Saturday, October 27, 2012

Copy Cat and Crying Mommy!

My sweet one year old Wendy finally tried to say a word today! She loves patty cake and claps when you sing it! Well I was changing her colostomy bag today and singing patty cake to keep her occupied and I noticed she was moving her mouth, trying out different sounds. She finally got out "pa". I kept saying "patty cake" and she kept saying "pa". Tears started streaming down my face. Tears of happiness. Wendy has never tried to emulate our sounds before and this is such a HUGE ACCOMPLISHMENT for her! I was so incredibly proud. I even called my mom and put her on speaker so she could hear the soft sound of "pa" coming from Wendy. With any baby, a mother feels a sense of pride when they learn something new. But especially with a special needs child, the feeling of joy was overwhelming.

Monday, October 15, 2012

Worst Day Ever :/

Please excuse any misspellings or weird autocorrects. I've been awake for almost 24 hours. That plus stress and there's no telling what kind of mistakes I could make.  Today was surgery day for Wendy. Mommy got up at 12:00 to stop her formula an switch her to a pedialtye feed. At 2:00am I got up to start getting ready to leave, we had to leave by 3:30. After getting to the children's hospital at Egelston, we had to figure out how to park. This parking garage is weird (almost as bad as 7 south at Vanderbilt university hospital, except you have to pay here!!). We finally got to the day surgery department and saw the waiting room was tiny (keep in mind we're used to the surgery center at Monroe Carell Children's hospital that was donated by Rascal Flatts and is super nice, and BIG!) and it took a bit for us to be called back, even though we arrived at 6:30 and were supposed to be Dr. Wulkan's first surgery of the day. Zed and I sat in the pre op room trying to keep Wendy entertained for an hour and a half before our nurse finally came in. The room had a big stretcher in there, so there was no crib or anywhere to lay Wendy because she rolls so much. We just took turns passing her off. After the nurse came in, Zed went to the waiting room with our bags and my mom came back to help. Soon after that Dr. Wulkan came in to tell me that the schedule was messed up and she wasn't going back for surgery until 11:00. So I had an irritable baby who had been awake for hours that was hungry. The surgery went smoothly and we were taken to a room to wait for Wendy. She came in about 2:30 and Zed held her for a brit before he left to go back home. My mom ended up staying with me because Wendy had been crying and kicking ever since she came to the room. The nurse gave her pain meds and nothing helped. If we laid her down, she would cry so much her heart rate would shoot up and her pulse ox would drop. She also hates her IV in her hand. About 8:30 they came in to tell me to she was running a fever of 102 and needed Tylenol. After I told them her feet and hands were swollen they said they'd bring in a resident to see her. It's not 11:00 and we haven't seen a doctor. And the nurse came back in to say the tech that took temps mixed up patients and Wendy wasn't really running a fever. The only good thing right now is that Wendy fell asleep in my arms about 9:00. I got her laid in the crib at 10:30. I knew she would sleep deeper if she wasn't being held. My mom is asleep. She went to sleep right after Wendy did. This mana bear is watching her baby like a hawk. I'll probably wake up mom in about an hour so I can get an hour or two of rest. Until then in guarding the door because our night nurse likes to walk in and talk at the top of her voice, like my kids not trying to sleep. If she wakes Wendy up, I'm making her sit in here and rock her!

Sunday, October 14, 2012

The Day Before

How do you prepare for your 12 month old baby to have surgery? How do you prepare yourself to walk out of the pre-op room, leaving your baby in the hands of strangers? How do you continue to tell yourself that everything will be fine?

I guess the reality is, you can't.

Wendy was taking a nap earlier and I woke her up just so I could hold her because I realized I may not be able to do that tomorrow. The sad reality of our situation is, no matter how much time is between now and the surgery, I can't truly prepare myself. Yes, my purple leopard print luggage is all packed. Yes, the alarms on my phone will go off at 2:00am so we can leave at 3:00. But I'm still not ready to do this. Problem is, I don't have much of a choice.

Friday, October 12, 2012

Surgery Number 3

This will be Wendy's third surgery in her short 12 month long life. It doesn't get any easier. In fact, I think my heart is aching more for her now than it was for her surgeries at 3 days old and 6 weeks old. I am much more attached to my baby girl now and since we have had her home for so long it is going to be hard to take her back to a hospital.

After Zed talked to Dr. Wulkan yesterday, her new surgeon, we decided to go ahead with the surgery as originally planned. Wendy will not have a team of surgeons now, nor the MRI in the middle of surgery. We would have liked to have the more extensive surgery however, they have been trying for 6 months to coordinate schedules and it was just not happening. We, including the surgeon, decided it would be better to go ahead as first planned because the older Wendy gets the harder it's going to be for her. So we are now scheduled for Monday at Egelston.

 I'm going to make the best of this weekend! We are going to do some photos in her Halloween costume and carve some pumpkins! But come Monday, please keep sweet in your thoughts and prayers. Hoping for a quick recovery so we can be back home soon.

PS- thanks to everyone who came to Wendy's party or sent a gift! We appreciate it so much. She had a wonderful first birthday. 

Tuesday, October 2, 2012

Murphy’s Law

If anything can go wrong, it will.

That definitely applies to this past week. Not only have I been extremely busy, but it seems every bad thing that could possibly happen, has happened.

It started with a phone call last week saying they were rescheduling Wendy’s surgery to November 14. That in itself wouldn’t be such a big deal, but the fact that I’d already had the dog scheduled to be neutered, cancelled the “walking for Wendy” group at the March of Dimes walk on October 13, and since the surgery has already been put off from it’s original date of June 28, made it very frustrating. Then we went to Wendy’s cousin’s birthday party. And of course, as soon as we got there, her bag had to come off, which again, isn’t a huge deal, but that on top of the frustrating news, plus having to change her in the back of my mom’s Tahoe kind of put me in a sour mood. Oh and the day before that, all of our kitchen lights blew (they’re 6 big floodlights). So we bought more and Zed put 2 of them in, flipped the switch, and nothing. So now we have no kitchen lights and don’t know why. Next came the pageant. The first hiccup in that plan was when the director’s found out the original location was double booked so it moved the location from Commerce to Gainesville, which added another 45 minutes to our drive. Then came crowing, and it’s always disappointing when your child doesn’t win. I don’t care what anyone says, you never want to see your child in second place, especially when your child is already “differently abled” which makes my next point; maybe pageants aren’t for us. Wendy has also been sick, just a runny nose then a cough that I noticed this morning. It was really “wet” sounding, so I called the pediatrician and made and appointment. Dr. Martin says the mucous is probably running down her throat/airway since her nose is so small, so that’s where the congested sounding cough is coming from, however, her lungs sound great and there is no infection there. Dr. Martin says it’s because I’ve been keeping saline in her and sucking her out regularly that has kept her from getting worse. I’m glad she has confidence in me and my parenting skills because sometimes I feel I’m not good enough or doing enough for Wendy. Since I had to take Wendy today, I had to change my rheumatologist appointment to tomorrow. Finally, our air is not working. It stopped yesterday. The big fan on the top of the unit isn’t moving. The heating and air guy tried to cool the unit down with water and did a few other things, but it still wouldn’t start. He said the only thing we could do now is let it sit overnight and see if it starts on it’s on and if it doesn’t, we’ll need a new unit. All of this the week before Wendy’s birthday.

Murphy’s Law.