What a Difference a Year Makes!

This time last year, we had NO idea what was coming! The day after Memorial Day I went to my Doctors appointment and was admitted to the hospital on bed rest- the reason I started this blog in the first place! In the last year we definitely had some life changing experiences. I was thinking about one experience and (now that some time has passed) I was laughing about it… Isla was in the hospital in her medically induced coma and she needed a blood transfusion. The Doctors came in with the paperwork and waivers and went over all of the risks with us. There was a page long list of things that could happen but were highly unlikely, such as 1 in 50,000 chance or getting Disease A and 1 in 200,000 chance of getting Disease B. The Doctor was trying to reassure us that it was very safe and clearly the chances of anything on the list were slim because of the statistics. What this Doctor didn’t realize was PH affects 1 in 1 million people, so our odds weren’t on our side. When I remembered that day recently I just thought to myself- Holy Shit- we have been through some major stuff this year! Nobody should have to have those conversations… Nobody!

I know for me, it has really put things in perspective. I have always been pretty even keeled… but now I feel like I am even MORE so! I just don’t sweat the small stuff… maybe it’s because we have so much BIG stuff… or maybe it’s because we got a reminder that life is fragile and it’s important to make the most of every day because tomorrow is never assured. Interestingly enough, my Meyers Briggs personality type changed. If you are familiar with it, I was an ESTJ and am now an ESFJ. Typically, personality types don’t change… but I would imagine that a life changing event can make an impact!

Isla is doing really well. She is enjoying her night-time only Oxygen! She is a joy to be around, and I cherish the moments that all three of us- Matt, Isla and I can be together. I was just thinking… we need family picture! Here are a few… 

 

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This is right before we found out we were having a baby!

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This was taken in the hospital, before Isla was born.

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This was taken when Isla was 2 months old.

 

And we don’t have any more family pictures since then… just one of us taking a picture of the other… so we need a family photo 🙂

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Baby Steps (Literally and Figuratively)

Today we had a follow-up appointment at Children’s Hospital. Both Matt and I feel sick to our stomachs every time we have to go back there. There is just so much unknown, plus the fact that twice in 2013 we went to a Doctor appointment and were admitted to the hospital for over 5 weeks… so I have a feeling we will be forever traumatized. Nevertheless, despite our fears… today’s appointment went really well!

Isla had an Echo and an EKG. Compared to her last appointment, her heart looks better… and the Doctor even said that it looks almost normal! He gave the okay to go from 24/7 Oxygen to night time only!!! That will make life so much easier… we won’t have to worry about this anymore:

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He also said that we can stop one of her (many!) daily medications. It isn’t a PH med, but still, one less med works for us! He isn’t increasing her SubQ pump meds which essentially means he is decreasing the dosage since she is growing. He is hoping that she will be able to get off of the pump completely by the end of the year. Oh how amazing that would be! We are overjoyed with the news. We are holding onto hope that all of this will have a positive outcome. It just has to! Please continue to send well wishes Isla’s way. She isn’t out of the woods yet, but she is definitely heading in the right direction.

Here is Isla right after we took off her oxygen. She had an imprint from wearing a nasal cannula for the last 7 months and she even has a slight tan line. We are so used to seeing her with a nasal cannula, it’s like looking at someone who normally wears glasses that got contacts.

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