This is my sweet little Eli. He really is the sweetest little thing. He is doing really well and was moved up to full feeds today. The NG tube should come out tomorrow if he does well through the night. He also has his hearing screening tonight. Tomorrow he has his car seat test. Preemies have to sit in their car seat for over and hour and make sure their stable. I guess it is time to get the car seat out of the garage, wash it and load it back into the car. Hopefully, if all goes well he will be coming home in the next few days.
We were really excited when we heard that news this afternoon. Going back and forth to the hospital is exhausting...the parking, the walking, the constant hand washing, making sure we have all the pump parts and milk. Whew...we will be thankful to have our family all under one roof.
My excitement was somewhat shattered when the lady from the spina bifida clinic met with us later this afternoon. Eli's lesion has always been labeled at L5. Today we were told that the orthopedist said that it was L4-L5. Then she said that the report said that his functional level was more like L3. I think we were both very taken back. I was devastated and Kev determined that he wouldn't accept one resident's opinion. I am sure to many this difference means very little but in the spina bifida world it can be huge. It can be the difference in being in a wheelchair or being a walker. The most upsetting thing was that he thought his functional level was worse than the higher lesion level. I am sure I am going to have to learn to not let things like this crush me....but it is so hard when it is your child.
I look at his sweet little face and I want nothing but,...normal for him. I want him to be a normal little boy without all the struggles and issues of spina bifida. I want him to run and play soccer and be able to keep up with his two big sisters. We also learned that the same doctor thought that his hips might be dislocated. This could mean a lot in the future in terms of surgery, casting, etc.
I am scared...honestly, scared to death. I am craving my old normal and trying to embrace this new journey we are on. I think back to Ella and Eliza's newborn days and honestly they were the most exciting days of my life. I hate that Eli's newborn days are overshadowed by my fears of the unknown. Please continue to pray for Eli as well as the rest of our family. I could really use prayer as I learn to care for 3 kids. I am also still not feeling back to normal and I am so ready to feel good again. Please pray for Ella and Eliza. They have both been very clingy and I am sure having a new baby will be an adjustment for them (esp. Eliza). Please pray for Kev as he is still looking for a job, a new car, and trying to regain his energy after his car wreck. Please pray for Eli and his little legs and feet. I will continue to pray that God will do more than we or his doctors would have imagined. Thank you so much for keeping up with our family and for praying for us through this very challenging time in our lives.
5 comments:
Praying and thinking about you daily!! I can't imagine what you are going through and how exhausted you and Kevin must be! Can I just say, little Eli is SO CUTE!!! I love his blonde hair!!!!! Take care and since I can't be there to help you, I will continue to pray for everyone!!!
Don't ever take much stock in what doctors tell you he can or cannot do. I remember an almost exact convo when Ruth was in the nicu. For one, how can you really tell on a preemie, they do nothing but sleep. I will tell you, Ruth is an l5, was told in the nicu she functions like a l4, but today at one year, she is pulling up to stand, crawling, trying to cruise along furniture. As hard as it is to hear, those levels mean nothing. Sweet Eli will do what he will do, regardless of what doctors try to label him. Hang in there!
Sending prayers and hugs your way. Your little boy is absolutely beautiful.
Julie, Eli is adorable! I think you are beautiful and are looking AMAZING too, even if you don't feel iike it! He is such a little miracle, and I know you have so much to thank God for: that he was born, that his incision healed so well, that he's breathing, has eyes that can see you when he stares up into your face, and ears to hear you sing sweetly to him and on and on and on. God has a plan for him and knew him before he was formed withing your womb, as you already know. I can only imagine what it must be like to try to stave off worries and anxieties about a child's future, but we know who holds it in HIS hands, don't we? And in Him is our hope and our future....He has a plan to prosper and not to harm. Your sweet blessed Eli is such a treasure and is such a testimony to God's greatness. We will continue to pray for you as you embrace this next phase of your journey, and we look forward to getting to see Eli in person sometime soon. Of course, as always, let us know of anything else we can do to help.
I had many of the same feelings when we found out our little guy was going to be born with a disability. Now 5 years later we love our life with him. He amazes me everyday, but that does not take away the heartache we carry as moms. I am not sure if you read this poem but it has made an emence difference in our lives.
http://bringinghomeholland.blogspot.com/2011/01/our-journey-with-dwarfism.html
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