Doing Well

We've been back in the hospital for ten weeks now. Our little one turned three months old on the 25th. It's hard to believe we've been driving an hour and a half to and from the hospital every day for almost three months. When I think about it, I'm sad our little girl has spent 1/4 of her first year here in the hospital. But I think we are seeing a light at the end of the tunnel, they've been talking about sending us home a lot lately. One person told us we could be out as early as Friday. I am so hoping this is the case.

She's been doing so well that we may not have to wait on home nursing because she doesn't need it. We haven't been using wall suction since Wednesday and so far she hasn't needed it since then. They first told me she wouldn't go home with anything... I wasn't going home without a monitor for her oxygen level at night, so I bothered them until they agreed to it. Apparently you can get your way if you tell them you feel unsafe going home. Which I did feel unsafe. Once you see your child choke and turn blue for no apparent reason, that's enough to make you panic for the rest of your life. And since it was such a sudden onset there's no way they were sending me home without a monitor, or I'd have to become one of those super insomniacs that don't even miss sleeping because I'd have to watch her every minute of every day. We really want to come home but I think both of us are trying not to get our hopes up because every time we do, we get a setback.

In more good news, the ENT doctor came by and did another scope of her throat. He said she has obvious improvement in sensation and swallowing skills. She still has some numb spots but the muscles that help her to not choke are functioning and close when he touches them with the scope. Of course only time will tell exactly how far her recovery will go, but based on these results, she gets to try her first bottle on Monday. She hasn't had a bottle since February 26th... If it goes well, we will get to feed her anything she wants by mouth and put the rest through her g-tube.

The g-tube and I still have a love-hate relationship. It's helping her to come home, and definitely helping her gain the weight she needs (we're up to 10.5 pounds now!). But it's huge, and bulky, and yes it's still ugly. Our six week check up cannot come soon enough so hopefully we can switch to a button instead of the giant tube that just hangs there. I've been working on learning how to take care of it and it doesn't seem that hard. I've done the dressing changes the past couple of days on my own. I guess the only thing left to really learn about it is what do to if it comes out.

I go back to work tomorrow. Part of me is sad, because I will no longer get to spend all day with Callista and I'm going to miss OT and PT and for the most part the doctors every day. I'll have to get second hand information which isn't really the best route. Plus, I'll still be driving back and forth, I'll just be working before hand. I'm going to try VERY hard not to be a cranky person because of this (and hey, hopefully she will be coming home!). At least they did agree to let me come back part time. Once she is home and settled in I'll be going back full time, but this gives me some much needed time to be able to travel to the hospital and back and still keep half of my sanity. Part of me is glad to be going back to work. I'm tired of going without. I know that makes me sound like a spoiled brat, but that's not what I mean by it at all. I guess I'm just tired of having to plan out everything to the dollar so I can be sure we can pay our bills. I'm tired of not being able to go have drinks with the girls or whatever because I can't justify spending $6 on a drink. I also want to get back to doing my own job. I appreciate everyone trying to pitch in and keep it semi caught up, but wow I'll be glad to be back in control of my areas. I'm nervous about what kind of state it'll be in though lol. And I am nervous about going back because people will ask me questions... If I don't think about it, I can get through my days quite nicely, but talking about it is different. I'd like to pretend it's not there, but I guess I can't wear a sign around my neck that says "Please don't make me talk about it".

So here we go, trying to get back to a somewhat normal life. I tell myself this IS our normal now, and someday I think it will feel that way. We will fake it until we make it :)

Beautiful Disaster

Before my update on Callie, I'd like to ask everyone to keep a family in their prayers... Today my heart is broken for a friend of mine. We've never met. But her little girl has had more influence on me and many others in her short life than anyone else I know, and for that, we give thanks. This mommy and baby had the same surgery as we did, but her little one ended up being born at 25 weeks. She went against all the odds and fought so hard. She defied everything her doctors said. Again, this newborn little lady showed me that anything is possible. It was such sad news to hear this morning that she had given in to her respiratory complications and went to dance in heaven. So although I don't know her mommy personally, I love her and her family so much, and I know that I and all the other mothers and fathers on the fetal surgery facebook thank you for sharing such an awesome inspirational human being with us. Please know that you've got more prayers coming your way than ever before. Be at peace little angel.


Now...

I am a bad mom... Actually I know I'm a good mom, but I feel like a bad one today. Callista had her g-tube surgery today. And I hate it... It's ugly. It's much larger than the example they showed me. My baby's poor little belly has a gigantic tube sticking out of it. And they told me it was easily hidden under clothes. That's a lie unless something massive changes. I know, it's shallow, but this is my pretty baby.. And this is not pretty. It just makes me sad because she's been through more than enough already. After six weeks they'll consider putting a "button" in place of the tube. Maybe then I'll feel better about it, but right now I just don't even want to look at it. So yes, I feel like a bad mom.

The tube will be worth it though if we get to come home. It'll be eight weeks Sunday. And that's eight weeks too long. We've been told that as long as she's medically able, as soon as our medicaid waiver is in place and she handles the g-tube well, we will get to come home. The bad news about all this is that a medicaid waiver could take two weeks... or six weeks.. or however long it takes. So they've prepped us by the fact that she may be medically ready to go home long before she is actually allowed to go home. The medicaid waiver would give us a nurse to stay with her during the evening so we can sleep while they watch the monitor to make sure she doesn't need suctioned. Otherwise you know I'd be there staring at her, afraid to go to sleep.

One of these days I'll find the time or the energy or both to finish her room and give the upstairs a thorough cleaning. Until then, we just keep the door closed so I don't have to look at it! There is a crib in there, and it is painted, but wow it's a disaster. That is life, a beautiful disaster.  But we're making it.

Getting Somewhere and Nowhere

Every day we feel like we're making progress and like we are getting somewhere. But then when we talk to the doctors in charge of her case, we're not any closer to coming home. I was really hoping to have her home soon since I'm out of favors at work and out of money as well. My return to work date is now April 30th. It's going to kill me to go back, but there's no other options at this point. I'm going to request part time work if she's still in the hospital, hopefully God will grace me with that opportunity. It'd be even better if she were home with us by then, but it doesn't seem like that's going to happen.

Ever since the second UTI, she's had a slow recovery. She was extremely cranky this past weekend (we suspect it was due to her reflux combined with the UTI). Over the past few days she's become more of herself again. She was very happy yesterday and today, which makes me a happy mommy as well. This afternoon she had some pretty noisy breathing and they were concerned it was pneumonia so they did a chest x-ray and it came back clean. They did another urine and blood culture (I think this is the third one in a week?) because she had a low grade temp (99.4). Those have shown nothing ever since she was diagnosed with the UTI from the first one. Part of me is glad they're watching her closely, but part of me also thinks they're putting way to much weight onto something like a temperature that wouldn't be anything if we were home and not being watched 24 hours a day. And if it is something, then they need to look elsewhere besides blood and urine cultures because those obviously aren't yielding any information for them.

It's 7 weeks back in the hospital tomorrow. Please pray they get this figured out soon, because I can't take it there anymore. We're ready to have a healthy baby at home and get our lives as a family started.

Dreams

I'm already having a down day and my day hasn't even started. I had a dream that we got to take our little girl home and we loaded her up in the car and she was happy and healthy and holding her head up on her own. And then I realized it wasn't our baby and we had to give her back and go back to the hospital and be with our baby.

No one told me how hard it would be to see all the healthy babies, the normal pregnancies, and most recently, all the other babies who get to go home. The unit we're in is considered a step down unit. Most of the babies there get to go home pretty quickly. Every day I see people come in and every day I see some leave. They smile at us as they walk by and I smile back because I'm so happy for them. But at the same time I count the days, weeks, and now months that we've been there and I feel like that will never be me. That will never be us. And there are so many people around me having babies or are pregnant. I am so happy for them, I can't even tell you how happy. But again on the inside I'm so broken because of what happened to us. I'm so glad their babies are healthy because I never want anyone to feel the way I do. I just wish that could be me...

I'm getting ready to head to the hospital, again. My baby girl turned 11 weeks old yesterday. She's getting so big now. And even though I'm there every day, I feel like I am missing it. I'm missing everything.

Slowly But Surely

You know it's time for an update when I have to read my last update just to see what I've missed!

Callista has been doing extremely well after her decompression surgery. Overall she seems like she just feels better. We're still working on swallowing and of course that will lead to working on eating, but I think we're getting there. We were scared that we'd have a set back because she has ANOTHER freaking UTI. But she's handling it like a champ. She's been on antibiotics for a few days now. She's a little cranky but at least is hasn't put us back any further. The biggest news to report is that yesterday Callista actually sucked on her binkie repeatedly... This is the first time she's done it in about 6 weeks. And the best part is that she did it in front of the nurse so there's documented proof that it happened. My little one is famous for doing NOTHING for her therapists and then as soon as they walk out of the room, she does exactly what they wanted her to do.

They informed us about a week ago that they'd give her two weeks to eat on her own and then we'd revisit the G tube idea. We were okay with that since we certainly don't want to spend our whole lives in the NICU waiting on her to eat by mouth. Two weeks seemed like a good timeline. Then today they tried to tell us they were consulting the feeding specialists because her two weeks were up. Of course, I was like what the hell? We were told two weeks of therapy, not two weeks after surgery. So we vetoed that pretty quickly and now she has all of next week to get OT and improve. There's still a huge chance we end up with a G tube but I'm going to do everything I can for her before I agree to it, including giving the poor kid a chance! We feel very much pressured into just getting the tube, which I'm not to thrilled about. And I'm sure they are not too thrilled about the fact that I'm very assertive about my parental rights lol. The longer we spend in there, the less patience I have with them trying to tell me what THEY think.

Since she is handling her secretions well now (little to no suctioning, woo!!!) we've been trying to lay her on her back with her head midline and she wants none of that. Even after explaining to her that she will have a cone head, she still fights every minute of it ;) We've been trying to get tummy time in (hard to do at the hospital) and she seems to be enjoying it MUCH more now than when we tried at home. She's still not strong enough to hold up her heavy head but her neck muscles are getting stronger daily. Sometimes I feel down about the fact that we're not meeting milestones like a "normal" baby, but then I think about it and realize it's not that she won't meet them, it's just that she'll meet them on her own schedule. We've got a great PT and OT while she's hospitalized and I'm so thankful for that.

My work has also struck a deal with me that gets me a few more weeks of leave. I now have to go back on the 30th instead of the 16th which is a huge stress relief for me. I swear I was getting an ulcer just thinking about it. So for now that worry is on the back burner. I hope and pray we've got things figured out before then!!

And to end on an extremely positive note, Callie has really started to blossom personality-wise. She smiles more often and lets out the most adorable giggles, especially when she's sleeping. She's discovered that she LOVES Grandpa K's hat and finds it immensely entertaining to stare at. She has started feeling things and likes the texture of wash cloths. She has discovered that she can flail her arms and legs to deter you if she feels you're doing something to her she does not like (eg: dressing her, changing her diaper, or fixing her blanket).  And she's still got her attitude problem of holding her breath when she gets incredibly angry or hurt (IV team hates that!). That's about the only thing she does that is SO NOT CUTE. Everything else is just amazingly adorable ;)