Neurosurgery appointment

Just a quick update from our appointment with the pediatric neurosurgeon this week. (Isn't it crazy that my baby sees a neurosurgeon?!?) It was a very encouraging appointment. She checked Waverly's head to make sure the fluid wasn't putting too much pressure on things, and it looks good, so no shunt is needed. (She has extra fluid in her lateral ventricles, which is taking up some of the "open" space where the brain matter should have been. As long as it's just taking up the open space and not creating pressure on the brain, then she is ok.) She also checked the sacral dimple on her spine, and said that looks fine too. She was really encouraged by Waverly's ability to track, or follow things, with her eyes. She said that was wonderful! We were so happy to hear such good news! She did talk to us about her head shape. Basically, Waverly likes to turn her head to the right, and her head is starting to flatten some on that side which is pushing it forward in the front. (It's also the side where she has the most fluid in her ventricle.) So she encouraged us to be very proactive about preventing her from turning her head that way by placing her on her left side and propping her with blankets or pillows to prevent her from rolling back. She said we should see results from that over the next few months if we are diligent about it, so we will be working on that. (We have been doing it some, but just not all the time.) We also weighed her, and she is now right at 8 lbs! So, she's been responding well to the faster increase in food since last week. We are very encouraged at all these great signs. She is pretty much up to full feeds (60mL boluses during the day, and 30mL continuous at night). We are going to increase her to 65mL boluses over next week and then will keep her there until we hear from the GI doc about increasing it more at our appointment with him in the middle of August. Next week we actually don't have any appointments scheduled for her, I think for the first time since we've been home. We'll see if we can actually keep it an open week, or if something ends up coming up! :) I have high hopes to maybe try potting training with J, so hopefully the week will remain free! Wish me luck...!

Heart Thoughts-Death Crawl

I heard a talk today in which a woman referenced a scene from the movie Facing the Giants. In this particular scene, called the Death Crawl, one football player is asked to crawl across the field on his hands and feet, carrying another player on his back. Blindfolded. The coach says he has to go 30 yards, and asks the player to give his best. He agrees, gets blindfolded, and lowers to the ground to start. He starts at a slow but steady pace, with the coach quietly encouraging him. After a while, though, he begins to get tired. The coach starts encouraging him more, until finally he is down on the ground, crawling with him, yelling at him to keep going. The whole team gets up and walks behind him, amazed at what they are seeing. You see, the player went well past the 30 yard line, and was still going.

"It hurts!" he cries, and the coach just keeps yelling louder, as much to drown out the voices of doubt in his head as to encourage him to keep going. "Ten more steps! Five more! Three more! Two! One!" The boy collapses on the ground. Then the coach takes the blindfold off, and says, "Look up." He was in the end zone. He had made it the entire way across the field.

What a powerful picture that was to me at this point in my life. Honestly, I am thankful for the blindfold. If I had known what God would ask me to do, I would definitely have said there is no way I could do it. I actually feel like I am just at the beginning of this crawl. I have no idea what the next few weeks, months, or years will hold. And honestly, I don't think my heart could bear it if I did know. And to be even more honest, I really don't know if I can actually do it. But that's where ya'll come in. You all are the coach, and the team, supporting us in this journey. Will you continue?

It's only been about 3 months, and we are already weary at times. Often, I wonder just how long I can last. And that's where we have seen you, and continue to need you, walking beside us, behind us, even crawling with us and screaming the truth to us. Because with all that has been done to help bear our burdens, there is still much of the burden that we simply must bear ourselves. See, often people will say that God won't give you more than you can handle. But that just isn't true. We weren't chosen to walk this path because we are just so strong and full of faith. What glory would God get if it was OUR incredible strength that got us through? The truth is, we are weak. And scared. Oh, I'm scared. No, it is HAS to be Him, His strength.

Lord, thank You for the blindfold. Thank You for the team around us, to encourage and support us. Thank You for Your strength, that with You, all things are possible, even things that we don't think ever could be possible.

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!

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?

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...