Ian and Ryan's Story - Out of ICU

After just over a week in the NICU Ian had recovered from his pneumonia and was transferred to a room. The day they moved Ian to his new room we didn’t have school bus service. I had waited most of the day for Ian’s room to be ready, and then finally shortly before I had to leave to pick up Miriam and Dylan from school the nurses moved us to Ian’s new room. I had a minute to say hi to Ian’s new nurse and headed out the door to pick up the kids. I drove 40 minutes to the school, picked up the kids, and headed straight back to the hospital to talk a little longer with Ian’s new nurse.  During this time, we as a family fell back into the ‘hospital routine’ but this time without my sister Nicole to help or babysit at home. I visited Ian for a few hours every day with 2 – 4 of his siblings. Matthew usually visited in the evenings, while I stayed home to get laundry and cleaning done. By mid-December my milk supply had dwindled to pretty much nothing, the stress had finally gotten to me. I had a bunch frozen so I knew Ian would be good for a bit. By then Ryan was on formula because my supply had been going down for a while and I wanted to save as much as I could for Ian, since he had the intestinal problems.

Ian’s new room. 

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Playing with their new toys (donated to the hospital).

                                                           

By December 13, Ian was 5lbs 15oz. He was gaining quite a bit while on TPN and lipids (IV nutrition and fats) but you could see in his skin color that his liver was suffering. The doctor wanted to keep him on TPN for a while to give his intestines a rest and so Ian would get a little bigger, then they would try feeding him little bits. We agreed this would be best for Ian in the long run. So much of Ian’s life so far he had not been allowed to eat, poor hungry little guy.

 During December the old car we had bought for Matthew to drive to work in everyday broke down…on a freezing cold -35 day. I packed up the kids and picked Matthew up. The next day, Friday, we woke up early, packed the kids in the van and drove Matthew to work, I went to Walmart with the kids to run some errands, and headed to the hospital to spend some time with Ian. The kids stayed ‘home’ from school many days during Ian’s time in the hospital since it was often impossible for me to get them to the school and/or home again some days. I was very thankful the hospital had a TV in Ian’s room, and a play room close by, those made it much nicer for the kids when they came with me. In the afternoon we left the hospital and picked Matthew up again. Thankfully we were able to buy another car on the weekend. As a family, we found the time to do some Christmas baking, some to bring to the NICU, some for the teachers and staff at school, and some for us at home. My sister-in-law Rachel and I also made Dutch kroketten (delicious deep fried meatballs). We read bedtime stories together when we could and tried to act as a family, even though one of us was missing, and we were busy and stressed at home. 

Dr. Dicken came by to see Ian often, and Ian was doing well. December 16 He said things looked great, and since Ian was on all oral feeds now he just needed to gain the next day, then he could go home. We were so excited! Ian would be home before Christmas! The next morning when I got to the hospital the nurse said Ian hadn’t gained, and his sodium was at 14 (it should be at 40) They put him on a sodium supplement and decided to put in a PICC line because Ian needed to go back on TPN and lipids (a PICC line lasts longer than a normal IV, this way they wouldn’t have to poke Ian so often). Dr. Dicken also said he wouldn’t be able to see Ian daily anymore. Normally he would just follow patients after surgery till they went home. It looked like Ian would be here a little longer, so a new doctor (Dr Persaad) from the Gastro-intestinal team was going to be following Ian. We also got a new dietitian. Before he left, Dr. Dicken talked to me about the possibility of Ian going home on TPN, and if that was the case, I would be taught how to take care of his equipment at home. I was so disappointed, I guess Ian wouldn’t be home for Christmas after all. I cried for a while that day. I was so tired and busy and stressed, the housework, laundry and bills were piling up, with no time to tackle them. Besides the meals that were made for us by our church family, our meals and snacks consisted mostly of fast foods, and anything I could find that was cheap and pre-made or pre-packaged. I had lots of offers for help but no time to organize them. Our house was in livable condition, it just didn’t look very nice, and we weren’t hungry, we just weren’t eating very healthy food. It seemed Ian would never come home. Most of all I just wanted to know what was wrong with my baby and have a plan that worked and made him gain and get better. I didn’t like seeing him so hungry and uncomfortable.  We settled back into a ‘hospital routine’. One evening on the last day of school before Christmas holidays we packed up all our gifts and opened them as a family in Ian’s hospital room. If Ian couldn’t be home for our family Christmas festivities, then we would bring what we could to him.