June 29, 2020
Woke up to the nurse and doctor trying to draw Connors’ blood. They couldn’t find a vein, so they got blood draw from his scalp and that is also where they inserted his IV for his 10 days of antibiotics. They told us that morning that he was jaundice and had to be under the blue light for 24 hours. He laid there completely naked, besides a diaper and his mask, under the light. His bed was heated but he was cold. It was very hard to for us, as parents, to watch… I will insert a picture yet.. We had an appointment with the Genetics doctor that afternoon, to see why his arms look the way they do, and why he wasn’t moving them. I was so tired I ended up falling asleep during the appointment, and Brent got all the information and then relayed it to me later on once I was awake. The doctor gave us the diagnosis of Arthrogryposis Multiplex Congenita.
(arthrogryposis multiplex congenita {AMC}, is a term used to describe a variety of conditions involving multiple joint contractures {or stiffness}. A contracture is a condition where the range of motion of a joint is limited.)
We were told that a physical therapist and occupational therapist were going to come yet to help with stretches and feedings. I also started pumping today. Mind you, it was such a little bit that I was super discouraged. I was told It would increase. The nurse put the little milk I had and gave it to Connor through a syringe. That night he cried often. Which made me cry. I couldn’t pick him up or cuddle him. He was cold and I just wanted to warm him up, but he needed the light.
June 30, 2020
(this day was the most traumatizing for us.)
This morning we had a good nurse, she was our absolutely favorite nurse the entire time we were in the NICU. We had her 3 times. She was like a grandma and was really encouraging and understanding. Connors jaundice was gone and the blue light could go! Doctor came in and mentioned the Genetics doctor wanted me to get blood work done to see if I had a genetic disorder that can sometimes be passed down from mom to baby. Physical therapy planned on coming to see Connor at 2pm to start the stretching process for Connors arms. Around 11, we went to get my blood drawn and then went down to the women’s clinic to get my staples removed. From what our NICU nurse said and what I read online, this was suppose to a rather painless process. We had planned to back with Connor around noon. After we got checked in, and brought to the exam room, we waited till almost 3pm for the doctor to come remove them. When she finally came, she apologized for the wait and explained she had been in surgery till then. She took off my bandage and examined my incision. I asked if this was going to hurt and she said she doesn’t remove staples often. They used dissolvable stitches because it is painful to remove them. She pulled the first one out. That was the most pain I have ever felt. And there was 11 more to go. I cried so hard with every single staple. I felt sick. Brent was watching and said she wasn’t very gentle and figured he could have done a better job. When she was done I was basically sobbing. I felt sick and weak. They brought a wheel chair because walking wasn’t an option at this point. I was in such bad pain(!Spoiler! Once we were home and I saw my doctor and explained what happened. She told me, they didn’t use staples… they used skin clips, And it isn’t suppose to hurt. There was a special tool to remove them… And thinking about it then, the nurse in Prince George had sent along a tool to take them out.) We stopped at the second cup, on our way back to Connors room, for a late lunch. Later on that day our nurse told us they wanted to insert a picc line into Connor so they wouldn’t have to change his IV so often. A picc line is basically a hair thin line inserted into his arm and sent all they way to his heart. It’s not in his heart, just right up to it. It is a procedure they do with x ray to guide the line and Connor, possibly sedated. It was already late and we wanted to go eat. The Picc nurse came and explained what they were going to do and how it was done. So around 10pm, we went for dinner so we would be out of the way while they did it. We waited a while. When we returned, expecting it to be done so we could go to sleep, we find they haven’t even started yet. We also fine out it can take up to 3 hours from start to finish. They brought us to the family lounge. A small room with a chair and a small couch that turned into a bed. We requested they come and get us when the procedure was done. Brent got the bed ready so we could sleep, while I tried to pump. But I was so tired, stressed, and emotional that I wasn’t getting anything. So I gave up and tried to sleep… but the hospital couch/bed was so hard.. I couldn’t lay down without being in such bad pain. Brent saw I was struggling, so he turned it back into a couch and sat in such a way with pillows up against him so I could lean up against him and try to sleep. He said prayer was going to keep him awake, so I could get some rest. I leaned up against him, and started to cry uncontrollably. Everything came out, my pain, fear, stress, everything. Here I was a new mom, in a big hospital without my mom. My newborn son was sick and I couldn’t help him. I have never been so tired in my life. I know new parents already get such little sleep.. but this was different. I was physically, emotionally, and mentally exhausted. I hated being away from Connor. I wanted this nightmare to be over. Brent managed to calm me down enough for me to fall asleep. And I did. Instantly. Around 3am Brent went to see if they were done. They couldn’t get in. Brent came and got me. We finished that night in our own room. Brent hadn’t slept at all yet so he went straight to bed. I pumped a little more and went back to bed.
July 1, 2020
Canada Day. No appointments. We hung out and cuddled our sweet boy today. After such a hard day, this is exactly what we needed. I got into a pumping schedule, and my supply started increasing to the point of being able to give Connor half of his feeding, my milk. I really wanted to breast feed but he still wasn’t latching. So he was still tube fed.
I will stop here for today. Connor just woke up from his nap and after re-reading my journaling, for the first time, about this, I am ready for some cuddles from my favorite little person
signing off – Jolene
