Monday, December 12, 2011

Progress report and the protective nature of motherhood

Today marks the first full week for Theo's dialysis.  So far, there have been no major complications, which is a relief.  Theo is not eating as well as we'd like, so he is being fed by a combination of the bottle and a feeding tube.  He has been getting sick after almost every feeding, and it is so painful for me to watch when I can do nothing for him!  Today was a great day for feedings, though.  At his noon feeding he took 55 ml of the 65 ml bottle, leaving us with only 10 ml to put in the feeding tube.  That is the most that he has eaten since he started dialysis, and I am one proud mom!  Coming from someone who takes great pleasure in food, it is very difficult to watch Theo be "forced" to eat.

Milk coma
The nephrologists have slowly been increasing his dialysis fill volume.  They hope to get him up to 50 ml of fluid by the end of the week, which gets him a lot closer to coming home!  (He started at 15 ml.)  We still have a long way to go, but we are encouraged by the progress and by how well Theo is handling everything!

One thing I have figured out about myself this past week is that motherhood does trigger my protective nature.  One of the benefits that Theo is eligible for while he is in the hospital is SSI, which is a secondary insurance policy through Social Security.  I called the Social Security administration to schedule an appointment to apply for the benefit, and the woman on the phone said to me, "So, your son is disabled."  I quickly became defensive.  "No, he is not disabled.  He has kidney failure."  And I tried to convince her that I was not applying for disability but for SSI.  She then informed me that SSI is disability.  In another situation, our social worker printed out some of the doctors' reports for me to take with us when we apply for SSI, and the paperwork includes some nuggets of information such as "left foot deformity" and "low set ear."  I take exception with those bullet points!  Theo's left foot is not deformed!  It may be bent slightly too much in one direction, but that is just going to make him an excellent swimmer!  And then I have to remind myself to calm down.  The labels that the doctors and the government give his condition don't define him.   He has been created absolutely perfectly.

Nick and I are doing really, really well.  We know that our first two weeks of parenthood have been unique and would not be considered ideal.  But, it is also a really special thing that we get to go through together.  While I do not enjoy watching Theo suffer, we know that in the long-run all of this will be worth it.

Nick's sister, Hillary, flew into town to meet Theo over the weekend.  He gave her her fair share of serious looks.  She is great with him, and we can't wait to introduce Theo to his Colorado cousins once he comes home!
Theo exercising his serious face for Aunt Hill
If this is not perfection, then what is?

We still have a long road ahead, but we wouldn't change where we are right now.  Theo brings us so much joy, and we know that he is going to do some big things with his story in the future.  Hopefully that, and the conviction that God is at work, will sustain us through all the surgeries and complications that lie ahead.


  1. Thank you for taking the time to write and share us Theo's progress.

    You all are sincerely in my prayers and thoughts.


  2. Saw your blog post on facebook. Thank you for sharing your miracle! We will be keeping your beautiful family and Theo in our prayers. Congratulations! - Emily

  3. Hey Natalie, this is Anna from Oxford (the one who went to Miami!). I've been following theo's progress on fb, and just saw your blog. My family, our small group, and my parents and their small group are all praying for you guys. My daughter had pretty bad jaundice when she was born, and we had to keep her under lights for a couple days. I was super stressed by that, so Icahn o ly just imagine how you guys must be feeling. You're so right, though. The Lord created your precious little boy JUST HOW HE WANTED HIM and he'll help you through all of this. The Lord bless you and keep you all.

  4. Natalie you are an amazing mom. You & Nick are already such wonderful parents to him. It made my day to get to meet him today... he really is perfect & so precious. Thanks for continuing to share your story & know that little guy is loved & being prayed for all over the world! Love you both, & love him in that lion outfit ;)

  5. You guys are awesome! God knew you could handle this and would be strong for Theo. We continue to pray for yall every day and can't wait to celebrate him coming home!!

  6. Nick and Natalie,
    It is a gift to hear your hearts as you become parents of such a precious boy. He is DARLING!! Much love to you - and a promise to pray.

  7. Thank you and Nick for sharing your journey with all of us! You both are amazing and I am so inspired every time I read your blog posts! Please know that you are in our prayers and we are believing the best! xoxoxo the Phelps!

  8. The pictures that accompany this blog post are fabulous- he is absolutely A.D.O.R.A.B.L.E - in love with him Natalie! Thank you again for sharing these thoughts- I think about you guys all the time- we pray for you as a family all the time so it is nice to get the updates on HOW you are doing!

  9. He is so cute Natalie! We love you guys very much and are always thinking about you. I think the spirit and nature of motherhood you have is so awesome and exactly what being a great mother is all about. Great parents actually, both of you! God knows that too and has his arms wrapped around all three of you.

  10. Praying for Theo and your entire family.

    My daughter Anne, a friend of Nick, sent me the link to your blog.

  11. My husband is Caleb Lee and he doesn't check up on his facebook very often but he came across your post and we got caught up on what is going on with your boy. We want to let you know that we will be praying for Theo! I love your words of knowing that God will do great work through the story Theo will share someday of the first days of his life... my sister has a recent healing story that is miraculous to share and just confirms that God does heal! Our whole family will be praying for Theo... with love, the Lees