Sunday, July 17, 2011
Waverly Ann-the name
So many people have asked us about Waverly's name, so here is the short, easy explanation of how we came up with it. We heard the name Waverly on a tv show, and I thought it was pretty and stored it away in my memory. I brought it up as a possibility as we talked about baby names, and while it was high on our "girl list", it wasn't necessarily our one choice for a first name. However, as the time drew near, it went higher and higher on our list. Finally, once she was born, it was between Waverly and a couple of other names. I got a little nervous about committing to the name, since it is pretty unique. But Johnny really latched on to it and liked it for our sweet little girl, so we decided to name her Waverly. We both have family members (mostly aunts) with the name Ann (either as a first or a middle name), and we loved the meaning, "favored grace." Given her situation (at the time of her birth, we weren't sure what was going on with her, we just knew that there were concerns), we felt that that meaning was quite appropriate. Waverly means "quaking aspen", as in the aspen tree. Not really a spiritual significance, but pretty and nature-y. :) So, there's the story behind the name!
Monday, July 11, 2011
Sisters!
These pics are a few weeks old, but were too cute to not include. They were taken after Waverly's first bath at home. Can you tell the girls love each other? 
Friday, July 8, 2011
2 Months Old!!
Our sweet girl is 2 months old today!!! She continues to grow, although not quite as quickly as she did the first few months home! She now weighs 7lb 6oz, and is roughly 21 inches long. I'm not sure where the lies on the percentiles (she has her checkup at the pediatrician next week), but I'm sure it's on the low end, for weight at least. :) However, it is obvious to most people that she has grown. We especially notice it when she's in her car seat, as she now doesn't get lost in it!
We are noticing more and more awake time for her, with more alertness. Although she will often smile in her sleep and sometimes make smile-like faces when she's awake, we have yet to have a smile in response to someone or something. We are anxiously awaiting that moment! She is having longer periods of time where her eyes will meet ours, and that is fun to see her develop in that way! She can lift her head up when on her tummy, but it falls right back down again, so we are working on that skill. We also do Physical Therapy exercises with her, which are pretty basic right now and include range of motion, encouraging her to get her hands to her face, and tuck her feet/legs up to her middle.
Waverly still eats every three hours during the day (48mL/hour, and we are increasing it by 1mL every two days) and continuously at night for 10 hours (21mL/hour). We will work on increasing her nighttime intake once we get her daytime intake up to 65mL each feeding. She is doing well keeping her feeds down, although will still spit up occasionally.
Some other fun things she does is open her mouth and smack her lips into an oval. We aren't sure if she's trying to "talk" or doing it in response to reflux! But it's cute! She loves to be held, but does pretty well in her bouncy seat or on her boppy pillow under the play gym as well. She gets lots of love from her siblings, who also love to hold her. She does well in her carseat when we're out and about doing family activities or going to doctor's appointments. She did well this month on her first trip to the grocery store, too. Now, on to some pictures!
Every morning, she tends to have a fussy period sometime between 4 and 6a.m. If she won't settle down, I'll pull her into bed with me to snuggle and try to get a little more rest. (Although it's quite tricky to do it with her tangle of monitor and feeding pump cords...!) Here she is this morning snuggling in bed!
She looks pretty in headbands... We were at a church program, and she was looking at me.
Funny face.
Sleepy smiles.
Every lady should cross her legs while sleeping on the Boppy...
We are noticing more and more awake time for her, with more alertness. Although she will often smile in her sleep and sometimes make smile-like faces when she's awake, we have yet to have a smile in response to someone or something. We are anxiously awaiting that moment! She is having longer periods of time where her eyes will meet ours, and that is fun to see her develop in that way! She can lift her head up when on her tummy, but it falls right back down again, so we are working on that skill. We also do Physical Therapy exercises with her, which are pretty basic right now and include range of motion, encouraging her to get her hands to her face, and tuck her feet/legs up to her middle.
Waverly still eats every three hours during the day (48mL/hour, and we are increasing it by 1mL every two days) and continuously at night for 10 hours (21mL/hour). We will work on increasing her nighttime intake once we get her daytime intake up to 65mL each feeding. She is doing well keeping her feeds down, although will still spit up occasionally.
Some other fun things she does is open her mouth and smack her lips into an oval. We aren't sure if she's trying to "talk" or doing it in response to reflux! But it's cute! She loves to be held, but does pretty well in her bouncy seat or on her boppy pillow under the play gym as well. She gets lots of love from her siblings, who also love to hold her. She does well in her carseat when we're out and about doing family activities or going to doctor's appointments. She did well this month on her first trip to the grocery store, too. Now, on to some pictures!
Every morning, she tends to have a fussy period sometime between 4 and 6a.m. If she won't settle down, I'll pull her into bed with me to snuggle and try to get a little more rest. (Although it's quite tricky to do it with her tangle of monitor and feeding pump cords...!) Here she is this morning snuggling in bed!
She looks pretty in headbands... We were at a church program, and she was looking at me. 
Funny face.
Sleepy smiles.
Every lady should cross her legs while sleeping on the Boppy... 
Thursday, June 30, 2011
Heart Thoughts-I don't want a story...
You know it's not good when every medical professional you talk to asks how you are doing. They don't just say those words in the form of a question, it's the look on their face that communicates what they mean. They lean in with concern in their eyes, some of them maybe even have tears. The often tilt their head slightly to one side. And they ask in a soft, quiet voice, "How ARE you doing?"
Ugh. I hate that they have to be asking that question in the first place. Never have I had so many people ask about our mental and emotional health. And sometimes it's scary. On the days that I'm doing well, I wonder if I should be doing worse than I am feeling at that moment. Am I missing something? Should I be more of a mess? I just don't know... Other days I feel like I am pretty true to form and am just not feeling ok with the way things are. Those days aren't too often, and seem to be much less than they were at the very beginning. (At that time, I almost wanted to look horrible just to reflect how things were going. It's awful to be getting constant news about your child, and everything you're told is bad news. Those were dark days that I am thankful we are mostly over, at least for now.)
To be honest, I am just not sure how to respond to it all. I don't know what to say to people who, in reality, don't know what to say to me. Should they say they're sorry? Do I want them to say that? Do I want them to be sorry? Not really. But kind of. I don't know. Should they acknowledge that things are different, hard? Because it is pretty obvious... Should they be happy for us? Of course!
We are starting to settle into things, as much as we can for now. I'm sure that things will constantly be changing (but don't they always with a newborn?). I am looking forward to really feeling like we are in our new normal, whenever that may come. I hope it will be relatively soon. But I am also just so scared about the future. Mostly because it is so unknown to me. What will she be like in a month? In three? What will it be like when seizures start? During the winter/season of sickness? What about when she's bigger/older and needing more specialized equipment? Will we even make it that far? Should I even think those thoughts? But how can I not have that in my thoughts at times?
We have been so blessed by so many who have been touched by "our story". But, to be honest, sometimes I don't want a story... I'm not saying that I would trade our girl for anything in the world, but I hate that we have to have a story in the first place sometimes. It's hard to explain. It's not that I don't want the trials and hardships, it's not that we are disappointed that our baby is "different" than what we expected. I just hate that there has to be so much pain in the story. And it's only just begun... I hate that the story will involve pain and trials for our little girl, for the big kids, for the rest of our family and friends. But I know that God is working through her already. He HAS to be.
Ugh. I hate that they have to be asking that question in the first place. Never have I had so many people ask about our mental and emotional health. And sometimes it's scary. On the days that I'm doing well, I wonder if I should be doing worse than I am feeling at that moment. Am I missing something? Should I be more of a mess? I just don't know... Other days I feel like I am pretty true to form and am just not feeling ok with the way things are. Those days aren't too often, and seem to be much less than they were at the very beginning. (At that time, I almost wanted to look horrible just to reflect how things were going. It's awful to be getting constant news about your child, and everything you're told is bad news. Those were dark days that I am thankful we are mostly over, at least for now.)
To be honest, I am just not sure how to respond to it all. I don't know what to say to people who, in reality, don't know what to say to me. Should they say they're sorry? Do I want them to say that? Do I want them to be sorry? Not really. But kind of. I don't know. Should they acknowledge that things are different, hard? Because it is pretty obvious... Should they be happy for us? Of course!
We are starting to settle into things, as much as we can for now. I'm sure that things will constantly be changing (but don't they always with a newborn?). I am looking forward to really feeling like we are in our new normal, whenever that may come. I hope it will be relatively soon. But I am also just so scared about the future. Mostly because it is so unknown to me. What will she be like in a month? In three? What will it be like when seizures start? During the winter/season of sickness? What about when she's bigger/older and needing more specialized equipment? Will we even make it that far? Should I even think those thoughts? But how can I not have that in my thoughts at times?
We have been so blessed by so many who have been touched by "our story". But, to be honest, sometimes I don't want a story... I'm not saying that I would trade our girl for anything in the world, but I hate that we have to have a story in the first place sometimes. It's hard to explain. It's not that I don't want the trials and hardships, it's not that we are disappointed that our baby is "different" than what we expected. I just hate that there has to be so much pain in the story. And it's only just begun... I hate that the story will involve pain and trials for our little girl, for the big kids, for the rest of our family and friends. But I know that God is working through her already. He HAS to be.
Doctor Appointments update
We have a few things to update from our most recent doctor's appointments. Last week Waverly saw the pulmonologist. She sees him because of being on the cardiac/apnea monitor. She got a good report there. Basically, he gave her clearance to be off the monitor if she is with us and we are holding her or attending to her. If she is napping, sleeping, or alone, then she needs to be on it. It's so nice to be able to unhook her a little more often and actually get to walk around with her some.
Today we saw the gastroenterologist. That was a very encouraging appointment. Waverly is gaining weight very well, and they were pleased with how she is tolerating her feeds. They want us to start increasing her bolus feeds during the day by 1-2mL every 2 days, with the end goal being 65mL per bolus feed. After about 2 weeks, we are also supposed to start increasing her continuous nighttime feed at the same rate, to get her to 30-35mL/hour overnight. (She is currently on 45mL/hour bolus during the day every 3 hours and 21mL/hour overnight for 10 hours continuous.) So we will see how she does as we increase her intake. They did bloodwork to see if she needs to continue on the special formula (Neosure, for preemies) or if she can "graduate" to regular formula also. She is still receiving primarily breastmilk that is just fortified with the Neosure. But, as that runs out, we will put her on just the formula. He also said that we can just do the formula when we're out instead of having to take a cooler and a bottle of breastmilk along (just a little thing that will make going out with her a little easier).
We also scheduled the date for her PEG to be removed and replaced with the MIC-KEY button. Basically, they will remove the long tube from her stomach, and place a small port right against the skin on her stomach at the tube site. The button is much easier to deal with (her tube leaks all the time...), and much less of a nuisance since it sits right against the skin. We can't wait for her button! They make you wait for 3 months after the PEG placement to get the button, so we were able to schedule it for August 19th (1 day after the 3 month mark!).
In September, we will do a repeat swallow study with her to see if she's able to swallow without aspirating. If she is able to do that, then we'll be able to feed her some orally again. She will always have the g-tube as her primary means of nutrition, but if she is able to safely swallow, then we will be allowed to feed her for pleasure (give her positive oral experiences, taste, etc.). So you can pray that she will be able to do well on that study so we can have some fun with feeding her as well. If not, it's not a big deal, since she doesn't need it for growth or sustenance, but it would just be nice to be able to have that to do with her.
Finally, the doctor was able to get her to have a BM. Without sharing too much detail, she hadn't gone since last Thursday (a week!), and when he checked her out, he saw that she had a little place that was preventing her from going (said it was normal with her growth). Once he took care of that, she was able to go, and although she wasn't really acting uncomfortable before, she definitely seems happy that that's happened. We are supposed to "help" her occasionally if she is having trouble going, but hopefully he's got her set on the right track. Over the past week she hadn't gained as much weight as I'd expected without having a BM for a whole week, but at the doctor, we discovered why. She is now 21 inches long! She's grown taller!
We were very pleased and encouraged with her visits, and pray that we will continue to receive some of these good news visits.
Today we saw the gastroenterologist. That was a very encouraging appointment. Waverly is gaining weight very well, and they were pleased with how she is tolerating her feeds. They want us to start increasing her bolus feeds during the day by 1-2mL every 2 days, with the end goal being 65mL per bolus feed. After about 2 weeks, we are also supposed to start increasing her continuous nighttime feed at the same rate, to get her to 30-35mL/hour overnight. (She is currently on 45mL/hour bolus during the day every 3 hours and 21mL/hour overnight for 10 hours continuous.) So we will see how she does as we increase her intake. They did bloodwork to see if she needs to continue on the special formula (Neosure, for preemies) or if she can "graduate" to regular formula also. She is still receiving primarily breastmilk that is just fortified with the Neosure. But, as that runs out, we will put her on just the formula. He also said that we can just do the formula when we're out instead of having to take a cooler and a bottle of breastmilk along (just a little thing that will make going out with her a little easier).
We also scheduled the date for her PEG to be removed and replaced with the MIC-KEY button. Basically, they will remove the long tube from her stomach, and place a small port right against the skin on her stomach at the tube site. The button is much easier to deal with (her tube leaks all the time...), and much less of a nuisance since it sits right against the skin. We can't wait for her button! They make you wait for 3 months after the PEG placement to get the button, so we were able to schedule it for August 19th (1 day after the 3 month mark!).
In September, we will do a repeat swallow study with her to see if she's able to swallow without aspirating. If she is able to do that, then we'll be able to feed her some orally again. She will always have the g-tube as her primary means of nutrition, but if she is able to safely swallow, then we will be allowed to feed her for pleasure (give her positive oral experiences, taste, etc.). So you can pray that she will be able to do well on that study so we can have some fun with feeding her as well. If not, it's not a big deal, since she doesn't need it for growth or sustenance, but it would just be nice to be able to have that to do with her.
Finally, the doctor was able to get her to have a BM. Without sharing too much detail, she hadn't gone since last Thursday (a week!), and when he checked her out, he saw that she had a little place that was preventing her from going (said it was normal with her growth). Once he took care of that, she was able to go, and although she wasn't really acting uncomfortable before, she definitely seems happy that that's happened. We are supposed to "help" her occasionally if she is having trouble going, but hopefully he's got her set on the right track. Over the past week she hadn't gained as much weight as I'd expected without having a BM for a whole week, but at the doctor, we discovered why. She is now 21 inches long! She's grown taller!
We were very pleased and encouraged with her visits, and pray that we will continue to receive some of these good news visits.
Tuesday, June 28, 2011
Update
Sorry I've been so bad at updating lately. Life has been moving quickly, and I rarely have time or energy to sit and think much less write. We have been adjusting to much. Caring for Waverly wasn't nearly as overwhelming after her first week home. But it is still a lot, and at times it just hits me/us. She has been doing very well and growing. She is up to 7 pounds now! (She was 5lb 11oz when she was discharged from the hospital 3 weeks ago!). She's having more awake periods during the day as well, so that's fun to see her awake and aware. The kids are IN LOVE with their little sister, and love to hold her (with our help, of course!) and kiss her. We have been learning how to incorporate them into some of her daily care. One thing they love to do is to help give her meds. We get the syringe ready, and then the push the meds through with our help (she gets them through her g-tube). I love that first picture of her! She smiles a good bit, although I still have yet to see a "real" smile in response to us. But she will flash little grins here and there, especially while asleep. I can't wait for that first real, connected smile, and am praying we will see one very soon! She is starting to keep her eyes gazed with ours sometimes now too, which is a great sign as well. I find myself so excited for the little things these days, which is neat to have that perspective.
I also love when she lays with her hands above her head...so cute! I dressed her up fancy to see how she looked all dolled up. Pretty cute!
She was sleeping pretty well for a while, but that seems to have changed some now. She's been waking up at 2:30a.m. and then again sometime between 4:30-6:30 and not sleeping soundly past that. We are hoping she will turn that around very soon, especially since we had several nights of her sleeping through the night for a while! I guess we got spoiled too early...! 
This past week we've started having private duty nursing services, which is a whole other post in itself. However, I will briefly say that it's been both helpful and hard at times. It's strange having someone else in your home taking care of your baby. But it's been a huge help since she requires a good bit of extra care (even more than just a newborn). Thanks for your continued prayers for our girl and our family. We are learning lots and falling more in love with her each day!
Friday, June 24, 2011
First Dress
Last week Waverly sported her first little dress. She looked so cute in it!
I love seeing her in all her girly outfits after only seeing her in the white hospital shirts for the first 30 days of her life. She's such a pretty girl!
I love seeing her in all her girly outfits after only seeing her in the white hospital shirts for the first 30 days of her life. She's such a pretty girl!
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