What a week!

We've been pretty busy in this house this week. I don't like weeks like this. Weeks when we have something to do every day. Molly isn't a big fan of them either. It throws off her sleep schedule. She's very routine. We do well with routine.

Our week started off with Early Intervention on Monday. We have added a music therapist to our speech therapy. For those of you who don't know Molly loves music. It's always been our go to to calm her down. When she was in the hospital she used to have a seahorse that we would play to calm her down. And now all of the shows that she likes...OK loves...involve music - Mickey Mouse Clubhouse, Dora, Strawberry Shortcake, Little Einstein. We also play Baby Mozart before she goes to bed every night. So I really think she'll benefit from the music therapy. It's a huge part of communication and supposedly it gets kids motivated to move around. We'll see.

Molly also shocked us on Monday. She has huge feeding issues. This is the most frustrating delay we are working on right now. I'm not frustrated with her, I'm just frustrated because I can't help her or make her understand why she needs to do it. Everytime I feed her I put some food on her tray, puffs, yogurt drops, Cheerios and Monday she decided to pick them up and put them in her mouth. At first I didn't even call Jay because I didn't want her to stop but she just kept going. She makes us so proud every day!

Tuesday - my car a/k/a the money pit, is crapping out. We've put so much money into it and we aren't done yet so Jay did all of his homework and we ended up buying an 06 Equinox. He was doing all of the running around for that plus he had class that night so it made for a really long day for both of us. Not to mention this was the last night for our night nurse. It was very sad for us. She was a part of our family for almost a year. She's a great person and I was really sad to see her go.

Wednesday - Growth & Nutrition. This appointment is so frustrating. We are gone all day and they are never satisfied with Molly, what we're doing and where we are. For example, they weighed her and she is now 22 lbs, 10 oz. That's up almost 1 lb in a week. They didn't believe the scale because she has gained 3 lbs in a month and a half. They wanted to weigh her again but I assured them it was correct. Now she's gaining too much weight (see what I mean). So we are cutting out 2 of her g tube feeds. So now she eats by mouth 3 times a day and gets formula through her g tube 2 times a day. They said from a feeding stand point we are so close to no longer needing the g tube but she needs to work on drinking. She is never thirsty because we give her so much water through her tube not to mention her food has a lot of water in it. So we are going to work on drinking and hopefully we'll consider getting that tube out. I'm not in any hurry to get rid of it. Especially with her upcoming surgeries. It has been our saving grace for a lot of things so I'm OK with keeping it for a bit longer.

Thursday - the dreaded appointment with the general surgeon regarding Molly's intestine surgery. So I called a few weeks ago to make her appointment in March. The only appointment they had before April was tonight. We wanted to speak to him before April because Molly's having surgery April 4th to have her trach site closed. We were considering doing the LADDS at the same time. One less hospital stay, one less intubation, and we would get it out of the way and enjoy the summer. Our biggest thing was to make sure she was in tip top shape and recovered completely going into the next cold & flu season. We had decided that we were definitely going to do the surgery. We had a bunch more questions for the surgeon. We wanted to know how long she would be intubated afterwards, how fast is the recovery, what are the odds of her developing issues afterwards. It comes down to "they don't know". There isn't enough information, research and data on this type of procedure. We don't know how malrotated she is and he won't know until he opens her up. We don't know how long she'll be intubated. He said there is a chance that she will come up extubated. It will depend on how well her heart and lungs hold up during the surgery. If they can get an epideral catheter in to manage her pain, they can extubate in the OR. Obviously that's what we are hoping for but not expecting. She never does what we want so we'd rather be pleansantly surprised. If I never have to see her intubated again I would be very happy. We don't know how her recovery is going to be. Every kid is different and since she's Heterotaxy and we are unsure of her anatomy we really have no idea what we are getting into. He will also remove her appendix while he's in there. So we are expecting to be in there for 10 days. Right now we are planning for the 3rd or 4th week in June. He is booked for April 4th. He spoke to Ravi, the cardiac attending that was basically Molly's cardiologist while she was in the hospital and probably knows her better than anyone. He won't be around much in May and they will both be around in June so June it is. We have a few things planned in June so we are shooting for the 3rd week. This will also allow us to enjoy Easter and more importantly her birthday (which I've been planning for 2 months now). It's a long procedure, 6-8 hours which is one of the reasons we have been dragging our feet but honestly I couldn't be more confident going into this. Medically Molly is in the best shape she's ever been in. She's so healthy, her echos look better and better each time, her lungs are so strong (trust me I hear her scream and I think my neighbors do too), we are working on her abdominal strength and she's getting so big. These are all great things for her to go into a big surgery like this. We have consulted with all of her doctors and they all think this is a good time so we are going to take advantage of this opportunity. She's going to sail through this. Will our worries be over once this surgery is done? No. We will always have to watch her to make sure she doesn't develop an obstruction but we will know we have done all we can and have made the best decision for her. I'm so glad that appointment is behind us and we can "try" to put it out of our minds for a few months. Who am I kidding? It's never out of our minds.

Molly is doing so well. She's getting so big and showing more and more of who she is. I love that kid (just in case you didn't know or couldn't tell)!

As always, thank you for continuing to check in on our love!

Kerry

Growing up too fast!

Yesterday was not only Valentine's Day but it was also Heart Awareness Day so I figured we would celebrate Molly's complicated, yet special heart by going to Build A Bear and building a heart teddy bear. I knew that Molly probably wouldn't have been all that into it but I figured she might be a little more than she was. The lady running the stuffing machine asked if I wanted to stuff the bear while she held Molly. First of all, I'm not letting someone I don't know and that hasn't purelled their hands hold Molly and second of all Molly would've lost her mind if I ever did that. So we just watched as she did it. We put the heart on the right side just like Molly, made the birth certificate and left. She wasn't impressed and hasn't touched the bear since we got it. Hopefully someday she'll appreciate the meaning behind it or not.

Today we had an appointment with the pediatrician. She did not wait to wait 6 months in between visits because usually kids are seen at 18 months and 24 months so we are going in 3 month intervals. It really annoys me because we have such a good handle on Molly if anything was going wrong we would bring her in to be seen. She gets a report from all of Molly's specialists so I really don't see the point but since I have nothing else to do (I'm being so sarcastic) we went. She weighed 21 lbs, 12 oz and is 30.31" long. She's almost as tell as we are. She a little above the 5th percentile for weight, 12th percentile for her head and I don't know where she is for her height. She didn't say, I didn't ask. I know she's small and it doesn't really matter to me where she is on the charts. We discussed her eating which she had nothing to add, we talked about her LADDS procedure which she said that she thinks we should combine with her trach site closure surgery in April and we talked about where she is developmentally. Nothing came out of this appointment except I found out how much she weighed and how long she was. Oh and she did tell me that even though the LADDS procedure is long and a serious surgery that her heart surgeries were so much worse. Thank you, captain obvious. I guess that was her attempt at making me feel better about doing the surgery.

We also found out last night that we are losing our secondary insurance. We have to apply each year for Molly. They pick up anything that our primary insurance doesn't cover. They also pay for her deductible, her formula, all of her meds, ER visits, and our insurance premium. Of course we are freaking out a bit because insurance for her is crucial. We no longer qualify because of our income which doesn't make sense because I only work part time this year. If we want to continue with this insurance we have to pay almost $200/month. We really don't have a choice and we'll figure it out but it just really sucks!!! It's not fair that there are people out there that abuse the system or that are drug addicts and they get approved but people like us that really need it don't qualify. It's just so wrong.

But as I sit here and listen to Molly fling her toys across the room, laugh at her TV show and "talk" to the Mickey Mouse characters when they ask a question none of this matters. We have been through worse and we'll get through this.

On that note I'm going to go hook her up to her last feed of the night so I can put the little darling to bed. She has been giving us a hard time about going to bed and wants to watch TV which we haven't allowed in a very long time. We usually just put her music on and she would go to sleep but that hasn't been happening. I don't know if she's starting the terrible 2s or she's just spoiled. I kinda think it might be a little of the first and a lot of the 2nd!

Thank goodness for Keurig!

In my last post I said that I would have the results of Molly's Early Intervention assessment but I only have her gross motor and fine motor. For fine motor she is at a 7 month old level and for gross motor she's at an 8 month old level. Do I think it's accurate? No. She only scored 7 months on the fine motor because she wouldn't pick up the crayon and color on a sheet of paper and she if she's done with a toy she doesn't drop it down in front of her. She flings it to the side. Apparently that's something I need to work on with her. Let me add it to the endless list of things. For gross motor she has improved. She went from 4 months to 8 months. Do I think that is accurate? No. It's hard to evaluate someone that just wanted to be held and lay on the floor in front of me. But it is what it is and we'll just work on what I know she needs to work on. She is doing SO much better with standing. She's pretty stable now. She doesn't take any steps yet unless she's in her walker. She stands up in her walker and she'll take a couple of steps forward. Most of the time she just goes backwards but that's OK. Any step in the right direction is a reason to celebrate in this house. I was supposed to get the results of her communication portion but I had to cancel early intervention today. I'll explain in a minute.

Molly went for her last dose of Synagis. They have to weigh her before they give it to her because the dosage depends on her weight. The last time she was weighed was about a month & a half ago at Growth and Nutrition and she was 19 lbs, 12 oz. Now she's 21 lbs 14 oz. I never show excitement but if I did I would've jumped up and down. This is her heighest weight! Her pediatrician doesn't show excitement either and it really makes me mad but I'm over it. We have to go back to the pediatrician on Wednesday. Usually kids go back at 24 months but she wanted to see her before then and check in. I don't want to check in. She has very little say in Molly's care. She has a specialist for almost every part of her body. But I'll go, she'll charge the insurance company, I'll leave there pissed because she doesn't say how amazing Molly looks, how great she's doing, etc, then we'll be on our way.

And with all of the good comes the not so good. Jay started making Molly's babyfood. It's cheaper, better for her and he has nothing else to do ;)We had given her bananas and they didn't agree with her so we stopped. Then we started once a day. It's only bananas. Well, apparently she can't do once a day either. Jay fed her apples and bananas Saturday night then I fed them to her Sunday morning. Well, at about 7pm last night I noticed she only had one poop and it was solid which is never good for Molly. She needs to go a few times a day or we're going to have a long night and we did. We put her to bed at 8pm and she went right to sleep. She woke up fussing at 11 so I went up. Usually that means that she couldn't find her blankie and just needs to get tucked back in. Not this time. She wanted to be held. Every time I tried to put her back down she would flip out. I was trying to keep her quiet because I didn't want her to wake Jay since he had to get up at 5:30 for work. So I brought her down to the living room, turned Strawberry Shortcake on and she was like the happiest person on the planet. We watched one episode and went back upstairs. Well, it started all over again. I put Baby Einstein on and she didn't want that. Then I put Care Bears on and she was OK. Well, once that was over (at 4am) she got mad again and wanted to be held. I put Baby Einstein back on and she finally fell asleep at 5am only to wake up at 8am and was NOT happy. I couldn't calm her down so I ended up giving her a suppository. She carried on for another 45 minutes before she pooped. That was what she needed and what she probably needed all night. Now it's almost 1pm and she's still awake. I don't know how because I don't know how I'm awake! Thank goodness we have a Keurig. I was going to go to Dunkin Donuts but #1 I'm so tired, #2 I didn't want to take her out with her belly messed up and #3 I didn't want her to fall asleep in the car and wake up 10 minutes later wide awake and ready to go. Such is the life of being Molly's parents!!!

My favorite Valentine's Day gift ever!!

CHD Awareness Week

Today kicks off CHD Awareness Week and we couldn't be more proud of the little girl that made us aware of what this week was all about. One out of every 100 babies is born with some form of a heart defect. That's about 40,000 babies each year. Not all of those families are as lucky to have the outcome that we have had and we are thankful every day. We are aware that things could have gone a different way for us and at times almost did but for some reason we were lucky enough to be given a baby that was never willing to give up the fight. To this day she still fights me on just about everything I want her to do. I know that that fight is what got her through the toughest time of her life. Everyone says that she looks like me or acts like Jay or is stubborn like the both of us (yes, that's right we're both stubborn). But if it's that stubborn streak that is going to get her through hospital stays, surgeries, etc. then I am happy that she is like us and we were able to pass that along to her. At times I wish she wasn't as stubborn when it comes to things like eating, standing, changing her diaper, getting dressed, doing her hair. The list goes on and on. Don't let the pictures fool you. She's not always that sweet and innocent. I just choose not to grab the camera when she's in the middle of a fit or pushing my hand away as I'm trying to feed her and she doesn't want to eat anymore. Or when Early Intervention is here and she doesn't want to do what they want her to do and she throws herself on the floor. I usually just laugh to myself because I know that behavior is why she gave so many nurses and doctors a run for their money.

Every 6 months Early Intervention does an evaluation to see where she is developmentally. Molly sleeps like a teenager. Some days I think if I'd let her sleep until 10 she would and if I have to wake her up she's a witch. The assessment was at 9am and of course I had to wake her up at 8:15, feed her and dress her before they got here. That meant no time for TV except for when she was getting dressed. Molly not having her TV is like me not having coffee. So needless to say she wasn't cooperative at all. She bangs 2 blocks together like it's her job. Do you think she'd pick up the block. NOPE! They wanted her to get her toy from under her blankie. Do you think she'd pick up her blankie. NOPE! They wanted her to roll over which is her form of transportation. Do you think she'd roll over? NOPE! I say her name about 600 times a day. When I called her name do you think she'd look at me? NOPE! I'm telling you...STUBBORN!!!!!!!!!!!! She just wanted me to pick her up which is not like her. The only time she wants me to pick her up at home is when she's stressed. I guess Lulu wanted to help her out because they had put some of her puffs onto a board for her to pick up and see how her fine motor skills are. She picked one up and Lulu walked by and ate the other 3.

So I don't know where she scored and to be honest I really don't care. They are only scoring her off of what they see right then. They aren't with her 24 hours a day like I am. They don't see her jabbering, rolling all around, standing, playing in her walker or bouncy seat. I told them that she's spiteful and won't do what they want when they want. It was pretty much a waste of 2 hours out of my day. It's just a little discouraging when I think we are making all of this progress and they are going to come in and take the wind out of our sails. We are going to get the results of the assessment tomorrow. I'm not going to lose any sleep over it and I can promise you that Molly won't either. Once I get the results I will update her blog. Until then...