Alex's surgery

Alex was admitted into the NICU at Denver Children's Hospital on the evening on July 29th, after being flown up from our hometown. The Flight for Life nurses told me they thought he had a really good chance of a full recovery, since he didn't need any oxygen throughout the flight: he was breathing well enough on his one, fully expanded lung, and what air he was getting from the collapsed one.

The NICU is a very confusing place, with lots of Dr's of all types coming to talk to the parents. This all happened nearly 4 years ago so I can't remember many of them now, however I don't think I would have been able to tell you who they were while we at the hospital! The one constant Dr we saw every day was the surgeon who worked on Alex, and his intern, let's call them Dr. Surgeon and Dr. Intern!

Dr Surgeon told us he thought he would be able to operate on Alex first thing on Tuesday morning, giving him all of Monday to settle down and grow a little stronger. The wait was on.

I remember very little about that Monday - it seems to have disappeared into the great unknown! One very clear memory was my commitment to nursing Alex, since I knew he needed the extra nourishment I could provide. So, I started the routine of pumping every 3 hours. For those of you who have had to do this from day 1, it is PAINFUL. When nursing a baby you don't realize how little is coming out until your milk comes in, but when pumping you see every drop ... or lack thereof! By Monday night I told Jon that I couldn't do this for much longer, that if my milk didn't start flowing in the next two pumping cycles, I was done. Thankfully, my milk came in ... then I had issues with too much milk, but let's not go there!

Tuesday dawned, and Jon's mum, my parents, Jon, and I congregated around Alex's little warmer/bed. It was hard to believe that my tiny baby was about to have major surgery, one that he needed in order to survive. The Dr's arrived to check him out and were happy with his vital signs etc, so the nurses began to ready him for surgery. We all walked with him towards the surgery ward, where I think only Jon and I were allowed back into the pre-op area.

Remember, this was all nearly 4 years ago, so the memories are a bit fuzzy. I am 100% certain that I cried as they wheeled him away, but what mum wouldn't?

Jon and I went out to the waiting room to find our parents, and it was so busy that we had a difficult time finding a group of seats together. I looked around and thought, "Are all these people waiting for a child in surgery? Are all their children under going life-saving surgery? Or are some have elective surgery?" No one else seemed nearly as upset as I was. Was I being too emotional or were others doing better at hiding their fear?

I can't tell you how long we waited for, or what we did during the wait. I don't think I went anywhere; others may have gone to grab breakfast. I don't even clearly remember Dr Surgeon coming out to tell us that the surgery was a complete success; Alex's left lung had sprung back to full size, once his intestines had been returned to their normal place. Alex was expected to make a total recovery and be a normal little boy.

This is what he looked like after surgery. You can just see the brown iodine under his diaper. He has a NG tube pumping out his stomach, a breathing tube in his throat, heart monitor cables, an oxygen monitor on his toe, an IV giving him glucose sugar and antibiotics, and who knows what else. What I do know, is that he was totally beautiful to me. My little fighter, who Dr Intern nick-named "Alexander the Great."

What was next? Waiting. We had to wait a few days to take him off the ventilator, and then wait for his first bowel movement, showing us that his intestines were working. Then we could start feeding him the milk I was pumping.

Brothers

Brynn is an amazing big brother. He gets just as excited as Jon and I do when Iann does something new. "Mama," he'll say, "Iann just scooped food on his spoon for the first time. Isn't that great???"

While he is aware that Iann is behind the other 2 yr old's he knows, he hasn't ever complained or been bothered by it. This may not always be true, but we'll take it for now.

After loosing Alex, Jon and I didn't want Brynn to be an only child; he needed a brother to keep him grounded. This was a big reason why we started the adoption process, and why we wanted to adopt a little boy. Brynn has loved Iann since the day he came home, and kept asking when they'd share a room ... which they do now. Iann won't settle down until Brynn is in bed, and Brynn sleeps through all of Iann's night wakings. It is a beautiful thing. Oh, and Brynn reads to Iann after we leave the room.

To be honest, there have been moments of anger regarding Iann's diagnosis, and one of the issues that can upset me is the idea that a child with some level of cognitive delay wasn't they type of brother I wanted for Brynn. A child who takes up lots of my time, and who I have to focus on more closely than Brynn. But Brynn's innocent acceptance of everything Iann does shames me out of these feelings. This is the brother God gave Brynn, and I believe that having Iann as a brother can only make Brynn a better person.

Now, don't get me wrong, they argue and Brynn pick's on him, just like any other sibling set. Right now, for example, they are in their bedroom with the door shut, playing while Mama 'works.' I hear the occasional whine coming from Iann, and I am sure that Brynn is choosing to play with whatever toy Iann has shown interest in. And, now I hear a giggle from them both. What are they up to in there??

This morning I was emptying the dishwasher and I heard Iann belly laughing downstairs. Brynn had turned off the Wii and they were supposed to be coming up for breakfast. As hard as it is for me not to rush downstairs to see what is happening (Iann has been known to laugh when he's getting hurt) I reminded myself that I don't want to be a 'helicopter' mum to Iann any more than necessary, so I forced myself to stay out of it.

A few minutes ago, Brynn showed me what he was doing to Iann downstairs earlier on today:



Brynn is sitting on Iann, rubbing his chest and making him laugh really loud. Brynn has seen Jon straddle Iann like this to force liquid medicine down his throat, and he knows Iann's SLP, BM, has asked us to vibrate up and down Iann's chest to show him how long he can make noise for. Iann HATES when Jon straddles him with a medicine syringe in this hand, but loves when Jon vibrates his chest. Brynn has somehow combined the two into a game Iann loves!


End-note, I now know what they were doing in there ... Bryn just came out of the room:

"Mama, look at me." I looked up and he is wearing a diaper! "Don't worry, mama, I have my underpants on underneath."

Sigh. Maybe I should go and instill some order in there.

Jon and Brynn go sledding

Living in a place where we tend to get loads of snow each winter we have tried to interest Brynn in sledding for a few years. However, hehas never been too interested. Until this year. When he heard that Iann and his twin cousins went sledding last week while he was at school, he started a campagin for Jon to take him out. Both Brynn and Jon were home on Monday, so they went up to Cerio Summit. It was President's Day and all the schools in the area were off, so they expected the sled run to be quite busy, however there was only one other family there - another plug for small town living :)

The morning started off with Brynn a little nervous of going too fast, sitting on his sled and controlling his speed:

By the end of the morning, he was trying to go as fast as possible:

I think we need to get a better sled for next year, one that will let him go really fast!

Jon handed Brynn the camera at one point, to let him try and get some pic's of his dad sledding. Here are a few of his best efforts:

Is that the time? My budding phographer will be waiting for me to pick him up in 2 mins and Iann is still asleep in his crib. Opps!!

A week in the life of Iann

Iann has 9 hours of therapy each week. This is nothing compared to the twenty hours a child with autism is 'supposed' to have, but it's very good for where we live! The men and women who work with Iann are all fantastic, so I am going to give a little description of what each of them do, referring to them by their initials for their privacy :)

First, occupational therapy. Iann's OT, LL, is fantastic and has been working with him for almost a year. I am already getting sad for when Iann starts pre-school in the fall, in order to receive therapy there, and we will no longer be able to see LL. Unless the autism waiver comes through by then ... please let this happen God! LL is working on increasing Iann's cognitive abilities and helping him regulate his sensory system. Iann is a 'sensory seeker.' What is that? Good question and exactly what I asked!!! It means that his nervous system has a difficult time organizing, and telling his brain exactly where all his body parts are. Also, Iann has a really high pain tolerance: he trips over a lot and I rarely worry b/c he pops back up and runs off. Even when he has blood pouring down his face! When he does cry, I feel like it is more the shock of what happened, as opposed to any pain. So, one of LL's job is to help him learn how to get the sensory input he needs so that he can concentrate and learn. Also, LL works on things like him be able to feed himself (which he is starting to do), stacking blocks and scribbling.

Iann's first speech therapist (SLP), KK, was awesome too. She did all the hard work of teaching Iann the power of communication. Sadly, she moved away a month ago and now can't see the results to her hard work. After KK let us all know she was deserting us, um, I mean moving, the search was on for a new SLP. It is amazing how there are just no SLP's willing to work with the Early Intervention program, within an hr's drive to us! Anyone looking for a career change might consider becoming a SLP, b/c there is a real shortage of them!

Before leaving, KK started to talk about Iann to a SLP who lives over an hour away, finally convincing him to take Iann on. So, Iann has a new SLP, a man who comes through our town on his way to work with various school districts. Iann has seen him twice and already we are seeing results. A mixture of KK's hard work laying the groundwork, and BM's amazing way with kids has lead Iann to start babbling more than ever and even try to say some words.

Iann also has 2 other SLP's he sees, who work at the Pediatric Rehab center. Obviously, speech is hugely important right now. These ladies both have different approaches to BM, and between the 3 of them we are seeing results.

And then there is the autism/behavior therapist, AM. This poor lady lives closer to two hours away from us, but has another kiddo she sees here twice a week, so comes to Iann after him. We are working on increasing her hours with Iann but I am having a rough time receiving any feedback from her employer! Argg, very frustrating! AM's type of therapy is the one we were told Iann needed twenty hours of a week in order to have the best chance at life. And she comes two hrs a week. Like I said, this isn't what either of us want, and we are trying to increase her hours but her employer is in Denver, and we are out here in the Western Slope. The best way to understand her therapy, is to understand that she is getting Iann ready for pre-school; teaching him to sit down and pay attention to her, and make choices between toys. Obviously this is a very broad sketch of what she does!

Finally, Iann goes to gymnastics twice a week. He used to see the world's most amazing physical therapist, but that was costing us $50 a week, where as gymnastics is $88 a month. He goes to a mommy, daddy and me group once a week and has a private lesson once a week with an wonderful coach. This man has years of experience and has working with Olympic level gymnasts. He has a real interest in kids with Special Needs, and is truly great with Iann. He has told me not to push Iann to be where the rest of the group is, on the Monday class, but to allow him to get used to other kids being there and to wait for him to join us ... which he usually does.

And there you have an overview of Iann's week. And my week with him! We are happy that Iann has two men working with him, since these guys truly get into the rough and tumble with him, in the same way that Jon does.

Life in a small town

We love living in a small town. Jon and I met in this area, and always knew we wanted to raise our kids here. After living here for 6 1/2 years, it is a rare experience to go anywhere without running into someone you know - either a good friend, or an acquaintance. I have also noticed that if I vary where I buy my groceries, or where we eat out, I run into a different crowd of people. So, sometimes I shop in a different store just to catch up with different people!

I love our small town Children's Museum. In recent years I have visited Children's Museum's in Phoenix and Palm Springs. Certainly, these other places are much bigger and have more sophisticated exhibits. One boasts a huge indoor climbing sturcture around a tree and a room with swimming noodles hanging from the ceiling, both very fun things. The other has a VW Bug that kids can paint, a dedicated store area with an attached pizza parlor, where kids make pizza's out of cardboard and felt. Brynn spent a long time being the checkout boy in the store, enjoying be able to control the younger kids! Oh, and the old police motorcycle was a big hit with Brynn too.

For all their cool exhibits, however, there was one important thing missing: somewhere for the mum's to sit and catch up. I guess since our Children's Museum is so small you can basically see the kids wherever they go, so we can sit and chat. I have a few good friend with whom I have spent many hours with in the Children's Musem, disucssing topics ranging from tax returns to potty training to our loving husbands to budget ideas. I value these many hours with my friends. Up until recently Iann wasn't very happy at the museum so I hadn't been for a long time. We tried again last week and he is now happy to be there, and is able to amuse himself very well, as well as interact with the other kiddos there. Yay for forward movement!


Of course, small town living does have drawbacks. For example, we only have one hospital and so one ER, and that is where Alex died. In the year after that horrrible day I think Jon, Brynn and I had to visit the ER more times than ever before combined. It was still hard to walk past the room where my baby passed away, but I have no other choice.

Another drawback to small town living is the lack of any pediactic specialists. The boys have a great Dr., who has expereince with, and a heart for, kids with developmental delays and SN's, like Iann, and he does a great job claming Iann down when he has to go see him. However, the neurologist and FX/autism Dr's are all up in Denver. Since we only have to see them once or twice a year at this point that's not too bad, but it's still a 5 hr drive to get up there.


Certain therapists are hard to find in our area also. We are very lucky to have found a team of wonderful therapists to work with Iann, however I know that a bigger city would offer even more options.


Will we ever move? Maybe. If we ever feel like Iann needs the services offered in a big city we'll move. But at this point, we are hanging in with what this area has to offer. Since leaving Hong Kong, at the age of 17, our six years here are the longest that I have lived in one place. The idea of leaving my good friends here, and of packing up our house, makes me sad. And so we are staying. For now, and maybe for always.

Family Dinner Night

Ever since we got the FX diagnosis, I have read everything I can get my hands on about the syndrome. Overall, it seems that most of these kids get easily overwhelmed in new situations, and busy places. Restaurants can be a prime place for a meltdown. Thankfully, sweet Iann rarely gets overwhelmed like this. His desire to get down from the table is quite typical for a two year old.

Every Sunday night Jon, Brynn, Iann and I eat dinner with my parents. For many months we have eaten at a Mexican restaurant called Amelia's. They have a big outside porch that we always have the corner table of during the summer, and once the boys are done eating we let them down to explore. In the winter they give us a similar type of table - in the corner - and they know us well enough that we don't worry too much if Iann has to get down to move around. Unfortunately, Amelia's has decided to close on Sunday's until the weather warms up again, I guess our business wasn't enough!

So, we are trying to find another favorite place to go. Last week we tried a different Mexican restaurant, but it just wasn't the same. Tonight we decided to go to Garlic Mike's. I really like their mushroom soup, and mum said no to Pahgre's. Jon and I arrived about 5 mins before my parents, and in that short amount of time, Iann had pulled the paper covering off the table cloth, thrown a knife on the floor and knocked over a glass of water. Amazingly, Brynn was super well behaved all evening. By the time my parents arrived, Jon was ready to pack it in and go home.

I guess I hadn't thought about the other restaurant patrons. All middle-aged couples out for a nice evening meal - not another kid in sight. Opps! Thankfully, Iann is fascinated with my dad these days, and as soon as they arrived he started pointing at dad and babbling. And laughing. And squealing. And babbling more, and more, and more. He was babbling consonants that I haven't heard for months.

His new speech therapist told me the other day that our goal is to get my almost silent boy babbling so much that I wish he would be quiet.We were nearly there this evening. If was so very wonderful to hear, however there was a part of me that wishes he had chosen a more kid-friendly venue in which to be so loud and vocal!

Alex's first few days

Alex was breathing fine right after he was born and he was put onto my chest. However, within 3 min's my OB said something like "You better fix that breathing little one." My heart sunk. This little one was struggling to breathe as well? (Nice picture of me right? I am not one of those women who look perfect right after giving birth!)

In the same way that they did with Brynn, nurses whisked Alex away from me to the baby warmer in my room. In a God thing, the baby nurse was a lady who also worked at my OB's office. She had walked the whole journey of bed rest and worry with me. She listened to his heart and almost right away knew that Alex had a diaphragmatic hernia. She had never looked after a baby with this condition before, but she knew what she heard. To the best of my memory, she described it as follows "His heart was on the wrong side. I knew that he was fine on all your ultrasounds, so I thought through what could have caused it. A diaphragmatic hernia, where his intestines had pushed up through a hole in his diaphragm, just made sense to me."

She was right. Alex was taken away, and again, as with Brynn, Jon followed. However my mum didn't make it to the hospital in time to witness Brynn's birth so when he was taken away I was left alone. This time, mum and Alia were with me. True to form, Alia immediately got on the phone and started calling people to pray for us. And working her family's contacts to provide whatever we might need.

At first I really did think Alex was experiencing the same struggle's as Brynn, and I remember thinking. "Well, we've survived this once, and it wasn't such a big deal really. I can do this. I can meet this challenge." And then Jon came back into the room and told me that Alex would be sent to St. Mary's Hospital, in Grand Junction, to have surgery. X-ray's showed that his large and small intestine had indeed gone through his diaphragm, moving his heart to the side and crushing his left lung. GJ is a little over an hr away by car, so this seemed doable.

Brynn was at our house with Rosa, my parent's housekeeper from Hong Kong, who had come out to help us make it through the summer. Rosa is a wonderful lady from the Philippines who pretty much catered to Brynn's every whim for the next two weeks. Thankfully, she was able to drive Jon's car and drove him to Alia's house to swim everyday, where he was again the center of attention. Another God thing. I really never worried about Brynn the whole time I was gone.

Remember the wonderful epidural I'd had? Well, the greatness of it wore off quickly when I realized that I couldn't get out of bed to go see my baby. He was already hooked up to an IV, and on oxygen in the baby nursery. The one that was now mostly empty and able to handle a child with the intense needs that Alex had. I laid in bed, praying that God would spare me this child. Jon, Mum and Alia all came in to give me reports and show me pictures of my sweet baby Alex.

A short while later, my OB came in and told me that the St. Mary's Pediatric Surgeon was on vacation, and so Alex was going to be flown to Denver Children's Hospital. DENVER??? That's about a 5 hr drive, not so easy to cope with. At this point they brought in a wheelchair and pretty much picked me up and put me in it. I was wheeled into the nursery, where I saw my little boy with tubes coming out of his little body at all angles.

Alex was born just after 1pm, but it wasn't until closer to 5pm that the plane arrived in our local airport, and the EMT's brought them to the hospital in their ambulance.

During the wait, Jon and I had to decide how to handle the next part of the day. Only one of us could go on the plane with Alex, and mainly due to the lingering effects of my epidural, we decided that Jon would fly on the Flight for Life place with Alex; Mum and I would find another way to get there. Enter Alia and her contacts. Soon after we found out the severity of Alex's condition one of Mum's best friends, Phyllis, Alia's mum, came to the hospital to support her. Between Alia and Phyllis they reached Mark Palm, a pilot with a local relief agency, Samaritan's Aviation. Mark agreed to meet us at the airport and fly us to Denver, behind the Flight for Life plane.

One bright spot of the day was when my good friend Kristen stopped by to see me. She knew just what I was feeling, and therefore what to say to me. She had traveled the same road with her son, who spent weeks in the NICU after his birth. Kristen was a source of support and strength at that time, and continues being such for me today.

God showed up once again when the EMT's walked into the nursery. I knew one of them, and he enveloped me in a bear hug. Mum later told me she wondered who on earth was hugging me so tightly, while Jon stood by, smiling! He promised to transport my baby safely to the airport, and get him on the plane ASAP. Thanks for keeping your word buddy.

Jon went in the ambulance with the EMT's and the absolutely wonderful nurses. Their job is tough and emotionally draining, but they were both professional and caring. Mum and I followed the ambulance in Phyllis car, and saw the decent sized plane Jon and Alex would be flying on ...

and then the tiny 4-seater plane that would carry mum and me up over the Rocky Mountains. Gulp.


Have I mentioned the weather yet? In typical mid-summer mountain weather, a nasty thunder storm was rolling in. Pilot Mark was obviously worried about flying in such weather, but as the father to 3 kids he could only imagine my emotions. We took off as the thunder clouds rolled in, mum in the back and me sitting next to Mark. Planes take off horizontal to the runway, most of the time. But not this time. We took off correctly, but were soon buffeted into an almost vertical position. Mark has since told me that it was one of his 'hairiest' takeoff's ever. Double gulp. I sat and prayed through every thunder-head, the whole way to Denver.

Jon and Alex were met by an ambulance; mum and I were met by some family friends. When we got to the hospital, Jon was sitting in the NICU waiting room while the staff were admitting Alex. At that point it was about 8pm on Sunday night.

Jon mum's, Marilyn, flew in from AZ, arriving at around midnight. I think I maybe slept for a few hours, but it very hard being away from my baby. Denver Children's Hospital was in the process of building a new facility where parents can sleep in their baby's NICU room, however at this old place we couldn't. Jon and I were given a small meeting room, with 2 pull-out couches and were trying to sleep when she arrived. Jon's sleeping pill worked, mine didn't. I awoke when Marylin came in to sleep on the other couch and I took her into the NICU to meet her grandson.

She and Jon snoozed on their couches while I kept vigil at Alex's side. I truly didn't begrudge Jon his sleep. He was working the graveyard shift that month, and had arrived home that morning, eaten breakfsat and gone to sleep ... only to be woken by me in labor 2 hrs later. He was running on 30 hrs without sleep.

The following day, Monday the 30th, was one of relative calm while we waited to see if Alex would stabilize enough for surgery the next day. Time and again we were told that he had a great chance of full recovery: he had flown the whole way over the mountains without needed oxygen! It is believed that his diaphragm herniated as he was being born since the Dr's could tell from x-ray's that his left lung was fully developed, and so when the intestines were returned to their correct position, it was the hope that his lung would expand fully and he'd be breathing on his own within days.

We waited and prayed for the surgery to be successful, holding our son and cherishing the time with him.