July 2, 2020
Woke with a headache this morning. Connor has an MRI. With AMC they just want to check over EVERYTHING because sometimes AMC can have/cause underlying health issues. Everything went well. His brain is in perfect condition! Later on that day we were told we were going to be moved to a different NICU pod. The one we were in was basically a high tech baby nursery.. now they were moving us a a complex pod because Connor has so many different consultations with so many different doctors that it just made sense to be there. So many different docs came in to see him one we moved, only because he was new to the pod and needed to be assessed by everyone. It was a nice room… accept no bathroom and this room did not have decent sleeping arrangements for Brent and I. Just a hard pull out couch… yay. But the social worker came and spoke with us about that and got information for the BC family residents program. This program pays for hotel rooms for families who have children in the hospital. So we don’t have to pay for anything. It was all great.. accept the company closes at 3pm and we only got told this after 3. So one night was spent on that couch. It was a long night, and by now I was pumping every three hours. So sitting up and laying down every three hours was hard.
July 3,2020
Heart ultrasound first thing in the morning. So the tech came in and started the process.. then a cardiologist came in.. looked at me. “You’re white?” he hadn’t been expecting a white family. He saw the last name ‘Funk’ and was expecting something different I guess lol He then asked what our baby’s first name was and I replied Connor. His response was like “that doesn’t go with Funk” I laughed. This guy had great bedside manners and was joking. He also said he wasn’t racist, but Funk didn’t sound like a white name lol!! His heart had a small hole in it, but they weren’t concerned. We were told to come back for another ultrasound in 6 months. They also wanted to do another attempt at the picc line 9am today. But in a different room. Connor was going to be partially sedated so he couldn’t eat anything past 7am. Well, it got pushed up to 1:30PM… My poor boy was hungry and had to wait so long for his next feeding. At 3pm they brought him back! The Picc was a success!! So tomorrow the IV in his head could come out!! BC family residents program got back to us and we got placed into the Sandman Motel. It was about a 10 minute drive from the hospital. Leaving that evening was very hard for me. I did NOT want to be away from my baby. I didn’t have a pump, since I was using the hospitals pump. So we had to got walmart and find an affordable one. We found a small hand pump that would prefect for the nights away. Connors nurse gave us a phone number that we could call at anytime to check on Connor. It was kind of nice to have our own bathroom and a soft, comfortable bed. We slept so much better there. I saw one small ant on the bathroom floor.. other than that, it was a small room and quite clean.
July 4,2020
Was sure nice arriving back at hospital and seeing Connor again. It was weekend so nothing happened really besides the nurse checking him periodically. They told us we were very active with Connor, we were taking their jobs away from them. She said it in a good way. We made her job easier. They did say we didn’t have to do anything, but we wanted to. That way going home wouldn’t be a bigger then shock then usual. We worked on Connors stretches, pumped and fed every 3 hours, and gave lots of cuddles <3
July 5, 2020
Happy Sunday! We got to the hospital early enough to feed him, eat breakfast and watch our home church online. What a blessing technology was at this time. No appointments today. So more stretches, cuddles, and we watched some tv on our ipad.
July 6, 2020
Connor had an ultrasound on his abdomen this morning, just making sure everything is working like it should. The Physical therapist came to asses him again, other than that we are working on his feedings. We had quite the walmart list today. Stuff for Connor and for me.
July 7, 2020Connor graduated from an incubator to a crib this morning! Which means he can officially regulate his own body temperature! The occupational therapist came in today and we attempted oral stim(feeding milk through syringe) and he successfully took 4ml! They also mentioned getting splints for his hands/wrists. The OT was really encouraged with how far Connor had already come since she saw him last. I was still feeling a little down… more or less homesick. But then the nurse came in with a pkg and gave is to me. One of the churches back home sends homemade baby quilts to the BCCH and connor got one. Brought up my spirits.
July 8,2020
We tried nursing this morning. He latched, but didn’t get anything. He has a very weak suck. He had the right idea.. but nothing. Oh well, try again another time. After rounds this morning we found out we might have to stay here for the entire casting process for his clubbed foot… 6 weeks. They hadn’t even started it yet. The thing is, they want to start it now.. but if there is no one in PG who can take over we need to stay. I was getting depressed. Today is the last day of antibiotics.. and technically we were allowed to leave after that. But they diagnosed is AMC and want to work on his foot now too. And he still isn’t eating on his own. I just want to go home. On the bright side, his picc line is coming out tomorrow!!!
July 9,2020
Woke up late this morning.. oops. Oh well, when we got to the hospital, Connors picc line was gone!! YAY! I can officially give him a bath without having to worry about IVs! So remember the day I had to get blood work done? Yeah, all done in vein….(no pun intended :-D) they refused to test my blood because I wasn’t showing any symptoms of this genetics disorder… so now they are drawing blood from Connor… again! OH! He also got his splints today and they are the cutest things EVER!! We also worked on more feedings today, Connor drank 4ml from a bottle, twice!! One at6pm and one at 9pm!
July 10,2020
We arrived at the hospital this morning and our little man was still sleeping. I ended up changing my pumping schedule at night so I could get more sleep. By now Connor was only drinking my milk and didn’t need anymore formula substitute… and I was over producing, so I didn’t need to pump so often at night. Now I pump at midnight, 4:30, and 9am. Before it was midnight, 3,6, and 9. I still pump every three hours during the day. Connor took 10ml of milk through a bottle at his 6pm feeding and again at his 9pm feeding. Super awesome! Physical therapy and 2 other doctors came to our room to examine his foot. They sent us down for some x rays. Have you ever watched them x ray a baby? You have to lay perfectly still.. they had him strapped down with sheets and tape.. my poor boy was screaming the entire time. I had to watch from behind a wall. I just sat there and cried. It looked so harsh. I know this is how it has to be done.. it just didn’t look good. Once we got back to our room I wrapped him in our grey fuzzy blanket. It puts him to sleep almost instantly
July 11, 2020
Happy due date Connor. He surprised us by drinking 6ml through a bottle at his noon feeding, 13ml at his 3pm feeding, and 15ml for his 9pm feeding. Thankful for improvements. The goal is 60ml at every feeding without problems for a few days in a row before they will release us. Back to our room we go.
July 12,2020
It is midnight.. we both haven’t slept at all yet. I was getting one more pumping session in for the day… Brent is watching tv and asks me for the box of crackers on my nightstand.. without looking, I toss it to him.. “Jo, look” he points to our bed. Ants.. like 10-15 of them crawling in the sheets. We both jump out of bed.. he goes to my nightstand and its just crawling with ants. We immediately pack up everything and head down to get a different room. So they put us in a new room. Dead ants over the floor. We make the decision to sleep on he hard bed in the hospital.
We got to the hospital around 1am and explained to our night nurse what had happened. She was ok with us staying in Connors room. Long night again. Couch hadn’t gotten any softer lol. Woke up the next morning and Brent went to the store to grab us some food. It was Connors feeding time and so, independently, I got his milk ready in a bottle and started to feed him. He took 20ml. And when Brent got back he realized I had been using a regular flow bottle nipple…. Connor was on an ultra flow. I felt horrible. He could have choked and he didn’t cough yet so it could have been bad. Once OT caught wind of my error, she was impressed that Connor did so well and changed his ultra slow to a slow nipple. Brent and I decided to go on a lunch date. 1)we wanted to pick up a small foam for the bed we were sleeping one and pillows, 2)my aunt said she wished she could buy Connor a gift and bring us a meal.. so instead she sent us some money. And with that money we bought Connor some books and Brent and I went to the Old Spaghetti Factory for lunch.
I will stop here for today. But I just want to say something first… I am not writing this or sharing this to get sympathy. Other families have had it far harder then we did. I am sharing this because I am hoping to be an encouragement so someone experiencing a NICU journey. Have a good evening everyone
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Signing off – Jolene
