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.

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.

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!

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!

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.