McKinley came home with her feeding tube and heart monitors. We spent all of Friday morning getting trained on how to work those, as well as getting training on the cocktail of medications that we have to administer each day. I feel like our living room looks like a hospital room, and that I should now be a certified nurse! And this all happened overnight. It's quite overwhelming, but as a great friend reminded me today, God chose us for this for a reason. I never really liked it when people said "God won't give you more than you can handle." When one of my very best friends lost her 4 year old son to a short, brutal bout with cancer I thought, "I could not handle that Lord, how is she going to do it?" There are some things that I knew I just could not handle. But then someone reminded me that I needed to finish that sentence. God won't give you more than you can handle...through him. With God by my side, he will get me through anything. It doesn't mean that I will like it, or that it will be easy, but with God as my supporter, I can get through this.
So here we are, 2 1/2 weeks later and we are starting to get the hang of this family of 4 thing. Actually, it's more like a family of 100. We have been surrounded by friends and family all day and night helping us take care of our two little miracles. They have been a handful, and we would be zombies without the help of the people surrounding us!
McKinley is doing wonderful since she's been home. One of the very hard things is that we are constantly on the road visiting Dr's. Having to get out of the house 2-3 times a week with newborn twins is quite the challenge! I have decided that McKinley is on a mission to visit all of the Dr's at Children's Hospital. She has 7 different Dr's that she sees and since most of them want to follow up monthly we are there about 2 times a week. She is seen by nephrology, cardiology, orthopedics, genetics, surgery, urology and her pediatrician. She is one popular girl!
So far most of McKinley's levels remain consistent. She has her labs taken every other week so while I have to see my baby girl poked often, its good for us to be able to track how she's doing. She is also gaining weight steadily which is great! At 2 1/2 months old she now weighs 6lbs 15oz and her brother weighs 7lbs 11oz! I'm still anxious for them to get even bigger but we are taking baby steps!
With her weight increases McKinley needs to be fed more. Since she is already being asked to eat twice as much as a normal baby her size this is getting very difficult. It is looking like she may not be able to keep up. She currently has an ND feeding tube in place, but most likely will have a more permanent G tube placed in the coming months. A G tube is a tube that is surgically placed directly into the stomach. While I'm not excited for her to have another hole in her stomach (she already has a colostomy), it will be nice to not have the beautiful view of her face blocked by the tube that is there now. Plus, her ND tube has already come out once and it's awful seeing her get that put back in. Not to mention that we have to go to the emergency room to have it put back in which is a total hassle!
Right now our entire focus is getting McKinley to eat and grow. Please pray that she does not get overwhelmed by the amount that we are asking her to eat and decide not to eat altogether. Please also pray that my milk supply will increase to be able to keep up with her demands.
And then there's precious Brooks. He is doing so much better! He's learning to sleep for longer chunks of time and although he still has fussy tendencies, he's no where near as bad as he was when he first came home. :)
We are settling in to being a family and are so thankful for everyone who is praying or us! Thank you for being patient with me as updating a blog is nearly impossible with newborn twins! :)
