When I last posted Jonah was sick and not eating well and the likelihood of a feeding tube being inserted was looking to become a reality. I’m greatful to say that Jonah has overcome his sickness and also has begun eating! We’re not by any means out of the woods yet; Jonah’s last weigh in was last week and he gained 6 ounces in a 10 day period. He is now weighing in at 9 lbs 8 ounces. They would like to see him gaining an ounce a day; hopefully we’ll begin to see that.
We track his feedings very closely, which includes his feeding times, volume he drinks and calories consumed. This has been a great tool for us to look back from where we were to where we are today and see how he has done. We set his goal based on his current weight, then monitor that by comparing it to his calorie consumption. For most of his life he’s been eating about 60%-70% of what he is supposed to eat a day. In the past 2-3 weeks he has begun to consistently get in the 90% range and has even surpassed 100% a few times.
My wife is doing a great job feeding him as I can’t get him to eat as well as she can. I am thankful for her perserverance in this and I know Jonah is too. He seems to be more content now that his belly his full on a consistent basis, rather than him struggling to get the needed calories to function in the past. As Jonah closes in on being 6 months old, I believe he has turned the corner – or at least is in the process of turning it at this point. He is such a precious boy and a blessing to our family. Knowing what he has gone through in the first 6 months of his life is astonishing to look back on. I can sum it up by saying: God is good!
I haven’t been posting much on this blog lately but have noticed most of the visits I am getting are from searches like: ‘broken heart’ or ‘Down Syndrome ultrasound’. If that is you I assume you are in the same position we were in when we were told of his heart condition and the high probability of him having Down syndrome. You have gotten a routine ultrasound of your baby, and the excitement that you were feeling has been deflated by the news of issues with your baby in the womb. I know many things are running through your head right now, and that’s normal. What will life be like for us and our baby?….how will you be able to give your child to a surgeon when that time comes? The questions go on and on as you try to predict what the future will hold. The life that is growing inside of you, mom, is your son or daughter. That life inside of you is precious, no matter what negative remarks your doctor is telling you. That baby was entrusted to you by God and you are his or her protector and advocate.
Don’t be swayed by fear and what the unknown future holds for you and your child. Your doctor may scare you (and he may not even be aware that he is doing it) into doing something that never crossed your mind before, telling you it is the noble or ‘right’ thing to do, not only for you, but also for your spouse and other children. Some may even say it is best for that child to never be born. When people and doctors start to pull the ‘quality of life’ card out and become the ‘quality of life’ police and tell you its not fair for you to bring a so-called ‘non-perfect’ baby into this world they have become the judge of whose life is worthy and whose isn’t. I think the Creator of the world is doing a fine job of this and doesn’t need one of His created beings to be His new assistant as to who should live and die. This is a very slippery slope to tread on by putting someone else’s life on the line because of your preconceived notions that someone else’s quality of life isn’t up to your standards.
You were also probably notified, in a nice way of course, how your life will be more difficult now, how your golden years of life may always include this child and how your other children will be neglected and their quality of life will be compromised if you don’t abort this son or daughter. If the solution to every difficult situation in life was to remove those that make your life that way, I think the human race would have ceased long ago.
I could go on and on about this as I am in shock how easily mothers and fathers are swayed to kill their own child in our nation whether it be due to a possible problem found in the womb or just out of mere convenience sake both are equally wrong.
In closing, the baby boy from Kansas I mentioned last month named Mason came home last Friday (10/7) after a 16 day stay in the hospital. The longer than expected duration was due to him having to be re-opened up after his surgery was initally completed because they found an additional leak. Then due to his longer duration on the ventilator he ended up getting pnemonia. Yesterday this message was posted on his facebook page, please be in prayer for him and his family:
Cardio appt update: Mason left the hospital with a small amount of fluid around his heart (3mm), left valve had mild leakage, and right valve had no leakage. Well now the fluid is 9mm! and (LV) has moderate leakage, and (RV) has mild leakage. So we go for another Echo on Monday and if it hasn’t gone down then we will have to have it drained. Also they told us today that Mason will need to be on blood pressure meds for a year instead of the 30days we were told originally. While this is frustrating and upsetting for us….Mason is here and doing (other wise) great. So praise God for the work he has done (and is still doing) in our sweet baby boy.