I used to feel...

Like there were not enough hours in the day. I was always in a rush. Too many things to do and not enough time to do them. The feeling of being a day late and a dollar short, like I was almost drowning was a very common one. Before. Now I have not felt rushed. Not once. I realize its probably because I'm missing him so, but since Deklan passed there are almost too many hours in the day. Too much time to miss him.

Today I realized that maybe this is my gift. My thank you present for taking care of the son who was on loan from The Lord. I'd like to think that I did right by him in his short life. Because of how I feel the universe works, I don't think getting him was a mistake. I've always thought I got the perfect kids. I've always just instinctively known what they needed, and felt its because they were perfectly matched to me. Years ago when talking to a mother with two children, both of whom were adopted, I had asked if they both had the same birth mother as they looked so much alike. Her response was that these children were given to her by God, so why not make them a matching set. That's how I feel about mine. They were given to me. Deklan was no different. When he became very ill at 4 days old I had a very tough conversation with God. I know he's yours, and you can take him God, but I want him. And I got him. For 4 months and 8 days more than anyone thought I would. And of course I'd rather it had been 8 months or 8 years or 80, all those days were extra, borrowed, a blessing.

Those 4 months and 8 days went by in a blink. The days in the hospital were busy ones. He was being taken care of by doctors from many different disciplines. There was always someone coming into his room. Or an appointment to go to. Or a test or scan to be done. Life was busy. And it felt like the time I spent with the other kids was just as rushed. Many a time I'd just wish for more time. And what was always my silent plea to God has now been granted. Once when I had left Deklan (in his less sick days) with his dad and spent a full night at home with the other kids, I returned to the hospital and together The Lumber Guy and I took Deklan overnight to The Ronald McDonald House, where we were staying in the city, on a pass. I asked The Lumber Guy if he felt more comfortable with Deklan here (RMH) or at the hospital. He said I feel most comfortable when you're with him. This must be why Deklan was given to me. I was who God felt most comfortable entrusting him to. So, I would hope it is in return for being there for my precious boy while he was with me that my wish was granted. Although I did it for no other reason than I love him unconditionally. This is how I assume God feels for all His children. And this is His gift to me. More time with the children left with me here on earth. I don't feel I have to stay up late to do just one more load of laundry. I have tomorrow, or the next day.

There is always time to read Pinkalicious again before bed.

Of course I wanted this to be at the end of the post...

I don't even know what to write anymore. Or do. Or say. I've lost my little sweetheart. And I don't even know how I'm able to function. I'm sure its probably because of the kids and their need to be taken care of. They are probably the only reason I get up in the morning. After talking to the hospital social worker for the first time since Deklan's death I feel better knowing even getting up in the morning is progress. But thank goodness people just know that when someone dies you send food cause cooking is the last thing I want to be doing. For the first week I ran at a flat out pace organising and putting the house together after my four month absence. But now I am starting to crash and burn. It's really starting to get hard. I'm finding going out with all the children the most difficult because I feel like I've lost one. I know I have but I feel it in that literal way. The best way I can describe it is this...While in the second big city we were air lifted to The Lumber Guy and I took Little Peeper out for lunch to a nice restaurant. She was the only child with us for the majority of our stay there and it was a luxury for her to have us together. He and I switched off at being at the hospital so Deklan was rarely alone. This particular day we decided to go out for lunch at a restaurant attached to a mall. When we got up to pay she ran. She ran around a booth and out into the mall. But because she'd run out behind the booth it had looked like she ran into the restaurant. She was missing for three whole minutes. Three minutes of sheer hell. We even called security. All she had done was some window shopping. But that feeling of losing her and not being able to find her is what I feel all the time now. And when I'm out with the kids its worse and I'm constantly counting them. I even have dreams and the baby isn't Deklan but its lost and hungry and crying and I can't find it. It tears me apart because everything I believe tells me he is safe and well and happy where he is, so why can't I feel it? I could feel everything with him. He and I had a bond I didn't have with the other kids as babies. It was a physical type connection and maybe I just had it with him because he was the only one who was unwell. I felt it even before he was born. At one point my chest hurt for two days. I didn't know if I was getting sick or if I was tired or why it was feeling that way. He had a chest x-ray and it showed a collapsed lung. Things like that were not uncommon throughout his illness.

I'm trying to pull the meaning and the lesson out of this. It's hard. I'd like to be able to recount his story in a productive, reflective, meaningful way but I just can't yet. Its all gonna come out in bits and pieces for now I'm afraid. All I know is that I was so blessed to have had him, even if it was for just 4 months and 12 days. He was honestly the sweetest human being I've ever known. Everyone who met him loved him. In a way I was lucky. I had him completely to myself for his whole life. His life was in the hospital and my only job was to be there for him. No dishes to do. No kids to get off to school. It was was just Deklan and Mom. His bath was his favorite thing and sometimes I'd bath him twice a day. When we were moved to a shared room with no tub I took him in the shower with me. That was how little I left him. Even when I spent time with the other kids his dad was with him. And one of us stayed until the other got there before we'd leave. In his sickest days I'd stay up until he was calm and fell asleep cause me holding his hand worked better than Ativan. One day he'd been crying for a couple of hours and when I came in and talked to the nurse he heard me and stopped. That's how strong our bond was. So now I wish I could feel that he was at peace. But I don't feel much.

Even in death we could not leave him alone. We did not want him to spend another minute more than he had to at the hospital. We called the funeral home to come and get him the evening he passed so he did not have to go to the cold place in the basement. His father carried him out to their waiting van. He was wrapped in the new little blue blanket I'd bought for him. It was so nice to have someone to buy blue for again. There's been so much pink in this house for so long. We pushed to have him cremated the very next day because we could not fly home without him. I don't know that we'll be able to bury the ashes. It seems fitting that he is here with us just as he always has been. So the little green velvet bag is upstairs in his crib. Next to his dresser full of all his little clothes I washed and put away. I know he's not coming back to wear them, but I just don't know what else to do with them. He'll always be a part of our family. The little brother. And his stuff won't always be here, but right now its fine that it is.

I guess this is probably enough rambling on for now. I'll post a picture that I feel is so fitting. On the bus to the airport everyone paired up. The seats were in twos and we took up a few rows (the joys of having a big family...we also checked 9 bags). All the kids were sitting together and I looked back and saw my sweet little HannaBanana...

My Summer of Sandwiches

The most recent picture of my little fighter.

The PICU days.

Well, it would seem that I am living proof that a person can exist on sandwiches alone. Oh, and I've also worked pretty hard to eat my own weight in puffed wheat cake. There isn't much selection when it comes to hospital cafeteria food, and the hospital is where I have been every day for two months. I'll go back to the beginning now.

Deklan Jon, my little sweetheart, was born on July 7 at a healthy 8.8 pounds. He came into the world in the usual way, other than this time around I had this feeling like I was scared to give birth. It sounds absolutely crazy, but I just had this feeling of impending doom when I'd go into labour, and those feelings of stress shut labour right down. I actually said to The Lumberguy during labour that I had a feeling like something was wrong.

Fast forward a couple of days of labour stopping and starting and our healthy, wonderful, long awaited baby BOY arrives. A little strawberry blond, blue eyed miracle. Everything seems normal. Perfect actually. He and I had an amazing first day at the hospital. He nursed like a maniac, loved to snuggle, and even slept in my hospital bed with me. We even took our little guy home. That evening at home, day 2 of life things start going backward. He seems fussy, not nursing as well, clammy. In the morning I phone the health nurse. She says everything I am telling her is still within the realm of normal and I could leave it if I wanted. But that sinkin suspicion inside me told me something just wasn't right. I phone my doctor's office. He says to bring him in to emergency in the city an hour and half away if I wanted him seen. I think everyone thought I was crazy. Going into the city again. Even I didn't want to make the drive again after all the labour trips, but something just wasn't sitting well.

By the time we got to the emergency room he was quite lethargic. That was actually the last time I'd hear him cry in 3 weeks, as he slipped into a coma.

The doctor, a pediatrician of 30 years told us he was just dehydrated. And maybe he had an infection. They started an iv and took a sample of spinal fluid. It was really hard for the hippie in me to accept that they were going to start him on two different antibiotics 'just in case'. That night he lost the ability to self regulate body temp. And this started the process of what I loving refer to as the hospital 'fucking the dog' for 2 days while his condition deteriorated. They tested pretty much everything and found nothing.

On the second afternoon I witnessed what may well have been the scariest thing in my life. I saw my baby stop breathing. His little lungs had been working too hard. He had become septic. He was airlifted to a bigger hospital. In retrospect him stopping breathing was a blessing, because it got him where he needed to be and fast.

Within two hours of being transported we had a diagnosis. The doctor came into the little, seventies hotel reminiscent waiting room where we'd been waiting for hours and said theres good news and bad news...The good news is we know what it is, bad news is we don't know if we caught it in time. We pretty much paced a hole in the floor waiting for the logistics to be sorted out...he needed to be transported across the city and it was unclear if he'd make it. A NICU transport team was thrown together, his drugs mixed, blood typed and ordered from the blood bank to prime the dialysis machine. We actually saw the ambulance, his ambulance scream past us as we sped across the city. That was a feeling I'll never forget.

The doctors worked feverishly against time into the wee hours of the morning. I remember the pediatric nephrologist coming out and talking to us, telling us about the CRRT machine and its risks, the only chance at saving his young life. It was the only way to get the unsafe levels of ammonia out of his blood. A good number for an ammonia level is 50. At that point his was 1800. It had poisoned his system, caused seizures and his organs were shutting down. I don't want to go into detail, but they explained he most likely had a urea cycle disorder. http://www.nucdf.org/ucd.htm

I can't even remember now, as the days have all run on into one long never ending blur, but he was on the dialysis machine for about three weeks. Upon coming off he went into septic shock and he was found to have a pseudamonas infection from all the lines in him which had been masked by the machine. It took trying out different medications until finally antibiotic number 7 got it under control. He had to be on that for 4 weeks after his blood cultures started coming back negative. Slowly but surely he started losing lines and his ventilator. He was stable enough to be moved from the pediatric intensive care unit after 4 weeks to a regular ward within the children's hospital.

We have been staying on the ward for over a month now. I hate it. It is so hard and so far from the life I envisioned for myself or my children. In order to be a good mother to him, I am separated from the others. After being misdosed and overdosed, I do all his feedings and give him all his medications myself. Let me tell you, and this is not just the hippie in me talking as I have witnessed it myself...if you or a loved one is hospitalized, you need an advocate, or if you are well enough advocate for yourself. Check your chart, ask questions, call your caregivers on everything. There have been two big mistakes made by staff since we have been in the hospital. They were mishaps with drugs, as well as other mistakes like lab requisitions for another child having Deklan's name stamped on them.

I think the hardest thing in all of this beyond almost losing him was the fact that I'm not able to nurse. I can't nourish my child. He has to be on a very strict modified combination of formulas. Amino acid modified medical food...yum.

It is so late and I am very tired, and there is so much I'd like to say but I'm going to try to cut it sort of short. Maybe if I get back to my computer I will blog more.

Welcome To The World Little Man

Strawberry Blonde Snugglebug

07-07-09

8 lbs 8 oz

22.75 "

Adventures in L & D

No. I have no baby to show for my night in the hospital last night. But I did have an adventure, let me tell you.

First, I'm quite sure this baby may at this point be far too comfortable and has decided to stay in indefinitely. Well, it threatens to come giving me an evenings worth of time able contractions, which play me out and I give in to sleep, only to wake up and have them gone.

So for the last couple of days I've been feeling off. Headache, blurry vision, weakness, all stuff I've never experienced in pregnancy and can actually be a sign of trouble. I decided after toughing it out the first day to call in to labour and delivery last night. The nurse said it can be indicative of a problem and all it would take is a few minutes on the monitor and a blood pressure and urine test to know for sure. But here's the kicker....hour and a half drive to get there. I thought to myself that if something were actually wrong or the baby was under some kind of stress, I'd never be able to live with myself not checking it out because it was too long of a drive. (Mothers would drive to the ends of the earth for their kids, so really what's an hour and a half, right?) That and it was an excuse for The Lumber Guy to eat a Macdonald's burger.

Everything checks out, the baby is really inactive, which it has been for a few days now, but no big deal. The nurse pretty much says everything is ok but lets wait for your doc to see you since she's on call and is coming in anyway. She also says you're only a finger tip dilated but the dr might want to check you herself. Ok this story is getting way too long. On to speedy version now... Dr comes, says you're 2 to 3 so we'll keep you for the night. Baby does what it has been doing, plays the yep I'm gonna come tonight, I do a few laps around L & D, get tired, go to sleep, wake up, nothing. Very depressing. Dr comes back this morning, and this is where the real fun begins. She tells me I'm about a 3 to 4 and I have two options. A) She can try to rupture membranes, or put me on a drip to augment labour and come back and break water at noon. B) I can go home.

Do I want to have my baby today? Heck yes! Do I want to slide down that slippery slope of intervention? Not a chance! I can see how a woman would go for this. After a week of stop.start.stop.start. it would be nice to have it over and hold my lovely little baby. But I just could not willingly sign myself up for that. I've never had my water broken before, or a drip. I have no idea what that would be like for me. What I do know is that I have been able to birth 5 babies naturally without any drugs or interventions. And I don't say this like I'm some kind of hero. I just know that I'm capable of doing it, and to tell you the truth the other option scares the living daylights out of me. I don't know how my body would tolerate an unknown medication. Maybe I couldn't weather the storm of contractions without my bag of water intact. I opted to come home and see what my body decided to do.

And it was not the decision the dr thought I should be making. She actually said, well I'm not on call anymore so I won't be following you around, and, I guess you want to have your baby in the ambulance.

I guess this didn't fit into her schedule as nicely as she would have liked. The nurse was super supportive. She told me she's only been a L&D nurse for 4 years but she's seen it a lot. One thing turns into another and you end up pushing your body to do something its not ready to do and all too many times the end result is a section.

So here I sit, blogging, and doing dishes and laundry and getting to spend the day with my little Peeper and Poopypants. I could have been hooked up to a IV all morning. Maybe I'd have had the baby by now. Maybe it wouldn't have been that bad. But I love where I am right now. I'm happy and comfortable, and I hope that means the baby is too.

P.S. Well not too comfortable you little stinker. You still need to come out and meet us.

Riding The Wave

Yes I'm still riding my hormone high, and it has enabled me to crank out another finished bedroom. Well, technically its not finished. The Lumber Guy still has to finish putting on switch plate and outlet covers and take down some painter's tape for me, and my darling little HannaBanana will have to decorate as she sees fit, as its her room. She is the sweetest girl. I found her many collections of shells, rocks, and animal figurines when cleaning up. And the Webkinz....oh those Webkinz. They are like children to her. She has made them clothes and toys and even takes them to school. I set up an old pantry which became Peeper's closet for a while, as her Webkinz display spot. (The green and white thing in the corner.) In all of this craziness of cleaning and organizing I am finding new love for my old house.

The Nesting Insanity

After, which because of my very limited computer skills is first.

Before (quite embarrassing really)

I am definitely a woman gone mad, or, well that's how I feel lately. I have literally been at a flat out run around this house for almost a week. I just finished up work last Saturday, and thought, ah time to relax til this baby comes. Wait a minute...that was my easy job. I got paid for it too! Since then I have been twice as busy. I realized that I was nowhere close to having this house the way I wanted to have it before the baby came. And its funny how every. single. stitch. of. bedding. suddenly had to be washed again. Oh what hormones will do to you.

And I must say that physically I feel wonderful. My sensible little bean of a baby decided to turn head down and since then its been smooth sailing. The kids are all getting along pretty well too. That's always such a happy surprise when it happens. They've been to the pool every night for the past six night, with the exception of last night. (storm) But we had eye appointments in the city anyway, so it kind of worked out. That brings me to the next bit of my nesting insanity.

I've never been a real 'material' person. But lately I haven't felt prepared in the way of having all the 'stuff' needed for a new baby. Weird considering there have been five before. So while in the city I ended up spending an obscene amount of moolah. Now, however, I am ready. Bedroom painted, furniture moved, crib set up, bedding and baby clothes washed, coming home outfit bought, washed and packed, natural baby products stocked. I even bought a smaller size of diaper wraps for my prefolds so I can start using cloth diapers sooner than with Peeper. I will wait till we get past that messy meconium though. Now I just want to get the rest of the house in order, if that's possible. And maybe even have some meals and baking in the freezer and ready. It may be overly ambitious but I am gonna ride this hormone high as far as it will take me and get done as much as I can.