Home!

We had the best Valentine's Day ever. We were finally able to bring our baby girl home after three weeks in the NICU.

Last Saturday, we were told by a nurse practitioner she was hoping to get us home in the next two weeks. That timeline was pretty rough for me to hear because my maternity leave would be over by then. But then something wonderful happened and the doctors who did rounds switched staffing and we had a new doctor. The first thing he asked was why she still had her feeding tube in. After a few excuses were given, he told them to take it out. Callista ate between 50-60 ml at each feeding for 24 hours. We were then told we could go home but no earlier than Wednesday (much better timeline). So we brought our car seat on Tuesday so the car seat test could be done in case we did get to go home on Wednesday. The doctor stopped by and informed us that we could go home that evening if we wanted. Well YES we wanted to! And so without being prepared what so ever, we got her car seat test done, our CPR class completed, and had everyone and their brother stop by to finish "teaching" (nutrition, etc). And by 8:00pm on Valentine's Day, we loaded up our baby and headed home for the first time. Wow, that was such a good feeling!

I'm so thrilled I can finally introduce my Callista to all of my family and friends. At this point, I am the very anal mom who makes everyone wash their hands and use hand sanitizer before touching or holding her. Hey, we worked so hard to get her here and we've all been through so much, it's within my parental rights I think ;) Everyone asks me if I'm getting any rest and I happily reply "no I'm not". Why am I happy about this? Because now her daddy and I are the ones taking care of her, not some random nurse who doesn't know her or doesn't take their time with her. I'm so happy to be getting up at 3am with the love of my life after all this time.

We had our first pediatrician appointment yesterday and we were happy with the results. The doctor said he was really impressed with her range of movements and told us we obviously did something right to do what we did. He gave us a few things to do for her legs to help her build some more tone in her legs and to help her feet flexes (I don't know if that's a word?). He also told us to just feed her whatever she wants for now, and she'll build up her own tolerance to bigger feeds as she gets older. Which makes me feel better since Children's Hospital had us paranoid that she was going to starve to death if she didn't eat 60 ml every time, all the time.

As for now, we have a lot of appointments in the next few weeks with Help Me Grow, BCMH, her evaluation team, neuro, audiology, and our first Myelo clinic (nervous about that one...).  We know we still have a lot to go through, but right now, her "abilities" are the least of my worries, because I have a beautiful little girl who needs exactly what every other infant needs: to be fed, changed, and cuddled profusely.

Please share with friends and family that Callista's benefit dinner is next Saturday, February 25th. We appreciate the sharing and hope to have a great turn out. Love you all!

Quick Update

I feel like there's been no time to update. I'd say I've been busy, but to be honest, it's not busy at all. Just a lot of traveling back and forth to Columbus and hours of sitting in the NICU with our beautiful little girl. Already I'm two weeks into my maternity leave and I feel like every day there is wasted and I'm getting closer to going back to work. I feel like it's seriously cutting into the quality time I'm supposed to have with our new family member.

We've been in the NICU for a little over two weeks now and the only thing we are waiting on is for Callista to consistently eat all of her bottles. She eats for us almost every time. Unfortunately, she does not do so for many of the nurses. Casey and I try to be there as often as we can so we can be the ones to feed her. She has a feeding tube in her nose right now, and my feeling toward this is that it looks way too inviting. Callie is an extremely slow eater. She finishes her bottle, but takes her entire thirty minutes to eat. It takes a lot of patience during feedings and although I'm not there, I suspect that after 10 or 15 minutes, some of the nurses just give up and take the easy (and quick) way and just put it down the tube. And if this continues to happen, we're NEVER getting out of there!

I brought up my concerns today and they came up with the idea that we will spend the night with her tomorrow evening in our own little room. They'll take the tube out and for 24 hours, we will do all of her care and see how she does. If she does well, then we actually have a chance at discharge. I'm glad I voiced my frustration today, otherwise we'd still be stuck in the same situation for lord only knows how much longer.

And just some random info. The blood pockets they saw in her head are still there but haven't expanded or changed, so the neuro isn't concerned. Her shunt looks better each and every day and so far we've avoided the revision that we thought for sure was coming. She'll get one more MRI before we are discharged to check her head pressure and the setting won't be adjusted until she shows symptoms of not being able to stand the pressure. Ortho was worthless in their report so no news there. We are only cathing every 12 hours now instead of every 8 (woo hoo!). And we met with the myelo coordinator a few days ago so that's taken care of as well. All that is left is to get this feeding thing over with and bring baby girl home.

Wish us luck!!!!

Progress... Sort of.

The NICU is extremely daunting. I'm just exhausted from the drive up, the drive back, and even just sitting there with our baby girl. We had hopes of coming home this weekend, but we had a few setbacks over the last week.

For starters, her shunt began to lift up and protrude a lot farther than it should. We were sure on Tuesday that we'd need to go into surgery for a shunt revision. Then the neuro doctor looked at it and decided we would wait because it was starting to look better. Yesterday evening he looked again and thought it was looking even better than before. So every day that it looks better means better odds of not needing the revision.

Yesterday, we were informed that her most recent MRI showed some blood pooled in her head. The doctor thought it was just from her head shrinking and some of the vessels between her brain and skull rupturing. He reassured me it wasn't something to worry about just yet and that they would do another MRI this morning. I know that the doctor wasn't worried, but it's rough to hear there's blood in your baby's head and to not be certain where it came from or if it stopped bleeding, etc. It was a bit of a rough day for me, even though I could clearly see her doing fine and not being affected at all.

This morning, we got the good news that the blood was in fact old blood and was no longer bleeding. Just that little bit of news lifted so much weight off of me today. And the best part is, Callista was so awake and active today. She was looking at everything and even making noises. Her eyes were bright and she was just so happy. Today was an excellent day and it made up for yesterday. And a plus: Casey and I got to give her a bath for the first time today (well, sort of a bath... with these warm wipe thingies).

She still needs to up her feedings and gain some weight before they'll consider letting us go home. She eats at least two whole bottles by herself every day, and gets about 40 ml out of the rest. I cannot wait until we see the home stretch! I'm so ready to bring our gorgeous little one home and get started on actually "living"!

Also, our very generous friends and family are preparing for a benefit for Callista to help us pay some of our mounting medical bills due to the surgery and our weekly ultrasound appointments, as well as me being off work for so long. It's so amazing that there are so many people out there who have been and still are supporting us throughout this whole journey we're on. I'm just so blessed that these acts of kindness are existent, let alone given to me. There are good people out there and I just happen to know them all <3

A Surprise Birthday!

Welcome to the world Miss Callista Winter Lynch! What a surprise we got last week....

We were scheduled for a c-section on February 8th to begin with. Then with the last post I shared that they wanted to deliver at 34 weeks (January 25th) because of her hydrocephalus being so bad. Then they decided there was no evidence that delivering earlier would make a difference so we were back to February 8th.

I went to my weekly ultrasound and during her 30 minute biophysical profile, Callie didn't move at all, she passed none of her tests, and I was scared to death. Her heart was still beating perfectly, but no movement other than one or two small jiggles that weren't big enough to count. At this point, I'm crying and on the verge of a meltdown, having a 'why me, why us?" moment. They hooked me up to a non stress test monitor and we found out quickly why she wasn't moving. Apparently I was having regular contractions and she was just chilling in there, prepping to make her grand entrance (and now I remember reading somewhere babies stop moving as women progress in labor). Because it's humorous, I'm going to share the conversation between me and the wonderful doctor (LOVE him, he's awesome!)

Doctor Matt: So, you are having a contraction every six spaces...
Me: What does that mean?
Doctor Matt: Well, I think it means we should deliver today.
Me: Today?? When??
Doctor Matt: Um.... In like, an hour. Or less.
Me: Seriously?!
Doctor Matt: Yeah. don't worry, I had a cup of coffee just now, so I'm ready. I always operate better when I've had coffee. Kinda like I always golf better with a few beers. And I rarely get the two confused.

We did in fact deliver in an hour. At 4:53pm, Callista Winter Lynch arrived via c-section. Her little cry was the best sound I've ever heard in my life. Even at 34 weeks, she was breathing room air and needed no assistance. Casey said the first thing he saw was her legs and arms flailing. After they looked her over, her very proud daddy got to hold her. She scored an 8 and a 9 on her apgars which were awesome scores! They finally brought her over close to my face and of course, I cried and laughed at the same time.

We were so lucky that the hospital broke some rules for us so our family members could meet her. Now that she's in the NICU, only parents and grandparents can visit due to flu season restrictions. She's been in the NICU since last Thursday.

Because of her hydrocephalus, she had a shunt placed Friday evening to help drain the fluid. Her VCUG, which looks at her bladder and kidneys showed no reflux, although it did show her bladder has some residual urine. That just means we'll have to cath her, although they've lessened it to every eight hours and it may be moved to every 12 hours if we continue to get such small amounts. They looked at her movement and say she's got good muscle tone in her hamstrings, her toes all flex although they sit higher, and her left foot has a slight club to it (not enough to even notice unless you're looking directly at the bottom of it. Overall, she's so awesome :) And every single SB mommy who told me that pregnancy was the worst part of being diagnosed with SB... YOU WERE SO RIGHT! Now that she is here, my entire pregnancy is behind me and I'm so glad to see it go. She's my everything and SB is the very last thing on my mind when I look into her sweet little face every day!

We may be going through a shunt revision soon as the neuro is watching her shunt placement closely. He didn't like the way it was starting to look after her head shrank, so he's keeping an eye on it for now. 

For those of you that have left me messages, sent texts, called, etc. I am definitely not ignoring you, we're just in the NICU all day and we have no cell service until we leave the hospital completely.

We love you so much and are incredibly thankful for everything that you've all done for us!!! <3

We plan, God laughs.

The title of this entry says it all... Nothing has gone as planned, and I'm sure there is a reason for it. I'm hoping after all is said and done, my faith is restored and I can more clearly understand the reasons behind why our plans have turned into something so much more.

We are 34 weeks and 2 days now. We hoped and prayed to make it this far, and here we stand. After what seemed to be a good appointment last week at the MFM, I received a call from Vanderbilt and the neurosurgeon there (the same one who did the surgery) thinks her ventricles are too enlarged now and recommended delivery after 34 weeks. This came as quite a shock to me considering whenever I voiced my concern about the hydrocephalus everyone told me not to worry; babies' skulls are flexible, the brain won't be damaged, etc etc. So now why all the sudden are we considering premature delivery? The news really shook my confidence in the whole situation that I was just starting to build up. I knew her head was getting big and I haven't experienced many other mothers who had babies with ventricles of this size. But why, after weeks of hovering around 40mm do we now decide it's better to deliver? No one seems to be able to answer my questions. We were already resigned to the fact that she would need a shunt, so that's not necessarily the issue.

Back to that planning part... We planned a normal pregnancy, and we see where that got us. We planned on 40 weeks to get ready, then lost three weeks due to having surgery and delivery requirements at 37 weeks. And then we just lost three more weeks due to this. I want my baby here, but darn it, this is just getting ridiculous... I am a planner. I plan everything! I plan what I'm going to do for the day, what I'll have for lunch, what outfit I will wear the next day, what time I will leave the house, and so on. My brain is a planning kind of brain. So when everything is unknown and everything is unplanned, my brain is not happy. And all this just leads to more unknowns: How long will we be in the hospital, what will Callie need, how will the tests turn out, will my family me able to meet her before they take her to the other hospital, will there be complications due to the earlier delivery date? I can go on and on because my brain cannot stop attempting to plan. I even dream about it! So Lord, laugh away and change my plans as you must, but just know, I'm not finding the humor in it anymore... Give me time.

As of now, we still don't have a set delivery date but we're pretty sure it'll be next week. The doctor at Riverside spent all day Friday waiting on a call from Vanderbilt. Now he is waiting to speak to the neuro team at Children's. In the last email I got, he thinks it will be Tuesday or Wednesday. Although I'm still worried, I'm ready to have her out. I'm ready to have some of these unknowns turn into some actual facts. And I just want to see her face. And hair... that for some reason seems really important to me.

Throughout this entire process, I've been told a million times how strong I am. I'd like to think I've been as strong as everyone thought I was. As much as I've shared the details of our situation, I'd like think I did not complain about what happened, only question it. It's not to say there hasn't been many sleepless nights and second thoughts, but in reality, I think maybe I did live up to the standards.

And, since this may be the last week I can blame anything on my pregnancy hormones... I hope the girl who left a not so nice message on my facebook wall in November about my "complaining about my situation" is nosy enough to still follow this blog. For you, I'm not mad, I don't hate you, I just feel sorry for you. I feel sorry that you felt the need to bring someone down to make yourself feel better. I feel sorry that you couldn't appreciate the things going right in your life. I feel sorry that you had to say the things you did when I had done my best to be a strong and confident mommy in the situation I was given. But what I don't feel sorry for is what I said back to you, and I probably never will. I don't feel sorry for deleting you, I don't feel sorry for cutting you out of my life. And most of all, I'm so thankful that I've got the support of everyone that I do, so their words of encouragement and prayers could see me past everything that has happened. I wish you well.

I may do a quick update when we find out any specific details about delivery. But if not, the next time I update will be with pictures of a beautiful, healthy, red-headed (ok, we don't know this yet, but still!) baby girl. We love you all and the efforts of your prayers has shown us endless results! <3

33 Weeks!

Woo hoo!! We've made it 33 weeks, only 1 more to go to our next mini goal of 34 weeks, and we finally have an actual c-section date of February 8th. Only 26 days left (yes we're counting in days now!!)

I had to see the OB clinic at Riverside for a consult in order to get my c-section there, and THAT was an experience.... The place had some characters in there :S. The whole thing was a big fat waste of money. For starters, they had no idea why I was there and assumed I hadn't received prenatal care anywhere else. Then they were going to redo my tests that my regular OB had already done (uh, no!). Of course, they were also insistent that I had to transfer to the high risk OB upstairs in order to get my c-section (again, no!). Overall, they made me get naked and into an icky gown only to realize I didn't need an exam...which I told them BEFORE all this. Grr. Luckily, my ultrasound tech takes good care of me and she let them know who was boss and what was going on. 

Our weekly appointment was excellent this week... No changes in her ventricles and all her movement and breathing tests were passed with perfect scores. She has an obsession with her feet already, she grabs them during our ultrasounds all the time, and wiggles her toes in front of her face.This time, she had her big toe actually pressed against her forehead.

We also found out that she's got lots of hair, you could see it flowing in the amniotic fluid. At least this horrendous heartburn I've been having will lead to something anyway! I can't wait to see what color it is! They also estimated her weight to be at 7lbs 3oz (!!!!). It may be estimating slightly larger due to the size of her head, but at any rate, her entire body is still measuring 2 weeks ahead like we have been since about 20 weeks. I cannot believe she's so big! It's a good thing though, I'd rather have a sturdy baby than have one I feel like I'm going to break.

We're pretty prepared for a shunt when she arrives... It seems inevitable at this point. But the whole idea of having the surgery was to preserve nerves, not necessarily cure the hydrocephalus. And at the rate she's rocking and rolling, we've got such great hope that our sweet baby will be a mover and a shaker. She's certainly capable of moving my entire stomach at this point. But of course, don't try to feel her move, because she stops every time. She's got something against the men in my family. My mother and future sister-in-law have both felt her, but every time my dad, brother, or husband tries to feel her, she quits moving. Casey has got to feel her some because we trick her and leave his hand there. I think she forgets about it ;). So I guess the point of this is, if the shunt is the worst thing that happens, then I guess that's not so bad after all if we get all those other awesome benefits of the surgery.

I'll end with one more picture of Callista. You can see her hand by her face pretty well in this one, and of course there's a foot up there! Thanks everyone for your love, support, and prayers. We're getting so close and you've all been so incredibly wonderful to us. We wouldn't be in this place without you!

32 weeks

We made it to 32 weeks. The chances of survival without severe prematurity side effects is increased now. Her lungs are developed enough to breath, sometimes without assistance even.

It's just crazy to believe we've come this far. Our next goal is 34 weeks, a much shorter goal than we're used to. Then we're on to our 37 week mark!! I'm hoping at our next appointment we'll get the actual c-section date so I can finally know when my baby girl should arrive.

The news was neither good nor bad from this week's appointment. She passed her biophysical profile again with a perfect score (as usual!). She's getting pretty cramped in there so her movements aren't as "swimmy" as they were before, it's weird to me to always see her in the same position, wiggling her pieces as well as she can. Instead of feeling little kicks I feel a lot of body parts just rubbing my insides. And I'm pretty sure she's squishing some of my vital organs... Her ventricles hadn't increased for three weeks but we weren't as lucky this time. They increased from 37 to 40 this week. I've been reassured by more than one lovely medical person and a lot of other SB mommies to not worry about this. The doctor said it could just be her position since she's head down, wayyyyyyy down, and it's hard to get a good picture. And per our routine, she covered her face with her hands and/or feet the whole time so we couldn't get a new picture.

I did get permission to "be more active" from Vanderbilt this week, meaning.... I can leave the house for a minute, fix my own lunch/dinner (oops, been doing that anyway, out of necessity), walk very small distances, etc. Nothing crazy, but it still feels good to have a little more freedom. Definitely not overdoing it though because we've made it this far and we ARE making it to 37 weeks, I insist!

Of course, with the new year, my insurance co-pay has been reset back to $2500, and I'm still paying on the $2500 from last year... The finance thing is really getting to me mentally. It seems like every time I turn around they want another doctor visit, another test, more more more. And the baby needs things (good Lord, spent $130 on breast feeding supplies today, yikes!). I'm calling the insurance company Monday to see if I have any coverage for travel expense, etc. since we made the expensive trip to Nashville and then have to drive to Riverside every week. I got one of my student loans lowered and then come to find out I have another one, so now I ended up owing more than I did before I got it lowered... Of course, I'm used to having two incomes myself from my regular job and my lia sophia business, so it hurts double for me to look at my account. Kinda seems like we're back to that place where everything is against us. We knew and agreed to the surgery knowing it would cause some finance issues and we're dealing and surviving but it's hard. I haven't purchased anything for myself except for a scentsy warmer and some maternity clothes, and I don't drive anywhere or eat out for lunches anymore so we're saving a lot there. Just stress on top of stress and I do apologize for the rant. I am thankful for what we have and are able to keep, I know there are those in worse shape and my heart goes out to them. <3

To end on a positive note, I had a nice outing with my mom today. Still in the wheelchair of course, but we took a trip to lunch, to the mall, and to the magical world of Walmart... It was refreshing. Sorry if you're a dude and reading this, but I also enjoyed buying a new bra with NO padding for my awesome pregnancy boobs. Callie may be stretching my belly, hurting my back, and giving me heart burn from hell, but darn my boobs and hair are fantastic ;) Probably TMI, but hey, I have to find something to be satisfied with LOL. Since I can't go to the salon right now, I did my own hair as well this week which I'm happy to say turned out extremely well (whew!). I guess it was just a week for me to start "feeling pretty" again. Hopefully we're doing maternity pictures next week!!

As always, we appreciate your continuing support and prayers you send our way. Who knows where we'd be without all of you wonderful people who've been there for us <3 We love you so much!!! Keep it up for the next 5 weeks!!