Ian and Ryan's Story - Gaining Weight and Going Home (Again)

 Over the next few days Ian started gaining some weight. The new dietitian suggested putting Ian on a formula called Neocate. It was an amino acid based formula that is broken down even more than my breast milk and if his intestines just needed a rest, this would work well. Ian didn’t like the formula very much (I don’t blame him, that stuff stank!) but after a bit he took it without complaining. It probably felt nice to have something in his tummy. He continued to gain, much better than he had ever gained on my milk. Neocate is quite expensive, so we tried another little bit cheaper amino acid based formula (Nutramigen AA) but it didn’t work quite as well, so we switched back to the Neocate. Ian was a happy baby and when we came to visit him he was often either in ‘his’ mammaroo chair by the nurses table, or a nurse was holding him and they were visiting other patients on his ward. Soon he was known as ‘elf on the shelf’ in his ward. He loved all the attention. By December 24^th at 4 months old, Ian was 6lbs 2oz. The Dr. decided to take Ian off the TPN and try just oral feeds again. We were a little nervous but still excited. He continued to gain! He was also much happier and settled.

.

 All snuggled cozy in ‘his’ mammaroo.

Stop the TPN! Only oral feeds from now on!  

                       

 On December 25^th ‘Santa’ visited the Stollery and left presents for ALL 7 of us! So exciting! Gift cards, bath sets and a wallet for Dad and Mom, and lots of toys for the kids! Some thoughtful doctors brought Ian gifts over the holidays as well. One of the nice things about being at the Stollery in December is that there is lots going on, from hockey teams coming to visit and hand out gifts, to choirs and musicians performing. We weren’t able to be a part of most of it since most of our hospital time was spent in Ian’s room. One of the activities we were able to do was make gingerbread houses in the playroom by Ian’s room. The gingerbread houses are generously donated to the Stollery every year by a local high school. We also loved hearing the music while walking in and out of the hospital.

.

Waiting to open presents.    

Still so small. Chatting with Daddy.

.

Ian with the presents from ‘Santa’ on Christmas day.

On New Year’s Eve, Ian was doing so well we were allowed to take him home on a pass. We rang in the New Year as a family under one roof, at home. It was so nice to just be home for a few days and do normal things. On Jan 2 we took Ian back to the hospital, and he weighed in at 6lbs 10 oz. The doctor pulled out Ian’s PICC line and he was officially discharged. We finally had our little boy home for good! It was such a nice feeling! We had to go to the hospital every week for check-ups for the first few weeks, then every second week, and then every month. On top of that Ian had many blood tests, ultrasounds etc. We found out he had gallstones, but they weren’t causing him any pain, so the doctor put Ian on some medication to shrink them. Thankfully Ian didn’t need surgery to take them out yet, but if they did cause him pain before they shrunk then we needed to take him in right away.

.

         (Above)  Home on a pass (see the PICC line poking out of his right sleeve?)

We didn’t need meals organized and brought to us anymore, but friends and family randomly dropped off food, diapers, and gifts when they could, which was helpful. We received some money from a family from our church, and from some of Matthew’s co-workers as well. The deacons from our church also checked in on us often to offer financial help if we needed it. We were very thankful for the thoughtfulness of so many people.

The first few weeks Ian was home from the hospital, he had to get used to sleeping at home where it was quiet. He didn’t adjust well. For a while he woke up every hour and wanted to be rocked to sleep. We tried putting him in a swing at night, in a car seat, and then tried elevating the head of his bed like at the hospital. Nothing seemed to work. After a while he woke up every 2-3 hours and then finally he slept 6hrs and then 8hrs. Not sure what exactly it was that worked in the end, but it didn’t matter. We bought a baby scale so we could weigh him at home and one week after returning home (on January 9) Ian was 7lbs 6oz! Gaining like a pro! Ryan was 13lbs 14oz.  On January 17, Ian was almost 5 months old and finally 8lbs!! By 6 months old on their sister’s 2^nd birthday, Ian was 10lbs 13oz and Ryan was 17lbs 3oz.

 Lydia loves her little brothers! 

 Ian was a little small for age appropriate toys.

Medicine time (Photo credit - Bleubird Media).

Finally 8lbs!

Time to weigh Ian. 

Big sister helping out while Mom makes supper – She is a PRO!

A couple of superhero’s!

At the beginning of April Ian didn’t need to go to the hospital for regular appointments, he was done all his medications, and the doctor had okayed the switch off of Neocate formula which was VERY expensive - $50 for a small can which was about $400 -$800 a month in comparison to $23 for a large can - about $56 - $112 a month for Good Start formula. We had to do the switch slowly so we didn’t shock his system. Thankfully the switch went smoothly. Soon we were just dealing with normal life busy with 5 kids 6 and under, which was much less stressful than the past ten months had been.

  Twin Dad.

Photo credit - Bluebird Media