube if the medications can't control Rebekah's reflux well enough for her to grow, but we had a great start!! Tomorrow Rebekah will have two bottles - morning and evening - and her doctors and therapists will be watching to see how she does with those before committing to any longer-term plans.

Rebekah has had a couple of episodes of her heartrate dropping today. It hasn't dropped to dangerous levels, just abnormally low for where Rebekah's heartrate usually is. Because of her particular heart defect and the fact that it is not repaired yet, Rebekah's heartrate is usally in the 140's - 160's. Today we have seen it as low as 86 one time, and several times in the 110's and 120's. Rebekah's nurse has let her doctors know about it, and they said they will be monitoring it closely over the next couple of days. We have no idea what may be causing her heartrate to drop, so we'll wait and see what it does from here.

We had a nice surprise today! We got a package from a ministry called Until Journey's End. Basically, they support families who are away from home due to long-term medical crisis. It was fun to open up a box of all sorts of goodies!! They sent stamps, notecards, travel size toiletries, gift cards to restaurants, a laundry bag (we needed one for Bekah!!), Drew's favorite pens, notebooks, and my personal favorite - a beautiful pink picture frame with Rebekah's picture in it - the one of her first smile!! Thank you, Tiffany, and everyone else involved in putting our package together. You made our day! :) Please take a minute to check their website and pray for some of the other families that they are supporting.

Nancy

Swallow Study

Just a quick update - When we got to the hospital at 9:00 this morning, Rebekah's nurse told us that her swallow study had been rescheduled to 1:30 today. We will update later with results (hopefully we will know sometime this afternoon what the doctors think about it!!).

Nancy

Thursday again!

Believe it or not, Rebekah is now 4 for 4 in the feeding tube department! Yesterday evening she pulled her feeding tube out again, so here is the daily picture with no tubes! :) I don't feel so bad this time - Rebekah's nurse actually had her hands on Rebekah and wasn't fast enough to stop her from pulling the tube out. At least it's not just me! :)

Our sweet little girl!

Rebekah is still scheduled for her swallow test tomorrow. She will be the first case, but we still have not heard what time that first case will be. Last night was a bit harder as Rebekah struggled with her reflux with almost every feed. At one point, her nurse had to come in and suction her because she was choking. The doctors are still not willing to commit for sure, but in our opinion, it looks like Rebekah will be coming home with a feeding tube. We'll wait to see what they say tomorrow!

Drew got here just in time to help with Rebekah's bath this morning! Rebekah had a busy morning with doctors, daddy coming, vital signs, a weight check and a bath!! Rebekah weighed 6 lbs. and half an ounce this morning. We are never quite positive about the weight since she still has some leads and monitors attached, but the good news is that at the very least she is remaining stable and not losing weight!

The doctors hope for Rebekah to have a good day today and spend time sleeping and growing. There has been talk of trying to compress her feeds to 45 minutes, but we are cautiously waiting to see if that happens or not. She seems to still be struggling with feeds over an hour; I can't imagine what she will do when she gets it in 45 minutes!

That's about all for now! We're off to find some lunch! :)

Nancy

Wednesday

Rebekah finally got her bath around 9:30 last night. She was not really pleased by our efforts to clean her up, either! :) It is so fun to see her whole tummy now that everything has been removed. The larger wound at the bottom of her incision is where the chest tube was, and the two smaller wounds on either side of that are where the pacemaker wires went into her heart. All of those are now gone until our next surgery!!

Rebekah was not appreciating bath time as much as Mommy was!

I actually was able to speak to Dr. Ringwold this morning about several questions we had. First, Rebekah's calcium looks great - the best it has ever been in her little life! They will recheck it again tomorrow (more for my peace of mind than anything) just to make sure that it is continuing to remain at acceptable levels. So for now it looks like she will not need a calcium supplement, although that could change and fluctuate throughout her life.

Now to discuss Rebekah's feeding......She is scheduled for a follow-up swallow test on Friday. We are not sure yet of the exact time. Dr. Ringwold was very honest with me this morning, and his feeling is that Rebekah will need to go home with a feeding tube. She has so many factors that she is working against in order to eat, and the goal for the next few months is growth. At this point, the doctors are more concerned with her growth than they are with how she is eating. So, given the fact that babies with DiGeorge syndrome are typically small and have a hard time growing, and the fact that our babies tend to be small anyway, and the fact that Rebekah is aspirating both her feeds and reflux, and the fact that she only has one truly working lung and doesn't need it infected from aspirations, and the fact that she is refluxing significantly and add to all of that the fact that she is a heart baby and recovering from open heart surgery, the doctors feel it is in her best interest to move ahead with the feeding tube. (Anyone want to diagram that sentence???? :)

All clean and cozy and ready for a nap

There has not been a final decision made yet, but it is likely that Rebekah will have surgery again by the beginning of next week to put a permanent feeding tube (called a G-tube) in her stomach. I won't give a lot of details now because there are several different options the doctors could choose with the feeding tube surgery, but we will be sure to let you know more information about it when we know for sure what is happening.

What we do know for sure is that most babies with DiGeorge do have a feeding tube for the first year or so of their lives. During that year, Rebekah will continue to receive OT so that when she is able to eat by mouth, she will have built up the muscle tone and coordination of everything involved in the eating process. Rebekah is also having trouble with her feedings compressed to one hour. About half of the way through the feeding, she becomes very agitated and cries a lot. It is likely that compressing the feeds over a shorter period of time is probably going to distress her even more. If Rebekah does have the G-tube put in, she will go home with a small pump that we will be able to put her milk into and we will be able to run it over a time that is comfortable for her.

Other than the feeding issue, Rebekah is having a great day! She is sleeping lots and looks so peaceful snuggled up with her blanket and teddy bear. :) Drew is probably coming back down tomorrow, and I know that Rebekah will be happy to have her Daddy back - and so will I!! :)

Nancy

Tuesday

Today has definitely been a day of ups and downs! After Rebekah's refluxing incident yesterday, the doctors felt it was in her best interest to do a swallow study and an upper GI. The results? Rebekah is aspirating both thin and thick liquids into her lungs. This rules out bottle feedings for right now, although she is scheduled for another swallow study on Friday. There is a time limit on how long a baby can be under the special machine that allows the doctors to see where the liquid goes when it is swallowed, and the doctors were not able to get a liquid thick enough during their time limit today. On Friday, they will start where they left off today to see if Rebekah will tolerate even thicker liquids. If so, we will thicken her milk and still be able to feed her a bottle. If not, we are looking at going home with a feeding tube for a few weeks or months until Rebekah's body is coordinated enough to not aspirate her feeds.

Isn't she cute???!!

We had actually been warned that aspirating is a common problem for heart babies simply because their body is trying to do so much at once. Rebekah has to breathe with one less lung than you and I, she has to pump blood to her heart and lungs with a heart that is not working correctly, and now we are asking her to suck and swallow at the same time and get it to the right place! The feeding will come; it just may take her body a little time to mature to the point of being able to coordinate all of those functions effortlessly. Until then, we will give her as much help as she needs to eat and grow.

Beautiful Bekah

The other test that was done today was an upper GI. Although it was no surprise to us, the doctors found that Rebekah has a significant amount of reflux. So, in addition to the Reglan and Zantac that were started yesterday to help with her reflux, Rebekah will also be taking Prevacid. I believe the doctors also increased her dosage and/or frequency of Zantac. In spite of all of the results, the doctors still wanted to go ahead with compressed feeds today. So we moved to one hour of feeding and two hours off. That worked great until the third time they tried it. Shortly after the feeding was done (like 5 minutes or less), Rebekah refluxed a small amount. I had just finished cleaning her up and cleaning up her bed when she spit up again, and this time it was everywhere. Head to toe, all over her bed and forceful enough to lose her feeding tube. Her day nurse, Heather, came and helped wipe Rebekah off, but we are waiting for the night nurses to come in and give Rebekah a bath and get her sheets changed.

Rebekah with no tubes!!

It seems that Rebekah is earning a reputation on this floor due to the number of times she has managed to lose her feeding tube in just two days. She managed to pull it out yesterday morning, again this morning, and then it came out again this evening when she spit up. It's kind of nice to see her whole face again, but getting that tube in is not a pleasant experience.

Please remember the Kiersey family in your prayers tonight. Their baby, Avery, whose button is on our side bar, has been having a very tough week. The doctors are out of options to try, and her parents have decided to not put her through any more procedures. They are planning to spend some time with Avery tonight and then remove her from life support. I know they would appreciate your prayers as they hold their little girl for the last time tonight.

Despite all of the ups and downs we have had, we are so thankful for how well Rebekah is doing.

Nancy

Backing Up

In everything, it seems like the norm is two steps forward and one step back, and Rebekah is no exception! The nurses and doctors were so excited and confident in Rebekah's feeding, so they skipped a step, so to speak, in compressing her feeds. Rebekah was quick to let them know what she thought about that! As soon as her feed went in, it came right back up! So, we are backing up to the step that we missed today. For the next 24 hours, Rebekah will be on 1 and 1/2 hour feeds with 1 and 1/2 hours off in between.

The doctors also strongly suspect (and I completely agree!) that Rebekah has reflux. Two of our four boys had it, and apparently it is part and parcel of having a heart baby. Right now, Rebekah has had one dose of Zantac and a dose of Reglan to combat the reflux. She is tentatively scheduled for a swallow study and upper GI tomorrow to see if the doctors can more accurately diagnose the reason for her reflux. Hopefully we will get the reflux under control so she can move ahead with her eating. For now, we are not going to continue the bottle feeding until we have the results of those tests.

Otherwise, Rebekah has had a great day - she has been sleeping most of the day, but was awake briefly to meet her first visitors. Our friends Steve and Judy Selby stopped by to see Rebekah, and then they took me out to lunch (read: NO cafeteria food!!). Thank you so much, Steve and Judy. I thoroughly enjoyed seeing you again!! :)

Rebekah and I have plans to get to bed early tonight. We're hoping that we get a little more sleep tonight than we did last night. Between Rebekah's monitors, feeding pumps, upset tummy and nurses checking her vital signs, neither one of us slept much. We're hoping that the tummy problems are more under control thus leading to less beeping of monitors and less frequent beeping of feeding pumps. The nurses - well, we can't do too much about them! :) I have to say, we have had some of the best medical care here that I have ever seen. We are so thankful for all of our nurses and doctors!

Hoping you have a restful night as well!

Nancy

Feeding

Just a quick update on this morning's progress....Rebekah is flying through her feeds right now, so the doctors decided to jump ahead a step. Instead of spending a day doing an hour and a half on and an hour and a half off, the doctors wanted to compress her feeding time to one hour today. So, she gets milk in her feeding tube over the course of an hour and doesn't have any for two hours. We have also been given the green light to start bottle feeding as soon as the OT works us in to her schedule. :)

Dr. Hsia just stopped by and is very pleased with Rebekah's progress. He said her incision looks great and everything is healing up fine.

I'm trying not to get overly hopeful, but maybe - just maybe - we might be going home sooner than we thought!! :)

Our new digs!

As promised, new pictures!!! We actually didn't end up getting to hold Rebekah yesterday because some of her IV lines did not get removed until last night. By this morning, though, Rebekah was down to just a "normal" IV in her right foot in case the doctors need to administer fluids or medications through it. Currently this IV is not in use, and the nurse told us if it comes out, the doctors would probably not put another one back in. Rebekah also has a feeding tube in her nose, and today we are getting milk for an hour and a half, then off for an hour and a half. The goal is to get Rebekah's alloted amount of milk in just half an hour. Tomorrow we will be working on the bottle again. :) The rest of the wires you will see in the pictures are just monitors (heart monitor, blood pressure, oxygen, respirations).

First picture off the ventilator after surgery.

First attempt with a bottle!!

Rebekah's occupational therapist (OT) surprised us yesterday and tried a bottle with Rebekah. She drank 5 cc's of milk in about 15 minutes. Now, considering that 5 cc's is only about 1/3 of an ounce, she didn't get a lot, but we thought it was a great first try! Rebekah seemed to love the milk and didn't have any sucking or swallowing problems. Her biggest problem was that she just tired out. We will give it another try tomorrow. She has been sucking on her pacifier quite a bit today, especially when she is getting her feedings through her Ng tube. Tomorrow's feeding tube plan is for 1 hour on and 2 hours off. I have noticed this afternoon that Rebekah is starting to get a little fussy about 15 minutes before we start her next feeding. That is a good sign! She is starting to feel hungry which will help her learn to eat better. :)

Rebekah cuddled up to Mommy

Rebekah and Mommy

It has been a big change to move from PCICU to 7C. On the ICU floor, we were not able to pick Rebekah up, change her or anything else without the nurses' help. Here, we are encouraged to do anything we want to attempt with her! It has been nice to have a "normal" baby and do normal baby things. In the first two hours we were on this floor, Rebekah tested me out. She had two messy diapers, a very wet diaper, an outfit change and a severe case of hiccups! This girl is going to keep me busy!! Since then, she has had another messy diaper and had the hiccups two more times.

Daddy and his little girl

Rebekah's first outfit!!

Oh, yes! Another fun benefit to this floor is that we can finally dress Rebekah!! I'm planning to keep it to onsies for now since there is a good chance something will get spilled on, dripped on, etc, but it was fun to finally dress Rebekah. The little plastic boot type thing on her right foot is just to protect the IV the doctors put in.

First smile

Apparently, Rebekah enjoyed the move to step-down, because she gave me a few of these cute smiles this afternoon. Now, I know they are not really social smiles, but it's fun to see them anyway! :)

Along with our new room, we also have a new address! If you would like to send something, please address it to:

Rebekah Ellis

MUSC Children's Hospital Room #786

169 Ashley Avenue

Charleston, SC 29425

(843) 876-4786

Due to the heart monitors and oxygen in use on the floor, I am not able to use my cell phone in Rebekah's room. However, her room does have a phone that anyone can call to get in touch with me. The number above should dial directly to Rebekah's room. I do have wireless in the room, so I can check email also.

Nancy

P.S. This floor also has my favorite kind of crunchy ice!!! :)

Moving on up!!

Rebekah has gotten her traveling papers. She is moving out of the PCICU today. She and Nancy will be moving into a regular room in the Children's Hospital. They will have their own room and will be able to have the brothers come visit at some point.

I am heading home to take care of some things and to see the boys. Rebekah's next goal is to continue feeds by NG tube and eating from a bottle. Also she needs to gain some weight and then we will be able to bring all the ladies home.

We are so thankful the Lord has brought her this far.

D

Beginning of a good weekend

Rebekah had another great night. She is doing great at eating so far. We hope this continues. She had her first bottle this morning and did really well with it. They are compressing her feeds. Meaning that she is not being feed continually. Right now she is eating for 2 hours and off for an hour. By the end of the weekend she should be eating on a normal newborn schedule.

As soon as Dr. Bradley comes in, she is scheduled to have her lines removed. At this point it looks like Rebekah will go to step-down tomorrow as long as they have a bed open for her.

Just maybe when the lines come out we may have some pictures to post tonight of us holding her!!

We are very thankful that she is doing so well. We know that it is not by our efforts or Rebekah's but truly the Lord working in Rebekah's body.

Again thanks to all of you praying for the Little Lady and the phone calls to check up on us.

D

Onward and Forward!

Pictures!!!! Rebekah had a really great day today. After having the ventilator removed this morning, she held her stats all day (oxygen, heartrate, blood pressure) exactly where the doctors hoped to see them. Based on that progress, Dr. Hsia feels confident that he applied the correct amount of pressure to the band around Rebekah's left pulmonary artery.

Rebekah tried out the pacifier again today.

One of the things Rebekah will be working on now that the ventilator is out is learning to eat by mouth. To help with that, we are encouraging Rebekah to suck on the pacifier. She gets tired easily, but she kept it in for about 10 minutes this afternoon.

One of my favorites!! :)

It was so much fun to see Rebekah's face today! She has this cute little habit of sucking on her bottom lip just like her brother Caleb did when he was little. You can really see the dimple in her chin when she does it.

Yesterday Rebekah had quite a bit of fluid still making her puffy and swollen, especially her face and hands. Today we were pleased that almost all of it is gone. The doctors even decreased the amount of lasix that she is receiving each day (the medication given to help decrease her fluid).

According to Rebekah's lab work today, her calcium levels are dropping off. We have been expecting this to happen as it is commonly seen with DiGeorge syndrome. Rebekah has received some calcium supplements off and on over the last week, and the doctors are waiting to see what she will do when she is receiving full feeds. Right now she has just been receiving IV fluids, but she was started back on a little milk this evening right before we left. As long as her body tolerates the milk, they will be increasing it in small amounts. Once she has proven that she can tolerate the feeding, the doctors will remove more of her lines and IV's.

Hopefully tomorrow will bring more positive steps toward home!

Nancy

Bye-bye Ventilator

Rebekah had a good night of resting. She was very sleepy and didn't show a lot of signs of wanting to get the vent off. At this morning's update from her nurse, they still had not removed the ventilator. But when we finally, after lots of chores this morning, got here, she had just had the ventilator removed! Right now Rebekah has a nasal cannula with constant air pressure through her airways, but no oxygen! She is much more alert and awake today, and everyone is very pleased with her progress.

Rebekah's occupational therapist came by today and now we are working on the beginning exercises to get Rebekah ready to eat by mouth. We are still quite a ways from that goal, but the exercises we do now will help get her ready to eat.

It seemed that Rebekah was a little uncomfortable around lunch time today, so she just received a small dose of morphine in her feeding tube. Because she tends to be extra sensitive to medication, the doctors chose to give her the oral medication rather than through IV. It has a slower release over a longer period of time, so the doctors thought it would be a better option for her.

Otherwise we are just hanging out with Rebekah today. In the last two days, there have been several OR cases, so we have been limited somewhat in the time we can be with Rebekah. The staff clears the unit of visitors when a patient comes back from the OR until they can get the patient settled. Please remember another family in your prayers - both of their boys (1 and 2 years old) had open heart surgery yesterday and are recovering.

We did get some pictures this afternoon of our little girl, so we will try to get them posted tonight. We are so pleased with Rebekah's progress! :)

Nancy

First Day Post-Op

Sorry for the lack of pictures.....Rebekah asked us to hold the flash photography today. :) Seriously, she seemed to be struggling with the brightness of the lights in the unit, and I really didn't want to add to that. We'll be taking more pictures of her beautiful little face tomorrow.

Aside from having a hard time waking up from yesterday's anesthesia and pain medications, Rebekah has had a great day. Her heart rate, blood pressure and oxygen saturation were within the ranges that the doctor was targeting. During the day, the respiratory therapists worked on turning down the ventilator settings and Rebekah sailed through each of the trials. When we left the PCICU for the day, Rebekah was more awake and the plan was to take her off the ventilator during the night shift.

Rebekah had a small dose of morphine this morning and otherwise has just been on Tylenol throughout the day. She has seemed to be resting very comfortably during the day - so comfortably that it was hard to wake her up!

The results from the genetic testing on Rebekah came back positive for DiGeorge Syndrome. We met with a geneticist this morning to discuss a bit about the syndrome and what possibilities may come from it. There are many different potential problems including: cleft lip and/or palate, cranial-facial deformities, auditory problems, endocrine system problems (including calcium deficiency and thyroid problems), immunology deficiency (weak immune system), kidney deficiency, mid-line heart defects, and developmental delays and/or learning disabilities. Rebekah has not exhibited symptoms of most of these things, but obviously some are too early to tell. So far we have ruled out cleft lip/palate, cranial-facial deformities, kidney deficiency, and we already know about the mid-line heart defect (obviously!). As Rebekah grows, we will be monitoring her endocrine and immune systems closely and watching her developmental milestones. She will have a few more tests done while she is in the hospital to check the function of her immune system and she will have a hearing test done. Ultimately, no matter what the doctors say is or isn't "wrong" with our little girl, we know that she is perfectly the way that God has made her, and she is perfect for our family.

We are excited about Rebekah's progress. Tomorrow some of the lines and tubes she came back from surgery with may be removed if she continues to do so well. Rebekah will also be started back on some small amounts of milk tomorrow if she tolerates it well.

That's about it for today. More updates and pictures to come tomorrow!

Nancy

Rebekah

Rebekah is doing great. She had good night and is very stable. she woke up about mid-morning. They are giving her lungs lots of practice runs this afternoon and looks like she will come off the ventilator this evening. She is making steady progress forward which we are very thankful for.

D

Post Surgery

This morning started out very early....especially for someone used to sleeping till at least 7:00 or so! :) Drew and I arrived at the hospital a little after 5:30 to spend a little more time with Rebekah before surgery. Since we had gotten to hold Rebekah for most of the weekend, I didn't really anticipate the chance to hold her again, but the nurses let us hold her for about an hour and a half.

Daddy and Rebekah before surgery

The nurses change shifts between 7:00 and 8:30, and no one is allowed in the PCICU during that time. So, we said goodbye to Rebekah at 7:00 and laid her back in her crib. The OR team came to get her around 7:45 and the surgery actually began between 8:30 and 8:45. Dr. Hsia told us afterward that he was able to place the band fairly quickly, but he spent a great deal of time evaluating whether or not he had the band tight enough or too tight. By the time he completed the surgery, Dr. Hsia came right back to where he had the band in the first place! The goal was to tighten the band enough to restrict some of the blood flow to Rebekah's left lung, yet leave it loose enough to grow with her for the next few months. It is a fine line to balance between the two, and I am glad it was not up to me to get it right!

Dr. Hsia is very pleased with the outcome of the surgery at this point. Rebekah came back to the PCICU around 11:00 this morning on the ventilator (but on a lower setting than when she went to surgery). She was on the ventilator the remainder of the day and will probably be on the vent through the night and possibly tomorrow. As long as she is making improvements, the doctors will continue to wean the ventilator settings down through the night. Before Rebekah went to surgery, her vent setting was at 36; when she came back from surgery, the vent was set at 26, and by the time we left around 6:30 this evening, she was down to 18. She did have a slight setback due to a leak around the vent tube in her trachea and she had to have the tube replaced around 5:30 this afternoon. We were hoping to make it work through the night and be able to take it out altogether, but she really needed the more gradual decrease from the ventilator.

Rebekah about six hours after surgery

The plan for now is to let Rebekah rest through the night and work down on the ventilator settings as she is able to. The next step will be removing the tubes and leads from her heart and chest, which will happen in two or three days. She is already off the blood pressure medication that she had while in the OR, which is a good step. The final test of the success of this surgery is if Rebekah's blood pressure (especially the diastolic pressure), oxygen saturation and heart rate all stay within the levels that Dr. Hsia is targeting for Rebekah. Especially before her complete Truncus repair, Rebekah will not have "normal" blood pressure, oxygen saturation or heart rate levels for a baby of her age. But Dr. Hsia is looking for what should be normal for Rebekah in this stage of her repairs. When Rebekah is completely weaned from the ventilator, Dr. Hsia will be able to determine if this stage of surgery was successful for Rebekah.

The plan for Mommy and Daddy tonight is to get some sleep! After such an early morning, we are ready for some rest. Add to that the rain hitting the window, and it's a perfect recipe for sleeping. Good night, all! :)

Nancy

Done

Rebekah is out of surgery. We won't be able to see her for about an hour yet. We are waiting on the surgeon to come into waiting to talk with us.

Second Update

They have finished installing the band on Rebekah's artery. They are "putting her back together" as they put it. She should be back in PCICU in about an hour. Doing great.

D

First Update

All is going well. Rebekah is stable with no problems. The surgeons are about to place the band around her left pulmonary artery now.

Nancy

No Update Yet

No news from the OR yet (although they were scheduled to actually begin the surgery between 8:15 and 8:30).

We have, on the other hand, been through two tests of the fire alarm system. Talk about waking a person up!!

We will pass along any updates if we get them.

Nancy

Surgery Day

My Little Lady went to the OR at 7:45am. She has the best doctors one could ask for, but more importantly is that she is in the Great Physicians hands. The Lord will watch over her even though Daddy can't be there to hold her hand.

"Lord we pray that you guide the surgeons hands and we commit Rebekah to your care and will, in Jesus name I pray."

D

Happy One Week Birthday!

It's hard to believe that Rebekah has only been here for one week! In a lot of ways, it feels like weeks or even months since she was born. In other ways, it's amazing to think that she is already here when we weren't even planning on her arriving until the end of this week. She is definitely doing things her own way!

The results of the heart catherization today confirmed what the doctors have thought for the last week or more....Rebekah does not have an artery from her heart to her right lung. She does have several collaterals (small spaghetti-sized arteries leading off the left pulmonary artery to the right lung) that are too small to work with now, but the doctors are hopeful that in a few months they will grow. The plan is to use these collaterals, band them together and create a small pulmonary artery leading from the right side of Rebekah's heart to her right lung. She will never have "normal" function in her right lung, but she will hopefully have some use after the collaterals are reattached correctly.

Because of the situation with Rebekah's lung(s), her heart surgery is much more complicated. In fact, her surgeon, Dr. Hsia (pronounced Sha), has never seen anyone with Rebekah's physiology. There has never been a patient treated at MUSC with her physiology. Dr. Hsia had to call all the way to London (yes, as in London, England) in order to consult with a doctor who has even seen this type of heart/lung combination. The general consensus of Rebekah's doctors after much consultation and debate, is that completing Rebekah's heart surgery as we first discussed before finding out about her lung, will put too much pressure on her left lung. Putting that kind of instant pressure on her left lung could cause heart failure and potentially pulmonary hypertension (high blood pressure in her lung) that would be irreversible. Obviously, no one wants that to happen!

SO, what will happen? Rebekah will have open heart surgery tomorrow (Tuesday) morning at 8:00. The doctors will make an incision in her chest and through her sternum. They will put what amounts to a rubber band around the pulmonary artery branch that leads to her left lung. This band should limit the amount of blood flowing to that lung, allowing more blood to flow to her body. Right now, her lung is getting way too much blood flowing in to it. To allow that to continue would deprive her body of the necessary blood flow for Rebekah to grow and develop properly. At this time, the rubber band procedure is all that the doctors are planning for tomorrow's surgery. Rebekah should be able to recover much faster than she would from the original surgery.

Once Rebekah has recovered and has met her goals for discharge, we will be allowed to take her home! :) The actual amount of time it takes to be released will depend on how quickly Rebekah recovers and how quickly she learns to eat (could be a couple of weeks or several weeks). After we are home, Rebekah will be very carefully monitored by her cardiology team to make sure her heart is functioning in the way that they want it to. Rebekah will be allowed to grow for somewhere between 4 and 6 months (depending on how her heart and lungs are doing) and then we will return to Charleston for the "big" surgery.

The "big" surgery will be quite extensive - even more than we were planning on for her original Truncus surgery. She will have the collaterals grouped together and reattached to the right side of her heart to form a pulmonary artery to her right lung. She will have a conduit with a valve put into the right side of her heart leading to her left lung allowing only the blood that needs oxygen to flow to her left lung. And she will have the large hole (ventricle septal defect or VSD) between the two chambers of her heart closed. The good news about all of this surgery is that she will be significantly bigger in size and development. Her lung(s) will have several months of use to grow and develop more, and she won't have to learn to eat after surgery.

Overall, Drew and I are very satisfied with this decision. We feel that the doctors have made the most informed decision that they can possibly make, and we are very comfortable with that. Ultimately, we know that Rebekah's healing is in the Lord's hands, and we are trusting Him with Rebekah's heart. Thank you all so much for your prayers and encouragement. It has really been so encouraging to us.

We will post updates tomorrow as we get them, but we were warned tonight by Rebekah's nurse that things in the OR can get intense and a lot of times the nurses there forget to call with updates.

Nancy

Heart Cath.

They are taking Bekah up to the Cath Lab. right now.

Weekend Recap

What an eventful weekend! Sorry for the lack of posting; it wasn't because there was nothing new to post. We were simply trying to soak up every minute of our weekend before it was over. :)

Rebekah watching Daddy

We were excited about a very last-minute trip by Grampy and Grammy and the boys. We are learning that weekends around here are very slow (as far as medical things and people coming and going in the PCICU), so not only were we able to see the boys, but they were also able to see their sister for the first time!

Grampy and Grammy and Rebekah

The boys were so excited to meet their sister! Very technically, they were not supposed to be able to see her since the rule is age 12 and older, but since it was so quiet, the nurses let us bring them in - all at the same time even!!

Zachary said, "Having a sister is really cool!"

All the boys enjoyed meeting their sister. Justin and Zachary held her hands and checked out all of her lines, leads and equipment. Aaron and Caleb were content to watch her and talk to her. Caleb picked up Rebekah's still-unnamed puppy dog, gave it a hug, and tried to give it to Rebekah (actually, he dropped it on Rebekah, but we could tell what he meant).

There was a lot of giggling and silliness as all of the boys tried to outdo each other playing with their sister. Now they want to know how soon she will be coming home!

Medically speaking, Rebekah had a great weekend. It is hard to watch and anticipate what she will be going through the rest of this week because she is doing so well. Rebekah was able to remain vent-free all weekend, and she looked wonderful. Her heartrate, oxygen levels and breathing have been perfect all weekend. She was doing so well that the doctors started her on a small (very small) amount of milk in a feeding tube (the small orange tube in her nose). She was getting 3 cc's of milk every hour until midnight last night. (To put this in perspective, 15 cc's is roughly half an ounce. She is getting 1/5 of half an ounce once an hour. Very small amount!!)

As far as the plan for this week.....we're not really sure yet! We know that Rebekah is definitely on the schedule for surgery tomorrow morning around 8:00. We just don't know what surgery she will be having yet! :) Because of Rebekah's lung complication, the surgery to fix her heart is no longer a straightforward procedure. The heart catherization that she will undergo today will hopefully give the doctors a much clearer picture of what the best option is. There are several different possibilities, and each has risks and benefits. It appears that at least some of her doctors are leaning toward repairing only part of her heart now and doing another surgery in 4-6 months to finish the heart repair. The reason for this is to not put additional strain on Rebekah's only working lung. There is also a small possibility that there is still something the doctors will be able to do with Rebekah's right lung to give it some kind of function. These are all questions that we will (hopefully) have answered late this afternoon or evening after the doctors have met and discussed all of the test results.

For now, our plan today is to see our little girl as much as possible between all of her tests. She will be lightly sedated (she hates the ventilator tube!!), and with all of the extra equipment, we won't be able to hold her until after she recovers enough to be moved again. So we just plan to hang out and keep her company. Tomorrow we will be in the PCICU waiting area for a good part of the day while she is in surgery.

I will at least get a short post out tonight to update everyone on the plan for surgery tomorrow.

Nancy