18 weeks 5 days Old

Sooooo....it's been a crazy few days....as most of you know Amirah had her tracheotomy surgery on Thursday. The surgery went very well. She came out of surgery and her color look so much better than it had in a while. She woke up, slightly out of it, about 20 minutes after returning from the operation room. We were so relieved that she seemed so calm and comfortable.

Most of that first day she just slept. It was a really long day for me, Andy and my Mom (who had been with us since Monday) and for all the people that were sending Amirah and us there thoughts and prayers.

Friday was a good day for Amirah and for me and Andy. My mom went home, we can't thank her enough for all her support through all of this, me and Andy went to the movies, visited with Amirah and generally just tried to relax.

Saturday was busy...shopping, visiting with Amirah, cleaned the house, and then spent the evening with my sister Jessica and her family who came for a sleep over.

Then Sunday arrived. I went with my sister Jessica for an early morning visit with Amirah. I got to hold her for the first time since her operation. It was a little scary at first, but after a few minutes it was "normal". After about a half hour (most of which she was awake for) Amirah started getting a little agitated and had some sort of lung spasm. It was a little scary because the nurse had to use the breathing bag to help her for about a minute. I should mention that last week when she had a follow up echo-cardiogram they found that Amirah has a little bit of Pulmonary Hypertension (because of some constriction of the blood vessels in her lungs). This is pretty typical for someone that has Chronic Lung Disease (CLD) like Amirah, and she should out grow as she out grows the CLD.

It was pretty scary when she had the spasm. But after a minute or so she recovered and settled down and fell back asleep.

I don't know if it started with the spasm episode or if it would have happened yesterday anyway, but yesterday the reality of our situation hit me...it hit Andy too. We have a long road ahead of us. Even if she does come home soon we are looking at having a baby home that needs a lot of extra attention, lots of doctors appointments, lots of training... lots of stuff we weren't really expecting to have to deal with when we were dreaming about our new family.

I feel bad complaining and want everyone to know how truly blessed and grateful we are for ALL that we have. I could go on and on with all the things that we are blessed with, and I know in two or three years we will look back at this experience and almost forget how it felt. But right now its hard.

In addition to the fact that she will have the trach and all that it brings with it, Andy and I are also dealing with the reality that we really really expected she would be home by now. So while in February and March it was hard, we would just say to each other "it's only another month or two and she will be home". Now its the end of May and we have NO idea how long we will have to wait to Amirah comes home. We try to take this day by day, but its pretty hard to live like this. I am looking into different support groups and/or therapy to address some of our feelings. We both feel like we would benefit from some support like that.

Andy:

Hey Amirah Nation! I wanted to jump in here for a second, and maybe just talk a bit about the experience. This is all about Amirah, but I want to be honest. Deep down, I was really hoping that this blog would be a few months of close calls, and then, Amirah would be coming home, and it would be pictures of her growing up. I know, movie like, and a childish dream. But one I held never the less.

Yesterday, I think more then anything, Jo and I mourned all the things that we will not get. Jo will not get to breastfeed. I won't get to play all those little rough and tumble games a father plays with their child. We are mourning the loss of not getting to be normal parents to a normal baby. We feel selfish for feeling like this, but its how we feel. When Jo talks of living day to day, she is totally correct. It's hard to plan for anything when you don't know how your child will be doing two months from now.

I think as we continue to discuss Amirah's fight, it would be wrong of us NOT to discuss, at least in some part how we, as her parents, are handling this. Jo is right. This is the toughest thing I have ever been through. Today, as I was feeling particularly sad for myself, it suddenly occurred to me, I am being sad for something Amirah does not realize she is missing. She is taken everyday, a day at a time. There is literally no other way for her to conceive the world right now.

I decided then; as hard as it is to keep reminding myself, if she can take it a day at a time, well, I'll just figure out a way to do the same. It's literally the hardest thing I have to do.

Okay, back to Jo. :)

Anyway...enough about us... here's more about Amirah....
Today they started her on some Nitric Oxide again. This and another medication (I can't remember the name) that she started yesterday will help with her Pulmonary Hypertension. I spoke with her doctor today and he said it would probably be a few weeks before we see a significant difference from the NO2 and the medication. The will repeat the echo cardiogram to see how shes doing then.

She had a follow up eye exam last Friday and her ROP is about the same and the eye doctor was not to worried. He believes she will out grow it without the need for surgery... (we like the good news lol)

She also had a head ultra sound before her surgery, more as a check up than anything, and that was completely normal.

The Physical Therapist that work with her have really discovered that Amirah LOVES to move around and when they can the "dance" her around in crib...

She really is a great baby. It's hard to leave her most days, but I know that she is in the best place for her right now. And I know that the nurses that provide most of her day to day care truly care for her and that really helps.

As always, thank you for all the continued support, love and prayers. The amount of love, prayers and thoughts from everyone over the past few days has been over whelming. We can't express how truly blessed and loved we feel.

Finally, here is a photo of Amirah today with her "puppy" propped up to hold her pacifier. We still need a name for her puppy and are taking suggestion :)