Trip to Denver
It is time to go to Denver and have Maddox I have packed for the family and myself knowing I have forgotten almost everything! We arrive to drop Maximus off at his Aunt’s and his Grandma will assist in taking care of the great Maximus while we are in the hospital. Naturally things are not going as I have planned Chad is working most of the day and I am overly nervous! We arrive in Cheyenne to drop off Max and Grandma is not there for the drop off. It is not what Chad and I were expecting and I am pissed. We are not in a good frame of mind and we are as nervous as we have ever been. It is the first time we are leaving Max over night and he will stay for 6 days an eternity in Max time! She finally arrives and we leave for Denver. We stop in Loveland for our last meal and all we can do is talk about our kids and what the future may bring. We stay in a hotel that I cannot remember the name of. That morning I shower I do not recall much of anything else but walking down to the lobby for Chad to get some breakfast and watching the people go by and thinking that they have no idea what is going on in my life or with the life I hold inside me.
Finally we arrive at the hospital Chad is having a hard time with knowing in 2 short hours he will see his wife cut open again and have a baby that may or may not survive. We are joking around trying to keep it light and not on topic of what is lying before us. Soon the nurse gets me hooked up to monitors and doctors start coming to explain the days events and what will be happening. Before I know it I am walking to a “sterile” hospital surgery room. Finally we get to the room and I am lying there butt naked from the chest down. The anesthesiologist starts injecting me and I was becoming numb from the toes to the chest. Even my nipples were erect and numb it was a very strange feeling. Dr. Perrecco makes his entrance and tells the nurse to prep me again he was not impressed with how she had done the prepping. They did and I knew he was in charge and everything was going to be ok and I was not going to die! Soon the room filled with doctors and nurses and everyone introduced themselves including Maddox doctor. Her name was Dr. Lawrence the most important person I thought in the room and I would not forget her face. Soon I was cut open and Dr. Perrecco says he sees a gush of black hair then Maddox swims up towards my chest and Dr. Perrecco has to push her down and out! She came out screaming and pissed. Dr. Perrecco said “are you sure this is a baby with Downs? She has great muscle tone”. And with that they performed some tests on her in the delivery room to the right of me. I can remember Chad looking at me and saying it is EA I just cried I thought she really could die. I prepared myself for this but I always held out the hope that she would survive. Dr. Lawrence brought Maddox over to see me; I was able to hold her for about one minute. She was so beautiful I could not get over her black hair it was almost overwhelming. I noticed right away that she was frothing at the mouth; I looked at Dr. Lawrence and said she has TEF to. And with that Dr. Lawrence and her team took her away to begin the VACTRAL.
As I was recovering Chad was with Maddox going through some of the tests. I kept asking the nurse if she had seen Chad or if she heard anything about my baby. She new nothing and she actually started getting concerned about what was going on. She took me to my recovery room and went off to see if she could find someone who new something about Maddox. My dad came up to be there for me and he was a life saver; he was there when I entered the recovery room and for Maddox surgery. When the nurse found Chad he was ready to be away from doctors poking and prodding his little girl. He confirmed that she had an (ASD) a 5 mm hole in her heart but that it was nothing to worry about that it was the good hole. He said that everyone is born with an ASD and that in most people it closes with time. He said that Maddox was crying hard and that would help close that hole. This was the best news yet that we were getting answers that we were wondering about for months with in a couple of hours of her being here. Dr. Shippman and Maddox’s anesthesiologist came busting into my room. I mean she was running! She said “why did you not call me! I was clear across town when I got the news I was doing the surgery!” Mind you this is 4 hours after Maddox was born. They had determined no heart surgery was needed and that they would repair the EA/TEF with a scope. I think that this was Dr. Shippmans first repair alone and she was crazy excited! The anesthesiologist drew pictures on how they would repair the EA which is the gap in the esophagus; we still did not know how big it was but we new we would have all the answers with in a couple of hours. This was relieving in a weird way. 4 hours after Maddox was born she endured her first surgery and 3 hours after that she was “fixed”. Maddox had a 2 cm gap in her esophagus (EA) and a fistula between her esophagus and her trachea (TEF). Dr. Shippman entered the room looking tired and proud of herself; she told us the great news and what we could expect for the next 5 days. Maddox was not to eat and could not be picked up. She would be sustained by fluids. They would take her blood everyday to check what carbs, proteins, fats, etc. needed to be supplemented for her to thrive.
Finally, the nurse came in to my room and said I could go see Maddox I remember it was dark out I was so excited and scared. I had to brace myself for all her tubes and what she would look like. Chad wheeled me down to the NICU. It was a crazy place to be in I never thought I would be there. I never could have imagined what it looked like the sounds, the smells, the nurses and doctors and the babies the sick babies everywhere. Chad and I got our badges to enter the NICU and made our way back to the last room on the left room number 4. There she was Maddox Rose was lying there with nothing but a diaper, a hat and tubes everywhere. The floor 3 NICU is a very loud place something I did not expect; there is always bells and buzzers going off. You soon and very quickly learn what all the sounds mean. But besides that there was my little girl she was so beautiful, she was so cute, I loved her. All me and Chad could do was look at her. We were not to touch her. We could talk to her but that was it. It is very unnatural for parents not to touch there baby. We learned very quickly that the nurses would answer most of question on how to care for our baby. Most of the nurses were amazing and talented they were teachers. But there was a few nurses that were challenged with working with parents one NICU nurse said to me “don’t worry you do not have to touch your child to bond with her” I can say I was visualizing that I was beating the shit out of her. The next morning 6:00 am my catheter was removed and I was instructed to start walking I walked straight to the NICU to see Maddox I could not get there fast enough. My next 3 days was learning about Maddox and what challenges lie ahead. The staff at the hospital were incredible there were people to help with breast feeding, social security benefits, and how we were going to pay for all of this! They even gave massages to women in the hospital it was great. I cannot explain the incredible feeling of helplessness you feel when your child is in the NICU. There are doctors and nurses that think there way to do things is the only way. Literally depending on the nurse it will depend on how your baby is swaddled to how they are fed. Some nurses encourage you to breastfeed some bottle feed or even if you should be involved in the care times. Care times are the feeding, changing diapers and taking your babies temperature. But no matter what no one could have prepared me for leaving the hospital with out her. This was the worst day! I cried the entire time we where checking into the Ronald McDonald House. Chad had to fill out the paper work and move us in. I was helpless. That night I just new I had to buck up and get over myself! I also new Maximus would be joining us and I needed to get things together for him. That Monday was a big day Maddox had her swallow test to see if the surgery was done perfect and if there were any leaks in the esophagus and if she would have to re due the surgery. Maximus was coming to join us at the Ronald McDonald House I could not wait to see him. By 3:00 pm Monday and 6 days after she was born we were told she had a perfect fix and now she needed to heal. 5 minutes later Maximus came running off the elevator and he looked like he had aged a year! He was no longer my baby he was my big boy with the best smile! Maximus is truly beautiful I missed him so much. A routine soon followed Chad would take Max to play dates all over Denver and I would visit Maddox. We would always come back together for dinner at the Ronald McDonald house. I can not explain how cool the Ronald McDonald house is; it child centered and made us feel so welcome. It truly saved us financially. By Wednesday only one week after she was born she graduated to the 7th floor NICU this was the NICU that babies are released from the hospital to go home! One by one all of the tubes were taken out. Pretty soon she was the only baby in the NICU that had no tubes. I got to stay the night with her in the hospital it was amazing and very exciting. I did not sleep a wink! On day 13 I received a call from the NICU that needed milk I rushed it over and the nurse told me we were going to be released from the hospital. We were going home! I called Chad and he began cleaning the room and packing. Maddox had to go through a series of things to be released including a car seat check. She had to sit in her car seat for 4 hours to see if she would survive! she did! we were told that she would have to go home on oxygen and not to stop in Cheyenne. It was finally time the room was cleaned and we checked out; we went to the hospital to pick up our baby! The funniest thing happened when Maddox was released from the hospital Max was playing with some kiddos in the waiting room; I said "Max come meet your sister" and he said "no he was playing"! Then he looked over and saw her in the car seat he came running over and "said is this my sister; I love her"! It was amazing! He then looked at Chad and said "can we team work her". Which means can they do it together! So Chad and Max carried the car seat with Maddie to the car. The next morning Max woke up and asked do I still have my sister! YES!!
Home has been good. Maddox is off oxygen, the pediatrician knows I like Maddie to be referred to as Chromosomally Enhanced! I do not like when people call her mentally retarded or put limits on what she will become. I think Maddox can do anything! I think she will go to College and fall in love. Maddox has a OT that comes in weekly to teach us how to stimulate her. She is amazing and Maddox loves her. Maddox is for the most part very healthy and strong. She smiles, giggles and loves her big brother. Did I mention she is really cute..She may be the cutest chic ever! I still have hard times and moments when I question my ability to be her mom. I still freak out that she may not walk which I know she will but I freak out because she has two webbed toes. I know this has nothing to do with walking but I can make something out of nothing! the biggest thing I have learned is that she really is a baby first and she does baby things!