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The Story Of Maia

[Warning: This post contains graphic descriptions of childbirth. If you are squeamish, move along- nothing to see here.]

We were not trying to get pregnant, we were in the middle of Cam’s adoption and life was chaotic. Truth be told, we had kind of given up on getting pregnant the old fashioned way. After multiple miscarriages and then a long stretch of not being able to even conceive despite a great deal of effort (aka- lots of sex) we just figured it wasn’t in the plans for us. We were happy with our two little boys and planned to eventually adopt again. So we weren’t trying to conceive but we technically weren’t preventing it either- if it happened then it happened was our theory. Still,despite all that, it came as a great surprise to me to realize that my period was late in April 2004. I waited a few days before buying a test, not wanting to get my hopes up again. Finally, I couldn’t avoid it any longer. I found out that we were expecting our first child on Easter Sunday 2004. We had a family picnic and Easter egg hunt planned for later in the day and I wanted a fun way to surprise Mr.McHunky with the news. I took a picture of the positive test, printed it out and put it inside one of the eggs that we hid. I even remembered to put a little sticker on the egg that said “For Daddy” so nobody else would open it. We had our picnic and then our egg hunt. I waited very impatiently for someone to find the special egg but finally Ty did. It took Mr.McHunky a few minutes to figure out what he was looking at but once he did he got the biggest smile on his face. We were cautiously optimistic, having been through so many miscarriages. My first appointment to the OB gave me a due date of December 23rd and showed a perfect little bean with a heartbeat. The rest of my first trimester was uneventful except for one episode of bleeding that scared the hell out of us but turned out to be nothing. I really had no morning sickness, just two episodes late at night that were short lived. We found out at 18 weeks that we were having a little girl and it just seemed perfect- a little girl to complete the family. The second trimester was more involved.  At 22 weeks I started bleeding again and an ultrasound showed that I had a partial placental tear. 3 weeks of bedrest on my left side seemed to stabilize the problem and I didn’t have anymore bleeding.


28 weeks

I had just barely made it into my third trimester when the next obstacle showed up. At my routine 28 week appointment, I mentioned that I was feeling a tightening in my abdomen and the baby wasn’t moving as much. They hooked me up to the non-stress test machine for an hour to check the baby’s movement pattern. What they found sent me straight to Labor & Delivery, do not pass go and do not collect $200. I was contracting every 4-5 minutes and when they examined me, I was 1cm dilated. I got to spend the next 10 hours hooked up to an IV and getting Terbuteline shots in the arm. Finally after seeing that I did not dilate any further despite the contractions not even slowing down, they let me go home. I continued to contract and slowly dilate over the next 6 weeks. Plus, just to add to the fun, my blood pressure decided to act up around week 32.  It steadily rose higher and higher each week and I started to get swelling in my face. In my 34th week I had the misfortune to develop a rare side effect- Pregnancy induced carpal tunnel syndrome. Good times, good times.


33 weeks- with chipmunk cheeks

I woke up on Tuesday the 16th of November around 2am-ish with some serious contractions. I was 35 weeks and 2 days pregnant. I was dilated to 3 cm and 80% effaced and we were just desperately trying to hang on to make it to 37 weeks. I changed positions, tried to prop my poor wrists up on a pillow to relieve the pain of the Carpal tunnel syndrome. I managed a few more hours of sleep before getting up for good shortly before 6am. The minute I stood up I thought I’d peed my pants but when the trickle kept going I figured I’d better call the OB. They worked me in right away and my mom came over to keep the boys. I just didn’t feel right. I couldn’t explain it then and I can’t explain it now, but something was just not right. My blood pressure was mucher higher than it had been previously and I was so swollen that I had chipmunk cheeks. The OB hooked me up to the Non-stress test and monitored the baby for awhile and while she showed no signs of distress she also was not showing a lot of reactivity. So off for a ultrasound we went. Her fluid level was super low so they confirmed that I did indeed have a high slow leak in my amniotic sac and I was dilated to almost 4cm. I tried to tell the OB resident that I didn’t feel right but she brushed me off and sent me on to L&D to have the baby. Her fluid was low enough to make them concerned about a possible cord accident and I was developing pre-eclampsia.


Delivery day- Just call me Michelin Mom

I was settled in my room around noon-ish and we just waited. I was contracting well but not dilating any further so after a few hours they started pitocin. They were pumping me full of fluids and pretty soon the carpal tunnel syndrome made the pain in my wrists unbearable. Seriously, the pain from the carpal tunnel was 100 times worse than the contractions. I was sitting in the bed crying with my hands submerged in a basin of ice water trying to stop the pain. My labor was still not moving along so a couple of hours later the resident checked to see if I had another bag of waters, and I did so she broke that. Immediately, the pain went from a 5 to a 7. I was begging for an epidural but the anesthesiologist was running ragged, there were more than 14 women in L&D and every one of us was needing an epidural. He was the only anesthesiologist working L&D that day, talk about poor planning on the part of the hospital. Never withhold pain meds from a pregnant hormonal woman. It’s suicide. The nurse gave me a shot of stadol, which instead of making the pain more bearable it just made me puke. Good times, good times. Do you know how long that shit takes to get out of your system? Too damn long. Puking and contracting is not fun. Stadol is the devil. Around 4am, the anesthesiologist came in to do my epidural and I kept waiting for it to kick in and the pain to go away. Never happened. The pain didn’t even dull, it was worse than ever. I was still only 5cm dilated and around 9am, I started hearing whispers of a possible c-section. I was ready to go right that second but I had to wait for the anesthesiologist to come back and redo the epidural again. I should have known that there were going to be issues when the anesthesiologist showed up looking like a 12 year old. Turns out he was a first year resident and he was going to watch the attending put in my epidural because I was thin enough to lie on my side while they placed the epidural. Apparently that is not common and the attending anesthesiologist wanted to show the resident. I know they have to learn, great, no problem. However, the attending took forever to place my epidural because he explained every single thing while he did it. I was contracting constantly thanks to the damn Pitocin and the position he had me lying in on my side made each contraction feel like knives were stabbing at my back every 2 minutes. Finally, after 45 minutes, I had blessed relief but still only 5cm dilated. I sucked down some green jello and watched with outrage and jealousy while Mr.McHunky and my sister noshed on some yummy sushi. Bastards. They were half way through their yummy sushi when I felt weird. I was shaking and dizzy and had the most horrible pressure in the world. At first I thought it was just the hospital green jello but the nurse checked me and I was a 10. I went from 5 to 10 cm dilated in less than 15 minutes. I took great delight in watching Mr.McHunky and my sister throw out the rest of their yummy sushi. I pushed. And pushed. And pushed. I’d only had my epidural for less than an hour so I had no sensation to push. It took me an hour and 15 minutes to push her out. In true Diva fashion, Maia came out with her arm thrown dramatically across her eyes causing her elbow to do some serious damage on her way out.


Maia holding her daddy’s finger at 5 minutes old

I hope you read my warning about graphic content because this is where it gets graphic. Last chance to run away and get your tubes tied. Maia’s elbow nicked through an artery in my girly parts on the way out and then just to make a statement, it also gave me a third degree tear as a parting gift. Nice. I knew immediately that something was wrong. When you have one nurse, one resident and one baby nurse in the room for your delivery and then all of a sudden there are 3 nurses, 3 residents, 2 attendings and the baby nurse….well that’s not a good sign. The first year resident that delivered me was shoved out of the way so fast that I’m surprised her ass didn’t leave skid marks on the floor. The attendings were moving so fast that I wasn’t sure what was happening at first. One had their hand shoved all the way up in my girly parts and I remember wondering why the one with the biggest damn hands had to be the one with the arm shoved up my girly parts. As though she hadn’t had enough trauma for one day. I remember pain while the were stitching me up, someone had turned off the epidural a bit too soon. I don’t remember anything else because I passed out. Mr.McHunky filled me in though. Apparently, I hemorrhaged. Badly. I lost almost half my total blood volume in less than 5 minutes. They were stitching the tear in my artery, which accounted for part of the blood loss, when my uterus decided to act up and contribute to the hemorrhage. I woke up feeling like death. I could not even hold my baby because my wrists were completely numb thanks to the carpal tunnel syndrome. I couldn’t breastfeed unless someone held the baby for me. It was a horrible feeling. I spent the night receiving blood transfusions and meds to make sure my uterus stayed clamped down. The next morning I was feeling a bit better so the postpartum nurse decided to have me get up and try to urinate hoping I could avoid needing another catheter. Bad idea. Really bad idea. I knew when I got halfway to the bathroom that I was going down. I got the ringing in my ears, the tunnel vision and the tingling in my arms and legs. Luckily, I was almost to the toilet so I passed out and landed right on the toilet. My sister was there to capture this fine moment with the camera for all eternity. When the nurse finally revived me and got help, I was hemorrhaging again. They took me straight to the OR and performed a D&E. They found a piece of the placenta still inside, which caused the hemorrhage. I received more blood transfusions to try and replenish what I lost. The whole thing is such a haze to me, it feels like it happened to someone else. It was definitely not the delivery that I envisioned. Maia was 5 weeks early but she was a healthy 5lbs 9oz and did not require any special assistance, she was able to room in with me the whole time and we were discharged together several days later.


The day we brought Maia home

Not even 24 hours later, I was back with a blood clot in my leg. One of my calves was hot and sore with a definite swollen area but thankfully the radiologist found the clot in plenty of time to dissolve it with blood thinners. I spent another 36 hours in the hospital before leaving. During that admission, I had a chance to talk to my L&D nurse. She told me just how close I came to dying and that in her almost 15 years of working in L&D, she had never seen someone lose as much blood as quickly as I did and live. That was sobering. We did find out later on that there were several reasons that led to the traumatic birth. My bloodwork showed a virus, which probably accounted for why I felt off the morning before she was born. I also was allowed to labor for over 34 hours if you count the hours at home in early labor. And my water had been ruptured for most of those 34 hours. The amount of pitocin that they gave me over the course of my labor was another factor. Basically the resident and attending screwed up. But I’m alive and Maia was healthy and that’s what matters. Definitely not your average birth story, but when did we ever do anything average around here?

Maia’s First Year:



House Tour 2012

House Tour 2012



House Tour 2010

House Tour 2010

Kitchen

Dining Room

Living Room

Play Room

Kids Bedrooms

Master Bedroom



House Tour 2009

House Tour 2009

Kitchen

Dining Room

Family Room

Play Room

Master Bedroom

Master Bathroom

Kids Bedrooms

Yard



The Story of Cam

Cam’s entry into our family was not as abrupt as Ty’s because of the severity of his special needs. But just like with Ty, I remember it all so clearly.  We were in the process of moving out of our condo and into a house and I was at the new house painting the master bedroom when the phone rang.  The placement worker didn’t have many details but she knew they had a newborn in the NICU who had some special needs and would be discharged into foster care.  She requested that we come to the NICU for a meeting for further information if we were interested in the placement.

 

 

I admit that I was hesitant at first, not knowing how severe the baby’s medical needs were going to be but I couldn’t just say no after she told me that there were no other homes that could take him in our county. If we turned down the placement, he would be placed 3 hours away in a pediatric facility. That hurt my heart so I agreed to the meeting with the understanding that we would need a lot more information before making a decision. At the meeting we were told that they had a 2 week old baby boy who had just been diagnosed with Prader Willi Syndrome.

 

 

Prader Willi Syndrome (PWS) typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is circa 70, but even those with normal IQs almost all have cognitive deficits and require special education. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia (“failure to thrive”). The second stage (“thriving too well”), with onset between the ages of two and five throughout lifetime, usually is characterized by increased appetite, weight control issues, and motor development delays along with often severe behavior problems and medical issues.

 

 

 

He had just undergone surgery to have a gastrostomy tube placed because he was too weak to suck from a bottle and he was very small even though he had been born full term. We were given a whole packet of information about Prader Willi and what to expect for the first year.  Cam’s biological mother was present at the meeting and was very sweet.  She had 2 other children who were in foster care but were at the final stages of reunification. The original plan had been for Cam to be released into her care and start the older children transitioning back home.  Unfortunately that plan was scrapped once the extent of Cam’s special needs was discovered.  His mother, sweet as she was, also happened to be on the lower end of the functional IQ scale.  She was not able to understand his syndrome or how to care for him.

 

 

Cam rarely woke up at all, sleeping up to 23 hours a day sometimes, and he had to be fed through his g-tube every 3 hours round the clock. His mother expressed her own concerns about her ability to care for him and agreed to temporary custody being given to the state while she learned how to care for him. We expected that Cam’s case would end in reunification once his medical needs were stabilized. That was what everyone expected.

 

 

We were given the chance to see Cam in the NICU through the window and he was so tiny and he looked like a cute little alien baby. I knew right then that we would be accepting the placement. No way was I going to be able to let this baby go to a pediatric facility where his mother would only be able to see him every 4 weeks. We had 2 weeks to prepare before his release date and it was a whirlwind of education and specialists and paperwork. I spent 2 hours every day in the NICU room with Cam and his mother, we got to know each other very well.  She was such a nice person and I really enjoyed getting to know her better. I had some concerns about her ability to parent a special needs child but figured we had time before we had to worry about it.

 

 

The day we brought Cam home

 

 

We brought Cam home from the NICU when he was exactly 4 weeks old. He was an incredibly easy baby as he never cried, he didn’t demand anything- the very things that put him at risk in his mom’s home made him very easy to care for in my home. He literally slept 23 hours a day and I tube fed him every 3 hours. I supervised visits with his mother twice a week and he got to visit with his older siblings every other week. The next few months were a whirlwind of doctor’s appointments, therapy appointments, specialists appointments thrown on top of the other stuff that comes along with caring for a child in the foster care system.

 

 

What started out as simply Prader Willi Syndrome, and I say that with tongue in cheek because there is nothing simple about PWS, evolved into a slew of other medical issues. Severe reflux cause sleep apnea which led to a surgical intervention, a Nissen Fundoplication. Cam had a bad reaction to the anesthesia which led to him being on a ventilator for 2 weeks. Then, as we were getting ready to plan his discharge, he got an infection. It was scary how fast he went downhill. He was fine in the morning, I left to go run some errands and got a call about an hour later that I needed to come back immediately. He had been transferred to PICU because they were concerned he had an infection. Prader Willi children do not typically run fevers and they have an almost impossibly high pain tolerance, both of which make it incredibly hard to know when they are really ill. That began our 9 week stay in the PICU that included 2 additional surgeries and quite a few unexpected complications. Two steps forward, three steps back. It was incredibly frustrating and disheartening. We had other children at home, we had 2 full time jobs, we were struggling. 

 

 

When Cam finally came home we were anxious to get back to normal. He had only been home for 2 weeks when the seizures started. At first, I wasn’t sure what was happening because his symptoms were unlike those of any seizures I was familiar with. He would start with a small twitch in his left eye that would move down his face to his mouth. His eyes would roll back and he would stop breathing. Most people who experience seizures will spontaneously resume breathing once the seizure ends. Cam did not. He required CPR rescue breathing after every seizure. He had to go back on the apnea monitor. It took 3 pediatric neurologists before he was finally properly diagnosed with an uncommon seizure disorder. One more medication to add to the daily regimen. It took us 14 months to get his seizures under control to the point where we didn’t live in daily fear that he would die.

 

 

This is just the tip of the iceberg of Cam’s medical needs. He required many surgeries over the years. He was g-tube dependent long after he was able to eat by mouth because he suffered from tracheolyringomalacia. Removing the g-tube was an ordeal in itself. What should have been a simple, outpatient procedure turned into a 2 month nightmare. Two days after the outpatient procedure to remove the g-button and stitch the tract closed, it split open. Literally split open, spilling the contents of his stomach all over the floor. I was in labor with Maia at the time and Cam was with my mom. He was rushed into emergency surgery and they stitched it closed once again. Four days later, the tract opened again. This time, he required major abdominal and stomach reconstructive surgery. They actually took his stomach out of his body, removed a part of it, sewed it closed and put it back inside his abdomen. They used muscle and tissue to close fill in the original tract and told us to pray. I was still hospitalized recovering from a blood clot after delivering Maia so poor Matt was rotating between my room and Cam’s room. We lived in fear for weeks that it would split open again. But it didn’t. Finally, he could eat and drink by mouth, he could wear cute short and t-shirts without the fear of getting the button caught on something. I didn’t have to worry about him opening the button or pulling it out. Progress.

 

 

When we were first approached about adopting Cam (when he was 17 months old), we were hesitant. I won’t lie about it. I had missed most of Ty’s third year of life due to extended hospital stays, surgeries and unexpected hurdles. Cam’s mother had long since realized that she could not care for him properly and was willing to relinquish her rights but only to us. If we were not willing to adopt him then she was not willing to relinquish. Nothing like a little bit of pressure to help you make a decision that will change the rest of your life. By this point, Cam had been a integral part of our family for 16 months. But those 16 months had been fraught with uncertainty, stress, and fear. We asked the social worker to pursue other adoptive placements for Cam while they prepared for a TPR trial. We were not sure we were ready to adopt a child with these needs, who would also require life long care.

 

 

Cam’s geneticist put us in touch with the Prader Willi clinic in our state where we were able to get a lot of information and support. We were assured that Cam would live a relatively normal, if restricted, life. He would require constant supervision around food and probably some special educational modifications but it was highly unlikely that his previous level of medical care would continue. The department searched, and I say that with sarcasm, for 3 months for an adoptive family for Cam. They determined that if we were unwilling or unable to adopt him, Cam would be placed in a pediatric facility long term. At 20 months of age, they would place him in a facility. There was no way that we were going to let that happen.

 

 

Still harboring some uncertainty that we doing the right thing, we signed the intent to adopt papers. I still feel anger to this day at the pressure the department applied to us. We were backed into a corner and given an ultimatum. I hate that. It’s not that we don’t love Cam, we do. That was never the question or in doubt. But with his sweet smile, big kisses and belly laughs comes huge responsibilities.  We were stuck between a rock and a hard place. We loved him and couldn’t bear the thought of him being in a facility but we also knew that his disabilities were extensive already and realistically it could be years before we saw the full extent of his disabilities.  We knew we were making a life altering decision, not just for us and for Cam but for Ty and any future children. Cam would need lifelong care. I wouldn’t change the fact that we adopted him. But I am still a tiny bit bitter at being coerced into it and I imagine that I always will be. He deserved to be adopted into the very best family that fit his needs.  His interests would have been best served by being an only child. The system failed him despite how very much we love and adore him. His needs should have come first. 

 

We finalized Cam’s adoption on June 26, 2004. He was 21 months old and had been in the system for 20 months.

 

 

You can read some more thoughts on our reality of special needs parenting here:

 

The Reality Of A Special Needs Mom

 

Thoughts Of A Special Needs Mom

 

Things I Want To Say To Doctors

 

Cam’s First Year: