First continued from the day Kodi was born: The next day after my mom’s friend came and they went to lunch. Mike was on the way with the kids… The Pediatrician came and they told me to come down to the nursery. She told me I could have a seat in the rocking chair while she examined my little boy. Then she turned around got on her knees and held both of my hands in hers and said “I know you want the best possible care for you baby! I want this as well. I’m going to be honest I do now know exactly what is wrong with him but I feel we need to transfer him to Children’s hospital.” She had tears welling in her eyes about to leak out when she said this so very kindly. I was not in tears yet but choked out “Do you have any ideas?” She stated plainly “No. But the best thing I can explain is there are a lot of little things that just don’t add up right and they will know more at Childrens.” She pointed out some of the concerns. She was so kind. I think she was a Dr from Elk River. I don’t know. I never got her name. If she ever reads this “Thank you for setting a precedent for doctors everywhere. I can not tell you how many times I’ve wondered just who you were and how to thank you so much for your gentle compassion and honesty. I realize now not all doctors will be like you.” She was on my “best doctors” list that I had no idea was really going to grow very quickly! The transportation team arrived quickly and informed me they can not transport a baby with out a name. I thought “Where is my mom! I need her now! and her friend! Where are Mike and the kids!” I went back to my room shaking, weak and refusing to let the tears begin for fear they would never stop! I tried my mom’s phone. I tried Mike’s phone. He finally answered and said he was on his way. I told him we have to name him now because he needs to be transported. I said “I want to name him Kodiak because it means tenacious fighter! Sounds like he’s going to need a strong fighting name!” He said “Sure that’s fine and we will call him Kodiak or Kodi!” I heard Colt in the background in his 2 1/2 year old little voice whine “NOOOO! I wanted to call him WEEVI!” We could not think of a middle name so Levi it was! Now he was ready to be transported. I headed back to the nursery and they put him in his little incubator with oxygen, all the leads connected to monitors and the ambulance drivers were there waiting for me to fill out all the paperwork. My ob doc said I could also go and be with my baby. As I needed to be with him. I was not even there 24 hours. Mike got there with the kids just as they were about to take him away. My mom and her friend just got back from their lunch to face the shock. Again I fought tears. I got ready to leave and we practically followed the ambulance. We did have to make a stop however and when we got to Childrens they would not allow Symone or Colten to come into NICU as they had not had chickenpox nor been vaccinated for it. So my little ones were only allowed to see their newborn brother from the window for several more days. I was so thankful for the bonding they had with him the night before.
Mike and I walked in to NICU after getting screened and with our new badge photo ID and key. We were walking past preemie after preemie some so small they could fit into the palm of your hand. I got an extremely sick feeling in my gut. Why is my baby here? He’s not a preemie! Then I noticed each baby had a name on a sheet of paper with either a pink rocking horse or a blue rocking horse. I noticed a ton of Cody’s. Finally we got to our little man. He had a sign already as well. A brown teddy bear that said Kodiak. I knew right then we had the name right! I was shocked to see all the doctors, nurses, resident docs and others standing around Kodiak. Right away the NICU doctor starts off “Ok your son is blind, deaf, probably has heart and kidney problems and probably can’t eat…” She kept going on and on and I started to feel the room closing in on me. I was sweaty, and feeling nauseated. I began looking for a chair and one very sweet nurse of Kodiak’s quickly found a rocking chair and got it under me before I fell on the floor. Mike asked “Can we fix the shape of his ears?” I thought “Really? did you not hear everything else?” She handed me a sheet of paper stating they will do all kinds of testing on him to be sure but felt he has CHARGE Syndrome. I could not even read the words on the page. I began to get tears in my eyes. I was mad at myself for not being stronger for my baby now! They gave me instructions where to go to get everything I needed to begin pumping breast milk. Honestly I never did this with my first two kids so I have to say this was a bit of shock as well. They told me then to go home and rest. Now the tears flowed freely. Now I was like the mother bear needing to protect her baby. I did not want to leave my baby. I was so scared. Mike said he would take my mom, kids and I home and then come back and stay the night with Kodi. I was so hesitant. This is so unnatural to leave your baby less than 24 hours old. I went up to Kodiak put my finger in his tight little grip and said to his right ear “Baby mama loves you!” “Kodiak Mama loves you so much!” he turned his head to mine. Pulling myself away was so painful. The beautiful nurse who had Kodi one on one put her arm around me and said “Dear he will need you tomorrow. He will need you the day after, and the day after that. Right now you need to go put you feet up and get some real food and sleep. I will be with him and I will call you with updates. I will see you tomorrow. The nurse assigned his care tonight will take good care of him as well.” I relented. I was feeling so nauseated, weak and exhaustion was kicking in.
I cried and prayed all the way home! I did feel good to be home. But it was so painful! We got home to find people already had found out and were leaving messages on the answering machines. I began to make a plan for my family as well. I wanted us to still get supper time as a family. I would go during the days and Mike would go at night. So many friends began putting together plans for supper to be brought to our home and to give me rides to the hospital each day because they felt I needed the support. I remember how disconnected I felt to the world around me. I remember people driving me to hospital in rush hour in the morning thinking “where are all these people going? Do any of these people know there are 70 preemies fighting to live? How many of these people have ever heard of CHARGE?” it helped because when we all met back home at supper time we got a special meal together as a family that some kind person brought. My mom wrote down names of everyone that called. I remember on kind voicemail was left that made me cry every time I listened to it. Jeff and his family had such words of wisdom and stated what they prayed for us and Kodi about. A year later it accidentally got deleted and I really missed that message!!! Mike went to work and my mom watched my darling Symone and dear Colt at home. We’d meet at home for supper and then Mike would spend nights at hospital. We had no idea how long this would go on. But we decided we would take it one day at a time.
I remember telling my mom how embarrassed I was to be so weak in NICU and needing a chair. Her reply was “You had him just a few hours before that and got tons of life changing news all at once.”
I remember my kids pediatrician calling me from his cell phone expressing his concern about Kodi. He said he started getting reports on baby English and he couldn’t believe it either. He said call with any questions and that he was in good hands.
More on this as I remember…
Today I took Kodi to see Dr Feyma. Kodi is now exactly 4 feet tall and had now reached the 50 pound mark. Awesome little man! 2 years ago you had lost so much and was only 33 pounds. Dr Feyma felt we could keep meds the same for now. He felt that Kodi needed to get that communication better. Gotta tell you I’m very scared to switch meds. We need to see the psychologist .. and also we went to get labs to make sure everything is still good. Also because of Kodi’s scoliosis and instability in his neck that another xray is in order. This is great. I was wondering about both things. Dr Feyma is an amazing doctor. He’s also a new dad and I know he will be the best dad/husband to his little family. I will not relate what is going on but if you are reading this… I know some of what you are going through! Give your wife a hug for me and be strong for your girls. How you have helped me with Kodiak, your kindness, patience and genuine honesty I have no doubt you can do this. Kodiak actually also met Mary and what a sweet heart. We miss Kim but Mary you are awesome as well. So happy to finally meet you.
I heard from my old neighbor that I should call another old neighbor who is an attorney to help set up a fund for Kodi… I did call him and left a message. We have wrist bands that say www.ourbrotherkodiak.com and DEAFBLIND AND LIVES LAUGHS LOVES! They are brown for the grizzly Kodiak is and the pink is for the girls in the family and blue for the boys. The book is Symone and Colten’s story the blogs are more mine and Kodi’s.
We came home and I took care of other things involving Kodi’s care and got some things figured out at well. I’m still trying to be able to focus and recover from the concussion a month ago. This is what happened in an unguarded moment when Kodi was mad. He head-butted me really hard in the face. I don’t bruise easily. Photo is few days later. I find I’m asking people to repeat what they just said less and less and I’m not having to move and turn quite as slow. But I don’t think I’m ready to run a 5k yet 🙂
My precious other two got home from school and tackled their piles of home work. We ate supper, planned the hunting trip Colt is going on beginning Monday and Symone’s girly spa party. Symone wanted to do my hair… she’s into doing hair styles… So I sat and did some blogging, computer work etc all while she was playing with my hair.
Kodiak was very happy today. He giggled, wiggled and played a ton today. He was happy to have his mama! I signed in his hand “Dr F E Y M A” to him and he did not push my hand away rather he really seemed like he paid attention. I also signed “nurse M A R Y”. I love my babies… all tucked into their beds now. I’m going to join them in the land of slumber… If I can sleep.
Thank you everyone for caring!