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.

Time flies

This 4D ultrasound was taken just two days before Matthew was born. It was taken about 9 weeks before I was really supposed to see him. Surprise!
Two years ago, Ian and I got up at 4:30 am and got ready to head out to Northside Hospital in Atlanta. We had a 6am appointment time, even though they don't open until 8am normally. (yeah, me and my MFM were tight like that) ;) He usually only worked at the Atlanta office on Monday's and Friday's, but it was a Tuesday and baby boy needed some fluid (even though I had just had some on the Friday before - he was a little fish). So Dr Gomez came down and opened up just for us.
I've described infusions before - they are not fun, but they are SO rewarding. I just LOVED seeing Matthew go from no fluid to LOTS of fluid. You could almost hear the chuckles and see the smiles of happiness on the ultrasound. How he would reach out his hand or kick with his feet to the needle where the fluid was pouring in from. You could see his little hands waving back and forth to make bubbles. You could watch the shunts he had pulled out at various times post-surgeries float up and around my uterus...sigh.
That morning Dr Gomez was playing his Rolling Stones cd. Matthew was enjoying it and "dancing" away. Whenever we need to do something close to him or the umbilical cord, we had to turn down the music so he would be still. :) And sure enough, about 5 seconds after the music stopped - so would he. It was like he got quiet to listen to see where it had gone. :)
For our early morning wake up call, Dr Gomez ordered us breakfast while I was on the monitor for 30 minutes. I was having contractions. I had them a lot the last week of the infusions. Of course I had three infusions in 7 days - so that might have had something to do with it too. ;) More meds to stop them, yummy breakfast, apologies to Dr Gomez as he called Northside satellite office in Alpharetta. It was already 8:15 and he obviously wasn't there... Infusion took a lot longer to do once Matthew as past the 28 week. He used up his fluid so much faster after having received his steriod shots. They said that was how it was supposed to be as he was practicing his breathing more frequently. He was bigger, there was less room to place the needle without causing damage to the cord, the baby or the placenta. So instead of it taking an hour, it would sometimes take upwards to two. Especially that last when I was having contractions that pushed the needle out - causing them to re-sterilize my tummy, get a new needle and find a new place to begin again.
Lisa, our favorite ultrasound tech, sprung me loose after receiving Viki's blessing that the contractions were slowing down. Down the hallway to a room I hadn't been in yet, I'd been in most! It was the FUN room. The 4D ultrasound room. Lisa spent half an hour giving us picture after picture of our little guy. He was gorgeous. Looked like a doll. I was SO excited to meet him. Little did I know it would only be 48 hours away.
But that's another story...
Thank you to the Maternal Fetal Medicine department at Northside Atlanta. Without your steady hands, your genuine concern and your willingness to put up with my bad jokes (and my laughing and shaking belly while you are trying to operate) Matthew's birth was filled with hope. The hope that pushed me to keep pushing for him.

Snapshot Sunday

Didn't think I'd go a weekend without a snapshot did ya? ;) Well, first I have to give a shout out...I'm HOME!!! I got home yesterday afternoon and spent a glorious and refreshing night sleeping in MY bed for the first time since Monday night! Felt SO good...would have felt better if I wasn't hurting, but we can't have everything in life and I'm just grateful to be with my husband and son again!
But alas, I digress (as I usually do)...on with the snapshot. Now, I'm kind of cheating on this one since all of my photos on the computer in the office downstairs along with the scanner, so I got this from photobucket. And it is just a picture of bubbles. Yep, free floating water bubbles...not even the pretty, multi-colored, childish, soapy bubbles. The plain jane, clear as water, water bubbles like you would see coming out of an aquarium filter. But these bubbles were SO precious to me on Friday when I saw bubbles entering my womb to give Matthew a freedom of movement and a better chance of lung development. (Which he is fully taking advantage of both with sommersaults and hiccups!)
Some people ask me what it feels like to be infused...well to be honest...it feels mighty uncomfortable! When you go from something the size of a softball to a watermelon in 30 minutes, the stretching and pulling hurts. The pressure and fullness I guess feels like you just ate three Thanksgiving meals in ten minutes time only to be told...there are no more Tums or Gas-X left in the house! NO! And let's just say that unbuttoning your top button on your pants just doesn't cut it! The gush of fluid into a dry environment can be likened to an uncomfortable tickle. Like ants creepy up your leg or that feeling you get down your back if someone scratches their nails on a chalkboard (if that even effects you...it honestly doesn't do a thing to me). But after a few seconds it goes away and you just start feel the fullness until it seems you can't expand anymore like a water balloon that is being tested to it's limits. The most uncomfortable part is of course the needle and tube insertion. The needle stick, I used to liken to an ant bite...no biggee what so ever, but now my stomach is so sore and bruised, these small needle sticks are feeling more like an attack from an angry wasp. The tube insertion is more pressure than pain I guess, I can feel the pop everytime it goes in further to get to another layer of muscle, but since the opening is already made with the needle...it just feels like you are kidding yourself that you can really fit your head through that turtleneck and keep pulling. It's uncomfortable but not painful like I said. This infusion took the longest of any of the others, mainly because I was dry, but also because the doc had to go "searching" for a good area. Now the "searching" HURTS! It feels like a burning, ripping sensation...which it kind of is since he is separating the amniotic sac from my uterus. Usually this doesn't last long, but it went on for nearly 8 minutes this time around. My body was drenched in sweat by the time it was over! But the minute he found a possible place, a big smile just sweeps over you and you feel NO pain! With the needle and tubing in for 30 minutes or longer, that starts getting more sore around the "poke" site. It's been two days, and it's still sore to touch today, but I know every day will be better. And I'm sure when I go back on Tuesday for a fluid tap and more needles I will have had to morning to rest in relative comfort.
But like I said, the bubbles are the BEST! And Matthew really liked them as well. He had his own little jacuzzi jets at this feet. The minute that fluid started pouring in (all 750cc's)he started kicking furiously! It was just like someone turned on the radio and he just could resist getting up and dancing. We were all laughing (though I was trying not to since I still had a huge needle going through my stomach). Several times he kicked too recklessly that he would stab his own little feet on the infusion needle! We'll have to make sure little Matthew has one of those crib aquarium toys. I think he'll like the bubbles. :)

I've moved...again!

Man...I thought you moved a lot in the military...which we did. But at least we had longer stints of time in places. We haven't even settled into our home that we bought back in February, only for me to have a new address: Northside Hospital Atlanta, High Risk Unit, room 100. Yeah boy! Needless to say, I've not been as excited about this move...but am more grateful than can be said. I'm so happy they are helping my son even before he is born. I love our doctors, nurses and techs!! They rock.
But needless to say, I'm pretty much on continuous monitoring and getting poked and prodded quite a bit, so I won't be blogging all that much from now on until Matthew arrives. (which could be an hour from now up to three weeks). They will schedule a c-section for the first of June when I am around 31 -32 weeks. They say the risks of prematurity will be less than the risk of keeping him in with absolutely NO fluid. Yep, the infusion failed. :(
So now it's just a wait and see. I'll be back as often as possible.
I want to say a little prayer of Thanksgiving to my friend from Liz and her daughter Claire. I am SO happy for them and proud of mommy!! Great job. I've read the blogs, just haven't had a lot of time to post...but wanted you to know that I did read them. :) Thanks for your prayers for us. Hopefully I can keep little munchkin in a while longer. Vitals time...tata for now!

It MUST be the hormones!

I can't believe it myself! I actually want to be pregnant again! I'M STILL PREGNANT WITH THIS LITTLE GUY! My SIL told everyone yesterday that her and my brother are expecting their second child together mid January. I was so excited for them. They had been trying for a year. But after the fact, the only thing I could think of was...I want to be pregnant. Then Matthew gave a hard kick to my spleen and brought me back to reality. :)

I always said I wanted 2 -3 kids. But with all the ups and downs and sleepless nights of this pregnancy...I vowed if Matthew pulled through...we wouldn't tempt fate again. Our family would be complete. And it will be. Who could ask for anything more than two precious boys, brothers and friends for life? I was happy to play with my brother when I was young, but their comes a time when a girl is all about dress up and boys and a boy is all about dirt and sports. There is a distance that comes with age between brother and sister...you talk, create memories and enjoy family vacations together...but you don't really "play" with each other any more. And then comes the dreaded high school years when I had a crush on one of my brother's friends...THAT didn't go over well, especially when my brother's friend asked my brother if he could ask me out. Needless to say, someone never came back to the house after that. But William and Matthew will be brothers. I know they may have different likes and personalities...I expect that...but it just seems "nicer" to me to have two of the same. Perhaps others that have "been there, done that" can enlighten me. :)

But another reason I proclaimed at the top of my lungs "I'M DONE!" was out of fear. Not much out there truly frightens me except thinking of something happening to my hubby, kids and close family/friends. Public speaking...I thrive on the attention, death...why be afraid to be at peace when it is your time, tornadoes...the beauty fascinates me (and I'm usually the idiot standing in the front yard taking pictures anyway!), roaches....well...ok...roaches DO freak me out. But I was afraid I wouldn't be strong enough to endure another high risk pregnancy. I am so thankful God has blessed me with an inner strength I never knew I was capable of reaching...an inner peace so to say. I've never been put in a situation where I was told to choose if my baby should be given a chance (and a very slim one at that) of taking his first breath or letting him go and letting God heal him in Heaven. I am extremely Pro-Life in my beliefts, but I must admit I did struggle with this decision. Did I want my newborn baby placed in my arms limp and unresponsive because he had already passed? If he did pull through did I want him to have to make weekly trips up to the hospital for dialysis until they could find him a kidney? Did I want to get through this whole ordeal and seem to come out clear of all obstacles only to watch my child die in an incubator due to a common cold virus that can be lethal in preemies? (this one STILL terrifies me!)

But I've prayed and I found peace. God will choose and I don't have to! What a relief! And so...this is what I will do about another child. Even though our pregnancies have been "planned" they are ALWAYS planned by God before we even get the little gleam in our eyes. So, I am happy to say we would love another gift from God in the form of another child, but completely understand if it is not meant to be too.

Off to show William off at Grandma's work. Fluid tap and an infusion tomorrow. Prayers please.

Is it just me loosing my mind?

I have my very own bedtime ritual every night. I brush my teeth, pee, take my prenatal vitamin, pee again (hey...I am pregnant), jump under the covers, take my hubby's hand and we pray together. The minute the lights go out, my body pops into the upright position....DID I take my vitamin. I inevitabley have to get back out of bed and look. This happens every night now. I'm hoping it's just a pregnancy/so much on my mind type thing...but I'm not counting on it.
At my "normal" OB appointment this morning (glucose test...blech!) my doctor asked me for an update on all the stuff going on with my perinatal doctor. He asked how many taps they had done since the last shunt placement. I blanked! I sat there...just staring. He smiled...I think he saw smoke was coming out of my ears. I finally flung my shirt up and counted "holes" and was able to tell him three.
Sometimes I even find myself heading down the hallway only to stop in midstep...what was I doing? Was I going to get a book or relieve my bladder? My bladder ALWAYS needs relieving so that's a pretty good bet...but was there something more?? I end up having to back track to wherever I was in the house (the couch as it has been most recently) and I retrace my thoughts. That usually helps, but sometimes...whatever it was just leaves me!
I call my husband my son's name and my son the dog's name. I have to re-read a paragraph twice (or more) sometimes when I'm relaxing with a book, sheerly because I wasn't really paying attention. I will call only to say "I'll call you back...I have NO idea what I wanted to talk about".
BUT...I can recite the theme song to all of the Disney cartoons my son watches. I can recall William's birth from water break to the toe curling first session of breastfeeding. I can even tell you names and jersey numbers of Georgia Tech's 1990 National Championship team! So I do have a brain...it's just taking a LOT of vacations at the moment! :)

Spreading the word

For the first time in my life, I've learned in a difficult way that I really have no control whatsoever over my life and the lives of those I love. It was a false security that I had (my anal scientist/eductor background I guess) that I actually could control or manipulate things to do what I wanted them to do. Not in a bad way of course...I wasn't practicing voo-doo on a guy I had a crush on and he didn't like me back or anything! Just a sense of control...especially since I had never really been tested and when I had...I always received whatever I asked for, it just took a bit longer to get them.
Now I am learning to Let Go and Let God. I let God decide if my child should be given the chance to live. I am letting God decide when my needs for attentive care stop overriding our family's needs of a working husband. And luckily, God has been so good and has given us everything we could ask for in life...just with a few obstacles.
But I'm also learning that my experiences might benefit someone else that is going through all of this. Here I am, a healthy 28 year old (at least for three more months) in the prime of life, taking vitamins, and going to the doctor and my son is diagnosised with a birth defect. His defect is called Lower Urinary Tract Obstruction (LUTO) and is 77% fatal BEFORE birth even and only about 18% of those that make it to birth can have full functioning lives ahead of them. I know the road will be long with many doctor visits and surgeries ahead, but I'm so thankful to have made it to 26 weeks and 4 days. Never thought I'd go this far 10 weeks ago when I first heard that awful diagnosis and was told to terminate my precious baby then and there. I'm glad I didn't listen fully to them, but opened up my heart to God's diagnosis.
Here's the links that I have found to be extremely helpful to me. Hopefully if you find yourself in this terrible situation one day or know someone that is already there...please tell them there is hope. Let Go and Let God carrying you down the path that He is showing you. It might not be the path you would chose, but for the first time giving up control...never felt so GOOD!

http://www.ourbaby.org/diagnoses/luto.htm

http://www.benotafraid.net/

http://www.fetalhope.org/fetal-issues.html

He answered!

Wow! Ask and you shall receive...even if it seems impossible. One of the things I do find most annoying about spring in North GA is that it takes its time making up its mind about which season it wants to stick with when winter rolls into spring. You never know when a cold front will swoop down and force you to take the jacket out of the closet once more. This weekend was wonderful...sunny, warm (80's) and just beautiful for William and his grandparents to hang out on their huge back deck. Grandma got out the sand table and William had a ball. I even was able to sit out on the patio swing and enjoy some outside time for the first time in awhile...which I later regretted that night with the increased soreness I felt from sitting upright!
But even with such a picture perfect weekend that is seen so often in the Georgia moutains, I heard a cold front was on its way for Sunday evening. It got down to about 41 last night and a high only in the 50's is predicted for this afternoon. Not cold enough for snow...but I thought I would put in a request anyway. As I have written before whenever I find myself starting to doubt all that me and Matthew are going through...God has given us snow. Both last night and this morning I asked God for a few snow flurries. I said I didn't care how much or when it happened...but I just needed some reassurance that my baby wasn't going to be born so early at 24 weeks. And you know what...He answered me!
The thermometer says it is 43 degrees out there at the moment, but just 10 minutes ago...we had a rain/snow shower mix. I could see the pure white snow flakes drifting in lazy patterns amongst the cleansing rain drops. I smiled and thanked God for looking after us. "Our God is an awesome God, He "rains" from Heaven above." And yes, I spelt reigns wrong on purpose. I'm off for our 4th surgery in just one hour, gotta pack my overnight bag. I'm feeling very encouraged now. :)

Snow fall

Yesterday morning we woke up to a beautiful scene...snow flurries in March. For metro Atlanta...this is unheard of sometimes even in January, so we appreciate it whenever we can get it. As a child I would stay up late when the weatherman predicted so much as a dusting...in hopes that schools would be closed. I would wake up in my bed every hour and peer out the curtains to see if the "magic show" had started. Most of the time I woke up tired and in a very grumpy manner...made my way out to the bus stop. But sometimes, my wishes came true and I woke up to a winter wonderland (at least in the eyes of a southerner where 2 inches was beyond our wildest dreams!). Snow always brought out the child in people...including my parents...and the innocence that comes with being young at heart.

On this "snow day" (it never actually stuck to the ground - just dusted our deck and roof) I was able to enjoy it with my son and husband. I saw my little boy spin like a spiraling snowflake in avid delight. When a gust of wind would take the flurries high over his head, he would squeal and clap as if he were in the front row of the most sought after play in New York. I can't wait to see what he would do if it actually accumulated enough to make a snowman!

It has amazingly enough snowed twice in two weeks, the morning of my son's birthday and then again yesterday morning. I am now viewing snow in a different way...a cleansing way. As if God decides he needs to purify our lives from the hardships of being adults sometimes. Whenever I have felt myself over the past two weeks start to come undone with stress or pressure...God has given me snow! On my son's birthday morning, I was up at the crack of dawn heading to a prenatal specialist appointment for my other son that is on his way. We had done a procedure the previous afternoon and I was nervous that we were not going to have favorable results...but we did and I relaxed and enjoyed my son's birthday as I had prayed I would be able to. We were scheduled to have our little baby's surgery to help him out on Friday afternoon, but were unable to do so when the doctor called saying he was too short of staff and needed a room full to monitor both the baby and myself. I was very frustrated at even having to wait another 48hours, but at the sight of snow Saturday morning...I knew all things would be alright. God was giving me a wonderful opportunity to create memories with my son that is here with me now before I am restricted to bedrest. And I greatly appreciate the chance!

Back in high school, I was part of the church choir. This morning while in the shower I was reminded of verse of one of the songs we used to sing (we even made a cd to sale for a fundraiser for the church!). It said "by Your blood, I am made whiter than snow". Thank you God for wiping away my most stubborn doubts with a delicate snowflake.