Aortic Coarctation: History, Part 2

There were many things that were said by professionals before Rayne was diagnosed. I wish they had watched their tongues. I, specifically, was told that I was not feeding my daughter enough and that her pediatrician believed that was the only problem. When we brought her to the emergency room for her "acute life-threatening event (ALTE)," they brought in a social worker to talk to us because of my postpartum depression. Her pediatrician told us that that wasn't the half of it, they had actually called him and suggested calling Child Protective Services (CPS) on us. He, thankfully, told them he didn't think it was necessary. They sent us home on more reflux medications and Reglan, of all things.

Let me tell you about the two times my daughter died in front of us. The first occurred on the Fourth of July, 2009. Rayne was six months old and bouncing happily in her bouncy chair. We had a moments rest as she watched us crack into the lobsters that were ridiculously cheap at the time. We soaked them in butter and were happy to be spending the evening as a family. Lexi talked about how the lobsters were "cute" and wouldn't touch them. She had watched them go from living to dead and hadn't appeared bothered by it, only curious.

In an instant, I saw Carter standing in front of Rayne. "What is he doing?" I asked Ed as I repositioned to see her face. "Quick, Ed! He just shoved a spoon down her throat. Carter, STOP!" Ed sprung to his feet and swooped Rayne into the air. As he held her facing away from him, he attempted to put a pacifier in her mouth to calm her down. I could see her holding her breath for a large scream that would never come. Her eyes rolled back into her head and I screamed at Ed to drop the pacifier and give her to me. He obliged.

I remember panicking slightly. Quickly, in my mind I went over CPR with an infant. I dropped to the ground with my tiny, 10 pound baby and laid her on the cold, unfinished kitchen floor. I barked out at Ed to call 9-1-1. I tilted her head back. At that point, what little color she had came flooding back into her face and she began to whimper. I never had to breathe for her and I cradled her as she cried. I waited patiently on my porch, tears welling in my eyes, for the paramedics to arrive. I didn't want them to come into the house, to scare the other children. What happened after they arrived was uneventful.

The second ALTE occurred when Rayne was a little more than 8 months. She slept with us at night because I needed her close. I nursed her quietly in the night and often she would wake screaming. Clearly nothing consoled her, but we had no idea that her heart was so large and inefficient. This night she woke up and I knew something was wrong. I rolled up onto my side and hovered inches above her, watching her every movement as they ceased. Her color paled and her breathing slowed. I can't be sure if it stopped, for seconds maybe. I quickly lifted her into my arms and swung my feet off the edge of the bed. She took a breath, stiffened again, and paled. I stood up and flipped her onto her other side in my arm. No, don't do this to me. I can't handle this. You have to stay with me. I woke Ed up with my cries and yelled for him to once again call 9-1-1. I raced down the stairs with her in my arms and paced the hallway, prepared to do only what I knew how, to start CPR and wait for the paramedics to come and pry me away, but her breath held. Twice more she stiffened and paled and then that was it. She panted lightly in my arms, too exhausted to cry and I held her tightly, as patiently as I could muster as the minutes seemed like hours. When the paramedics arrived, she was fine. We were able to buckle her in her carseat and I opted to bring her to the emergency room myself. That was the horrific visit we had before finally being treated by the Barbara Bush Children's Hospital.

Aortic Coarctation: History, Part 1

Please don't scream, Mommy. My heart hurts and I know I can't tell you, but when you scream it hurts even more. Mommy, Mommy, where are you going? I need you so much now, but you scream and you call Daddy, but I need you now Mommy. Hear my plea; make me better. Mommy, don't go to work; I need you more than anyone or anything else in this world. Only you can hear my pleas.

For 9 long months, my daughter cried out to me. If she could have spoken, she would have told me what ailed her so. As it was, I went in for visit after visit only to be turned away and given an array of reflux medications. Zantac to start, before even her one month birthday, followed by hundreds of insurance-reimbursed dollars spent on Prevacid solutabs that never worked. Hours and hours I spent reading about acid reflux, visiting the forums, searching for answers for my littlest one that the doctors were not providing for even though it was within their reach all along.

I can describe to you the inner turmoil I felt knowing that my daughter was sick and I could not be home for her. I can describe the endless insomniac nights and the bitter arguments with my husband as a result. I can describe to you the multiple medications that evolved over my head dealing with my postpartum depression. Only now, I can describe it with reason because then there was no reason. I had a child who would not grow like normal children, I though she was high-needs, and the doctors thought that perhaps it was a silent reflux. Give mother the medications, send her home, little Scarlett, my "Rayne", will outgrow this, we're sure. Don't all fussy babies get better after a few months?

But she didn't outgrow it; in fact, she didn't grow, which in the end was the last straw. Failure to thrive, failure to thrive is what got us admitted to the Barbara Bush Children's Hospital when my baby was two days shy of nine months. That, and the fact that I had quit my full-time, benefit-providing, high-paying job just one week prior. I knew I could not go on at work with my baby's ailments at the fore of my mind. I knew that something needed to be done. Ultimately, I demanded a referral to a gastroenterologist and it was that demand that got us the attention she deserved.

October 7, 2009: We were admitted at the Barbara Bush Children's Hospital in Portland, ME.

Update

Life with the Gargans has been pretty chaotic lately. Daddy is working everyday at the Post Office, covering for his carrier and picking up extra hours in Express Mail when he can. Mama has been working hard at IDEXX and on networking as a Doula. Mama just missed her first birth as a Doula with a client who had less than an hour of active labor and birthed her baby at home with the help of the paramedics who arrived just in time. This means she still needs one more birth to certify.

Rayne had a visit with her pediatrician just shy of eight months old. Daddy took her to the visit because Mama had been away at a birth lasting 42 hours and needed some rest. At the appointment, it was determined that little Rayne-Rayne was way too little. She weighed in at a minute 11lbs 14oz, a gain of only 1lb 11oz since her last visit at 4 months. The doctor recommended adding formula to her diet and also said that he wanted to speak with mom, although he didn’t call mom the next day. Mom called him twice the next day and he returned her call on the following day. After complaining that he wasn’t able to reach her on the phone she provided, he went on to answer her questions and left her feeling like the reason for Rayne’s poor gain was that she was not being fed enough. It was an extremely difficult time for the Gargan family. Of course, immediately after Mama discovered Rayne’s poor weight gain, she brought her to the lactation consultant and has been monitoring her weight since. She gained 4oz in one week and they will see where she stands this week.

Lexi started dance class with her friend, Serenity. It’s a combination class of ballet, jazz, and tap. They don’t allow the parents in the room during rehearsal. It’s quite a shock to see that Lexi is big enough to not have Mommy in the room. Lexi has also been acting out lately, especially when Mama is around. The other day she came to the table to see her hot muesli with milk, sugar, and blueberries, and exclaimed, “Not this!” She proceeded to throw the bowl on the floor, after which Mama put her in time-out. When she wouldn’t calm down, Mama took away her Teenage Mutant Ninja Turtle show and told her she could only get out of time out when she was ready to clean the mess. Well, that was not OK with Lexi-Mouse. She attempted to distract Mama from her obligations by wetting her pants, but Mama stuck to her guns and after putting on a clean pair of underwear, made Lexi remain in a time-out until she finally succumbed and agreed to clean up the mess. Hugs and kisses all around.

Carter has had some silly patterns of eating lately. He doesn’t eat much at all during the day and by night time he is starving. He whines and whines and his parents trip over him while trying to make dinner. He only stops if the right button is pushed, which he then exclaims, “Yes!” as in, Yes, that’s what I wanted you silly adults. Dad thinks he is getting more and more handsome everyday and even compared his 2-year-old boy to Brad Pitt.

With all the emotions and the financial strain of employing a babysitter as well as paying for gas, and the physical attention that Rayne requires, Mama has put in her notice at IDEXX. She is going to continue her work as a Doula, volunteer at the Hope House, knit longies for other moms, and most importantly take care of her children. She will make meals at home, use cloth diapers once again, and spend less on gas. Dad will pick up more hours at Pizza Hut and work more at the Post Office. Dad has also guaranteed that he will have a full-time position at the Post Office in the next two years. Hopefully, they’ll be able to hang onto their house until then.

Whistle While You Work

DO DO DO DOO DO DO DOO! Ed and I have both been working many hours in the past few weeks. We certainly are not home very often. Lately, our friend Christine and her friend, Chris, have been watching the children in our home. Ed has been working diligently to keep the house clean and I have been working diligently on keeping my milk supply at a maintenance level. Both are hard jobs in my honest opinion. Rayne has been waking every night about once an hour, probably because my milk supply is not voluminous enough to keep her content. I've got to seriously consider adding formula to her diet at this point. Work is just too stressful and I'm tired of taking supplements in vain just to try and keep it up.

We steamed practically all of our vegetables from our farm share this week: carrots, peas, snow peas, broccoli, cauliflower, and some beets. I mashed some peas and carrots for Rayne and Ed and I ate the rest mixed in with some Rice-A-Roni. Mmmmm. I also steamed up some more brown rice for the kiddos in the coming days as the Rice-A-Roni is really too salty, but we got a good deal on it! The Ed packed the plain rice in my lunch today...I'm still sratching my head over that one.

Two days ago we brought the full-size mattress and boxspring upstairs from our guest room and rearranged the kids room to accomodate. Carter slept on it the first night as I could not pry Lexi away from Nani when it was time to leave. I think Ed put Carter in his crib lsat night eventually and we are planning for Lexi to stay in the full-sized bed. My kids are getting so big! I don't think I'm going to even bother with a crib for Rayne. At some point, we need to purchase beds.

Lexi Home and Carter Sleeping in our Bed

Lexi came home Tuesday night after spending an extended weekend up to camp with Nani. She left Wednesday night and they went to camp on Thursday. It's so great to see her again. I really missed her. I took her out shopping with me last night and caved at both the grocery store and Rite Aid. She got a TY Beanie Baby pink flamingo (she knew the word, "flamingo") and a package of Reese Peanut Butter Cups. Why not when I'm saving so much money using http://www.thegrocerygame.com/? She went to bed way past her bedtime after Carter and Rayne were already asleep.

Around midnight, Carter woke up crying loudly. He does this occassionally. Ed grunted and I said, "Bring him in here." Of course, Ed didn't think that would help, but he is such a good listener and husband that he did indeed try my suggestion. Carter laid down next to me and I started to rub and tickle his little back. He liked that very much and calmed down. He didn't let me stop for awhile, but eventually he fell asleep. At one point, there were four of us across the bed. Me then Rayne then Carter then Ed. Carter kept kicking the blankets off and I woke up to half of him hanging off the top of the bed and had to pull him back up by his ankles. I should mention that I brought our bed and boxspring down to the floor inside of the bed frame because I'm nervous about Rayne rolling out. I guess that it is time to upgrade to a kingsize and to buy rails for the sides.

Metal Detecting

On Sunday, Ed, Carter, Rayne, and I went to the fairgrounds in Farmington to enjoy some metal detecting. Ed got into metal detecting a couple of years ago when my Dad gave him his old metal detector. He has since become a fanatic. He is a member of the website, Metal Detecting Maine, where he chats with fellow detectors about their journeys and finds. He also collects coins and maybe someday will detect the ocean bottom when we finally get our SCUBA certifications!

While Ed detected, I chased Carter around the fields and mud, pushing Rayne in her stroller, and taking the pictures you see above with my favorite new toy, my Blackberry. Ed found a cache of pennies, some dimes, and a game token. The day was beautiful and we had a lot of fun. Afterward, we went to Ed's parents house where we had a barbecue for Kayla and Brady's going-away party.

Living with the Gargoyles

Large families seem to be a thing of the past in today's corporate America. The gas guzzling, fast food eating, fast-paced culture of our society shuns the larger-sized families because their carbon footprint is too big! Well, I assure you that each of our carbon footprints are small and my children will have a positive impact on their society.

Currently, Ed and I have three children. Lexi is 3, Carter will be 2 soon, and Rayne is 6 months. We are struggling to get by financially as many middle class families are. Our mortgage and complentary payments are high. Insurance takes a big dent out of our pockets every month. We struggle to breastfeed and to feed our kids organic foods. Trying to learn how to be self-sustainable is a job in itself, but we are determined. You see, we want more children and I don't want finances to be the determining factor!

I don't feel that letting my kids watch cartoons is going to hurt who they become. My son now is watching Clifford, the Big Red Dog so that I can blog this post!! My daughter is sleeping soundly on OUR bed and my older girl is up at camp with her Nani. Ed is working at the Post Office and I am dreaming of a clean house. I set up this blog to share with family and friends and I plan to just tell it like it is. No ideals here, just plain honesty.

So sit back, relax, dim the lights, and enjoy living with the Gargoyles.