Friday, February 28, 2014

Doing Much Better

Well things are looking up,  The transfer to Salt Lake went smooth and when we got there the cardiologists did another echo and reviewed everything.  They decided that he did not need surgery and think that the hole in Grayson's heart will eventually heal up.  Good news, a little frustrating that we had to go to Salt Lake when nothing changed, but for some reason that is what was needed and he is doing good now.

The first day was really hard for Darcie, everything was different and we went from having our own nice little room with just Grayson to a room with 6 other beds and hardly any room between them.  It was hard going from everything we were used to, but it was better the next day and I think Darcie is fine with everything now.

Today he weighs 3lb 9oz and they are increasing the amount of calories they give him on top of what he gets from the milk.  Hopefully he will start growing faster and can get big enough to come home soon. They were able to take him off of the ventilator last weekend and he did extremely well and they have been decreasing the settings with his oxygen needs staying right around 30%.  For those who don't know we breath 21% oxygen with no support.  So he is doing really well.  Today they told us they will be switching him to a different type of support that is like a regular nasal but a little higher support.  So he is one step from being on straight oxygen with no additional support.  That means he should be able to start trying to learn how to feed with a bottle and breast feed.

Once he is able to eat full feedings from the bottle and can breath with little or no support and everything is stable he should be able to come home.  I am hoping that can happen within a month or so.  It is hard to say until we see how well he does with his feedings.

It has actually been really smooth these last couple of weeks, Darcie is able to stay in Utah and spend as much time as she wants with Grayson.  She has gotten to hold him a lot more and I am hoping that I will get to hold him this weekend.  Callie and I go to Utah every weekend and either my parents or Darcie's will go down, so I haven't had to drive myself.  That makes it really nice. Callie is able to go to school and come home just like normal because Taylor is here.  Really everything seems to be good and now Darcie isn't running back and forth trying to do everything.

I did get some pictures of the transport as promised and some recent ones of our little man.












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1 comment:

Tara and Josh said...

Thanks for updating Brandon. your little guy is doing great and I am so glad things are looking up.

9:55 AM

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What I Wish Everyone Knew

I wish everyone knew that this hurt never goes away. We still need support, and I still need to hear my son and daughters' name. Now, even more than before, I NEED to have their lives validated.

I wish everyone knew ....that even though my babies' deaths were the most painful experience of my life, I am grateful for the pain, and I would still choose to have them even knowing that it would end the same....and I would give anything to cuddle them in my arms again, if only for a brief moment.

I wish everyone knew... that my heart leaps with joy every time someone asks me about my babies.

I wish everyone knew that a baby's age or size at birth or death does not determine to how much of a person he or she was or how much they will be loved or missed.

I wish everyone knew that an early miscarriage and/or losing a tiny baby is just as difficult and painful as losing any other child.

I wish everyone knew how much I need to talk about mybabies, and how happy it makes me when someone asks about them.

I wish everyone knew the struggle that I go through everyday to answer the simplest questions, like: How many children do you have?

I wish everyone knew it is ok to talk about my loss.

I wish everyone knew that I think of my babies all the time.

I wish everyone knew that I have completely changed because of my experiences.

I wish everyone knew how much I love and miss my babies.

I wish everyone knew how much I need to talk about them and remember them.

I wish everyone knew what it felt like to hold them, still, perfect, breathtaking and have to leave them.

I wish everyone knew what it felt like to long for just 1 more second with their baby. Maybe then they could truly cherish all the billions of seconds they get with theirs.

I wish everyone knew that us mommies who lose our babies carry them with us everywhere we go...for the rest of our lives...and to say we are changed...is putting it rather lightly.

I wish everyone knew and appreciated what an absolute miracle each and every child is, from conception to birth, viable and enviable.

I wish everyone knew that even though I can smile and go to work and "function" like everyone else, I'm not like everyone else.

I wish everyone knew that even if you don't know what to say to me, saying nothing at all is more painful than you can imagine. Ignoring me and never speaking to me again because it makes you uncomfortable to be around me is worse than being uncomfortable or saying the wrong thing.