First Bath

We've enjoyed lots of firsts with Waverly over the week she's been home, including her first bath.

Here she is before the bath. This picture shows her funny hairline that people keep commenting on. She's got just fuzz on top and then a nice head of hair around the back! It's actually long! Too bad you can't really put bows in the back of the hair...!Since she can't be in water yet because of her g-tube, we have to give her a sponge bath. So, we just went ahead and bathed all three kids at the same time (see the big kids in the background?).



Pouty face!

First Walk

After being in the NICU and not getting to even breathe fresh air outside for the first 30 days of her life, we were so excited to get Waverly outside for some fresh air and sunshine.

Coming Home Day!

(Sorry I'm just now posting these...I was able to borrow a camera cord to load the pics on the computer!)

The kids were thrilled the day Waverly came home, after being in the NICU for 30 days!

They didn't want to leave her side!
As soon as I got her out of her carseat, they wanted to hold her! A proud big sister!

Our THREE kids!!!
So happy and excited!
Love this pic!
Big brother with long eyelashes!

Heart Thoughts

For a while I've been wondering how much to share on this blog. Just the factual/medical stuff? Emotional stuff too? If so, how much? It's hard to know how open and real to be, and how much to keep in. In general, I am a very quiet/private person, but as I've gotten older, I've learned it can be good to open up some. I've decided that if/when I am ready to share some of the emotional stuff on here, I will entitle it "Heart Thoughts". That can be your clue and/or warning of what's to come. I'm still not sure how open or raw I can/should be, so I guess we'll just see as we continue in this journey together.

For now, I am struggling the past few days. I just read the blog of another kid with MDS. He passed away this past Sunday, at 10 months old. He had several more issues than Waverly currently does, but it breaks my heart to see another family going through what very well may be in our future sooner or later. I've struggled with not knowing how to treat Waverly: like a normal baby and still continue to do what we used to (as much as possible, of course with new adjustments!) or be very cautious with her to protect her as much as possible. Or what is the balance between the two? I feel torn between my two big kids, not spending as much time with them, their lives being in a bit of an upheaval, etc. and this tiny little baby, wanting to hold and care for and kiss her as much as possible since I don't know how long I'll be able to do that for her.

The reality is, we just don't know, and that's hard for me. I want to be prepared, and I don't want to, all at the same time. This isn't normal, and I hate it. It's not how God intended life to be, but because this world is broken, this is how it is. The amazing thing is that He has not changed. He is still the same God that created the world perfect, and is the same God that will make it all right again in the end. We now long for that end more than ever, as we wait in anticipation of the day when all will be made new. Come, Lord Jesus, come...

One Month Old-birth story

Yesterday Waverly was one month old! I have some pics to share, but can't find the cord to connect the camera. And since she's not doing much yet to update on, I figured I'd write out her birth story instead! One quick stat for her one-month day is that she now weighs 5lbs 12oz! She's growing slowly but surely!

Warning: if you get grossed out or embarrassed by birth things, continue reading at your own risk!!! :)

Birth Story
At my appointment two days after I was 36 weeks, my OB announced her plan to induce me at 37 weeks. (Until then, she'd said they didn't want me to go past 39 weeks, so I was planning on sometime that week.) I was shocked and then went spinning into hardcore nesting/preparation mode for the week. (That was a MOnday, and I was to be admitted Friday evening.)

On Friday they admitted me to the hospital to start Cervidil to help "ripen" my cervix since I wasn't really dilated any. They next morning they started Pitocin. The contractions were regular but not too intense for most of the day, coming every few minutes. As the day continued, I'd have to breathe deeply through them, but could handle them ok. By mid-afternoon, however, the intensity picked up. I was also grouchy and bored since I was stuck to an IV pole and monitors (for baby) all day, and only allowed to eat Jell-o and popsicles. The contractions were getting quite uncomfortable, so I went ahead and got some pain meds through my IV (fentenel sp?), at about 3p.m. Almost immediately I felt the effects and got really loopy and spacey. I drifted in and out of sleep for a while. I woke up around 5:00, when they came in to check me. I was only 1cm dilated after all that, and was crushed. I'd had in my mind that the baby was coming on Saturday, and was so disappointed that after 24 hours of being in the hospital and going through all that, I'd made such little progress. I also really liked the doctor who was working that day, and was disappointed that he probably wouldn't be the one to deliver since he got off at 7:00 the next morning. The plan was to go ahead and stop the Pitocin, let me eat (finally!), and then do another dose of Cervidil overnight. Then they'd start Pitocin the next morning (Sunday) and go from there.

I went ahead and ate dinner, then they let me walk around for a while before having to get back in bed to stay once they placed the Cervidil. As I walked around the halls, the contractions continued to come pretty hard and steady. I had to stop every couple of minutes to breathe through them. I was encouraged that my body seemed to be picking up on what we were trying to get it to do (go into labor!). At 7:00 they inserted the Cervidil, and it was time for me to be in bed and on monitors again. The contractions were still coming, but seemed to have spaced out and lessened in intensity some. Johnny and I hung out for a few hours that night, then I sent him home for the night for a good night's sleep till the next morning. They gave me some Ambien to help me sleep and asked if I wanted more pain meds for the contractions. I declined, figuring that the Ambien should be enough, and went to sleep. I woke up at 2:30a.m. in considerable pain with the contractions, and asked for the pain meds then. I really wanted to get a good night's sleep for labor the next day...

I got the meds at 3:00, and by 3:30 still didn't feel any relief (as opposed to the previous time when they knocked my out!). At that point, I figured this may actually be "it"! At 4:00, the nurse came in to check me, and I was dilated to 4cm! I texted Johnny and told him to come on in. The nurse called for the anesthesiologist, and I got up to use the bathroom before I was too numb to stand. (We had planned on getting the epidural this time in case we ended up needing an emergency c-section since we had a greater risk of needing one due to concerns with baby.) When I came back to bed, I mentioned to the nurse that I felt like I needed to "go" to the bathroom (if you know what I mean...). Well, that really got things into action quick! (Usually if you have that feeling, you are about ready to push!) She ran into the hall and called for help. The anesthesiologist was there quick, and I texted Johnny to hurry. The contractions were fast and strong! I got my epidural around 4:30, and Johnny arrived at about 4:45. The doctor came in a little after 5:00 to check me, and I was at 6cm! He broke my water around 5:30 (maybe a little later?). That was quite interesting because of all the extra fluid I had. I literally watched my belly deflate and shrink! After he broke my water, I immediately dilated from 6cm to 10cm! They waited just a little bit to get the nursery staff in there, then gave me the go ahead to push. I pushed a few times, and she was here!

Born at 6:23a.m. on Sunday, May 8th (Mother's Day!), 5lbs 5.4oz, and 18.75 inches long. I was so thankful not to have to have Pitocin again, and that the doctor that I liked was able to deliver (30 minutes before he was supposed to get off!). We were surprised she was a girl! They gave her to me to hold right away, but had to take her after a few minutes because she was having a little trouble breathing (probably because of all the fluid I had). They took her off to the NICU for testing while they finished with me (I had a small 1st degree tear). She was definitely the easiest birth as far as actual birth goes, but has been a whirlwind ever since! We praise God for His timing in her birth, and for her safe arrival!

Home-the story

Well, I can't find the connector cord for the camera to the computer, so I'll just update a bit without pics (sorry!) about what it's like being home.

We got home on Monday afternoon, after 30 days of being in the NICU. We are so grateful for all the wonderful care Waverly received there, but are so thankful to be at home and not have to go back and forth and feel torn between the two sets of kids. It's been a whirlwind since being home, though, too. There is so much to figure out with her schedule of feeding, medicines, care, gear, appointments, phone calls, etc. Add to that caring for two older (but still very young) kiddos who's lives have been a bit more chaotic lately, and it's been crazy! We are slowly figuring out a routine. I am all about efficiency (doing things smarter, not harder!), so I am constantly walking around the house trying to figure out how to streamline things.

Waverly came home on a feeding pump. Every three hours during the day, she gets a bolus feed of 45 ml over an hour timespan. I pour the milk (breastmilk fortified with formula to add extra calories) into what looks like an IV bag, hook it up to the pump, plug it into her PEG (g-tube), and hit it to run. She also gets three different meds for reflux at various times throughout the day, so I administer those too through her g-tube. After she eats and after meds, we have to flush the g-tube with a syringe of water. We also have to care for her g-tube site with antibacterial ointment and change her dressing around it. Besides those extras comes just the normal care you do for a newborn. Sometimes she's quiet and sleepy and just sits in her bouncy or bassinet and sleeps, other times are more fussy times when we hold her, etc. She's still pretty sleepy, so we don't see much awake time. We've also taken her outside some, but it's been so hot that we haven't done that much.

She's also hooked up to an apnea/cardiac monitor to make sure her heart is beating and that she's breathing. So, she's pretty much always hooked up to something. Every once in a while we'll unhook her from the monitor if she's awake and we are holding her or carrying her from place to place, but for the most part we are on a short leash while holding her. It's very different not being able to walk around with your baby (at least without much trouble). That's been a difficult aspect for me, because I feel like I either leave her sitting/laying alone, or have to stay stationary to hold her. I don't mind sitting and holding her, it's just not that easy to do for very long with two other active kiddos in the mix! I'm sure we'll figure out how to make it work better.

She seems to sleep pretty well at night. She doesn't fuss much, unless she's got a dirty diaper. We've had some issues with her feeding pump at night (of course!), and then last night her monitor went off several times (I think because we bathed her and I put lotion on her). So we've had some interrupted sleep, but not as bad as it could be. We do have to wake up to add milk to her food bag at least once. She gets a continuous feed overnight of 21ml/hour for 10 hours. But the milk can only be out for 4 hours at a time, so we add milk to start her off, then add 4 hours worth right before we go to bed, then set an alarm to wake up after 4 hours to add more milk to get through to the morning.

Sometimes we are doing well and feel like we are figuring things out. Other times it's hard, as it's all so very different. We are learning as we go, and then there is the emotional aspect. Nobody dreams of caring for a newborn by pouring milk into a bag or not being able to walk around while holding them and chasing the other kids. It makes me sad sometimes to think of what we're "missing out on" this time around. But I know that there will be much more that we will gain from all of this too. And I have to remind myself of that, because I know that it may be years before we reap that end of it (if we even get to see much of that part at all). We are still receiving so much help and support from friends and family, and I can't imagine what I'd do without that. We are SO so thankful for the outpouring of love from many. Thanks for following along on our sweet girl's journey!

We are home!!!

Just a quick note to let you all know that we are home now!!! Will post more details and pics soon.