Dr.'s appointments, Therapy, and more!

Hey all, Kailey here.

These past few weeks have been pretty busy! Ellery had her follow-up after surgery eye appointment, and Dr. R said he thought everything looked great! He referred us to a pediatrics optometrist in September, to see if she will need glasses. She fought him pretty hard this last exam, so he did mention the possibility of her next exam, which isn't till October, having to be put under. He said she won't have to be intubated, but she will have to be "put to sleep" so he can see. She's such a little fighter, he has a hard time looking at her eyes!

Ellery also had her 6 month pediatrics appointment. Dr. E said she looks great! She weighed in at 13 lbs 9 oz, and was 23.5 inches long! She actually hit the charts for her actual age! She was in the one percentile for height, and the 3rd percentile for weight. Her head circumference was in the quarter percentile. I was so proud she actually hit the charts! Dr. E said she is doing mostly what is expected for her adjusted age, which is about 3 months. We also got the go ahead to start solids (also per our therapist). So, on Wednesday during therapy, we set her in her bumbo and gave her her first solid food: sweet potatoes! She did really well! Our therapist said she did exactly what a "normal" baby would do at first exposure to solids. She is slowly getting used to eating, we are only feeding her once per day right now and sticking with the same amount of bottles. So far, she has had sweet potatoes, squash, and bananas. She DID NOT like the bananas. I didn't either! I've been trying all the food that I'm giving her, and I have to say the bananas were sick. I really enjoyed the sweet potatoes! hehe

This past week in therapy, our therapist said she "made his day!" She FINALLY followed a toy with her eyes, and seemed interested on focusing on it. Our therapist was getting really worried that her eye sight wasn't very good, because she didn't seem to focus on any objects. She has also greatly improved with her head strength, and seems to be getting better every week! He has started a new exercises on an exercise ball that really seems to be helping her head strength. I was really happy after therapy that she seemed to make such progress!

She's been quite chatty lately, and has moved from the "Ahh-goos" to the "Bababas". She still doesn't outright laugh, but has this silly little giggle she does. She's been making really good eye contact with us. Our therapist thinks she definitely needs glasses, just based on how she looks at objects, so hopefully once we have her eye appointment, she may improve on playing with toys, and looking at objects.

The best thing that has been happening recently is she has been able to go for a few HOURS with NO OXYGEN! And she has been consistently on 1/32 of a L, which is the lowest our tank will go. This is a huuuuuuge improvement! And we have been so excited! In fact, typing this out makes me terrified we will jinx it! Our pediatrician told us at her last appointment he feels she will be OFF OF OXYGEN in 8 weeks! We are praying so hard that that will happen! How great will that be!!

We are coming up on RSV season, which we will be completely quarantined to the house during. RSV is a very nasty respiratory virus that can be deadly to little preemies with their underdeveloped lungs. There is a shot, called Synagis, that can be given to help "lessen" the symptoms of RSV should a baby catch it, but it is very expensive and insurance likes to deny it. Our pediatrician is working on getting it approved for us, so Ellery will at least have some protection coming up this winter. We still need to be very careful that she does not contract it. We've been pretty quarantined since she's been home, but we've made a few outings with her. I'm so scared of her getting sick. Especially with all the progress she has been making with her oxygen needs!

As for us, not much new is going on. I finally got one of my debts paid off, which feels GREAT. We also sold my old car, so it's no longer sitting on the side of the driveway. I've been reading like a fiend, which I'm really enjoying, because I took a big break from reading while Ellery was in the NICU. Just didn't ever feel like it. I'm also trying to cook new recipes more often. Usually, we cycle through the same menu every week, so I've been trying to change it up a little. I'm getting a little more time to do things as Ellery gets a little older. She is still pretty dependent on her momma though!

I was feeling pretty homesick last week, since we usually try to take a trip home around August or September. Especially since fall is coming up, my favorite season, and you can't beat fall in Oregon. Makes me miss Corvallis, and school time, and all the trees changing colors. We don't have many trees out in the desert.

I'll leave you with a photo bomb of recent pictures of little Miss Ellery.

6 month picture

First time in the bumbo

My Beaver Babe! :)

Funny little smirk :)

Yummmm sweet potatoes!

She fell asleep during tummy time

Getting waaaay better at tummy time!

On 0 oxygen and satting at 100!! (This is rare...but it happened!)

Cutie Patootie

She likes to flash me

Naked Face!

Asleep on Dad

Pretty eyes

Ellery is 6 months!

Hello everyone, Kailey here.

Ellery turned 6 months yesterday! I cannot believe it. It does not seem like she should be 6 months old! This morning, after I fed her, I was holding her on my chest and noticed that her feet now hit below my stomach. I remember when her feet hung right around where my boobs are. I could tuck her into my shirt and her feet would fit in my bra! Now she's so big! 

She has been doing really good since her surgery. She has actually been using a little less oxygen than normal. Actually, quite a bit. She has consistently been on 1/32 of a L where before she was on around 1/16 to 1/8. We are pretty happy about the sudden decrease; we are hoping that it will stay that way! She has been babbling like crazy, smiling, and laughing. It's been a lot of fun to play with her. :)

Other than that, not a whole lot is going on here. It's been some strange weather lately. Lots of thunderstorms, and some rain. The rain makes me homesick for Oregon. It doesn't rain very often here, and when it does, it never lasts. I never thought that I'd miss the rain! But oh how I just wish we could have a rainy day here, where it would just pour all day long. Of course, I miss the trees too. Living in the desert is nothing like living in the lush Willamette Valley. 

I took Ellery to my old work yesterday. That was a lot of fun! I really wanted to show her off to my coworkers. They seemed pretty excited to see her too! My rule was NO TOUCHING. So they just got to look. Our pediatrician had recommended we get out NOW while it's summer, because once winter comes around we are going to be pretty housebound. In winter, RSV goes around, which adults get and it acts just like a cold. But if Ellery were to get it, she would probably have to be re-hospitalized. It can be life-threatening to these little immune-compromised preemies. Especially ones who just don't have strong lungs, like Ellery. 

I need a new book to read. Anyone have any suggestions? I'm reading Total Money Makeover right now by Dave Ramsey. I want to get out of debt! But, I'd like to read something a little more fun that that. I need a trip down to the library, so I can load up on some books. I think I owe them late fees still though :/ whoops!

I found some videos on my phone from when Ellery was really little, and I wanted to share them with you. The 3rd video is Rick playing with Ellery. I also put some "then and now" pictures so you can see just how much she's really grown! Enjoy!

Ellery with Daddy's wedding ring: about 3 weeks old

Ellery at 6 months old!

Ellery at 4 months old

Ellery at 5 months old

Ellery at 6 months old

Ellery's Surgery

Hey all, Kailey here.

Thursday, August 4th, Ellery went in for Retinopathy of Prematurity surgery. The night before she went in, I was so nervous I could hardly sleep! She wasn't allowed any food or liquid after 5 am, so I woke up with Rick at 4 and fed her her last bottle. We had to be at the NICU by 6:30, so I stayed up and got ready. It takes me a little bit to get her ready, since I have to switch her to her travel oxygen tank, and then get the case for her monitor. I also checked her diaper bag again, as I had packed it the night before, to make sure I had everything I needed. (As it turns out, I forgot the "key" for her oxygen tank, so I had to borrow one from the NICU! It's what turns the tank on and off.)

We got to the NICU and waited for a bit for Carolyn to arrive to get us ready. I called Janice in the meantime, since Rick couldn't be there she was going to come sit with me for the day, and pick Rick up later. (For those of you who don't know, Janice is a dear friend I made from church who has really been there for me during our whole NICU journey. Now that we are home, she comes over often to visit and see Ellery. I don't know what I'd do without her!) Ellery went back to an isolation room in the new NICU (which by the way is FABULOUS! Sort of jealous we weren't there!!) and we undressed her and hooked her up the NICU's monitors and oxygen. I thought it would be hard to be back in the NICU, since there are so many memories, good and bad, but since it was a brand new place I'd never really been, it wasn't really that emotional. I was scared to death for her surgery, but no reminiscing about NICU times. Everyone was so surprised at how big (and cute lol) she is! I was so glad we were in the NICU because we already know most everyone there, and they know us, and I like to show off Ellery.

While Ellery got her IV placed, I went to the main lobby and registered her. I met Janice up there. We went back and watched them prep Ellery, and then I just held her and cuddled with her until they were ready to start. She got eye drops periodically to dilate her eyes. She was so good! She hardly cried, I was so proud of her. I had to lay her down once they were ready to sedate her. She was kicking her little legs so fast and hard, and looking all around like crazy when they started to give her the drugs. Eventually her kicks got slower, and her eyes heavier and heavier until she fell asleep. I gave her big kisses, and that's when I left. I didn't see her intubated, but that's perfectly ok with me LOL

Janice and I got to stay in one of the new NICU transition rooms, which is where you would stay when you roomed in with your preemie. We watched TV a little bit, said a prayer, and just talked. I'm glad she was there, because I definitely started tearing up when I walked out of her surgery room. 

Dr. R came in after a bit to tell me how the right eye went. He said he normally lasers 3000 times on an ROP eye, and with Ellery he only had to laser 670 times on her right eye! Hopefully that means she will retain a lot of her peripheral vision! Once he had looked at her left eye, he determine he was going to laser that one too, since we had her here and put out, and he only had to laser that one 510 times! So we are hoping that both eyes will retain some peripheral vision. I guess her retinas had grown out so far they couldn't see them on the RetCam. Only Dr. R could see them when he looked! 

She woke up around 2:30, after Rick had gotten into town and to the hospital. Once she woke up, she started moving like crazy! She wanted that intubation tube OUT!! I was so afraid that once it came out, she wouldn't do very well, but they pulled it out, she went straight to nasal cannula, and was on about the same amount of oxygen she uses at home!! I was so proud, and so happy!! Her poor little voice is so hoarse though! I don't know if any of you have ever had surgery, but being intubated is not a comfortable thing. It makes your throat sore, and scratchy and raspy. She's also got a lot of crap built up that she just needs to cough out. It sounds awful; it makes me constantly clear my throat because it makes my throat feel awful LOL

Carolyn did talk us into going to dinner and a movie. She said we had the most expensive and experienced babysitters available, and to take advantage of it :) So we did! I was worried at first, I just don't like leaving her now that I've had her home, but it was really nice to be out with Rick. We haven't had the opportunity to do that since she came home. We saw Horrible Bosses, which was hilarious! I originally told Rick to pick the shortest movie playing, and that was one of them. I wanted to see it anyways, but I wanted to get back. 

I did end up staying the night and Rick went home. She had a pretty good night, but didn't eat real great. Rick got back to the NICU around 7:00. We got the all clear to go home around that time, and we left around 8 or so. We have a follow up appointment with Dr. R on the 15th, so hopefully everything will be looking good. Today she is still pretty sleepy, and not too terribly interested in eating. I've been going about every 3 hours, and getting her to take anywhere from 1.5 ounces to 3. I think she still doesn't feel the best. Her throat is still raspy and she still needs to cough that crap out. Her eyes just look a little puffy. We have two different eye drops that we have to give her four times a day. But she seems pretty happy for having had surgery. Dr. R said she shouldn't be in any pain. When he does the same procedure on an adult, you would drive yourself home, and be awake and talking the whole time. She had to be out because you can't tell a baby to hold still and not move LOL

Did I mention just how much I love the new NICU? It's so nice! I could be a walking add for EIRMC lol. Also, it really was soooo great to see all the nurses that we had grown to know. They were such a huge part of our lives for 3.5 months, its hard not to miss them once you leave! 

Well, I feel like I've written a novel! That was our big day. We were so scared, but it all ended up being good. I think the scariest thing was we've seen so many scary things happen to her, it was nerve wracking to have her be back in a vulnerable position like that. She's come so far from where she started, she really is our little miracle baby. I thank God everyday she is here with us, and doing so well. Even though sometimes I feel sad about everything that happened, I know that we are so blessed, and there are so many worse things that could happen. She escaped any surgeries while she was in the NICU. No PDA surgery, no NEC surgery. She is such a little fighter.

I'll leave you with some pictures from her surgery.

Waiting to go into the NICU: I'm hungry Mom!!

IV placed, waiting to fall asleep

Looking all around, fighting like crazy to NOT fall asleep. 

Right after surgery: still intubated, still asleep

Eye Surgery (And Photo Bomb)

Ellery's eye appointment on Monday didn't go as well as we had hoped. She will need eye surgery this Thursday. In her right eye, the retina are detaching and causing some hemorrhaging from the pulling. For this surgery, she has to be put under anesthesia and paralyzed, so they can effectively laser her eye. They are going to preform a more in depth exam on her left eye to see if it may need lasered also, and just get everything done at once if it does. Dr. R did say that he has never seen a baby this old need the laser surgery. Usually if they start to grow out of the Retinapothy of Prematurity, they continue to grow out of it, not regress. The laser surgery will take away her peripheral vision, but it will save her sight over all.

I just found out a little bit ago that we will be going back to the NICU for the surgery. A little stressful. I'll be happy we will be in a place that everyone knows us, but there are so many memories in the NICU, good and bad, that it will be emotionally hard to be there again. I really hope that she will be able to come home soon though! It all really depends on her, and how soon she can be extubated and taken of the respirator for her to come home.

We are pretty nervous about the whole surgery. Unfortunately, Rick has no more vacation time, so he will be unable to be there. If she has to stay the night, I'm going to stay there with her.

On a happier note, be ready for a photo bomb!!!

Grandma and Grandpa Harpole with Ellery right after she came home

Grandpa with Ellery

3 Generations!

Grandma with Ellery

She loves her hands, and our hands!

Indy licked her head, you can see his nose. She looks surprised!

I just like this picture :)

Milk coma!

What i wake up to! :)

After her eye appointment. She was so happy!

This is what she does instead of eating. Apparently, I'm hilarious while feeding her!

Rick sang her a song; she didn't like it!

 I will keep you all updated on the surgery. As of right now, looks like we are going in at 6:30 am for surgery at 9:00 am.

-Kailey