The NICU stay

Here are the highlights of those first few weeks:

Holding Alex was quite difficult those first few days after the surgery, since he was hooked up to all sorts of things. Initially, I would ask a nurse to help me lift him out of this warmer, to make sure that I didn't disconnect something. Then, when I felt comfortable, I began lifting him out myself. Yes, they were the professionals, but he was my son.

Both Grandmas' were very supportive, and took turns sitting with him so I could go and eat:



3 days after surgery, the Dr's took Alex off the ventilator, and it was deemed that his oxygen levels were so high, he didn't even need to be on oxygen. That same day, he pooped for the first time, so the NG tube was also removed. Here is a cute pic of Alex with no tubes around his face, shortly before they inserted a feeding tube into his nose:


Now we come to another very vague memory. At least the timing of it is vague! A few days after the surgery, my dad and Jon got Samaritan Aviation to fly them back to Montrose. While Rosa was doing a great job with Brynn, we wanted a family member with him too, and Jon needed to get back to work. Then, a day later Dad drove back up with a car - we'd been renting one. I think. Then a few days after that Jon drove Brynn up to meet his brother. Like I said, none of us can remember exactly how that all went, but Brynn did get to meet Alex in the hospital. Jon's mum had left by this point, so my parents took Brynn to see all the sights of Denver: the zoo, the aquarium, etc. Jon said the drive back to Montrose was great because Brynn was so worn out! This is our first family picture (Brynn was such a cute 2 yr old, wasn't he????):


Alex was moved out of the NICU to the 'Step Down' nursery once he started eating enough to remove the NG tube. There was a certain amount of milk that he had to eat for 3 straight feedings before they would release him. I made sure that I was the one to give him his bottle at every feeding during the day, but let the nurses deal with night feedings. We stayed for a few days in a local hotel, until there was room at the Ronald McDonald house.Jon was back at work, so mum and I were holding down the fort at the hospital.

Finally, we were told that he could go home the next day. Jon drove down that evening, and mum drove her car home. She was such a huge support throughout that whole ordeal, couldn't have done it without her. Thanks, mum. You are the best. My sister's baby was admitted to hospital in England at the same time, with RSV, and poor mum was torn between the two of us,however ultimately decided to stay in CO.

We had to show the nurses that we had a car seat, and knew how to strap Alex into it before we could leave:



We were on our way home!!!!!

Mama's Little Fish

Yesterday was the last day of Brynn's American Red Cross Level 3 swim lessons. He has had the same wonderful teacher all year long, and she and I have worked up quite a rapport.

Before Level 3 started, 4 weeks ago, I told Brynn that he could start Karate lessons after he passes Level 3, because I want him to be completely safe in the pool this summer. Unfortunately, I wasn't sure that Brynn would pass last night, and so was looking at another month of sitting at the pool, two nights a week.

On Tuesday night the kids did most of the test - they floated, they glided, they jumped into the deep end and swam a little. It looked to me like Brynn did pretty well, but I knew that last night was the biggie: the distance swim. About a week ago his teacher told me that he has all the necessary elements together to pass, but she wasn't sure that he had the stamina for the distance swim. She pointed out that he was the littlest one in the class, at least a year younger than all the other kiddos, many of whom also couldn't do the distance swim.

When we arrived at the pool last night, his teacher again reminded me that he needed to do that swim to pass. I told her about the karate deal, and we decided to tell him that he was too young to pass Level 3 this time around, and so to start karate now, coming back to Level 3 when he was older.

Before he got into the pool, I took him aside and said, "Sweetie, your teacher thinks you might be too young to do this distance swim today, and that's ok. But I want you to do your best. Daddy and I will be super proud of you whatever happens, if we know you did your best."

"Ok, mummy. I'll do my best," he replied, running off to join his class.

I settled into a fun game of Sequences for Kids with a friend and her young ones while the big kids swam. It was very engrossing; I was keeping an eye on the swimmers, but somehow missed seeing Brynn swim.

While the teacher was writing their pass/fail cards, she let them have 2 turns each on the big, purple slide. So far this year, Brynn had refused to go on it, saying he was a little scared. Not yesterday.

I watched as he slowly climbed to the top and sat down in the mouth of the enclosed smile. I held my breath to see if he would push off.

Ten seconds later he was climbing out of the pool yelling, "Mum, did you see me???" Standing in front of the slide, dripping wet with blue goggles on he continued yelling, "Mum, that slide is totally awesome." My friend and I started laughing, it was the cutest thing.

Then the teacher came over, "Did you see him swim?" she asked. Um, no. "He did it!! I have to pass him."

What? My little just-turned six year old just swam half the length of the pool doing elementary front crawl, floated on his back for 60 seconds, then swam back doing elementary back stroke??? Well, mostly. His teacher did spot him once or twice during the back float because he is so stinking little, and doesn't have an ounce of fat on his body to add buoyancy, but she overlooked that!

You should have heard his whoops when we told him!! "Mama," he said, "I tried my best and it worked!"

Can you tell how proud I am of him?

It is so rewarding to see your kids work hard at something, and for them to see the benefits of their work.

So for now, we are taking a few weeks off to relax: swimming and ski school are both over for the year. However, the craziness will start again in April , when he begins taking karate, twice a week.

I think it's dad's turn to take him to this one ...

Brynn's 6th Birthday Party

We didn't want to do anything to huge for Brynn's birthday, so we decided to let him invite 2 friends to Chucky Cheese in GJ. This was a hard decision to make: the last 'family adventure' we took with Brynn and Alex was to Chucky Cheese. We hadn't been back since then. Life has to do on though and we have limited things availble to do in small town world.

Brynn chose his two friends and off we went. We also invited our good friends L & K Master's to come, with their 2 kiddos - almost 3 and almost 1. I was somewhat apprehensive about how Iann would handle the lights and noise, but he took off running as soon as we got there. He didn't do any actual games, but enjoyed watching the older boys and being with Miss Master's ...

"Mommy, he's not listening to me ..."

Overall, the day was a great success - while I kept looking over to where we sat with Alex, remembering him snuggling into his sling, I was able to separate that experience to the one at hand. Brynn deserves a mum who is present with him for his big events, not one who is living in the past.

I told the other mum's that we'd have thier sons home by 6pm - it was a school night after all. The boys were still picking out their prizes a little after 6pm ... and it's over an hours drive for home! Opps. I hope they trust me their boys again!

Three happy, sugar-filled boys.

Pulled in so many directions

Before Jon and I married, we were driving over a hill in Northern CA, talking about what life would be like when we were married. We joked about how we would both be working two jobs, just to pay the bills, and how we wouldn't see each other during the day, but would drop into bed tired but together.

And so here we are.

Jon works 6:45am - 3pm, Wed - Sat, as a Corrections Officer at a State prison. And he cleans my dad's office on Sun evenings. He is also a very dedicated, involved and available dad.

I have been working with my father-in-law, proof-reading and editing his books, for the last 5 years. At some point's I've worked up to 24 hrs a month, all in the evening after the boys are in bed. We are near the end of our latest book, and I have only worked a few hrs a month recently. Starting last September, I began teaching music two afternoons a week at Brynn's school. While I have never taught before, I enjoy singing and took the chance for both a paycheck and tuition discount when it presented itself.

What have I learned from this? Bottom line: God did not place me on this earth to be a teacher. Now, don't get me wrong, I will finish out this commitment and give those kids my best effort. Next year? Not so much.

And, for my third job ... Dad recently opened an insurance agency in town and I am his office manager/accountant, in the process of muddling though Quick Books. Not to bad in and of itself, however Dad just can't get his mind around the fact that I need to know when he spends money. He can't just write a check and not let me know!!! I work two morning a weeks at the office.

Jon's weekend is on Monday and Tuesday, the days that I work. So, sweet little Iann gets special time with daddy. Jon makes sure that Iann gets to two hours of therapy on each of those days, and then snoozes on the couch while Iann naps. While I work.

Of course, I get to snooze while he is working the other days so I don't begrudge him. Well, not too much!

It is Tuesday night and I worked my 2 jobs yesterday and today. Came home and made dinner both nights, and took Brynn to swim lessons this evening. I am tired. Exhausted even. I look forward to Wednesdays when I have time to recoup, with only one therapy in the morning.

When Jon and I imagined our lives would be like this, we didn't take into account the kids. Their needs for time, love, listening ears, willing feet. Healthy & tasty meals, clean clothes, (relatively) clean home. Time to learn and time to play. Time to rest and time to engage . Did I mention time????

Add into the mix Iann's additional needs. I have a huge guilty weight that I carry around: there is so much more I could, and should, do for him. He is out of therapy so many more hours a week than in it, and what do I do with those hours? I pay bills, clean the house, go to the store, do laundry, spend a little time with my friends, which gives Iann social outlets. All the things that I need to do to keep our household rolling along. I try to do his mouth exercises 3 times a day, and I read him many books - or the same one over and over! And yet I feel like I could do more.

And so I feel pulled. After my 2 recent surgeries and Jon's ongoing back issues, I need to work as much as I do right now. My paycheck's pay the medical bills. And Iann always seems to need something more, something else.

I know God calls me to do my best in everything I do, as unto him. And so I give the kiddos at school the best that I can to instill some music theory into their education. I give the office my full attention and work my 3 hours straight with as few breaks as possible. I do the laundry in the evenings, and clean the house a little every day. I buy the groceries, play with the kids and make the meals with the image of doing all these things with Jesus beside me.

Sure, I whine about it sometimes, and feel that no area really gets what it deserves, but this is the place God has put me for this time. As Jon said today, "Honey, this is how things are right now. They won't always be this way."

But they are for now, and I do what I can to keep my head above water, and I 'just keep swimming.'

My tender-hearted, ALL boy, Brynn is six today

It is hard to believe that my little bundle of energy is six today. Talking of energy, we just got home from swim lessons where a friend whose 2 daughters are in Brynn's class said to me "Wow, he is still wound up. Does he ever calm down or sit still?" Um, not so much.

I will post some pic's of his little b'day party up at Chuckee Cheese's soon, however I just want to share what a sweet-hearted boy this bundle of energy really is.

A few days ago I was wasting time driving around town and decided to drive past our old house. I was excited to see a little boy playing outside in the front yard, and told Brynn that he used to spend hours in that little yard.

"I miss that house," he said. "Why did we move?"

"Well honey, we moved because that house made mummy sad." I replied. "That's where we lived when Alex was alive and it made me too sad to live there after he died."

I was expecting him just to accept this and move on to the next question, as he always has in the past. Instead, I heard him sniffling. I looked in the rearview mirror and huge tears were falling down his cheeks.

"What's wrong honey?"

"I'm sad because my brother died."

That's the first time he as really connected with the whole thing.

As mentioned in an earlier post, Jon and/or I have to pin Iann down and straddle him in order to get med's into his mouth. A few nights ago we were having a really hard time and I muttered something about how I felt like a mean mummy, doing this to him. Next thing we knew Brynn was crying b/c we were being mean to his brother. I quickly told him that we really weren't, we were just following Dr's orders.

The next night, he started crying again, thinking that I was hurting Iann. Again, I quickly told him that I wasn't, but that Iann is very stubborn about taking medicine. Jon also took Brynn on his knee on the couch and told him the same thing.

What a sweet, little thing he is. I love him so deeply, more that I ever imagined I could love someone. Sure, he drives me to distraction sometimes with his constant chatter, and unswerving belief that I am a jungle gym, but life without my Brynn - Brynn would be dull, boring and lonely.

Tomorrow's Appointment's ...

I am working on another Alex article, but those are harder to write, and take lots out of me emotionally. Sometimes too much. Instead, I will focus this post on what we have going tomorrow.

As you may notice from the "Iann's latest accomplishments" sidebar, he isn't the world's best sleeper. To say the least! Since he came home a year and a half ago there have been many, many nights when he wakes up, and has a really hard time going back to sleep.

We have established a very solid bedtime routine, which we rarely stray from:

Bath time: Sometimes both boys are in there, other times Brynn showers the next morning before school.


Books: Either Jon or I read a few books to the boys while they drink their milk.


Bedtime: Brynn brushes his teeth, we attempt to brush Iann's teeth, and then both boys get into their beds: Brynn climbs up to the top bunk and Iann is put into his crib. Brynn usually falls asleep within minutes of turning his light of, while Iann takes up to 30 mins to settle. He babbles to himself, eventually falling asleep between 7:45 and 8:15.


Then, every night between 10pm and 10:30pm Iann stirs. He lets out a few cries, sometimes a babble or two, and then resettles himself ... most of the time. It is quite rare for him to wake up at this point, but it has been known to happen. I can almost set my watch against this stirring.

His next time of restless sleep occurs between 2am and 2:30am. If I am woken up by his crying, or him doing what Jon and I call 'crib gymnastics,' I know it is between 2 and 2:30am before I even open my eyes. And then he is awake. If left to his own devices he will be awake until about 4:30, when he eventually goes back to sleep. I will then have to wake him up around 7:30 the next morning, so he has time to eat before we take Brynn to school. I usually allow this to happen for one night. If he wakes up again the following night, I go in and give him 1tsp of Benedryl, which will knock him out within 30 mins.

There have been times over the last six months when his sleeping patterns have been awful. I think I am more aware of how bad things get since we got his diagnoses of FX and autism due to my reading that poor sleeping habits are common with these kiddos. His developmental pediatrician at Children's Hospital in Denver has told me that she is willing to prescribe sleeping meds to kids that need it. However, I have yet to convince her to prescribe for Iann. And there have been days when I have practically begged her to do so!

Which brings us to tomorrow's appointment. In my most recent conversation with the Denver Dr she asked if Iann snores. I told her that he is a very loud snorer! She then asked if I had ever noticed him holding his breath while sleeping.

I was bummed, knowing that this might lead in a direction I would prefer to avoid (ignore??). But since honesty is the best policy, I told her that I used to notice that he occasionally held his breath when his crib was in our room. And, that I still notice it if he is sleeping in my bed, when he's sick or has been awake for hours and even Benedryl isn't working.

Of course, she brought up the dreaded snoring induced, childhood sleep apnea. Shudder. At the least, she thinks the snoring might be either waking him up, or the low muscle tone of his tongue is causing it to bunch up, thus blocking his airway, causing him to wake up. All of this is based on the fact that when he does wake up, it is at the same time in his sleep cycle. Sigh.

Our first line of attack is a visit with our one and only Ear, Nose and Throat (ENT) Dr. The same man who just put tubes in Iann's ears about four weeks ago due to chronic ear infections. So, tomorrow's first appointment is to discuss the snoring, and try to determine the size of Iann's adenoids. Which, by the way, you can't see just by looking down a person's throat - even if Iann would cooperate and let him look down his throat!!! Oh no, this might take an x-ray. If they are deemed to be very large, it is out with the adenoids. I truly wish we had known this at the time of the ear tubes insertion b/c the ENT could have done both things at one time. But no, that would be too simple for the CO Millers. Things just don't come that easy for us.

On the bright side, Iann's autism therapist told me a story today about a boy she once worked with. It was determined that his adenoids were large and affecting his sleep, so they were removed. Within a few months, this non-verbal child was talking. She said it wasn't directly linked to the adenoid removal, but more to the increased quality of the child's sleep. Being better rested, he was that able to focus better, and his brain to work more efficiently, thus allowing him to pull all the necessary pieces together to facilitate speech.

Of course, there is no guarantee such a thing would happen with Iann, but a glimmer of hope is always welcome. And, I would prefer another surgery to remove Iann's adenoids, than for him to have sleep apnea, needing to sleep in a CPAP bubble.

The second appointment Iann has tomorrow is with his general pediatrician to discuss the abundant flow of bright green goo from his little nose! It's been going on for about 3 weeks now, so maybe it's time to get it looked at??? I was hoping the ear tubes would stop the constant use of antibiotics, but again, that would be too easy!!!!

And so we are off on the trail to solve another Iann Miller mystery. Wish me luck :)

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.