Tuesday, August 25, 2009

Together At Last

Kayelyn and Brayden have finally been reunited! Cher says they seem unimpressed by each other AND she's already had to separate them at least once! I wonder how many times that's going to happen over the next 18 years???

Monday, August 24, 2009

Brayden Is Out of the Hospital!!!

Okay, so my Aunt Kaye took Cher and my mom to visit Brayden on Saturday. When they got there, Cher spoke to the doctor and he said, "This baby shouldn't still be in the hospital". But, there was too much red tape to release him immediately. Cher ended up staying in New Orleans at the hospital with Brayden over the weekend. This is a big deal for Cher who is a little shy. She didn't know she was going to be staying so they had to go buy her a few things and make some last minute plans. It was good for her to be there to care for him with the hospital's supervision for a few days. He's going to be coming home on 6 medications that she will have to administer but otherwise he will have no special needs.

Andrew and his sister drove to New Orleans this morning so that he could pick them up when Brayden was releaseed. I just spoke with my mom (otherwise known as Nana) and they are officially on their way home from the hospital with Baby Brayden in tow! He is 4.5 weeks old and has never been outside. They said he cried while leaving the hospital but stopped as soon as he got outside and saw the sun!

Cherilyn and both babies will be staying with Mom for the next couple of weeks, with Andrew and MaKenna visiting on weekends. Kayelyn still doesn't sleep at night so it will be an adjustment to care for two newborns.

We are so thrilled that Brayden is coming home. I am overwhelmed and near tears as I type this, because there was a time when I was pretty convinced that we weren't going to see this day. But, here we are! Thank you, God!

Thursday, August 20, 2009

Brayden Update

I finally have some new news to report and it's all pretty good. Andrew and Cherilyn just spoke with one of Brayden's cardiac specialists. He says that Brayden is doing good. He explained that Brayden's shunt is intentionally too big for him so that he can grow into it. However, this means they have to monitor some overflow and this is normal. They do currently have him back on his bottle. Yay! The surgeon wants Andrew and Cher to come meet with him in person on Monday so that he can thoroughly explain Brayden's diagnosis. The specialist anticipates the earliest Brayden will be discharged is sometime next week. He says Brayden will not have any special needs when he goes home and that he does not even recommend utilizing a heart monitor. He said that Brayden should be expected to have a normal life. Yay, yay, yay!!!

In other news, Cousin Nicole went to visit Brayden earlier this week. Considering that she's pregnant herself, it's back to school time for her, and she hasn't been feeling well, it was really nice of her to check on Brayden. She read to him while she was there and said he stared at her with big eyes the whole time!

Kayelyn is doing well, too. She and Cher got to spend a couple of nights at Nana's earlier this week and reports are that she went home a little spoiled! (Shocker). She's eating and sleeping a LITTLE better and she is definitely spending more time awake during the day.

MaKenna, Andrew's toddler, is adjusting to being a big sister. I need to post some pics of her on here soon, too. She's a really smart girl! Unfortunately, the other day she managed to get her hands on a pizza cutter while her Cher Cher was in the same room with her, and may or may not have "massaged" Kaye Kaye with it! Don't worry - no scratches on the baby. In fact, I think KK slept through the whole ordeal but it sure did give Mommy and Daddy - and Kenna, too - all a big scare!

I think that's all the news for now. Will continue to keep you posted!

Tuesday, August 18, 2009

Status Quo

Cherilyn was able to make another trip to New Orleans to see Brayden on Saturday. He remains out of the cardiac ICU but in the NICU. No real progress since I last updated. He is not doing bad but he seems to have backtracked just a bit. They are working on stabilizing his breathing and his blood pressure. One problem my sis and brother-in-law have had is getting consistent, clear information. Most of the staff at Children's Hospital have been fantastic, but there are a lot of staff there. Andrew calls the hospital multiple times a day to check on Brayden's status, but that means he's talking to a variety of different nurses and staff, especially when he changes from one unit to the next. The fact that Cher and Andrew are rarely at the hospital in person, especially on a weekday, makes it hard for them to get the clearest info possible straight from the doctor. At any rate, Brayden's condition remains the same. Pray that he will progress quickly and that his mom and dad will get some clarity about his status.

Thursday, August 13, 2009

You Take the Good, You Take the Bad

When Brayden was first sent to Children's Hospital in New Orleans, the staff there talked to Mom, Dad, and me. We were warned that with a serious cardiac condition there would be good days and there would be bad days. Well, today is not such a great day for Brayden. He has not taken a major turn for the worse or anything, but he's just taken a little step backwards. You may recall that he was moved from the cardiac ICU to the NICU earlier this week. This is progress and one step closer to being moved to a regular room and then preparing to come home. Anyway, they had removed his feeding tube and he had been eating from a bottle, but they have had to take him off the bottle for at least 24 hours because his heart rate was accelerating. This is hopefully temporary and just a minor setback. The hospital appears to be very cautious (which we like!) and they have assured Brayden's parents that they just want to make sure that he is as healthy as his little sister before they send him home. And, we want him well, too, even if that means he has to stay in the hospital a bit longer.

Thank you all so much for your continued prayers for Brayden and my sister and the family. Brayden is making progress but it is two steps forward, one step back and, as you can imagine, that roller coaster can be draining.

Tuesday, August 11, 2009

I Take It Back - A Retraction of Sorts

Sorry about this, but the plans have changed again already. The original purpose of this blog was to try to keep family and friends current on the most up to date info about Brayden. Unfortunately, it seems like as soon as I post an update, something changes. Anyway . . .

Cher just sent me a text saying that now she is NOT going to New Orleans today. Apparently, they are sending Brayden back to NICU for a few days. This is still an improvement, but he's not in a room where Cher can or needs to stay with him yet. From what I understand, the plan as of right now is that he will stay in NICU for a few days and THEN be moved to the 6th floor room and at that time my sis will need to go stay with him. So, we are probably still a week or so away from him coming home, but who knows.

The changing information is a bit frustrating. This plan is actually a more logical one and probably a better plan all the way around, but remember that Mom and Andrew both left work this morning and have been scrambling around making plans and now they'll be postponed. Oh, well, Brayden is doing well and these frustrations are relatively minor I suppose!

One Step Closer to Coming Home

So, mom called me this morning and we just got some exciting news. The hospital called Andrew this morning and said Brayden was being moved out of the cardiac ICU and moved to a room upstairs. They also said that Cherilyn needs to get to New Orleans and stay with Brayden now because he will no longer have a nurse with him 24/7 like when he's been on the cardiac unit. While this is all fantastic news, it was also unexpected and rather sudden and has everyone in a bit of an anxious, frantic scramble. Mom took off work and is going to help Cher pack. Mom will be watching Kayelyn for the next several days while Cher is away. Andrew also had to take off work since he and his sister will drive Cher to New Orleans later today. For those of you that know Cher, you know that she is not particularly independent so she is a bit nervous at being stranded at the hospital in New Orleans by herself with no transportation for several days. She is excited to see Brayden and to prepare to bring him home, but she will also be missing Kayelyn.

If we understand correctly, it's fairly likely that Brayden could get to come home as soon as this weekend. Of course, this is subject to change. It will be good for Cher to spend some time with the nurses learning how to care for Brayden. I know she is feeling a mix of emotions right now: joy, excitement, nervousness, anxiety. Please pray for her and for my mom and Andrew and Kayelyn and Brayden and the rest of the family. And, yay - Brayden may be home soon!!!

Pics of Kayelyn

Pics of Brayden

Monday, August 10, 2009

Long Awaited

I am so sorry that it has taken so long to update the blog. But I have a really good excuse. I've been in Louisiana with Cher and the babies and didn't have internet access. Plus, I promise to make it up to you with lots of cute new pics of both babies!

Let's see, where should I start? Well, first of all, Kayelyn is adorable. It amazes me how she is so petite and delicate and feminine, and her brother is so big and robust and masculine. If you saw them both without the wires, it would be hard for you to believe that Brayden is the sick one. Clearly, God knows what He is doing though, because Brayden is strong enough to withstand the treatments he's had. Anyway, back to Kayelyn, or KayeKaye (KK) as we sometimes call her. She is sweet and a great baby. I went with Cher to KK's doctor appointment last week and the doctor said that Cher must be doing something right because KK looked great. She's healthy and doing well. She sleeps ALL day, almost never opening her eyes, and doesn't do as well at night, but she'll get over that eventually. And, she's not a very hearty eater yet, but I suspect that will all change soon enough, too. Isn't funny how we keep trying to figure out ways to get her to eat MORE, whereas I'm working on figuring out how to eat less??? Sorry, I digress. Remember that these babies were not born premature and Kayelyn weighed 5.10 when she was born, which is a decent size for a full-term twin. Nonetheless, she is soooo tiny and her newborn clothes are all too big for her. To give you an idea of her size, Cher and Aunt Andi took pictures of her in a shoe box. It's a men's size 10 athletic shoe box, but still . . . she fits IN a shoe box!

So, on to Brayden. He is doing remarkably well - praise God! I drove Cherilyn and Andrew to New Orleans to see him last Wednesday and Cher got to hold him for the first time since the surgery. She didn't know she was going to get to hold him and was pleasantly surprised. She couldn't move her arms much because of all of his wires, so she sat perfectly still even when her arms started to hurt because she didn't want to quit holding her baby. (Sidebar - Aunt Andi got to hold him, too!) Unlike his sister, Brayden had his eyes open for almost our whole visit. It was great to see him and hold him, but this was bittersweet for his mama. Cher cried all the way home at having to leave him in New Orleans. Apparently this was easier on her when he was medicated and out of it, but now that he's alert and can be held, it was really hard for her to leave him. Unfortunately, she's also sad when she has to leave KayeKaye to go see Brayden. Nana loved it though, because it meant she got to keep KK for the whole day. Nana even threw an Open House for people to come see Kayelyn!

The next day, they started introducing a bottle to Brayden. They were afraid that he might not take to it well since he'd been fed intravaneously his first two weeks of life, but no worries. He's a much better eater than his little sister!

Our parents took Cher back to New Orleans on Saturday to see Brayden again. This time, she not only got to hold him, she got to feed him his bottle. The most recent update I got from my mom is that Brayden is eating well and regularly and will soon be moved to a different unit in the hospital and before long they should be able to start making plans for him to come home. Yay!!!

I want to say something about my sister. I had no doubt that she would love her kids. I had no doubt that she would be a good mommy. But spending the last week with her and her babies, I was really super-impressed with what a fantastic mommy my baby sister is! I love my new niece and nephew dearly, but it's clear that she loves them in an entirely different way. I am so proud of her!!! But, please continue to pray for her. Caring for one newborn is exhausting. Up until now, she has handled the stress and strain of this trying situation really well. But it's finally starting to catch up with her. She currently has a migraine and her stress-induced eczema is returning. As exciting as it will be to have Brayden home, that means she will be caring for TWO newborns, one with special needs. And though Brayden is doing fantastically well, and we are grateful for that, please remember that he is a special needs baby and his battle isn't over. I don't mean to end this post on a down note, I just don't want folks to quit praying for my sister and her family because they are going to need those prayers for a long, long time.

Now, off to figure out how to post some pics for you guys!