How Do You Handle It

I was approached today by someone who is pregnant and she has discovered that there are some birth defects that her baby will have with his heart and with his kidneys. She asked me how you handle it, how do you handle getting news about your child. I have thought about that all day. What words of advice do I give this girl. She was told that her baby will stop growing between 26 and 28 weeks and will only weigh between 1 and 3 pounds at birth because of this heart defect. So, how do you handle?

It is very hard at first. I remember sitting in the hospital room at Primary Childrens as Dr. Nelson (one of the best nephrologists around) told us about the diagnosis that Kayden had. Hypoplastic Kidneys. His kidney stopped growing in utero at around 20-23 weeks along. His kidneys were only 2 and 2.5 cm compared to 5 cm for a normal full term baby. His kidneys were not functioning at full capacity at the time. We needed to get him hydrated and on the right food and measure everything that he was taking into his body and out of his body. I remember sitting there and just looking at the doctor. No reaction. Just taking in all the information but not really believing what was being said. My son looked just fine, besides being small. Now I look back at those pictures and I see how sick my baby was. I remember telling people the first day or so after we found out what was wrong that he may need a transplant, but that soon changed to he WILL need a transplant. The main goal at that time was to get him to be big enough for the transplant so that we could go directly to that option without having to put him on dialysis. Basically, we needed to get him to survive and live until he could get a functioning kidney because the ones that he had sucked.

So how do you tell this girl how you handle it? Do I tell her that there were many nights that I just sat and cried because I didn't know what was going to happen with my baby. That I gave him life but that he could die at any time. That I broke down many times because he wouldn't drink the one ounce of his bottle that he needed to take that hour, or the times that I had to shove that NG tube down his throat and he would gag and try to throw it up. The many decisions of having a NG tube, a g-tube and finally a GJ tube inserted. Do I tell her about all the meds that he had to take or the growth hormone shots that I had to give him and the epogen shots that he freaked out about getting. The many nights of waking up and finding him laying in his food because his pump decided to feed the bed and not him that night. The many nights of waking up and finding that he had thrown up blood during the night because he had wretched so hard so often that he gave himself a hernia. The tests that had to be done, the gagging that he did because of his not wanting to eat, the feeding pumps, the doctor appointments and many other things that made life so hard for 4 years.

I am going to tell her this.....that no matter what, that is your child and you love him with all of your heart. You be his advocate, you do what you know is right and best for your child. You look at your child and you fall in love. You take whatever happens and you go on and you do it. You be strong and you do what you need to for your child. You were given the greatest gift ever and that was to have a child that depends on you so much for so many things. You will have a bond with that child that is indescribable (not saying that there is not a bond with the other children that you have it is just different) and you will be blessed beyond measure.

I never thought that in a million years I would have to give anyone a shot, let alone my own child, but I did. I inserted NG tubes and I have inserted G-tubes. I have watched my child come out of a surgery where he received the greatest gift of all and I did it because he was my child. I would take his place and do it for him if I could, but I can't and the only thing that I can do is to be the best mom to him that Heavenly Father wants me to be. He entrusted me with this little child for a reason and I am not going to let my Heavenly Father down or my child down.