Thursday, December 29, 2011

See, what had happened was...

So, we were all, surprisingly enough, home for Christmas. Olivia came home from the hospital the afternoon of Christmas Eve and I have to say, I was not very optomistic about how the next few days would go.
I'll explain: when the dr.s had to take Olivia off of all of her food, they also had to take her off any medications that went directly into her stomach, which is all of them. A few they could actually give through her IV, but NONE of the seizure medications she is currently on could be transferred over. Thats why the hospital stay was so bad. Olivia basically underwent withdrawals cold turkey from several habit-forming medications. They could give her an antivonvulsant through her IV that she had been on previously, which is what they decided to do. We spent two months last spring weening her off of this drug because the side effects are terrible. It makes her brain really foggy and makes her motor skills really unorganized. We had no choice, coming home, than to be on this medication and then spend another few months weening off of it again. Thats what we are doing. BUT, I will have to say that Olivia is much more herself than I ever expected. She is a little floppier tone-wise, but is still the independent, opinionated girl we know and love.

And now we have two of them. Getting to know Gabby over the past couple of weeks has been really fun. She is definitely her own person, but both girls are divas.

Gabs will only spit up on clean clothes (either yours or hers--whichever) and honestly, will only poop in a clean diaper. We are going through them like mad crazy. I've never seen anything like it. She literally waits until we put a clean one on her and then two minutes later christens it with poop. Unbelievable. Good thing shes cute.

She's still teeny tiny, but gaining about an ounce a day. She is also the most orally motivated child I've ever seen. She'll eat until she falls asleep and then spits up all the extra. If she is going to be awake for a while then she wants her pacifier too.

Brian has off of work (thankfully) until Monday. I don't know what I would do without him. I have been pretty nervous about taking care of both girls next week, but am feeling better about things as the days wear on. He is even doing hair!

Having two people really does make the outings go A LOT smoother, but I guess I'll have to get used to lugging them both around together by myself.

So, things are busy, but going well on the whole. We are so blessed with a wonderful family and I can't wait to spend more time with these girls!

Monday, December 26, 2011

Our Christmas Miracle

Details about how everyone is doing coming soon.

Tuesday, December 20, 2011

Our Bittersweet Week

WARNING: This is a long post, but I don't feel bad. It has been a long week.

There is no better word to describe the last week than bittersweet.

bittersweet (adj.) - both pleasant and painful or regretful; 
pleasure alloyed with pain

This week has been one that has us living in the tension of excitement and sadness. Excitement because we welcomed a new person into our home...Gabrielle Suzanne. She was born at 2:28pm last Wednesday (12/14). She is 20 inches long and weighs a whopping 5 lbs 9 oz. Check her out...

That awkward first photo that she will one day feel embarrassed about

My beautiful wife was a champ
My first time to hold her 
Tugger is still not sure what to do with her

I love to just watch her sleep

Resting on my chest after a meal
For those who are interested, the labor went smoothly. Kelly and I were both a little apprehensive due in part to how difficult Olivia'a labor was and all that has followed. Every time Kelly contracted and we lost a good bead on Gabby's heart rate, all we could think was, "Not again, Lord. Not again." In the end, after being induced at around 6 a.m., Kelly actually pushed for a grand total of 1 set of three practice pushes and 2 sets of three pushes and Gabby entered the world....and man does she have a set of pipes! We went home on Friday and began our life as parents of a newborn baby girl the way that most parents experience that is new to us.

What has been fascinating about this whole thing is that while being Olivia's parents has caused us to experience a ton, we had no idea what it would be like to take home a new baby who breastfeeds (which Livi never did), who spits up (which Livi never it too much? I don't know) and who cries when she needs a change or is hungry (which...well you get the picture). I know that all parents worry about their child's breathing when they sleep, but imagine when you have worried many days for the past two years about it possibly being the last time you get to put your girl down. With all that said, we keep telling ourselves, Gabby is not Livi. We are learning to enjoy Gabby differently that we got to with Livi, which keeps us on our toes and with our cameras poised to capture the next moment when she grins in her sleep, has her beautiful eyes open, or roots on me as if I have the right equipment to feed her.

Now to the other news regarding my Little Bear...the bitter part of bittersweet, if you will.

At last update, Livi was still in the hospital and I am writing this now from her room at CMH. Since the last update, they have taken away Livi's food and meds to rest her belly because a CT scan revealed that she had a little air in her intestinal wall which can apparently cause perforation in the intestines. With rest over the past week, it looks like it is resolving itself and that she will be able to resume feeds and meds tomorrow. This week has been hard on multiple fronts, but the hardest part of the past week has been watching Livi come down off of her meds. They didn't have her medicine cocktail available in IV drip so they substituted one med. This has resulted in twitching, irritability, sweats, etc. For the first time in her life, I wasn't able to console her for a few days, which was heartbreaking. She is better today, but I am excited for them to resume feedings, because that means she can have her meds again. Hopefully, we will get things back to normal before too long. We are still not sure if she will be home for Christmas or when she will be able to meet her new sister, but it will hopefully be soon. 

We covet your prayers during this time. So many of you have reached out in amazing ways already and for that we thank you. I could update you more on what the Lord has been teaching us during this week, but I will save it for another post. Sorry for the length. I guess a long week demands a long post. :) I will try to help Kelly keep up with it a little more often. To keep up with my Instagram feed, click here. I probably post pictures there daily.

Tuesday, December 13, 2011

...And the fun continues...

So, remember a few days ago when my biggest worry was that Livi and I would be in separate hospitals at the same time? Well, that will happen, but that is no longer my biggest concern for this week.

Sunday night Brian and I started to feel not quite right. We were at the hospital and had decided to head home kind of early. Without being too graphic--the episode began for me by vomiting in the parking lot at Children's Mercy (I checked this morning. The rain had washed it away:) We both ran back inside to the bathroom at the hospital, then somehow made it home and proceeded to not keep anything down for 12 straight hours. Needless to say we didn't come up to the hospital to visit Livi yesterday, which was a first for us and totally heartbreaking. But the last thing she or anyone else up here needed was more germs. I started eating real food this morning and am feeling TONS better. So is Brian. I am up at the hospital visiting Livi today, but trying to conserve all my energy for pushing out a baby tomorrow.

Which brings us to my new biggest concern: having the energy and fortitude to give birth 24 hours after having a terrible stomach bug. So, there you go. New prayer request.

Livi is doing about the same as yesterday. They keep trying to feed her and then she just whines in pain and her stomach gets huge and tight again. She is resting now after totally offending us with smell and dirty sheets, but she feels better, so its well worth it.

Again, we have so many people looking out for us that I'm not concerned about either Livi or myself having enough care. Yesterday, when Brian and I couldn't come up to the hospital, we had two extravagantly generous friends come several times to stay with her a bit. We got pictures in text messages and reassurance that she was resting well. There are no words for that kind of comfort for us. Also, my parents will be up tonight to watch over Livi and myself in the next few days. What more could a girl want? As far as I'm concerned, this whole hospital thing is just Livi's last ditch attempt at stealing the spotlight. Its working.

However, we are TOTALLY psyched to meet Gabrielle. Can't wait to update you with those pictures soon. Until then, here are some pictures from the CCVI Holiday Program last Thursday we told you about. If a picture is worth a thousand words, then there is no need for subtitles...

Sunday, December 11, 2011

Literally catching up with us

Every day I think, 'man, I need to blog this' and then another day goes by and more stuff happens and I keep waiting for things to calm down so I don't have a running list of things to tell you. The list has not stopped, but I guess I have to start somewhere.

I'm technically due with Gabby Saturday, but she doesn't seem to be in a hurry to come meet us (it must be something my kids got together and decided on) so, at the risk of me doing past my due date again, instead my dr. decided to go ahead and induce me this Wed, the 14th. We are SO very excited, but then something happened yesterday that threw a wrench in things...

We had to bring Livi back to the hospital. We're still a little unsure as to what the whole deal is, but she had an obstruction in her intestines-- basically she had tons of gas stuck in her gut and it was really hurting her. They've got her on IV fluids, though are now ready to start her on her regular food here in an hour or so because she's passed so much gas and stool and her stomach has now deflated to a normal-ish size. Food is good. She is also on a little bit of oxygen and we don't know if its because she has an upper respiratory infection too or because her inflated gut was taking up so much of her chest cavity that she didn't have tons of room to breath. We'll find out soon enough--the radiologist just did a chest x-ray less than an hour ago, so we'll know soon. She is finally not in pain and resting comfortably.

So, one of our biggest "concerns" looks like it has the possibility to happen: me and Livi being inpatient in two separate hospitals at the same time. Is it the worst thing in the world? No. But definitely not convenient. My hope is that she will be home by Tuesday, but I'm learning that those are the kinds of things I have absolutely no control over and should not spend time worrying about it, just planning for it. Luckily, my parents are totally awesome and are coming into town Tuesday evening 'til at least when Gabs and I get home from the hospital. So, if Livi's in the hospital Wed. then she is and my parents are here to take care of her, and if she's home, then they'll be there to take care of her. Either way, we will both be very well taken care of for sure.

We would really covet your thoughts and prayers the next few days as things wind down--prayers for healing for Livi and health for Gabby, but also just for peace and understanding no matter what circumstances change between now and then--and I'm sure there will be plenty of that.

On a high note, Livi had her first holiday program at school last week and it was adorable! She did great!  We have some pictures, but seeing as I'll have plenty of time on my hands the next day or so I'll post those then.

Monday, December 5, 2011

Embracing "the village"

If you read any special needs family blogs or magazines, they all talk about how it takes "a village" to raise special needs kids. And, lets be honest, it takes a village to raise any child. I knew this early on in our journey with Olivia-- that I couldn't do everything on my own. I didn't have a medical degree, didn't know anything about anticonvulsants, didn't know how to stretch her properly, nothing about assistive technology and the options for communication devices, how to encourage her to look at things that didn't light up, and an endless amount of issues. I knew we would need the village, but honestly, I didn't want it. I, for purely selfish reasons, wanted to be the sole reason Olivia became who she was. It felt natural for her mother to care for all of these needs she had. I think I was jealous. I was afraid of being phased out. I was immature and I think it hindered Olivia's growth. She got all the therapy and treatment early on, but I was insistent on being a nurse and therapist at home, and focused less on being just her mother. Wow, that was harder to even type than I thought it would be--and incredibly shameful. I was too busy try to make her "better" and less focused on just loving her.

Can I just say, though, that the past few months have been the happiest our family has experienced since Olivia's arrival. Yes, in part because she is improving and showing us her funny personality in all kinds of ways. But mostly, because being VERY pregnant with Gabby has shown me that especially when she gets here, I can't be the therapist and the nurse and the mother to two children with the intensity I first wanted to. It would be impossible. And now, instead of being disappointing, that news and realization is freeing for me. I am free to be Olivia's mother.

I'm going to cry again, but we have the most incredible team of dedicated people who love and serve Olivia with such passion--not just for special needs children--but for her. We have friends who have continually surprised us with love and concern, therapists who go, truly, above and beyond to help both Olivia and Brian and I, and preschool teachers who are so intent on teaching her and watching her grow, even though some days are difficult, and family who nurture her and are dedicated to learning about her needs. Will we still "practice" things at home and work on therapy and stretching and switches? Yes, of course. These things make such a difference in Olivia's quality of life and education. But is that my primary job as Olivia's mother? No. And I have to say, I used to think so. Those are options to play and nurture, but that is not all we will do in our house. We will have new experiences, go new places, look at new things, make funny faces at each other, sing songs and laugh. Unfortunately, I'm getting a little late to that game-- Olivia is almost 3. But, health permitting, we will make up for lost time.

So, this weekend we caught up on much needed sleep, snuggled, made faces, and made pancakes amongst therapy and practice walking. And it was delightful.

Also, don't judge the hair. All these pictures were taken in the morning for some reason.