One of the really neat surprises that has come to us through Kolby is that we now have an extended family. The staff at Home Hospital have simply been so loving, so supportive, and so kind, that we have fallen in love with them. In an effort to protect identities, we feel that we shouldn't name them personally on the internet, but they know who they are.
The Neonatologist. This is a woman who lives for her kids in the Neonatal Intensive care Unit at Home Hospital. When it would have been easy to simply feed Kolby and keep him comfortable, the Doctor has continued to push his limits in order to discover what he can take. Because of her efforts, we feel so much more comfortable in bringing him home. She has spent countless hours on our case, and we suspect on the cases of the other infants in NICU as well. We thank God for her, and pray God's blessings on her!
The nurses. There are so many of them. These fine women work in an incredibly stressful environment, but they take the time to love on the babies they care for. That they have fallen in love with Kolby has been clear to us, and it really means the world to parents when they leave the hospital to know that your child is in the hands of someone who loves them. Kolby's Mom mentioned the other day that Kolby has several "mothers." This statement is so true. The nurses have spent so much time with Kolby, that in preparation for bringing him home they now have to teach us what they have learned. In many ways, they know him better than we do. That is fine with us, as these women are gifted in their craft. Caring for babies is what they do, and they are experts at it. We have been somewhat intimidated by Kolby, but the nurses have not. Their efforts have put us at ease. We hope to bring Kolby back in six months or so for a visit. That will be a day of grand celebration!!! One nurse in particular bonded well with Kolby. This in no way takes away from the other nurses! They are all remarkable in what they do! But nurse "C" was with us on the night that Kolby was born, and when you go through something like that together, it binds your hearts. There is a connection that we feel with her, a bond. She is gifted and God-sent. She emailed us once and wrote, "Thank you for allowing me to be a small part of Kolby's amazing story. It is one I will remember for years to come. Not something that comes easily for a "veteran" nurse like myself! Sometimes, after so many years in a career, we become a little jaded and settled in our daily routine. Kolby has reminded me that miracles happen every day. We just have to keep our eyes and hearts open to receive them." That touched us deeply.
Together with the Doctor and the nurses, we have all learned Kolby well. Our hope is to help future parents of surviving TD babies with what we have learned, largely through the Doctor and nurses.
First, Kolby is very sensitive to positioning. With his tiny chest and small lungs, he simply has to have a clear airway. A slight adjustment of his head will either improve or hurt his oxygen saturation. Kolby likes to lay on either side with his head tilted back slightly.
Second, Kolby can take very little activity. Once, we fed, bathed, changed, and weighed him all within a matter of minutes. His heart rate dropped and his oxygen fell through the floor. It was simply too much. We had a scary moment, but the nurse's professionalism saved the day. So now we know that you have to go easy on him, one thing at a time, and let him rest in between.
Third, Kolby has to eat slowly. The Doctor was stretching his limits, trying to find out what he could take. She wanted to get enough food into him to give him strength and help him to gain weight, but when he was full he couldn't breathe well. Now we feed him with a machine that gives him his food over an hour and a half. He eats now and is comfortable most of the time.
Finally, Kolby likes breast milk. When they feed a child with a feeding tube, they pull the contents of his stomach out just before a feeding in order to determine what his digestion looks like. Consistently, Kolby was able to digest breast milk better than formula.
It is hard to believe that we are now preparing to bring Kolby home. We will be spending the night at the hospital with Kolby in our room. I don't imagine we'll be getting much sleep, but that is OK with us. We realize that we have a miracle in our midst, and are thankful for the opportunities that God has given us to care for this special child. It is fitting that we are in the advent season, preparing for Christmas. It is a season of recognizing what we have been given in the Christchild- the gift of God's own coming into the world, a show of His love for us. That Child was given for a purpose, and we feel so close to that because, on a much smaller scale, so has ours.
