Almost Great Night

Last night, I honestly believe Wendy would have slept all night if her med port had not popped open and leaked milk all over her. When I woke up to her crying I went to check on her and she was soaked, her clothes, her blankets, everything. That also means that probably most of her medicine came out so she has been refluxing and spitting up something terrible today. I really believe it has helped since we began using the intermittent mode on her pump because it doesn't beep after every feed and i don't have to turn it off and on (which makes beeping noises). Even though today was a bit rough, it all ended well. Wendy is now asleep and I am fixing to read. I really hope she gets the Pepcid good and in her system again tonight because I hate knowing my sweet girl isn't feeling well.

Working Together.

When it comes to taking care of Wendy, it is a two person job. Especially now that she is in the squirming and kicking stage, it is almost impossible to change her colostomy bag alone. And when you do change her bag, you want to make sure it is put on well because the better it is put on, the longer it stays, the happier baby is. Luckily Zed and I have been working really well together when it comes to Wendy's care. We've kind of developed a system and it really works for us. I take Wendy at night and get up to do her feeds, change her, etc. When Zed comes home for breakfast, he takes her while I sleep for an hour or two. I keep her the rest of the day while he's at work and when he gets off he watches her while I make dinner and shower. On the weekends, he watches her pretty much all day, so I can have some time to rest, clean, whatever. Whenever her bag comes off, we change it together. Even if he's at work, he will come home to help. Zed is a very dedicated daddy. Of course, her g tube dressing has to be changed twice daily, which again, we do together in the morning and at night.

Some days it's really frustrating because Zed and I are human and we get ill with each other, but our main concern is getting Wendy tended to. I've been trying to start The Love Dare for the past week, because I thought it might be a good thing to do since Zed and I are under quite a bit of stress and no matter how good a marriage is, it can always use improvement. However, I cannot get past the first day. It says to not say anything negative to your spouse. But no matter what, the frustration seems to take over (especially when we are having to change Wendy's bag and she's screaming and we're trying to get it done) and I always say something negative. It doesn't even have to be something mean, it's just negative. Like "hold her better, I can't get her bag on". It's not necessarily saying something mean, but it's that aggravated tone I say it in. So I'm taking a break from The Love Dare and focusing on better teamwork. That's what it's going to take for us to succeed in caring for Wendy.

Excelling.

I think everyone has something they're great at, a talent, per se. In high school, I was good at a lot of things. I was good at playing the flute. I was a good cheerleader. I was a good student. But I don't feel like I was ever great. When it comes to being a mom, I know I'm great. I see the proof every time I look at my little girl.

That may sound conceited to some people. But in all honesty, it's not. It's just something that I know I do well and I'm super proud of that fact. When Zed and I decided to have kids, I never thought I'd be an amazing mother. I knew I would love and care for my children, but never did I think it would be my true calling. I've found out recently that it is. I'm Wendy's lover and protector. I'm her voice and her reason. But most of all, I'm her mother. That's something that I will always be, no matter how old she gets or how capable she ends up being.

There are only two ways to live; you can live as if nothing is a miracle; you can live as if everything is a miracle. -- Albert Einstein

Reaching Out

I feel like I should take up residence at the Children's Hospital. Wendy has been there twice just last week and we will probably be making the trip again tomorrow. Last Monday, as you know, she had to go have her g tube replaced. Well on Friday, she had an appointment with Urology and we had to go back to Pediatric Surgery to get her button changed again.

The Urology appointment went well. They did an ultrasound to check her kidneys. The hydronephrosis in her left kidney is gone. And the reflux in the right is still a grade I. They changed her antibiotic to Bactrim because she is 3 months old now and they said kids can build up a resistance to Amoxicillin. She will be on the Bactrim until she's at least 12 months old, but in 6 months we follow up with her urologist.

She got a Mic Key button put back in, in place of the Mini. It's not leaking as bad, but is still leaking some. Enough to get her bag wet and make it come off. I think she is going to need a 16, instead of a 14. If she is still leaking tomorrow, I am going to have to take her back to Vanderbilt because I cannot continue to replace colostomy bags 2-3 times a day. It's going to start really irritating her skin where it's actually sticking good.

I joined a website called Chromosome Disorder Outreach where I can try to find other parents of children with disorders similar to Wendy's. I know they said Wendy's is one of a kind, but there may be another closely related one out there. I feel like maybe reaching out and seeing how other parents are dealing with this may be of great value. It can't hurt in any case.

I Wish I Was Superwoman

I'm only 22 and in the past two years I have been through more than many people go through in a lifetime. My marriage has survived a deployment, PTSD, a really rough pregnancy, and a baby with disabilities. Needless to say, I had to grow up quickly, for my family. Most 22 year olds are enjoying their senior year of college, still planning on what they want to do with their life. I stay home and play nurse with Wendy. I'm not complaining because I love my little girl more than life itself and I would do anything it takes to care for her, but on days like today, it proves to be hard.

Wendy's button is leaking. Tomorrow, after we see urology, we'll be going back to pediatric surgery to have another one put in. Her skin around the button is wearing down from the button being wet constantly. When she's not asleep, all she does is scream. I know it hurts. I'm at the point where I just want to cry too because I can't fix it and I can't make her feel better. When I try to hold her, it seems to make it worse. Which I'm sure when she's not laying flat her button is rubbing against the already irritated skin and causing her pain. I just want to make it better. On days like today, I wish I was Superwoman, and had special powers, but I'm not, I'm only human. I'm only a mom.

Prepared? I Don't Think So.

When you plan on becoming pregnant, you don't plan on having a child with a disability. You may plan on the amount of money it will take to buy diapers, formula, and clothes, but you never imagine having to take care of a sick baby. In Wendy's case, for 71 days in the NICU, it cost $543,372.96. Yes, that's over half a million dollars. And that does not include the 5 weeks I spent in the hospital, Wendy's 2 surgeries, or her $4,000 transport- which was less than 5 miles- from Centennial to Vanderbilt. Luckily, TriCare is paying. Many things about the military are terrible, but the insurance is great. My point is, no matter how much you prepare yourself to become a parent, nothing can prepare you physically, finically, or emotionally for an unhealthy child. If more people thought about this possibility, I bet a lot less people would have children. Wendy is my everything. She has been since the day I found out I was pregnant. But that doesn't make this any less hard or stressful. Don't get me wrong, I wouldn't trade Wendy for anything in this world, not even a healthy child, but it's still not easy.

Today when I fed Wendy, her formula was pouring out from around her Mic Key button. After calling pediatric surgery at Vanderbilt, they decided her balloon was probably busted and she needed a new button. We spent the majority of our day in Nashville. She now has a Mini button, instead of a Mic Key. It's smaller and a little flatter. I just hope this one doesn't leak. I think they ripped her stitch out when they changed her button, because she was bleeding some when we bathed her. If she is having any problems still on Friday, I will take her by the surgery department and let the nurse look at her. We have to go to Vanderbilt for her urology appointment anyway.

All in all, today has been hectic. But I can promise you this, at the end of the day, when I rock Wendy to sleep, there is no place I'd rather be. Even though there are bad days, it only takes one look at Wendy for every stress and every sadness to go away. She is perfect to me. And I may not have been prepared, but I have been blessed.

Seven Pound Baby! Woohoo!

Today Wendy had an appointment with her pediatrician. They didn't do anything except weigh her and refill her medications. We also scheduled an appointment for her 4 month shots. It's amazing to think she's almost 3 months old already. What's even more amazing is the fact that she weighs 7lbs 4oz. I told you, she's thriving at home! Last Friday she only weighed 6lbs 12oz. I know she doesn't really weigh 7lbs 4oz because we didn't weigh her without clothes because the doctor's office was freezing, but I would say she is at least 7lbs.

She has been awake almost all day! She woke up about 9 or 10 to start getting ready for the doctor and the only time she has slept since then was in the car. Maybe she will sleep good tonight because we have to take a trip to Nashville tomorrow to go to the NICU graduate clinic. I really hope we both get some good rest tonight because it is exhausting taking a baby anywhere with a feeding pump and monitors. Hopefully tomorrow they will tell us she can go down to 26 calories of formula instead of 28. She's having a bit of a hard time adjusting to all formula- she's spitting up more than before and I feel like she has a lot more gas. Now I wish I had've kept pumping. I guess the most important thing is that Wendy is getting the nutrition she needs and growing.

Busy Week Ahead

Tomorrow Zed starts back work. Wendy also has a doctor appointment. She has one on Wednesday as well. And finally on Thursday and Friday her home health nurse comes. I'm not sure if Zed will be going to her appointment with me tomorrow. I am honestly pretty nervous about venturing out with her alone. It's hard enough carrying a carseat and diaper bag, much less a feeding pump and apnea monitor. I suppose I will get used to it though. As a mom, you learn to do what you have to.

Another reason I hate Zed going back to work is the fact that I will be home with Wendy, by myself, all day. Usually I go to bed when Wendy does (which is usually around 6) and Zed does her feedings until 11 or 12. Now he will be going to sleep early too since he'll have to get up early. Wendy has been awake for a few hours so I'm sure she will be asleep soon. Once Zed gets back from getting his hair cut we will eat dinner- I made chili- and watch a movie. Then it'll be time to do Wendy's afternoon care and put her to bed.