I know I have much to be thankful for. I love this country and appreciate all the sacrifices that have come before us to allow our family the joys and priviledges this country has to offer. However, today has turned into a very hard day for me. Ethan was unable to get extubated this morning. He does great on little support with the ventilator, but as soon as they turn all support off he begins to struggle and retain CO2. So we will try another day.
The doc thinks we just need to get more fluid off his body and out from inside his lungs. He is still the pillsbury dough boy. They are increasing his diuretics. So hopefully soon he will be ready. There are alot of things in life that stink. I do not in anyway feel my life is bad. . . but to watch your baby suffer day after day for weeks on end and not be able to do anything about is heartbreaking. After awhile a pat on the head and a holding of the finger are just not enough when he is crying in pain. Oh well, at least he is not going backwards today!
5 comments:
Heidi and Greg, I'm so sorry that Ethan is having to go through this, and that you are having to be helpless witnesses as he struggles. Even though my son has HLHS too, I cannot begin to imagine the rollercoaster ride you are on. I know that there isn't really anything I can say that will make this journey any easier for you, but I wanted you to know that you are thought of and prayed for every day, and that a fellow heart mum is sending love and hugs your way. Our babies are amazing. I know things are crazy for you right now and I'm sure you have a great support network around you, but if you ever need to let off steam to someone who is a little bit removed from where you are, but who also understands a little bit of what you are going through, please feel free to get in touch. You can contact me through my blog. With much love, and all the support I can offer from across the pond. XXX
I love that you did a post on your other kiddos yesterday... Kamryn always has the same request. It's fun to mix it up a bit!
I am SO sorry that Ethan wasn't exubated. Owen has only been on the vent for a 7 day stretch and I was about ready to pull the tube myself. It's aweful watching them cry and show discomfort and our instincts as parents is to pick them up and make it all go away. I don't understand the "why's". I think we both have a LOT to be greatful for, but it doesn't make those crummy days any easier to deal with. It's okay to have a few breakdowns along the way. I've had them in front of Drs and nurses and I am not ashamed of them. It happens. We are thinking of you, praying for you and I hope your 4th of July gets a bit better.
Ethan... we are PRAYING for you buddy. We know that you can get rid of all that fluid, then you'll feel better and ready to exubate. Can't wait to meet you someday (soon)!!!
Andrea
My situation is totally different, but I think I understand how you are feeling. Kate has been screaming in pain for the past week, and although it pales in comparison to Ethan, I understand the heart wrenching feeling of not being able to make it better. And I think holidays are harder, it's a family day, you see people celebrating as families and you want all of your children to enjoy it. We went to a rodeo last night with our girls. It was fun until the end, when the fireworks went off. I was so sad thinking that little Kate could not see the fireworks and probably never will. I will continue praying for Ethan, I'm glad I have your example to get me through my struggles with Kate. Love you.
Heidi. I think about and pray for you and your cute family often. I get updates from my mom via your mom. Glad she's there with you for awhile. Know you are loved. love, Shell (and even Antoma :)
You heart moms are like warriors. You are called upon to persevere and support your little babies as they wage a serious battle to change their heart circulation. I hope little Ethan does great as they up the diuretics so his lungs will dry out and he can be off the vent and in your arms.
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