We arrived home on Saturday evening after a long journey. Our ride home ended up being longer then expected because Ali seems to have a very low tolerance for her carseat and we had to stop every 20 minutes or so because Ali was having trouble breathing. About 10 minutes from home she decided to pull out her feeding tube too which made Mommy very happy!

We arrived home, I put the feeding tube back in, Jason picked up Madi and we all went to bed. Since then we’ve done nothing but run around the house like crazy people.  It is absolutely nuts.

Ali has had some difficulty adjusting to the formula that we were sent home with. It’s a powdered version of the hospital formula but she found the liquid hospital version easier to tolerate. The liquid version isn’t available for use at home so we’re working with the concentration and volume to try to find something that works for her. As a result of the formula issue, Ali has lost some weight and she throws up all the time.

We’ve started working with the genetics nurse to gather information about our family histories. Ali will be having a full genetic work up. Specifically they are looking for “Noonan Disease” but they’ll also be ruling out any other conditions.

We have started the process of teaching Ali to feed from a bottle. I don’t have any great successes to report but I can say that Ali is eager to try to drink and she seems to really enjoy the feeling of the bottle in her mouth, she just has no idea how to swallow her milk!

Ali has her first group of appointments scheduled in the city. We will be going on February 18th and 19th to meet with the feeding team (nutrition, feeding therapist, nurse), her new pediatrician, her geneticist and her cardiologist. She will also be having an echocardiogram, and ECG and a Holter Monitor test.

Thanks to everyone for all your support. Reading your kind and encouraging messages has meant so much to Jason and I. We will update again when we have time.

WE’RE GOING HOME!!

And you know what? I don’t care about the lack of services or the feeding tube or all the doctors appointments and all the work I have ahead of me. Ali and I are going to be with Jason and Madi. Ali is going to be able to live the life a little baby should live. Did you know that Ali has never been outside except in an incubator? Tommorow she’ll get to go outside for the first time! We’ve been here for 6 weeks and I feel this huge sense of relief that tommorow it will be over. We can finally move on from all of this. Ali has been through so much since she was born. She’s a real little fighter and I know that she’s going to keep working hard to get better. It really sucks that we’re not leaving the hospital with a healthy baby and it’s horrible that a lot of this was totally unnecessary but we have to get on with life, it’s time!

I took another attempt at inserting Ali’s feeding tube today. It went much better then yesterday so I feel good about that. Ali was pretty ticked off but she’ll have get over it, either that or she can stop gagging the feeding tube out!

Ali had an echo (heart u/s) done this week and we got the results today. Ali has a whole bunch of develpmental abnormalities of her heart. She has SVT as we all know but she also has two other abnormalities. The right side of her heart is hypertrophic (or enlarged) with thickened walls and she has a stricture (narrrow spot) in one of the main arteries of her heart. They are all fairly minor abnormalities and are not anything that should cause immediate concern but they do need to be watched and followed closely.

Those developmental abnormalities of her heart as well as some other “symptoms” that Ali is exhibiting have led her team of doctors to believe that there is a chance that she may have a genetic disorder, specifically “Noonan” syndrome. Ali will be going for genetic counselling and testing next month.

So for now we go home. We will continue to do everything at home that we’ve been doing at the hospital and hopefully Ali will continue to improve. We’ll be seen by all the specialties every second week and will have telephone support the rest of the time. We will be responsible for tracking Ali’s growth, monitoring her heart conditions and getting Ali fed and hopefully soon teaching her to bottle feed.

This is going to be a big job but we love Ali and there isn’t anything we wouldn’t do to help her get better so here we go!  Look out world, here comes Ali!

I got another crack at putting in the feeding tube today. It was pretty easy the first time but this time I couldn’t get that pesky thing in despite a few attempts and now I’m angry at myself. It wasn’t exactly great for my confidence in this situation.  Yes, I realize that I may have to do it alone in my living room next time and that this could present a problem so there’s no need for anyone to point that out (that would really not be helpful!). I got it in the first time and I just need to have confidence that I will get that darn thing in next time. I know what to do, I just couldn’t do it today but the training is over so now I have no choice. I have to do it next time and I’m rather stressed about it.

I had a long talk with Ali’s nutritionist today. She is pretty worried about the lack of growth. We need to get that baby to grow so that she’s not really far behind her peers. She is now a little heavier then her birthweight but her length and head circumference are still the unchanged. It’s all a question of calories.

I also had a talk with the pediatrician about going home and working on her growth, feeding tolerance and bottling as an outpatient and with tonnes of telephone support from the feeding team at the hospital. She seems 100% behind us if that’s the route we want to take. It’s a huge commitment and will take a lot of sacrifices but it may be worth it to get home. Ali’s doctor feels that she may do better at home, there is always the risk that we may end up right back here at the hospital though. I really think it’s worth a try. So there’s a chance that we may be released on the weekend. Taking a sick baby home is not really my ideal situation but I am confident that Jason and I can handle this and I really feel that Ali is ready. I don’t believe that she needs to be an inpatient anymore and since I do most of the care anyways during the day I might as well do it at home! I just feel like for Ali’s well being and for the well being of my family, it’s time to make some changes and going home is the best option for us right now.