Sunday, November 15, 2009

Seven Weeks Of Crazy/Beautiful

I once heard a quote: The days go by so slow and the years so fast.

It's completely true, my friends.  The days here go by sooo slow and yet we have been here SEVEN weeks already. We are nearing the two month mark.  When I think of it that way, I can't believe it has gone by that fast. I can't believe Paxton will be two months old next week. Some days I feel like I should still be pregnant. The end of his pregnancy, the delivery and the first few weeks after his birth were such a whirlwind of time and emotions that I haven't had time to wrap my head around all that has happened.  
I am ready. My husband is ready. The boys are ready. Paxton is ready.  I tread EVER so lightly when I say this, but he has taken a turn towards AWESOME.  Yep, you thought I was going to say a turn for the worst, but he has not. Last week, he was in some weird funk, we thought he had an infection. Doctors postponed his feeding tube surgery,  sent out all kinds of cultures, started prophylactic antibiotics, I held him while he slept because all he wanted was TLC ( and I happily obliged) and he was stuck umpteen times trying to get i.v. access. It was not a pleasant week to say the least.  Then, all of a sudden he improved.  His oxygen levels have been perfect, his meds all appear to be doing exactly what they should be (we were doing a lot of  "tweaking" to them), his cultures all came back negative and he is eating like a ferocious animal. He even nursed for the first time, having never had anything but a bottle, he took right to it and I proceeded to cry my eyes out and so did his speech therapist. He was rescheduled to have his feeding tube surgery early this week and apparently Paxton has other plans because he has gotten so strong and is almost able to take a whopping 65 cc's by mouth!  That my friends, is a really big deal for such a tiny, 8 pound, baby who's heart is on overload! Tomorrow morning the doctors will round and I am sooo anxious to see what they have to say about Paxton's "care plan".  Dare I say it, but I feel like we might be getting close.... I am scared to say how well he is doing and I am scared to say how positive I feel. As I learned early on, I have no control over this situation. I don't have any clue how or when this will all end and I try not to get to excited, but he looks so darn good.  I mean look at this picture. Have you ever seen anything more beautiful? home! (From the movie, E.T. for the younger crowd)

I went home again this weekend and got to hang out with my boys. We did normal things like running errands to get new "kicks" ( Austin and Mommy's word for shoes) for the boys, a target run and even Austin's first birthday party with a friend from school. I just love doing normal Mommy things. I never realized how I would crave those things until they were taken away from me.  I am not sure how I will manage with two toddlers who thrive off of running in different directions, who love to look at me with the biggest grins on their faces when I say stop, and then run faster. Only to add Paxton to the mix with his monitor that he will be hooked up to all day every day. It is going to be wild, but then again we are The Wild Wild Wests and we always manage to work it out.  
Crazy/beautiful, that's what someone very near and dear to my heart just wrote to me about our life. It is crazy/beautiful.  There are so many things that we never dreamed would happen to us in a million years that have happened in the last two months. My husband and I walked down the hallway of the hospital hand in hand tonight, saying that exact thing out loud. Who knew our Sundays would be filled with walking down ICU hallways just 4 months ago. Crazy, but so beautiful. When we get to see his face, when we see the kindness shown to us on a daily basis, when two toddlers are tearing through the house screaming with a baby on my hip, it will be crazy/beautiful.  My oh' my, how I cannot wait to see that day and when it comes I will stop in my tracks and praise God for getting us there! 7 weeks of living here and there. 7 weeks of separation from my family. 7 weeks of hospital life all day.  7 weeks of scared. 7 weeks of sheer exhaustion. 7 weeks of pumping round the clock. 7 weeks of patience. 7 weeks of strength. 7 weeks of growing closer than ever with my husband. 7 weeks of learning life lessons. 
7 weeks of crazy/beautiful and many more years to come!

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Lynnette Kraft said...

I hope you're close to going home! What a day that will be huh?

I just prayed for you all.

~Jamie Kubeczka~ said...

He looks so sweet and precious in that picture.

Christin said...

Oh my...he sure is beautiful! God is great! Glad to hear he is progressing...we are still praying for your family!

Anonymous said...

I am so glad to hear he is doing great today! I have been following your blog since he was born and let me tell you it's always up and down with these little HLHS babies. But once it's over and they are healthy it's the best feeling. I work in Long Beach California Miller Children's Hospital with 4 Pediatric Cardiologist. So I know what you go through as I see it from all the parents. Once you are home though it's just you and your family and your schedule starts to fall back to what you are used to and I'm sure Paxton will be even more relaxed. I always think that hospital's stress out these little ones but they need it. I will continue to pray for Paxton and of course for you, and the rest of your family. Your husband is such a wonderful dad and husband and you should be proud, 2 toddlers must be tough. I have a 6 year old daughter and 19 month old son and I go crazy some days! Sincerely, Lorena

Arielac said...

Surfin' in the web I found your lovely blog. I only want you to know you and your whole family are so brave!!! Your beautiful Paxton is in my mind and in my heart. I wish you the best!!

Regards from Spain.

Amber said...

Hi Jenn! I have been following your story for a few weeks now, and just think you are an amazing mom and you have such a wonderful family. I wanted to tell you about a little girl who has/had the same condition as Paxton. Her blog is: You may already know about little Lindsey, but if you don't she is also an amazing little girl. She actually had a heart transplant in either June or July, which I know is not the route you are hoping to go, but I thought you could get some encouragement from this family. I can't even begin to imagine what you are going through, but I am so amazed by how strong you are. I know you have your frustrations, but I am praying for you and Paxton and your family!

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