Thursday, August 23, 2012

Half Birthday!

Jensen turned 6 months old yesterday! I can't believe how fast this year has gone by! I am so grateful to have him and couldn't picture our life any other way. This time last year I had just started my last semester of college and I was about 14 weeks pregnant with Jensen. I was getting so anxious about our anatomy scan...all I cared about was confirming that he was a boy. I never thought there would be anything wrong...but that's for another blog! 

He's so handsome!

6 months ago we started the scariest journey of our lives. I had no idea what it would be like to be a mother, let alone a heart mom. I was worried, happy, terrified, and relieved when I heard that beautiful cry. Jensen was born fighting and hasn't stopped since. In half of a year he has taught us more about life than I've learned in 23 years on this earth. All the hours I've spent studying, reading, researching...they never prepared me for life with this sweet boy. He has overcome so much in such a short time, I can't believe how strong he is. Jeremy and I will continue to fight for him because he continues to show us how resilient he is. I'm so lucky to be his mama =)

Chillin' by the pool

In other news, Jensen has been working on those muscles of his! He's doing great in physical therapy and continues to improve throughout the week as we work with him. He has an evaluation for occupational therapy coming up which will be perfect timing because he will be starting solids soon. I'm hopeful it will go well but its common for heart kids to have issues with textures, gagging, and oral aversions. He's still nursing like a champ so I know we can fall back on that while he adjusts to solid food. 
Mean muggin'

Jensen is on his last two weeks of phenobarbital and then he will be completely weaned off! Yay! This is such a big step because it was a HUGE volume he was taking twice a day that tasted horrible! Meds are always a fight but hopefully without phenobarb things will be a little easier. We have a follow-up neurology appointment soon so we will see how impressed they are with him ;)

We had another poop explosion. I think this is the only time its acceptable to put your child in a plastic bag! This caught all the extra that was dripping everywhere! Yuck!
We have a cardiology appointment next week. I always get so anxious about these because I know his cath is coming fast. When we were discharged CHOP told us to expect a cath in 6 months to a year. This is to dilate his pulmonary artery stent and superior vena cava stent. I know my kid and I'm certain that we will need to go back sooner rather than later. We have been keeping an eye on his sats (which will let us know when he's ready for a cath) and we are expecting him to be on home oxygen before we go back to Philly. So far we haven't had an issues post-Glenn and I hope he keeps it that way. I hope Jensen steadily declines his sats and we get to CHOP without any need to rush. I'm keeping my fingers crossed that he sticks with the plan ;)

Love these two =)

Please continue to keep the Dorsett family in your prayers. Their son Hayden earned his angel wings on August 16. He is being laid to rest tomorrow. I hope his parents find peace but I can't imagine the heartache they feel. Here is the announcement of his services.

For Hayden <3

Thursday, August 16, 2012

Broken hearts

Jensen was born with a broken heart. When he was first diagnosed, we immediately thought if he did survive, he wouldn't have any quality of life. As I type this, he's lying beside me on the bed, sucking on his toes, a skill he just learned today. At this same moment, there are parents of other broken-hearted children fighting for a few more minutes, a few more kisses, and peace for their child. It seems so unfair.

Before I continue, you have to understand the heart community (as we call it). It is parents and survivors who connect with each other on facebook, in hospitals, over the phone, from thousands of miles away. We share a common denominator: broken hearts. Our children have some type of heart defect, along with other medical issues. This means that when we meet other families in the same situation, we have an instant understanding. I can look at another heart mom and see the pain, frustration, hope, and all the same things that I experience on a daily basis. We get each other and are always there for each other, they become family.

That being said, there is a very special family that Jeremy and I met while we were at CHOP for Jensen's Glenn. Their sweet HLHSer Hayden was born just a few weeks after Jensen. They were actually there at the same time we were for Jensen's Norwood but we never got a chance to meet. I finally was able to talk to Hayden's mom and dad and they were wonderful people. Hayden's mom and I texted each other all hours of the night just to have some company while we were at our kids' bedsides.

Hayden just went in a week ago for his Glenn and came through with flying colors! He was in and out of the hospital in days! He had to come back to have a feeding tube surgically placed. On this admission to CHOP, something went terribly wrong and I got news that Jensen's heart buddy ended up on ECMO and was being rushed to emergency surgery with Dr. Fuller. Its hard to describe the fear and panic that sets in when I even see the words "ECMO" written.  Myself and other heart moms immediately began sending out prayer requests. Unfortunately, things have not gotten any better over the last few days.

Now I am broken-hearted. I wish I could jump on the next flight to Philadelphia to hug my friend. I know it won't help. I am shocked, sad, angry, and confused as to why this happened to Hayden. I can't even begin to imagine how his parents feel right now. Although their child was diagnosed with a serious, complex heart defect he was a fighter. He was winning against HLHS. Things happened so quickly and suddenly, the tables have turned.

I already cherished every second of Jensen's life, but I will even more now. These kids' lives are so fragile and things can change in an instant. I hope Jensen knows what he means to me.

I got sidetracked but my point is, please pray for this family that is so dear to me. They need strength to get through the coming days. Also, there are several other heart babes that need prayer. Specifically, Jensen's friend Martin is undergoing his Glenn right now. His parents have updated that he's doing great so far, please pray that his surgery is uncomplicated and his recovery is quick.

Sweet baby Hayden

Wednesday, August 8, 2012

Super Baby!!

Wow, its been a while since I posted! We have been very busy being normal :) I am loving every minute of the post-Glenn life!! Jensen goes everywhere with me. We go to Target, the grocery store...I even took him to BABIES R US! (Which I have not ventured into since he was born for fear of snot nose germ spreaders other kids) 

We still have lots of appointments to go to but they are gradually getting more spaced out. Jensen's cardiology appointments are only once a month now. His last appointment went well and his heart function looked great. Echos are getting a lot more difficult with a squirmy five month old! We have to pull out every trick we know and basically put on a Broadway show just to keep him entertained. I suspect it won't be long and we will be needing to do sedated echoes. 

Jensen has been doing great with nursing, he eats like a champ! Its so easy to not have to pack 14 different bags just to run across town! I don't need any pumps, bags, syringes, bottles, thickener, formula.... He's low maintenance these days! I'm not sure if he's gained weight because **gasp** I haven't been weighing him ;) Its a very liberating/scary feeling knowing that my "normal" baby doesn't need daily weight checks. Our cardio told us that post-Glenn most kids stall out on their weight gain. In addition to that, around 6-8 months all babies slow down on growing, so its perfectly normal for him to not gain much right now. 

We had Jensen's physical therapy evaluation last week and his first PT session was yesterday. Our PT said that when she scored Jensen's evaluation, he didn't score delayed in any area!! I am amazed! He is on the low end of the normal range, but that is far better than anyone expected. He improves drastically from week to week. He is kicking butt and taking names with his PT homework. I am so proud of him!

Everyone knows a hero needs a cape. Thank you Heart Heroes!!

He really is a Super Baby <3