Sound Effects

Lily has discovered a new talent. She makes sounds with her voice while I move my hand over her mouth! She loves it and thinks she is quite funny. Enjoy!

Here's Lily!

For anyone that is wondering how Lily has changed over the past month or two here is a few pics of her so you can check her out for yourself.

Thanks!

Thank you everyone for your words of encouragement. I really need some type of support system. Most of the time this journey feels very very lonely. I have the support of my church and many of the people there have been very kind and helpful to us but I still feel like they can't relate. Unless you have been through this journey you do not understand fully. I know you all can relate to this. I also want to add that even though I am feeling overwhelmed and stressed out about things lately that I really do love Liliana. It just bums me out when I think of how much she has been through and how much she has to struggle. It doesn't seem fair to her. I still question," Why does God allow these things to happen?"

My post yesterday was very harsh sounding and I apologize but I just needed to vent. I also was extremely tired yesterday since Gwynny woke me up at the crack of dawn. She has a very rude way of waking me lately. It goes something like this, "Ahhhhhhhhhh! Ahhhhhhhh! Ahhhhhhhh!" Just constant screaming! It is soooo annoying. I am trying to teach her to be a little more considerate of others especially when you want to get their attention. She is having a rough time lately as well. I know this past year hasn't been easy for her either. She was shifted all over the place from Grandma and Grandpa's to friends houses back to us while Lily was in the hospital and that is hard for a 3 year old. I feel like I have been neglecting her needs in a lot of ways. Ironically, she has problems with eating too much and it has become a major issue in my house. I calculated how much she ate the other day and she was up near 1500 calories for the day. I looked online to see how much a child that isn't very active and age 4 should be eating and it said 1200 calories. Whoa! So this concerns me. I have been trying to cut back on what she gets and give her more healthy alternatives. I also may take her into the doctor because I am concerned there may be some underlying problem such as inactive thyroid or juvenile diabetes. Bill and I were saying that we have two kids with eating problems both on totally different ends of the spectrum. One eats too much and the other doesn't eat enough. I also in my spare time (what's that?) have been looking at preschools for her to go to starting this fall. I actually think I found one and I think I am going to send her 5 days a week instead of 3 since she is very head strong and does not like to sit down with Bill or I and work on different skills. I hope this isn't too much for her. I think it will be good for her to become more independent and in the mornings I can focus on Lily's issues and if she has any doctor's appointments I can try to do them in the morning. If anyone has any feedback about preschools or how much you should send your kids I would love to hear what you think.

Well, as usual I have to get moving so I can be ready to take Lily to outpatient OT this morning then hopefully this afternoon we can go to the pool for awhile since it has been very hot here this week. Lily did get the ok to go in the pool yesterday when we were at her follow-up appointment with her GI doc. Also she is scheduled to get her tube changed to a button on August 11th. So we have a few more weeks of dealing with this crumby tube but I know it will go fast. Oh, and she is now graduated to Pedia Sure. Hopefully, she will tolerate the transition from formula to that. I am trying her first feed right now with it. More to blog about later...

It's a Love/Hate Relationship

Ok, so I haven't been actively involved in the blogging world. Sigh. I apologize. I really have been feeling pretty overwhelmed with life lately. To be completely honest I haven't felt like doing anything related to therapy, doctor's appointments, and well having to deal with a child with Ds. I'm sick of it. I'm having a hard time keeping a positive attitude about things lately. It's like I feel if I don't think about it then it will go away. I know I have not completely come to grips with the whole Ds thing. I know I always sound cheery and positive on here most of the time, but honestly things have not gone at all as I thought they would. Here we are Lily is now 1 year old and it's like every time I turn around we find out some more bad news about her, as if having a congenital heart defect wasn't enough. I keep asking God, why me? Why am I the one that you chose to take on this HUGE endeavor? Then I say, "It's not fair!" All I wanted was to have one more child, one more normal child. This stinks! Sob, Sob. Part of me thinks maybe I should have never had kids. I was 39 when I had Gwyneth and 41 almost 42 when I had Liliana. Maybe I had no business having kids that late in life, knowing full and well the higher risks involved in having a baby with some kind of problems the older you are. Well, too late to turn the clock back now. What's done is done and as they say, "You made your bed so now you have to lay in it!"

I kind of look at this whole thing as a Love/Hate relationship. I love the fact that Liliana is so sweet and adorable and very good-natured, period. Now for the Hate part, I hate the fact that she is sooo floppy still that she can't even hold her head up. I hate the fact that she can't sit up so she is stuck sitting in a bouncy seat or laying on the floor all day. I absolutely despise the fact that we were told she would start drinking fantastically from the bottle after she had her heart surgery. Lie! No more drinking from a bottle for this girl. I hate the fact that I have to do mouth exercises with her every time before I can feed her baby food and then she can barely take 2 teaspoons on any given time. I have been told this is GREAT! Snicker. Great is if she were eating the whole entire jar! Let's see what else! Oh! I hate the fact that she has to be feed through a tube in her stomach that was obviously designed by a complete idiot! I hate the fact that she is near-sighted and will require glasses down the road, oh and did I mention she has nystagmus, wooohooo! What else? Oh the latest that I did not blog about that I found out about 2 weeks ago. She went in on June 9th for an ABR hearing test in which she had to be sedated (that's a whole other story), and the result of that...she has mild hearing loss in her right ear! Wow! all this great news is just killing me! I can't stand anymore bad news! I wish I could accept the fact that this is, what it is, and I will always have to go to lots of doctor's appointments and I will always be the one that has to look out for her. She will always need my support and help. That's huge! I don't know if I am capable of taking on all this responsibility. I feel like I have been trying to keep myself busy to keep from thinking about it and in the same respect I am exhausted. The past few weeks we had a garage sale at my in-laws and I am having another one here this weekend. Last week, we got up early everyday and participated in VBS at church. In between all of that I have been doing Weight Watchers, going to the pool, working out, going to therapy appointments with Lily, and just trying to keep up with things around the house. I can't wait for vacation! We leave on July 2nd and it can't get here fast enough! I wish I could just get past all these feelings I am having and feel ok about things but I can't. My whole world has been turned upside down since Liliana came along. I have always been a career-oriented person not a stay-at-home mom. I have always been part of the bringing home a paycheck and now I have nothing. I have to worry constantly about how we are going to make ends meet and if we will have enough money to put food on the table. It's a lot of pressure. I literally sit here daily and try to think of ways that I can bring money into this house so that we will not have to worry anymore. It makes me sick to my stomach thinking about it! It's soo difficult to completely put into words all the emotions I have been feeling lately. I think this is part of the reason I haven't felt like blogging. If you don't write about it you don't have to think about it. Well, I guess I needed to get some things off my chest even though it still feels like I am carrying around this HUGE weight that needs to be lifted. God help me to find something good in all of this and bring me back to a better place in my life. I need your help and guidance right now. Thank you for listening.

Too Busy For Blogging

Hi Everyone! I haven't blogged lately, well, because I haven't really felt like blogging. I have been so busy with therapy appointments for Liliana, garage saling, going to the pool, etc. etc. that I haven't had much time to blog and when I do I am too tired to care. I know that sounds pathetic but it's true. I usually get more satisfaction out of reading about everyone else's happenings so most of the time I just come on and read everyone else's blogs. So, if you don't hear from me much I apologize but I'm just not into it right now. Hopefully, I will get out of my funk and get blogging again soon.

G-tube: Pros and Cons

Pros

1. No more checking placement of the tube to make sure it's in the right spot. Yeah!
2. No more trying to put in a new tube down the nose, because it doesn't go in her nose and she can't pull it out. Hip Hip Hoorah!
3. No more taping up her little cheeks and making them all sore! Awesome!

Cons

1. She doesn't like to be on her stomach right now. Bummer!
2. The tube they placed has no clamp so you have to clamp it off with your fingers and pray for the best! With that I mean pray that nothing squirts out at you. Get the picture, not a pretty one.
3. The plugs on the ends of the ports do not always stay closed especially when you tuck it up in her shirt or if she is very active. Result: More stomach contents all over her clothes! NASTY!
4. No bathing for 3 weeks, only sponging!
5. No swimming pools for 3 weeks, oh and when you finally do make sure that you have those plugs covered really good with tape that's waterproof so they don't open up. I think you can figure out the result if that happens.
6. Last, depending on your GI doctor depends on when you get the tube removed and graduate to the mickey button. Our GI doc says not for 12 weeks! Let's see...she had the surgery on June 1, 2009...you do the math. That puts us at September, the whole summer will be gone. It's not fair!

Am I venting, YES! Am I a little upset, YES! Is it really that bad, probably not, and I will have to learn to live with it. I'm sure it will get easier as time goes on. Done venting for now. Have a good day!

G-tube! It's time!

Today we arrived at the Cleveland Clinic's P20 Family Surgical Center at around 9:45am. Lily had nothing in her belly except Pedialite since 4am. She was calm and acting her normal self. After checking in and waiting for almost an hour I received a phone call on my cell. The woman asked me if we were coming to Liliana's MRI appointment. I just said, "You've got to be kidding me?" I called the clinic in the morning to get the time of surgery and they told me that she was to come to P20 for surgery first. She was not having the MRI first. Well, that was a huge mistake. She was supposed to to have the MRI and then the G-tube surgery. Obviously the right hand did not know what the left hand was doing. Well, once that got all straightened around we were finally on the road to getting the MRI done. We were escorted into a room where we had to answer all those millions of questions and then I went back with Lily and stood by her side while they put the mask on her face and began the sedation process. Once she was drifting off into "LaLa Land" I left and Bill and I began the waiting process. We did the usual, went potty, played on the computer, read, ate some lunch, played on the computer some more and then our pager went off. Well, the message said, "Surgery was in progress". It was approximately 1:15pm when it went off. Well, we knew that the MRI had to be done and now it was just a waiting game till the tube surgery was complete. At approximately 2pm they paged us again and said to report to the M20 desk. Dr. Mohr our Gastro doc was their and she told us everything went very smoothly. She lead us back to Lily and of course she was crying. She was definitely in some pain. They gave her some fentynal (sp?) to help with this and then they watched her vitals and got her cleaned up. Let me add that throughout the day we saw many old friends. It was almost surreal. It made me think back to the heart surgeries and how we practically lived here for 3 months. The sites the sounds and everything just bring me back to that time. Well, thank goodness we are only spending one night here.

So here we are once again back in the poooooooodddddddd life again! Makes me want to sing. Just kiddin'. Well, when we first arrived in M40 bed 8 (many of you can relate to this section of the hospital LOL!) Liliana was very fussy! We couldn't tell if she was in pain or if she was hungry or a combination of both. They will not allow her to eat for 6 hours so that is just plain rough for a baby. They gave her at least 5 doses of fentynal (sp?) before she even came up here to the floor. She just seems to blow right through pain medications, always has. They tell me it's a Ds thing. They then gave her some tylenol (yeah, right?), didn't even phase her, then they finally ordered more phentynol (give me a break here I'm trying) and gave her another dose around 6:00pm. She finally fell asleep in my arms and woke up about 7pm. Whew! Now maybe we could try to get a bite to eat. Nope! Daddy had to bring it up to the pod. Didn't want to risk putting her down and then her waking up.

So, we just talked to the 3rd shift nurse and we are anxiously awaiting her return with Lily's first feeding by G-tube! Granted it will not be her high calorie Nutramigen milkshakes she gets it will only be Pedialyte to start but at least it's something. They are also going to start her continuous night feeds at 10pm. Can't wait hopefully she will go to sleep. This day can not end fast enough for me. Bill is planning on going home at some point, while I am going to tough it out here on this very uncomfortable couch for the night. Hope I can get at least a little sleep! More updates soon...