Ian and Ryan's Story - Home

Monday July 28, in the afternoon, Ian was ready to go home! He was eating, peeing, pooping, off all meds. He was just a little sleepy. Some friends of ours ordered us pizza, Matthew picked it up from home, brought it to the hospital and we had a little pizza party. After we were done Ian was discharged and we went home!

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 Ryan and Ian in Ian’s crib. 

The kids spying on me through Ian’s window in the pediatric ward.

                     

On August 23^rd we celebrated Ian and Ryan’s first birthday!

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Ian     

 Ryan

Ryan (left)                 Ian (Right)

                            

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For information on early detection and treatment options for TTTS, please visit:

www.tttsfoundation.org 1-800-815-9211

Ian and Ryan's Story - Back to ICU

On Saturday July 20^th at 11 months old, Ian caught a cold which caused him some respiratory issues. Matthew took Ian into emergency Sunday morning with labored breathing. Late afternoon I arrived with the kids, and some food for Matthew. Matthew went home with the kids, and I stayed with Ian. They did a chest X-Ray on Ian. (I hate those contraptions they put babies in to take the X-Ray, they are so scary to them.) The emergency doctor admitted Ian because his symptoms were not improving with treatment. The doctor in emergency said Ian had Bronchiolitis.

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At the hospital again…

Overnight Ian’s breathing became more labored and he was getting very tired. I was able to doze off once in a while but Ian was working so hard to breathe I woke up every half an hour or so, because he would whimper a little. Then the nurse would come in and give him stuff to help him breathe. Early Monday morning the nurse called the rapid response team for Ian as his oxygen was too low (he was on oxygen already). They decided to put him in the PICU. (Pediatric intensive care unit). Once I knew where Ian’s room was in the PICU, I left to go pick something up for breakfast. I hated seeing my baby be poked for blood and IV’s, and tubes being shoved down his throat. When I got back they told me that once Ian arrived in the PICU they had sedated him. Because he had been on so many meds in his life, Ian took a bit to sedate. They put in another IV, and intubated him (tube through his mouth, and into his trachea - just above the lungs). Soon after I got into the room a doctor tried to put in an arterial line (a thin catheter inserted into an artery, it is a fast and accurate way to measure blood pressure, and get blood gas samples), and on the third try he got it. The doctor tried to put in a central line but after three tries he gave up. It took a few pokes with Ian because he had had so many IV's in his life. Normally they would have booked an OR to put in a PICC or Central line, but there was no time for that. In the PICU, they just sterilize an area, and do it right in the room. I noticed they had a different color for all the sterile blankets, tool kits etc. I asked about it later and the doctor said they even do surgeries in a PICU room if they have to. After the PICC line was in and they had stopped trying for the central line, Ian started waking up and fought the ventilator by trying to breathe on his own. By doing so he completely collapsed both lungs. His oxygen went down to 15%, when it should be 100%. All of a sudden there were doctors and nurses everywhere. Eventually they were able to get Ian's oxygen back up by hand 'bagging' him. Ian needed 80% oxygen, and the ventilator was at a pressure of 38. Every time they stopped bagging by hand and put Ian back on the ventilator his lungs would collapse and they would have to bag him up by hand again. The doctor told someone to get the lung bypass machine – the ECMO machine. (An ECMO - is an extracorporeal technique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function - Wikipedia.)  Someone explained to me that they would need to cut a large hole in Ian’s neck, insert the tubes through that hole following the jugular and put them into Ian’s heart, the machine would do the work of Ian’s lungs so his lungs could rest and heal. While they were bringing the ECMO machine down, the RT (Respiratory Therapist) and Dr. Jon Duff the Intensivist (critical care physician) decided as a last resort to try a different mode on the ventilator (Bi-Vent - a mode not usually used on babies/children.) I could hear them talking, and although I didn’t understand everything they had said I understood enough to know that this was a long shot. It worked!

During that intense time, the room became very quiet and little was said – Ian was dying, and I prayed, not letting my eyes leave my baby. The Intensivist and head RT glanced at me a few times. I was sitting on a chair by the wall and outwardly I looked pretty calm for a mother watching her child die. I wasn’t crying, not even tearing up, just sitting there watching the monitors, watching the medical team work on Ian, listening carefully to everything that was being said. I knew when the doctors glanced my way that they were talking about me. Later Dr. Duff explained they had had a conversation about me, and wondered if I knew what was going on. They concluded that I did, and continued working on Ian. Every few minutes someone would stand back from Ian’s bed, ask if I was ok, and ask if I had any questions. I was very thankful for the caring bedside manner everyone had. Now that the ventilator was on bi-vent and keeping Ian’s lungs inflated they parked the ECMO machine outside Ian’s door just in case. If the bi-vent mode continued to work they wouldn’t need the ECMO. What a relief. They gave Ian boluses (shots) of Rocuronium to medically paralyze him. Ian’s oxygen levels went down to 7% while we were there at one point and there was some talk about putting him on a different machine (a nebuliser – basically it shakes the lungs to loosen phlegm), but he never needed the nebuliser.

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The Intensivist said Ian's lungs were very tough to inflate, worse than he'd seen in about a year which is quite something considering the Stollery gets critical patients from all over North America. With this bi-vent mode they would keep Ian's lungs inflated for 3.6 seconds and only let air out for 0.3 seconds. Very quick ‘exhales’. Normally, if someone needs help breathing and is on a ventilator they would let air out for closer to 3 seconds. The Intensivist in the PICU said Ian was acting like he had a very bad case of pneumonia. Interestingly, IUGR babies (and therefore most TTTS donors), preemies and babies who previously needed ventilator support are at a higher risk of contracting pneumonia.

It was so sudden that Ian was back in the hospital in life threatening condition. Life had changed so fast. We barely had time to process it all.

On Tuesday Ian had improved slightly. His lungs sounded a bit better, but Ian was still “very very sick.”  That's how one of the doctors described Ian’s condition during rounds that day. I tried to be at the hospital in time for rounds every day, but it was difficult since I didn’t like asking people to take my 4 kids at 7am. My sister Rebekah, sister-in-law Linda and mother-in law were able to babysit early most days so I could make it in time. During rounds, the doctors would go over Ian’s medical history, and decide what could be done next. Then they would ask me if I had any questions about anything or if I had anything to add – in the Stollery the medical teams really included me in the medical plan for Ian. If I missed rounds, and the Intensivist Dr. Jon Duff saw me walking in, he would personally fill me in on everything that had changed and ask me if I had any questions. Ian's oxygen levels would go up and down, depending on how relaxed he was and if he was trying to fight the ventilator. We were so thankful Ian was is in the Stollery. The medical teams there are amazing! Always ready to answer my many questions, and quick to explain things. They are friendly and personable. When things got intense and scary in the room, someone always asked how I was doing and if I knew what was going on.

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There is always at least one nurse at the bedside in the PICU (and the NICU)

On Wednesday they were decreasing the pressure on the ventilator a little every 4 hrs. The ventilator was still in the bi-vent mode. But little by little the pressure was turned down from 38 to 20. So much better! Ian woke up every once in a while, often when he heard me talking. He was awake just long enough to move his arms and legs a little. Then they had to give him extra sedatives and they put restraints on his arms, and he didn’t have much strength to fight those. Ian didn't open his eyes quite yet and I’m not sure he could with the doses of pain meds he was on.  On Tuesday, whenever he woke up a little he would desat. Wednesday he wasn’t desatting when he stirred, but they did still give him extra boluses of drugs (Midazolam and morphine) on top of what he was getting in his IV (morphine and chloral-hydrate - The continuous infusion of chloral-hydrate is a study we agreed to be a part of so that Ian didn’t need as many narcotics which seems to help get patients extubated quicker). I talked to Dr. Duff that day and he said Ian was responding well to treatment and they were hoping to extubate Ian on Friday. Normally when a child has lungs as sick as Ian’s the doctors wait 7-10 days before extubating. This doctor thought Ian was doing so well he could be extubated in 4 days! I wasn’t really counting on Friday, but was still hoping.

On Thursday (I think) Ian and I had a special visitor. The dietitian that had helped us in the hospital after Ian’s third surgery and later at doctor visits had noticed Ian’s name on a list of patients, so she came by to say hi and visit. We hadn’t seen her since the beginning of April and she was surprised at how big Ian had grown! 

Friday morning they waited for me to get in to do rounds, and during rounds they decided to go ahead with the plan to extubate Ian. They stopped the sedatives and waited for them to wear off. At 2pm Ian was finally ready. Because Ian is such a charmer even when sedated and intubated, he had lots of adoring nurses, respiratory therapists, doctors and medical staff watching the exciting event. The room was full of people. Ian did very well, he didn’t even cry!  We all cheered! Ian was extubated only 4 days after being intubated! I was so proud of him! When I left shortly after, Ian was still on oxygen and doing great. Such a tough little guy!

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Just extubated!   

Ryan visiting Ian in the PICU.

                                                                             

Saturday we all came to see Ian as a family. He hadn’t needed oxygen all night and was going to be moved out of the PICU soon. Matthew stayed with him overnight Saturday.

Sunday morning I came to the hospital with the kids, and we worked out a plan so we could all go to church in the afternoon and then I would go to the hospital and spend the night with Ian. 

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.

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 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.

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Waiting to open presents.    

Still so small. Chatting with Daddy.

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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.

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         (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

                                                                                    

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.

Today is TTTS Awareness Day!

If you or anyone you know is having twins please look this up. Some doctors aren't aware of the treatment options, the need for regular monitoring, and how often TTTS develops in identical twins.  

For information on early detection and treatment options for TTTS, please visit:

www.tttsfoundation.org or call 1-800-815-9211

They are quick to answer questions and help in anyway they can. 

Ian and Ryan's Story - Back to the Hospital

Ian gained weight VERY slowly now that he wasn’t on IV fats and nutrition. At 3 months old Ian was 4lbs 8oz (November 22), he had gained 5oz in 33 days. Not much for a baby his age/weight. We met with Ian’s surgeon Dr. Dicken a few days later, he said Ian needed his re-sectomy (re-attach his intestines so he could poop in a diaper again) ASAP. Ian had a pre-op contrast enema (Test to see the intestines on an xray) on November 26, and was admitted to the Stollery NICU on November 28, 2013 (back in the NICU not PICU because Ian was so small). It was extremely hard to leave my baby at the hospital that day. I’m sure even at his young age Ian knew the sights and smells of the hospital, because when we walked into the hospital that morning he started to fuss and looked worried. I put him in the ‘giraffe crib’ and he started to cry. While the nurses poked and prodded him for an IV there was no room for me by his bed. I walked over to another part of the NICU and noticed a friend of mine who had just had a baby. He had come too early, and needed to be in the Stollery NICU. He was so cute laying there, so small and so perfect. We chatted for a bit. In the background I could hear my baby screaming while the nurses tried to find a good vein for the IV. After a bit I headed back to Ian’s crib, settled Ian down, chatted with the nurses, gave them an instruction sheet on how we had been changing his ostomy bag if they needed to change it that night, and set up the mobile we had bought to distract Ian. He looked so scared and sad. I left early in the afternoon, picked up Dylan, Lydia and Ryan from a friend who was babysitting that day for me, and headed home. Matthew went to visit Ian that evening. Since I had left the nurses couldn’t get Ian to settle down, he was crying and crying and he wouldn’t eat. When Matthew got there he was able to get Ian to eat a few milliliters and settle him down. 

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Ian in the NICU again. His new mobile from Daddy and Mommy distracted him momentarily.

Ian’s 3^rd surgery was easier on us than his 1^st and 2^nd one had been, because Ian was older, a little heavier, and I was excited I wouldn’t have to change ostomy bags anymore. The surgeon only expected Ian to be in the hospital for a week, 10 days at the most. Matthew and I arrived with Ryan early that morning. The nurses told us that Ian had had a rough night, crying and he wouldn’t eat, so they had given him something so he would sleep. We snuggled Ian for a bit, met with Dr. Dicken and walked Ian down to the operating room. We left him with the nurses just as they were wheeling him into the OR. We decided to walk to a nearby restaurant for lunch, since we knew the surgery would be at least that long, and if anything bad happened they had our cell numbers. Shortly after we got back to the hospital Dr. Dicken came to find us and let us know how it went. He explained the surgery had gone very well, he had cut a little more off Ian’s small intestine (now 10cm total) but the part attached to his large that wasn’t being used for the last few weeks had grown from 10 cm to 30! Dr. Dicken said they normally expect it to grow a little, but he had been surprised it had grown that much! He had also removed Ian’s appendix. For the next few day’s Ian’s recovery went well. In the afternoon on December 1^st, 2 days after the surgery, Ian was extubated (took the breathing tube out). He did well at first, then in the evening Ian started coughing and turning blue, poor guy! It hurt his incision when he coughed. Ian continued to have low oxygen throughout the night. In the morning they did an x-ray and found that his left lung was collapsed. It seemed Ian had caught a cold which now turned into pneumonia. They re-intubated him, changed his meds, and gave him some blood. He got better slowly.

Ian and Ryan's Story - Surprises

Monday morning Matthew went back to work, our two oldest kids Miriam (6yrs) and Dylan (4yrs) went to school, and Nicole, my Mom, Lydia and I went to visit Ian in the hospital. While we were there Ryan’s hospital called Matthew at work and told him Ryan was ready to go home. What? Ryan had passed his car seat test overnight and was ready to be picked up. Matthew called me and told me. That was a shock! I wasn’t ready yet… I didn’t have any clothes that would fit him, his bed wasn’t ready. We left Ian’s hospital, went to the mall, picked up some cute preemie clothes, and went to Ryan’s hospital to pick him up. This was the first NICU discharge I had ever been at and didn’t realize it would take some time. While I was waiting, I randomly met a friend in the hospital who was visiting a mutual friend who had just had a baby. I had time to say hi to both. Then went back to Ryan to see if he was ready. During the discharge exam the doctor mentioned that Ryan had a slight heart murmur, and that I would need to book him a hearing test soon after he was discharged. Other than that he was a healthy preemie. Ryan was discharged weighing the same as his birth weight – 4lbs 6oz, the smallest baby I had ever taken home! We arrived home just before the kids came home from school.

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Ryan ready to come home! 

Daddy feeding Ryan his first bottle at home.

                                                      

The next few weeks are a bit of a blur. I didn’t keep a journal so it’s hard to remember what happened when. My Mom flew home to Manitoba shortly after Ryan came home. Ryan did well at home, and grew like crazy! He was a content baby and slept lots. He loved the car seat which was a real blessing since we took him to the hospital at least two times a day to see his twin Ian. Most people are able to keep their newborns home for a week or more before ever having to go out. Our little 4lb Ryan was a trooper! He never did get sick with more than a cold. Ryan must have had a pretty good immune system since hospitals are places you usually want to avoid because they are so full of germs! Every time we entered or left the hospital I used the hand sanitizer to slather onto most of the stroller so both Ian and Ryan wouldn’t get sick. I also usually changed all of Ryan’s clothes before going to the hospital since I often let the twins nap together in Ian’s bed in the hospital. The doctors and nurses often took pictures (with permission) of our precious twins snuggling. Even if they were placed not touching each other in the crib, they would wiggle till either Ryan had his hand on Ian’s head, or they were holding hands with each other. Twins have such a special bond! I was finally able to hold both of my babies at the same time about 3 weeks after they were born. I was SO happy! Lydia grew up very quickly since she was now the middle child of 5. She did a great job of taking care of Ryan and Mommy while Miriam and Dylan were at school. Miriam (gr1) and Dylan (K) did great in school, which impressed me quite a bit, I had expected them to both be doing rather poorly since I wasn’t really able to help them much at home. All three kids did have a few emotional issues due to a prolonged lack of attention, and high stress environment at home, but they did quite well considering everything that was going on.  Nicole stayed with us until the end of October. This helped me so much, as she would clean, cook, do laundry, and babysit etc.

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These boys loved their daily snuggles

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Mommy holding her twins together for the first time <3 o:p="">

Ian’s IV in his umbilical cord didn’t last for long, so they had to shave some of Ian’s hair and put the IV in his head. A thoughtful nurse saved the hair from Ian’s first haircut for me. Ian had half a mohawk for a bit, his hair looked pretty crazy till he came home and I could trim it a little. By the 18^th of September, Ian was 3lbs 2oz and Ryan was 5lbs 7oz. Both were gaining steadily.  Ian was transferred from the Stollery NICU to the Royal Alexandria Hospital NICU around the 25^th of September because he was doing so well. (The Stollery NICU is for very sick babies, and those waiting for surgery) Ian’s large incision   didn’t heal well, since he was so small and his ostomy bag didn’t stay on for much longer than a few hours most days. The poop from the ostomy sometimes leaked into the incision, and often when they changed the ostomy bag they ripped open the incision a little. Ian was so small the ostomy bag barely fit between the incision and his stoma.

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Crazy hair! 

                                          Snuggles during daily naps in the hospital (Above)                                      

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First family photo – This was taken around the twins’ due date.

October 4^th came and went uneventfully. That was my due date. Now the twins were 6 weeks old. Ian was slowly gaining and we hoped we could take him home, ostomy and all in a few weeks. We continued to visit Ian twice a day, and came with the kids on Saturdays and Sunday mornings. I was still pumping every 4 hours, and taking care of a newborn, all while trying to keep up with 2 kids in school, a 1 year old, housework, meals etc. I was very thankful Nicole was still around to help! A very crazy schedule became reality for us. Thanksgiving came and went. Finally on October 21, 2013 we were allowed to take Ian home! He was 2 months old and 4lbs 3oz. Now Ian was the smallest baby I had ever taken home!

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Ian and Ryan – both finally home.

Nanny (Auntie) Nicole feeding Ian his first bottle at home. 

Mommy tandem feeding the twins.

            

 At home a new schedule began, although slightly nicer because we didn’t have to drive so much, it was still crazy around our house. I had to learn to change Ian’s little ostomy bag, even at 4am sometimes, at first it took me 45 minutes, and he cried the entire time, most of the time. I felt horrible for my baby, how much weight did he loose every time he cried so much? How come I couldn’t learn to do this faster? Was I hurting him, or was he just scared? We visited the doctor weekly, a dietitian called me for weights, intake and outputs, I was still pumping every 4 hrs. Into Ian’s feeds I measured extra iron, formula, fats, sodium, and vitamin D. He was also on nystatin (medication for thrush) from time to time. We now had 3 children in diapers: Lydia, Ryan and Ian-(peeing). Even with all this craziness going on, we still had the ‘regular life’ problems. At this time we caught 5+ mice that had moved into the house in late fall and had been continually invading my pan cupboard and laundry room, and my live in nanny had to go home. Shortly after Ian came home we were finally able to have Ian and Ryan baptized. My family came out to witness the baptism, and my in-laws hosted lunch and supper that day. When my parents left they took Nicole home with them.

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Nanny Nicole with Ian and Ryan the day they were baptized.

After Nicole left a friend organized babysitters to come to my house for a few hours 1 day a week so I could run errands. (The same amazing lady that had been organizing the meals J). This was such a blessing since I couldn’t take Ian out because if he got sick from even the slightest thing he would be admitted into the hospital. For Ian, even a common cold would be life threatening. Ian’s pediatrician was so worried about Ian getting sick that for my weekly appointments he had me come to the office before it was open in the morning, just so I didn’t wait in the waiting room that was sure the be full of germs. I was instructed to walk right into an examination room with Ian and wait for the doctor there. My sister-in-law came over on the mornings of Ian’s early doctor appointments to babysit the kids so Matthew didn’t have to stay home from work for too long. We loved being home as a family. Ian seemed happier and we all enjoyed just being together.

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Tiny Ian with big brother Dylan

Miriam snuggling Ryan   

We didn’t NEED 2 of everything J

                           

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The ostomy bag changing setup – I would wrap Ian in the spit cloth so his arms didn’t get in the way. Then I used a warm magic bag to warmed the ‘wafer’ (it adheres to the skin better when it’s warm). After I was done changing the ostomy bag I put the warm magic bag on Ian, he loved that. J

 Dylan playing with Ian.  

  All packed up to go back to the hospital.