On June 10th, we are celebrating the first birthday of my little brother, James Theophilus Andrews. I am writing this to tell the story of his first year of life, and I hope no one will find it dull :)
James was the fourth of my siblings to be delivered at home by my dad. It started with Matthew. The midwife couldn't get to our house in time, so Pa really had no choice. That was in Jacksonville, Florida.
In Iowa, there really aren't midwives around, and my parents don't really like going to the hospital to have the baby. Anyways, my dad delivered Felicity, Rebecca, and James in Iowa.
On the night James was born, all of us children were at the park not far from our house. Matthew went home to get a drink, and Pa told him to tell us that our new baby brother, James, had been born. Matthew ran down to the park, shouting,
"James isn't born, ya'll!"
But before that, he had turned back and said,
"Pa, what was I supposed to tell them?" Anyways, we figured that if the baby hadn't been born he wouldn't have a name yet (since we didn't know whether it would be a boy or girl), and we all went home.
James was the biggest baby to date (he was a little late in coming, so that's probably why). He weighed a little over nine pounds, I think. But right from the start Pa knew something was wrong. James couldn't nurse, but the doctor said that after a while he would, and that some babies just didn't at first.
But after a day or so, we had to buy a bottle because he just couldn't eat. It took literally an hour for him to drink half an ounce of milk! He began to lose weight, and by the time he was a month old, he was a really pitiful looking little thing. I can hardly stand to think of it even now, because it was so gradual that I hardly noticed that our chubby little boy was now very thin. He was never happy, he never smiled, he just cried. It breaks my heart just thinking about it.
So Ma took him to the doctor for a scheduled visit, and also to tell the doctor that James was loosing weight. Just several days before that, I had had all four of my wisdom teeth taken out. Pa was at work, and Ma, William and Hannah were at the doctor's. Ma called to tell Pa that they would have to take James to the hospital in Des Moines because he had a cleft palate. So, my dad and mom took James to Des Moines, thinking that he would just be there, they would give him a special bottle, and send him home for the time being. Little did we know that he would be there for over a month. They hooked him up to and IV that went through his nose and into his stomach. Ma and Pa took pictures and videos, and it looked so pitiful, but he was finally happy and getting his stomach full of good nourishment.
Ma and Pa went to visit him every week, but we children couldn't, and we sorely missed our little Jimbo (as he's affectionately known). We found out that he would have to have several surgeries. Two he would have soon: a tracheostomy and a gastro-intestinal tube. The tracheostomy was so that he could breathe.
You see, his jaw is too short (known as Pierre Robin Syndrome), and his tongue would fall back and obstruct his airway when he was on his back. The tracheostomy (trach for short) is a small hole in his throat, into which a tube is put, and it allows him to breathe freely no matter what the tongue's position. The G-tube is so that he could be fed through a feeding tube directly into his stomach. His surgeries were delayed once, and we weren't very happy about that.
We had expected to have him home in a week, and instead we had another two and a half or three weeks to wait. Ma and I went to the hospital several times after the surgery, because they wouldn't let him go home until two of our family knew how to take care of him. We had to learn how to change his trach tube, which was really scary, especially just the prospect of it. It has to be done once a week. So, when it came to it, I was able to do it very quickly and smoothly. It's not hard, but I still hate doing it.
We also had to learn how to suction him, because he coughs mucous up from his trach, and it can clog up the tube and make it where he can't breathe. At the time, it was very overwhelming. When we were finally allowed to go home with him, we were given quite a few things for his care:
A feeding machine. This was so that he could have his feeding overnight instead of us having to wake up and manually feed it to him every few hours of the night.
A suction machine. This was (obviously) so that we could suction him. We had to use it in the truck on our way home that first time.
A monitor. This reads his heartbeat and oxygen level so that if he isn't being able to breathe, it will go off and we can help him. Actually, the monitor is quite a nuisance. We had to set the limit pretty high, so whenever he's in a deep sleep it will go off constantly for no important reason.
We were also given a humidifier. This is sort of like an oxygen mask, but it goes over his trach and blows moist air into it so his trach won't get dried out and irritated. Thankfully, he doesn't need oxygen because of the trach. Well, we got home, and we had to adjust to our little sweet baby having to be hooked up to all that stuff at night.
We've had a few scares. One day I had been doing my chores, and suddenly Ma was calling the doctor, because James had some blood coming from his trach. I immediately thought it was his lungs, because I had been reading of someone having a lung infection or something, and I was scared to death. I was praying hard, I can tell you! But the doctor told us not to worry, because he was in no pain, and that he had just gotten some dust into his trach that had irritated his throat. What a relief that was!
I also forgot to mention that, because of where the trach is positioned in his airway, he at first couldn't make any normal baby noises, like crying or cooing, because he wasn't strong enough. We were told that eventually he would be able to make noise around the trach tube, and he has been doing that for a few months now. It was so wonderful to see him finally fat and healthy again. He first smiled at me when I went to the hospital, and it was the sweetest thing. He hardly stops smiling now, except when he's upset.
We have one of those baby walkers, and once he learned how to maneuver that thing, he has had so much fun in it. He can go just about anywhere, and he'll go really fast (running over people's feet, I might add).
In the last few weeks he's been letting go of things and just standing up. It's so cute because he will clap his hands like he knows it's something wonderful, and smiles very, very big.
After some time, he was able to drink most of his feedings through a special bottle, so that we didn't have to do it through the feeding tube except at night. It was the cutest thing when he finally learned how to hold his bottle for himself. Just recently we've been feeding him all his milk in the day time and not having to do any of it at night.
He still has two surgeries coming up in December. One will be to fix the cleft palate, and the other to correct his jaw. So it's wonderful that he won't have these problems forever, and will be able to enjoy a normal life. Another blessing is that he has a very mild form of cleft palate.
I've seen some pictures where not only the palate is cleft (which is not visible from the outside) but also the lip. It's very pitiful. But James has been such a blessing, and I thank God that we found out what was wrong with him before it was too late. My dad heard of a child that had it, and he was starved of oxygen for so long before they found out that he suffered irreversible brain damage.
God has been so, so good to us. I just love James so much, and it's an honor to be the one that takes care of him the most. He is very affectionate, and he has such a cheerful, fun loving attitude. One thing that I love is, his jaw has strengthened enough where he can stick his tongue out. He loves doing that, and it's like he just discovered that he has a tongue!
He enjoys being held a whole lot, but sometimes he'll struggle and struggle until you put him down, and he crawl around on the floor, and pull himself along on the edge of things such as shelves or chairs. His laugh is very hilarious, because he still can't make a laughing noise, so it's more of a noisy breathing. I wish you could hear it.
He's very ticklish, and, like most babies, find the simplest things to be very funny. I love my little brother more than words can tell. He has been such great fun, and he's taught me a lot. He's also made me more aware and sympathetic of people who have had children with special needs, and with people who have lost children to medical problems. Whenever I think of how nearly we lost him, or read about a family who has lost a little baby, I get a lump in my throat. What makes us so special that we were allowed to keep our baby, while others lost theirs?
It makes me very grateful to God that He allowed the doctors to find out what was wrong, and that they have procedures that will fix the problem. Please join me in wishing James Theophilus a very happy first birthday!
You can see some pictures of him on my blog, lauraeandrews.blogspot.com
Comments
Thank you, Anna :)
Thank you, Anna :)
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The best stories are those that are focused, unassuming, and self-confident enough to trust the reader to figure things out. --
http://lauraeandrews.blogspot.com/2014/05/dont-tell-me-hes-smart.html
Awe
Life is precious, isn't it?
Formerly Kestrel
This was a lovely essay. It
This was a lovely essay. It had a simplistic sort of beauty about it. Happy birthday, James :)
"You were not meant to fit into a shallow box built by someone else." -J. Raymond
Praise the Lord for His
Praise the Lord for His grace! I remember you told me some about James in an email once. Thank you for sharing more of his story!
He is really beautiful, as is
He is really beautiful, as is this essay, Laura. Your love for him shines right through. Must've been scary.
I have hated the words and I have loved them, and I hope I have made them right. --The Book Thief