Such A Rough Day. A Therepeutic Post. Orignially Posted July 9, 2010

I’m sitting here on my bed with Ali watching her sleep and thinking about how beautiful and perfect she is. She’s got such beautiful eyes, a little button nose, fabulous kissable cheeks, soft lips, sweet chubby arms and thighs and as she sleeps she looks so normal . She just looks so perfect and she is except for one nucleotide out of millions in her DNA that is wrong. That one nucleotide has stolen a lot from Ali.

Ali and I have been participating in a program at the health unit for moms and babies. It’s being run by our regular OT and she asked us to participate because she thought it would be good for Ali. So twice a week I go and sit in a room full of “typical” babies and I watch them and I watch what they do and I have no choice but to realize how different Ali really is. I sit there and wonder if the people around me can see how hard this is for me, I wonder if they can see how hard I struggle to be there and if they can see how scared I am that my baby will never reach the milestones that theirs have already reached at the age of 10 or 12 weeks. I look at the older babies who can sit and who are learning to crawl and I know that at this time next year they’ll be running around and Ali will probably still be learning to sit. Then when it’s over I get into my car and I cry all the way home.

Once we get home and it’s just Ali and Madi and I then I can convince myself that everything’s okay. I can go back to appreciating the amazing progress that Ali has made and I can concentrate on the fact that she has done so well with what she’s been given. You see I celebrate every smile, every giggle, every coo, every time she puts a toy in her mouth because these are not things that she simply does. These are major accomplishments for her. I beam from ear to ear when she holds her legs up in the air or when she manages to hold her head up on her own because although most babies simply do this, mine doesn’t. These small milestones are the result of hours of work for her. On Tuesday she rolled from her back to her front while lying on the floor and although she may not do it again for weeks I feel a huge amount of relief that she did that for me. It’s like she gave me a gift. It’s not the first gift she’s given me though, the first smile, the first giggle, the first coo. All amazing gifts. I call them gifts because there’s no guarantees, she has a life threatening syndrome and we have to deal with the fact that someday she could be gone.

So as you have probably gathered from this post, I’m having a rough day. I’m tired of this and I’m angry and I’m worried about Ali’s future. I would do anything to change this or to have a crystal ball to tell me that I don’t have to worry and the she’ll be fine. I thought this would get easier with time but it doesn’t, it just kind of wears you down and some nights I wonder how I’m going to get myself out of bed in the morning. But I always manage because Madi and Ali need me and like I said before, there are no guarantees so I am going to celebrate Ali every single day. She’s a fighter and she’s determined and I know that she is going to be the best little person that she can be. That is why I’m going to take her back to that program next week and the week after and the week after.

I couldn’t love her more even if that nucleotide was right but life sure would be easier.

Our Amazing Baby. Originally Posted July 2, 2010

Today I was thinking about a day not so long ago when my mom, who is an amazing support, attempted in my presence to ask our GI specialist  what the worst case scenario was for Ali in terms of feeding. I think she was attempting to find out if we needed to be prepared for a G-tube later down the line. I, in my infinite wisdom basically told the specialist that I didn’t want to hear it. I didn’t want any part of a G-tube for Ali and in my opinion it wasn’t going to happen and I didn’t care what he thought.

So much has happened since then. Ali has struggled so much and although there have been many, many good times, I think she’s seen more then her share of problems. I guess that’s what makes me feel so much relief about this G-tube now that she has it. This is something that I didn’t want. We fought like hell to avoid it and in the end when we decided to ask for the G-tube referal I felt defeated. I shed tears over this right up to the minute she went into surgery and to be honest I felt like we failed her.   But now, here I sit next to this beautiful child and I feel more hope then I’ve felt in a long time. This is a new start for Ali, the change in her is already huge. So now I don’t feel like we failed her anymore and I think she’s been trying to tell us that we made the rigth descision too because she’s been laughing away. It’s like she’s saying, “Watch me and see what I can do!”.  She’s amazing.

Home Again. Originally Posted July 1, 2010

We arrived home late yesterday afternoon after an uneventful journey from the city. Ali is still doing well. She seems to be in a bit more pain today then previously. We’re wondering if this is because of the car ride home yesterday. The G-tube is not exactly well placed for car seat convenience!

Since having her G-tube inserted Ali is way less mucousy (the mucous that kid had was ridiculous) and she gags a lot less. She still spits up a good mucous ball every now and then but it’s way less dramatic then before and she only turns red instead of purple! We’re really hopeful that as time goes on the mucous will become even less of an issue.

For us, the G-tube is intimidating. If the NG tube fell out we just had to stick it back in, if the G-tube comes we need to get Ali to the hospital for surgery! It is very big and so we have it taped down all over the place and pinned to her clothing in an effort to make sure it’s as secure as possible. Also if the cap opens then we end up with Ali’s tummy contents all over the floor. Note to self, keep cap closed!!! This is a temporary tube and the next step (in 3 months) is going to make our lives so much easier!  We just have to get by until then!

Thanks for reading!

Ali’s G-tube. Originally Posted June 29, 2010

Jason did a fabulous job of keeping everyone updated last night while I was at the hospital with Ali. Although we were kind of hoping that we’d be discharged today it appears that I’ll be sleeping in a chair again tonight since Ali hasn’t been discharged. She’s being kept on an observation ward for post surgical patients because there aren’t beds anywhere else and this ward doesn’t have beds for parents, just big “comfy chairs” which are not so comfy overnight!!!

Everything is going well. The feeding is improving and we have been able to control her pain with Tylenol today which is great because she pulled out her IV this morning. If she needed morphine they’d have to put it back in. She’s been smiling and kicking her feet a bit too, it’s so nice to see her feeling more comfortable.

So where do we go from here? We go home with a temporary G-tube in place. It’s rather large as Jason mentioned in his update. We need to be extremely careful with it for the first two weeks and then until it’s been in place for three months we’ll have to take some precautions. The key is not to pull it out or to let her pull it out because apparently in the first three months that would be an emergency. We also have to watch for infections and granulation tissue and make sure that it’s healing in place. In three months Ali will be admitted to the hospital for a second procedure. She’ll be getting anesthetic again and the temporary G-tube will be removed and a more permanent “flat” G-tube that looks like a beach ball plug will be inserted. Then we’re done!