God Speaks to Me

Our minister recently posed an interesting question in her sermon.  How has God spoken to you?   After telling the story of how she came to be part of our ministry, she even went so far as to encourage members to write to or tell her about their experiences in which they felt God had spoken to them.

 Now, there are two things that popped into my mind right away.  First of all, if I was ever to start hearing “the voice” I would never admit it for fear of the big men in white coats packing big butterfly nets looking for me.  Second of all, if anyone starts getting up to “testify” and it even looks like it is going to turn into a bible thumping repent-fest, I’m going to turn around and start waddling out of that church as fast as my five-kid butt and thunder thighs will take me.

 And then I got “the e-mail”.  (Yeah, blew me away too.  Who knew God could be so technological?)

 All funning aside, I received an e-mail this week that caused me to, once again, stop and realize just how far all my blessings extend.  Someone who hardly knows me, mostly knows of me, took the time to drop me an e-mail and say she hadn’t “seen” me on the net recently and was concerned that things had gotten difficult with Superbabe.  She just wanted me to know that she was thinking of us and hoping for the best.  It sat me back, and I realized that there are blessings far beyond what I see in my normal everyday life.

 Originally, I thought I would post this about how great the net and blogging is for connections and friends, people we would otherwise never meet.  Sound familiar?  Yes, done to death I know, but I was going to do it anyhow.  Then this morning I started thinking about it differently.

 It’s strange, you know, that whenever I most need that little pick me up, that little nudge or help, there it is.  Things have been difficult with Superbabe lately.  At the time our minister was delivering her sermon, I was actually in outpatients for the fourth time in three weeks with him.  He’s been very sick, having trouble breathing, losing weight and despite all my exhausting efforts, will likely end up with a feeding tube once more.  I have one more trick to try and then I will have no choice but to give in.   That message in my e-mail showed up on a day when I was feeling particularly down.  As well, life, you know, does not exist just for Superbabe.  There are many other things going on in this house which all compound his situation, and depending on the day, sometimes it is just too much.  To receive word from someone who hardly knows me that they are thinking of us and wishing us well, touched me in a way that can only be described as spiritual.  Weight was lifted and replaced with comfort.  What else could you call it?

 So in answer to my minister’s question, no I don’t hear voices.  I have however, been touched by angels and lifted up and carried various times in my life.  I have had situations turn out completely different to what I would have expected, some better and some worse, and had life changed inexplicably overnight.  I believe that my life is led by God and that gives me great comfort whenever I feel scared or lonely.  I now find myself in situations where I am being called upon to give the comfort or counsel, and with God’s helping hand and angels around me, I hope to make a difference in both small and large ways.

 Now tell me, has God spoken to you recently?

The Stair Master

There is nothing quite like a baby becoming mobile. Getting into the four point position and then looking at you with such pride and happiness. That first attempt at actually moving is met with great concentration, and then great anger when it all ends with a face plant into the carpet. A few, or many, hugs cuddles and comfortings later, the crawl begins to happen. I remember my daughter crawling. She used the commando style. She could pull herself along the floor, legs stretched out behind her, with amazing speed and agility. I would have challenged any well trained soldier to beat her time down the hall to the doorway when I wasn’t looking. The boys all seemed to crawl the ‘proper’ way, but I have seen many babies with all sorts of various styles of mobility. I always liked the bum scootchers best.

I thought Superbabe was going to be a bum scootcher. He just couldn’t seem to get the whole “belly” thing down. He still hates laying on his belly. Bum scootching wasn’t his thing either though. He didn’t have the strength in his arms to pull himself along the floor. A couple of therapists decided that he needed more strength in his right arm and shoulder. After about a week of pulling a hat off my head with his right arm for 5-10 min a day, he was ready to get into that four point position. Within another three days, he had found his crawl. It’s a funny sort of crawl, his right foot is planted on the floor and the left leg remains folded up beneath him. He uses his right leg to push against the floor and drags his left leg along. It works, but he often finds his left leg tangled up in the sleeper leg or his pants falling off from the fabric being drug along the floor.

Then, he discovered the stairs.

We were in this house when Levi was born. Actually, we moved in when Matthew was only 18m old. Matthew was old enough that the stairs were not an issue, and Levi was naturally cautious with them. He used to skirt around the opening for the longest time, and when he did start showing an interest, I started showing him how to scoot down backwards. It was only a matter of time before he was laughing and flying down the stairs on his belly faster than any of the older kids could possibly run them. Keegan beat him once, but he had to jump the bottom half.

Superbabe had only been moving on his own steam for about a day when he discovered the stairs. It was love at first sight. So, because he was so determined, I started trying to show him how to move backwards. It didn’t work. The kids all tried, and Mr. Man tried too. He refused to go down the way we wanted him to. In fact, he kept planting his feet and pushing with his hands and toppling over backwards. He was downright scary! That same determination that kept him alive, was now getting in the way yet again. He insisted on going down forwards.

It is the scariest thing I’ve ever seen one of my kids attempt to do, but he is now my Stair Master. He wiggles his bum up to edge until he is sitting with his feet hanging over. Then he straightens his legs and wiggles until he plops down on the stair below. Takes a moment for a smile and a giggle, and then does it over again. He refuses to climb up at all, but he would go down over and over all day long if someone was willing to go with him for that long. Any time he is set down, he heads for the stairs and I have a minor panic attack. He still doesn’t get himself into starting position without help very safely, but the stairs themselves are now mastered.

And yes, we are working on figuring out how to put up a gate.

Dear Blog Buddies,

I recently wrote about not having anything in my life interesting enough to blog about.   Life still seems rather ordinary and uninteresting from a blogging perspective,  but it all seems to add up, piece by piece.  I’ve been so busy the last little while that I had to create space just to do this little catch-up post.  I’ve missed all my regular reading at other blogs, and I hope to catch-up on that soon.  Meanwhile, here’s what has been happening in my world. 

We’ll start with Superbaby.  My little man is now off oxygen all the time!  How great is that?  He has gotten much more active and does a little bit of scooting and wiggling to get to where he wants to go, but mostly he is working hard at learning how to stand and walk.  We’ve been having issues with him losing weight though,  and are trying hard to push the food and calories.  He’s not terribly interested in eating however, so we’ve gotten rather creative in our attempts to get enough calories into him.  We mix his pablum with cream, and I make him soups which I then puree and freeze.  Usually I take the congealed fat off the broth before I use it for soup, but not for him!  Full fat all the way!  When we can only get ½ tbsp of food into him at  one sitting, we need all the calories we can get.  He has started gaining again recently, so I just have to keep a good eye on his weight and get him weighed on a more regular basis.  He is also working hard on getting his first tooth.  What a drawn out process that is turning into!

 Colds, colds, colds!  I can’t believe the sickies around here!  It seems as though I am the only person in this house still feeling completely healthy.  Almost makes me want to move out!  Even Superbaby has been coughing and needing his sidestream medications again.  It seems like it is just one after another.  I have two of the older kids home from school today over coughs, ear aches, and sore tummies.  As long as they don’t breath on me…….

 I’ve started a job.  An actual paid position!  Don’t get too excited though, it isn’t much.  I’m now working as secretary for our church.  A bit of typing and proof reading for the pastor and the board.  Just a few hours a week and it can just about all be done at home.  Perfect for my family, which always comes first, and wonderfully flexible.  A little bit of pocket change will be nice as well, but that is likely all the wage will amount to.  I told you, it’s nothing too amazing, but it will help keep me out of trouble.  J 

We have another check-up trip with the Dr’s in the city next week.  I’ll be disappearing again for awhile over it, but have no fear, I will always return.

 So now you know what is going on here.  I’m hoping to get to visiting everyone else this week so that I will also know what is going on there. 

 Blessings,

Jennifer

February 20th

 

 One year ago today…….

I was in Edmonton for the ‘regular’ ultrasound check-ups on our baby.   The fetal echo of his heart was done in the morning, and everything looked as it had the two weeks before.  The ultrasound was done in the afternoon, and they found signs of distress in the baby that were not present in the morning. 

One year ago today…….

My baby was delivered by emergency c-section.  A team of professionals from the NICU were standing by, waiting for him.  The hour and a half that I waited for them to stabilize him was horrendously nerve wracking.  The first time I got to see him, he was covered with tubes, I.V. lines, and on a breathing tube.  The nurses sat me up just enough so that I could reach into the transport isolate and touch the one bare spot I could see on his head.  Then they whisked him away to the other hospital, and  I stayed where I was for the next three days.

One year ago today……

I didn’t know or really even believe that my baby would survive.   Today, he is my proof that miracles exist. How far we’ve come Babe, how far you’ve taken us.

 

Happy 1^st birthday to my little Superbaby,  Sean. 

‘Tis the Season….

 

Well the good news is that Superbabe seems to be feeling a bit better.  His days are easier at least and I’m hoping that the nights start to follow soon.  We saw the Dr. again yesterday for a follow-up and he said his lungs sound ‘wet’, but nothing else seems wrong.   We’ll just have to keep a close eye on him I guess.  Anything else shows up or he starts sounding worse, we’ll be heading back in.

Meanwhile, the short nights are starting to wear on me, and I think I’m coming down with the same cold.   I had a scratchy throat a couple of days ago, and now my nose is running so much I think it has started training for a marathon.  My daughter is starting to feel a little under the weather too, but Mr. Man is taking some of the kids wall climbing today, so she says she won’t “be sick” until Sunday.  I’m not sure I can hold off as long as her, but as soon as the sun comes up, Mr. man is getting kicked out of bed and being handed Superbabe for a few hours.  4 am is a terrible time to get up and I need a few more hours sleep. 

 

 

Sleep Deprived

I envy this cat!  Wouldn’t life be so great if we could all just lay down wherever we are and sleep?  Wherever and whenever.  My brain is so tired right now that sleep is just about all I can think of.

I think it is how deeply this animal is sleeping that I envy so much.  Superbabe has come down with a cold the past two days, and sleeping has been very difficult for him.  You all know how it feels, when your nose is stuffed, your chest hurts, and all you want to do is sleep.  Except you can’t because every time you lay your head down breathing becomes difficult.  His night, and thus mine as well, was very disturbed last night.  Although Mr. Man running and yelling at the top of his voice in his sleep didn’t help me either, but that is a post for another day!  Sometimes we just can’t win for losing…..

So Superbabe is feeling rotten enough that I am no longer allowed to let go of him.  I have found that he sleeps well when he is held upright against my shoulder.  Guess who will likely be sleeping in the rocking chair tonight?  But that’s ok.  This to shall pass, and when he is feeling better, I’m getting myself a Do Not Disturb sign, finding a nice soft comfy corner away from traffic, and going to sleep……

Good nite folks!

 

We’re back!

So New Years has come and gone, and we have been to Edmonton and back. The trip was great as far as travelling in the winter goes. Plus, everything with Sean went so much better and smoother than we had even hoped.

I don’t know how many nurses and Dr’s asked us if we had been through the cath lab before. Of course we would say ‘yes, when he was two weeks old.’ They would then ask how it all went and we would say, ‘it was a disaster and he nearly died.’ The reaction was always the same. “Oh”, and then the kid gloves would come out and we were treated with the utmost sensitivity. Of course, at that point, it was useless for them to downplay any risks, because we had already seen just what could happen in the worst case senario. As well, we were sure to let everyone know about what happened when Sean went through the MRI and how upset and traumatized he was afterwards. Everything was so different this go around, and Sean was much happier. (Which means, of course, so were we!)

We were at the hospital at 6am Thursday morning because Sean was booked to be the first case in the cath lab. We were called in at 7:30, and he had fallen asleep about 45 min before that. I went in with him this time, and he woke up as they were looking at his hands and feet, trying to decide where to put the IV. He started to get upset, and they decided very early on to give him the sleepy gas. He panicked and tried to hold his breath, but he calmed down some when he looked at me. He fell asleep and then I left. It was so much less traumatic than the MRI was! Also, we were both allowed in the recovery room, which was really nice. Sean was extremely upset, and we were able to pass him from one to the other according to what he needed. I layed down with him in the stretcher to go up to room where we spent the rest of the day and the night. When we got to the room, I immediately asked for him to have a bed (they had a nice crib already made up and waiting) and that was changed for us right away. All I had to do was sign a waiver and there were no problems. That way it was easy for me to nurse him, and we were both happier over night.

The cath lab itself went very well. There was absolutely no problems! They did a balloon dialtion on one spot in the left pulmonary artery, and the pressures in the artery and his heart were a little bit lower afterwards. Apparantly the Dr found that the flow and pressures weren’t as bad in there as they originally thought. His artery is quite elastic and was letting the blood through quite well anyhow. Nonetheless, the dialtion did make some improvement as proven by the follow up tests and scans that were done the next day. They predict that he will need to have the pulmonary valve replaced sometime in the future, which would be open heart surgery again, but don’t expect to have to do anything other than monitoring for quite some time. The longer the better I say!

So Sean was rather out of it for much of the day, but by the time my friend Anna found us at 3:00 or so, he was feeling close to his old self again. He was getting tired of laying down, but they wouldn’t let him sit up until 4. As soon as 4pm hit I sat him up and he was smiling, waving and clapping and banging his arm with the IV around. We were surrounded by very sick babies all going through morphine withdrawal after surgeries, so little Sean with his smiles and cute antics was very enjoyed by all the nurses. We also found that when he was sitting up he could keep his oxygen levels up enough that we could keep him on room air. As the day wore on, we found that as long as he was awake, it didn’t matter if he was sitting or laying down and playing, the extra oxygen could stay off. Yeah! When we left, it was shown that he only needs the oxygen when he is both laying down and sleeping at the same time. Halleluah!

So I count this trip as a complete success, and 2008 can now officially begin!

Where do I begin?

My friend Annie at Writerchick Talks had a fun idea to swap greeting cards with some of her readers. I sent my e-mail off right away, along with my address, to join the group of eager cyber friends looking for a piece of reality to attach to the internet person we have come to know and love. Suddenly I realized just how close Christmas is to being here, the baking yet to be done, and the shopping I have to do. And then, I remembered the stack of picture cards sitting on my counter, waiting patiently to be stuffed and stamped. “I have to get my letter done too,” I realized.

You see, every year, along with our cards, I send out a letter to catch everyone up on our busy family life. A synopsis of our year, one could say. I enjoy doing it, reflecting on just what we have each accomplished and where we all are compared to the year before. It amazes me how much we do in a year. There are always one or two things that I have “forgotten” about until I start writing and realize ‘oh yeah, I remember that! Wow, was that really just this past year?’ I have kept a letter from each year and it is fun to be able to look back at them and see where we were and how much has changed. I pulled up a blank document screen and thought about where to start. And thought. I got up for a drink and half an hour later I was still staring at that blank screen. “My gosh,” I thought. “Where do I even begin?”

As I started to think about this past year, I realized that this was not going to be an easy letter to write by any stretch. This past year, our family has been on such an incredible journey that it is impossible for me to even put most of it into words. It is the Year of the Dog for the Chinese, but it was the Year of Sean for this house. I know that I’m not the same person I was a year ago. I feel different in so many ways, and I know that there isn’t a single person in this house that hasn’t been touched, scarred and changed by the arrival of this little person into our fold. How do you tell that to people?

Last year, in my letter I told everyone that we were pregnant with a baby that had been diagnosed with a severe heart abnormality, and that we didn’t know what the outcome was going to be. Out of the 30-40 cards and letters that I sent out, three people called to get more information and find out if we were ok. Out of the rest, I know that some of them were kept somewhat in the loop by other family and friends, but most of them, including some friends that we really expected a call from, never acknowledged our difficult news at all.

So now, this year, after the most difficult year and situation this family has ever faced together, how do I tell these people about our year? How do I tell them about watching my baby on a ventilator and wondering if we made the right choice, if he would ever be able to breathe on his own? About wondering if he would survive the night, the day, the hour? Or about the sacrifices made by the other kids and how stressed and difficult their lives became? About how I cried out of gratitude for being able to hold him at least once. The silent scream, holding hands, days upon days in NICU, pumping and wondering why, the fears, the joys, the stress. Every day that he survived was a miracle back then, and still is, but how do you tell people about such things in a one page summary of your year?

The problem is that I can’t tell them all that. Even those that followed us closely will never truly know what we went through. Only we will ever know what this past year has done to us, how it has changed us. It was the event by which we will forever define this year, but I will never be able to fully tell anybody about it. The words simply don’t exist, and it isn’t what we can or should share in a Christmas letter anyhow.

So, I’m left, sitting and staring at a blank document screen, wondering where to start.

Snow days

We all love snow days, right?
Unless we have to try to go somewhere in them! Right now we are under heavy snowfall warnings until tomorrow sometime. 10- 20 cm (4-8 inches) they tell us. Not quite as bad as the picture above, but still not a great day to take Superbaby out for a Dr. appointment. He does, however, need to have his cold checked and make sure that everything is still ok. I have a couple of things I need to ask the Dr about, so snow or not, we will be going out. Meanwhile, I have four other children all praying for cancelled buses and a day off school. Literally praying.
Whatever your weather, enjoy your day.

It’s been quite a week

I guess in my last post I mentioned that I’ve been cleaning like mad, but I didn’t mention that I was expecting company as well. My brother-in-law, his Swiss wife and their two utterly adorable children were here from last Thursday night until this morning. It was a marvelous visit marked with a houseful of screaming and playing kids, laughing adults, fabulous food, late nights and generally fantastic company. It was, as always, very sad to see them go. This was the first stop on their road trip, and they have a nine hour drive today, and another six hour drive until they get back home sometime next week. No small feat with two very young children in the back seat.

The day before they arrived, Superbaby and older brother needed a booster for their flu shots. Outside temperatures had dropped to -10c (14 F) and there was a wicked wind, but out we went anyhow. Superbaby had been making some weird whistling noises lately, so I had a health nurse listen to him while I was there. Next thing I knew, I was waiting to see the Dr. at outpatients and calling my son who was home with the stomach flu to let him know I was going to be later than I obviously thought. Chest x-rays were ordered, along with blood work and a dose of side stream meds. After all this I finally see a Dr and he doesn’t think it is anything too bad, but he does want baby in for sidestream 2x a day for the next 2 days. Oy!

Now, no trip to the hospital here is ever quick, but that is a topic for another day. However, I was naive enough to think that since we had a standing order and didn’t need to actually see a Dr, we could be in and out. Not so! Our first visit back for the sidestream took no less than four hours. It was a looong two days! By this time, our houseful of company had arrived and Superbaby had been given the ok by the Dr. Over the next two days, Sat and Sun respectfully, I did hear some whistly wheezing from our little man, but it was faint and would come and go so I just watched him carefully. Meanwhile, in honor of our unadjusted company, the weather continued to get colder. It was now -15c (5F) and snowing just as hard as it could. Straight sideways of course!

Monday morning, last day to visit with our esteemed guests arrived, along with a fever, stuffy nose, congested chest and terrible sounding cough. All from Superbaby. Temps now at -20c (-4F) and still snowing and blowing. We were back at outpatients by 8 am. We managed to be home by noon with an entire pharmacy in a bag, but home nonetheless. My amazing Swiss sister-in-law took over my house and I spent the rest of the day tending to Superbabe. Sidestream is now being given at home, thank goodness.

So now, the company is gone, but the weather has stayed and the forecast continues to call for plumetting temperatures and snow. I’m back to running my house on my own, but also playing nurse again. Between the lack of sleep this weekend, company come, company gone, a sick baby and the crappy weather, is it any wonder I’m breaking out in hives?