Saturday, August 27, 2011

First tub bath!

As a result of Waverly receiving her button, she is now allowed to take tub baths! Let me tell you, I was SOOOO happy to finally be able to really bathe her (instead of trying to feel like I was getting her clean with just a washcloth and soapy water)! Her eyes got really big and she gasped as soon as we put her down into the water, and she cried for just a few seconds. Then she realized how nice it was, and enjoyed the rest of the process. Of course, two older siblings to play with and distract her helped a little too!

Getting her hair washed. Silly, sweet brother.

I had so many helpers!

Aerial shot.
Sweet girl!
Getting on lotion before jammies. Lots of help again!

Friday, August 26, 2011

MIC-KEY Button!

Waverly just got home from her surgery to replace her tube with a MIC-KEY button! Here's a picture from last night. See the tube hanging out of her onesie? Sorry for the sideways picture, but here's what she's looked like for the past almost-four months.
An up-close shot.
And there's the button right after surgery! Woohoo! It will be so nice not to have a tube hanging out of her all the time now. And, now we can give her an actual BATH totally in the water (instead of sponge bathing)!!!!!
She did really well, and we praise God for that. She's been sleepy since we've gotten home (still waking up from anesthesia), so she still hasn't eaten yet. Please pray that the feeding goes well and that she tolerates it well, as that's always a concern since she struggled so much before.

Wednesday, August 24, 2011

GI appointment

Waverly saw the GI doc last week. The big news from the appointment is that she is now 9lb 9.6oz! She is a growing girl! You can see it in her thighs! :) Everything looked good. They cleared her to go on regular sensitive formula instead of the special formula for preemies. Of course, she is getting donor breastmilk primarily that is fortified with formula to increase the calories. We are SO thankful that she has continued to be able to get mostly breastmilk from a dear friend, as we know that it's best for her. (I used the last of my own that I had frozen about a month ago.) We hope to continue her on breastmilk for as long as we are able to get some. They were encouraged by her growth and her suck reflex (the girl LOVES her paci!), and the doctor said he is very hopeful for her swallow study next month that she'll do well and be able to take some food orally! That would be fun! Of course, she'll always have her feeding tube and take most of her nutrition through that, and if she is able to swallow without aspirating, then we can feed her by mouth for fun some as well. In the meantime, we are able to do more frequent paci dips to give her practice having a little liquid in her mouth.

We are on schedule for her to get her PEG replaced with a MIC-KEY button on Friday morning. We are SO excited! We've heard from so many how much nicer the button is, and we can't wait not to have a tube hanging out of her! Surgery is at 9:00a.m., and she will be under general anesthesia, but the procedure itself is pretty quick. Please pray for her at that time!

Neurologist appointment

Just a quick [late] update from Waverly's neurology appointment earlier this month. He does not think she is having seizures yet, which is a huge praise! (We showed him some video we took that we were unsure of.) He did schedule an EEG for her but that's not until the middle of September. Until then, he said if her seizures do start, we can schedule an EEG right away through the hospital. He was encouraged at how she follows people with her eyes and holds a gaze. He also gave us a list of the top three medicines they use for seizures so that we could be prepared in that way (knowledge). All in all a good appointment.

Thursday, August 11, 2011

Heart Thoughts-"Are they dying her?"

"Are they dying her?" It was an innocent question from a four-year-old who was just trying to make sense of why her baby sister was still in the hospital, with an IV sticking in her head and wires coming out from her. Although she got her wording a bit wrong, I knew exactly what she was asking, and it took my breath away. I could barely speak to answer her, but tried to hold it together so I wouldn't worry her any further. "No honey, they are trying to help her. They are helping her to be able to come home with us soon." I couldn't tell Johnny about her question until much later that night, and I was crying before I even got the first word out. In fact, I couldn't even speak it. It came as more of a whisper.

Many people have asked, or at least wondered, how we are handling this with the older kids (ages 4 and almost 3). The truth is, we aren't sure what the best route is, but we have prayed and sought counsel, and for now feel like we are doing the best we can for them. We are basically taking things as they come. Although there is a general prognosis for Waverly with her condition, we don't want to overload the kids with too much information and all the "what-ifs". Given their ages, we feel it is best to give simple, concise explanations and then answer their questions as they come up. For now, that means occasional questions about her eating (the most obvious thing they notice is different about her), and as she grows, tackling the bigger issues. It's amazing how much they haven't asked yet. Kids are just so accepting that I think a large part of it is that to them, Waverly isn't that different. She may do things a little differently than other babies, but to them, that's just her. We talk often about how special God has made her, and they smile and agree. I know that as she grows, so will they, and therefore their understanding will grow as well. Until then, we are not burdening them with adult news and things too weighty for their little minds to handle. They don't need to bear that load, at least not all at once.

It pains my heart to know the pain that they will experience, though, as reality unfolds and the future uncurls. No mother wants to see her children suffer, whether physically, mentally, emotionally... And to know that they will be facing some tough times breaks my heart. But I know that their lives are richer because of their little sister, and for that I am thankful.

For now, the main thing is that they are simply crazy about their little sister. They are constantly hugging and kissing her, asking to hold her, talking to her, giving her her paci, etc. Every sweet interaction delights my heart, to see how much love they give their little sister. I don't take one instance of it for granted...

Monday, August 8, 2011

3 months old!!

Waverly is 3 months old today!!! She celebrated by having her first out-of-the-hospital follow up with the neurologist! (All cool kids celebrate that way, right?!?) (More on that appointment to come.) She is definitely growing, and as of today is a whopping 9 pounds!!! Way to go little girl!

One of her favorite things to do recently is spend time in her bouncy seat and "talk" to the animals that hang on the toy bar. For some reason, when she's in the right mood, she gets so excited to see the animals and will squeal away at them.

She's also spent two times in the sling, and liked it pretty well this last time.

These next two pictures are for comparison. The first was taken today, the second was taken the day we brought her home from the NICU, just before she was 1 month old. Can you tell she's grown??
The other night she was sleeping in her bouncy seat, and had her hands just so placed. So cute!
We are also finally being able to put some different outfits on her, now that she's outgrowing her newborn sized clothes. Bring on the 0-3 months! Yay!
A few other facts about our growing girl: She still eats every three hours via g-tube, and is up to 63mL/hour during those day time feeds. We hope to get her up to 65 by the end of the week. She is now up to full feeds during the night, getting 30mL/hour for 10 hours (9p.m.-7a.m.). She has dropped her Reglan medication, and is now just on two meds for reflux (Zantac and Prevacid), and is doing well with that. We still see occasional smiles from her, but are still not quite sure that they are in response to us. She does love to study faces, and will track movements with her eyes, which is great for her! She loves to spend time lounging in her boppy or being held, and enjoys being outside (when it's not too hot!). She has her first cold, which is sad for us! Please pray that she gets over that very soon! She is very loved by her big sister and brother, who love to hold her, lay beside her, and give her kisses. She brings so much joy to those around her. Waverly, we love you!

Thursday, August 4, 2011

Recent pics

I apologize for not posting pics more frequently, since I know that's really what you all want to see! I snapped these the other day of our growing girl. Can you tell she's getting bigger?
Big brother just had to get in on the action. He makes this face whenever he's talking to or about his little sister. So precious!