one person

I've been asked recently how do I keep going with all of Matthew's needs, William's needs, the dog, the house, myself when Ian is gone for extended periods of time. Well, in all honesty, it's not much of a difference in care when he is here.
Now that sounds bad actually. My husband does an astronomical amount of work around here, especially in helping with the house! I got one of the good ones I say. I cook - he cleans, I wash clothes - he folds them, I tidy the clutter - he vacuums the floor. See! Gotta a GOOD one! :)
He's also a huge help with the kids, both kids. If I need to go to the grocery store, he handles the fort. If I'm exhausted, moody (it happens monthly you know) or am driving to the hospital the next morning, Ian handles all of the night feedings and diaper changes. (He goes through THREE diapers at night people!) But during the day, the kids are on me. 99% of Matthew is on me too.
When you have a child that has specific things that need to be done, either specific measurements, specific times, specific methods...it's just easier when one person handles it all. When both of us are home on the weekend, it's never a halvsies situation. We've done that before and it's been an issue. I would bolus Matthew 30 mls and then Ian would come right behind me not 20 seconds later giving him another 30mils - and here comes the puke! Fortunately we have never done it, but I've known other parents to double up on medicine, unknowingly giving the same dose twice. But we have been late giving medicines before - thinking the other one had done it. Now it is just set.
It's a lot of responsibility for one person, but even more for two people. Ian knows how to do it all if I am gone for whatever reason. He has no issues with it...though he is out of practice and if you are ever out with me to dinner or something - we WILL get interrupted by repeated phone calls. ;)
What does it mean to have Ian home. It means sanity (any mom of a 2 yr old and 4 yr old will tell you that!). It means companionship (gets mighty lonely when the boys are in bed and the house is quiet). It means camaraderie (taking turns who gets to wake up at 6:30am with Matthew or 8am with William). It means love (I think that one is pretty self explanatory). It means being able to vent and laugh, to clap and to be held, to worry with and to be reassured.
I miss him. Even for this short time...I miss him even when he is gone just for a weekend! But he has his duties and I have mine. I am mommy. It all comes with the territory, even the demands that weren't necessarily in the "What to Expect" books.
I'm just SO thankful this didn't happen when we were at hemo three times a week! Whew!

9 lives and outfits

This time two years ago, I was finally breathing a sigh of relief. We had received a call at 6am saying we needed to come down to the NICU right away, Matthew had taken a turn. Just a couple days prior we had started getting the paper work ready to begin our PD training to go home, so this call kind of came out of left field. I quickly called Ian's parents to come get William (as they live 5 miles from us) and ran to the car.

Matthew, the week before he got sick.


Let me back up a bit. Matthew has more lives than a cat is supposed to...and technically - he'd already used them all up during the pregnancy itself! It was both awesome and terrifying to go in for fetal surgeries. To watch my little 12oz son be "put to sleep" and have a catheter placed through his stomach into his bladder. I couldn't stop watching the monitor, partly because I'm a science geek and LOVE stuff like that, but mainly because I'm a mom and I wanted to be with my son every step of the way. If the surgery caused him to bleed out, (which the last one he hemorrhaged from causing them to stop surgeries all together) I wanted to be there for him (as best as I could) singing, talking, stroking my belly until his little heart stopped blinking on the screen. I was both excited and nervous to see him every time I walked in the door. I had two ultrasounds (sometimes three) every week of my pregnancy from week 16 to week 31. I just didn't know if I'd see our baby happily wiggling (because that's all you can do with no fluid to move it) or our baby eternally sleeping. His birth itself: all the complications with the pregnancy, oversized bladder not leaving a lot of extra room for his lung/heart development, low to no amniotic fluid except for a couple of days each week when I'd get an infusion and let's just add on a prolapsed cord while we are at it ok! Let's just say his guardian angel is working overtime!
We made it to Scottish Rite and doctors were surrounding his isolette. He was limp, unresponsive and whiter than snow. He was back on oxygen and his heart rate was everywhere! At one point, he coded while I was holding him and the nurses had to physically restart his heart in my arms. I think I went into shock because I took it in very calmly. Peritonitis had gone septic. Being only at the gestational age of 36 weeks (or 4 weeks before he was supposed to be born) probably didn't help as he had no reserves to fight with.
Since then Matthew has been septic three times, all causing the same reactions but without physically restarting his heart luckily. Though they did bring up a code cart twice during hemo when he went into septic shock. Another time they were set to replace his hemodialysis catheter, but his potassium was just too high to operate. At that time the kayexlate (really gross thick, grainy and sickeningly sweet medicine that binds to potassium in your body) wasn't working on its own any more. He had had 4 dose in 24 hours and his potassium only increased. So we had no choice but to go ahead with the surgery. The surgeon told me to have family near, their was a higher chance that he wouldn't make it than him actually pulling through. That was the only time I cried in the OR holding area when they came and took him from my arms. I didn't know if the next time I held him if he would be warm or cool.

Here he is back in my arms that afternoon:


Since then he has fought off congestive heart failure, outrageous blood pressures that are high enough to send a grown man into a stroke, line infections, meningitis and encephalitis. All in a days work for him. The nurses often remark how calm I am about this, how they never see me break down. I don't let myself break down until that situation is over. When it is over, we get discharged and I run straight for the shower. I turn the water to scalding, my skin is swollen, red and tender...and I cry. I allow myself five minutes to get it out and over with. I don't have time to dwell. If things still need to be said, I talk to my husband or a friend. I write a blog or a journal I keep bedside. It used to help when I would lots of nightmares during the last couple months of hemodialysis when they said my son was fading. Yes, lots of nightmare...
But in the end, my dream has come true. My boy lives to fight another fight another day. I remain stoic to all things medical, he remains strong. It works for us.
I've met many people in the past two years, when my small little sheltered life of all babies are happy and healthy was opened to a much broader range. Filled with more love and more pain than I could have ever imagined. I've been witness to both miracles and tragedies and they both haunt me in varying degrees.
For every size of clothing Matthew has grown into, I've picked him out something to be buried in. Morbid? Perhaps...but I knew I wouldn't be able to cope if the time came. I have outfits from preemie size up to 24 months. Only twice did I actually pull them out thinking I really was going to use them in the next day or two. Matthew has grown into a new size - 2T. (no more baby clothes) :( And I have NOT picked out an outfit. I don't know why the sudden change in my behavior. Just a month ago we had a scare with his brain swelling up! I think I'm finally at peace with EVERYTHING! I'm finally accepting what God has given me, given my son to deal with and I'm OK with it. I will no longer prepare for the worst case scenario. I will handle things as they come, like all parents do.
Two days ago, our little family joined our extended family at Chick fil a for the first time in almost a year. I took Matthew onto the playground there. He isn't supposed to be around that many children, especially with his biopsy coming up (I purelled that kid until he was wet and reeked of alcohol!) He went down his first slide. He looked at me - "gen" he said with a smile. On the top of the slide he said "I luv slide" and then "weee-ed" his way down.
The only outfits I will pick out will be which ones he can get dirty as he plays and lives.

Escape

I am proudly announcing that I have seen the new Twilight movie 3 times in one week. :) Yes, I love it and yes I will be 31 in less than a month. It's not so much the movies, although they are entertaining and the effects are getting better with each movie (in my opinion), I'm in love with the books.
I never was a real reader when I was younger. I would read the necessary books required by the state of Georgia and the education system, but other than that...I wouldn't really read for pleasure. Until I was on bed rest with Matthew. Fortunately for me (and the rest of my family) bed rest only lasted three months (helps when someone arrives 2 months before they were supposed to also - really cuts down the couch time).
My mother had just started her membership into a neighborhood book club. After the news of Matthew's condition, I wanted to do something that kept me from thinking and dwelling on it. It's hard wondering if every minute of the day if your child is alive or has suffocated due to cord compression and lack of amniotic fluid. Needless to say, it ends up taking a toll on your spirit. I had to escape. My mother mentioned a book they had just finished reading in her club - The Other Boleyn Girl. What did I have to lose? I gave it a try.
I got sucked into the pages of drama, lust and death in light of the royal house. Seeing history unfold in a new light about an old story everyone knew. It helped me forget my problems for a moment. I needed that moment; it enabled me to breathe without the pain in my chest and smile without the tears coming to my eyes. I escaped my own drama of life and quickly turned to the other books in the series to keep the masquerade of normalcy up for others to see.
Then Matthew was born. My world turned upside down. Everything I knew about caring for a baby was thrown out the window. He was special with unique needs. How many mothers force upwards for 14 medicines into their two month old, decant formula because the minerals (even in kidney friendly formula) are too high, and create a clean/sterile environment to pulse dialysate into a 4 pound baby for 12 hrs? I don't see too many hands going up... I had to unlearn everything I had learned with William. This kept me busy.
Even though I was busy, the quiet moments would be hard. I still had my child to hold and to love, but mourned the "normal" things in life I wouldn't get to do with him. I had to grieve for the loss of feeding my son. One of the hardest days was when I was told my son was slowly starving himself to death. He was malnourished and due to that developing nutrition deficiencies that are only seen in 3rd world countries. I was told that with his case of rickets - they would have to go in and individually shave each bone so he would be able to walk. Many times I wondered if I had pushed too hard to keep him alive in utero to let him endure so much pain on the outside. It ate away at me.
My bad month was October 2008. Matthew had 6 procedures that luckily were grouped into only 4 surgeries that month. He was NPO 7 times for 12 hours for longer. At his heaviest - he weighed just shy of 10 pounds. He was 4 months old. NPO nights were the worst, I didn't sleep because he didn't sleep. How could he when his stomach was knotting up in hunger? William was 16 pounds at 4 months and lapping up cereals and stage one baby food. Thirty two ounces of formula were NOT enough for him. Matthew would only get 3 oz of formula in before he tired out and went to sleep, waking up 2 hours later for another go. One night he was NPO for surgery the next morning that was put off due to his calcium levels. Twice he was NPO because his potassium was sky high and peritoneal dialysis wasn't working any longer. He was not allowed even the decanted formula because even a few mils of potassium could trigger cardiac arrest. He went 22 hrs that day without taking any food in - I still tear up thinking about his screams.
Yes, October was bad for me. Seeing my son's smooth baby skin transformed into landmines of holes as the surgeons played hopscotch with his PD catheter. And finally demanding that they allow me to feed my son in the only way that would guarantee him nutrition, via his g-tube. I would leave our small room once in the morning when our favorite nurse would come in while Matthew napped and scampered downstairs to eat a donut. I was back in 10 minutes and it only took that long because it was about an 8 minute hike going and coming from the cafeteria. My world existed in that small 6x9 room. My window overlooking the helicopter landing site. I hated hearing that helicopter - I hated what it meant. Some child and their family were going through things much worse than we were.
I stayed by Matthew's side, because I felt it was my job to monitor him, feed him, bathe him. Hold him when his IV blew out, bicycle his legs when the gas from the surgeries got to be too much, and calm him back to sleep after he had cried himself to a state of exhaustion. I needed to get out, but I couldn't leave him. So, I escaped once again.
My mother brought me the newest book they had read in her book club - Twilight. I was HOOKED immediately. Engrossed in the romance, fantasy and teen angst. I was swept into yet another world, this one full of possibilities that one can create in their own mind and world of make believe. I devoured all four books in the three weeks we spent at the hospital. Like I said, I didn't want to leave Matthew physically, but for my own health and heart I had to escape somehow. It through me back to my own teenage years when everything was possible and I was still in search of my white knight. (sparkling skin was optional) ;)
People wonder why I am so engrossed in this saga, why I see the movies over and over...read the books again and again. Because it helps me to escape reality. I think we all need that from time to time. Mommies of special needs kids - maybe a little more than most. It's not just Team Edward or Team Jacob (though I do have my preference!), it's about checking out for an hour so that I can be there for the other 23 hours of day and continue being strong. My kids need me, all kids need their parents. And all parents need their me time. These books helped me when my me time was non-existent, but highly necessary.
Ian is leaving...I don't know when...for the gulf coast soon. I will escape again when I am making my way through single parenthood. Finding time to schedule clinic visits, make therapy appointments and get William to preschool on time. Oh yes, I will escape and I will be a better mother for it.