Neurology re-cap

Last Thursday Little M and I went to his big neurology appointment after getting the DMD (Duchenne Muscular Dystrophy) diagnosis. Mr. Temmie had to work so he couldn't go with us, but Aunt Liz was able to meet us (she works at the hospital next door) and be an extra set of hands and ears. I was soooooo grateful she could come!



I was dreading this appointment. Until now, Mr. Temmie and I were blissfully living in denial. Little M shows no physical signs of DMD so in our minds he didn't really have it. Every once in a while we would take a trip to reality, but it usually ended with both of us in tears, hugging our little boy and wishing like hell that this wasn't true. So this appointment was basically a trip to reality. I bawled the whole way there. I don't like reality.



We arrived at our appointment and got checked in. I had barely finished his paperwork and we were called back. They took vitals and weighed and measured Little M. He's clocking in at 11 lbs 11.5 ozs. Chunkster!!! I forgot to ask how tall he is. Oh well! I can measure him at home.



Anyway, they did the vitals and took us to the exam room. We were a little surprised when the doctor came in less than 5 minutes later. Aunt Liz and I both told him how prompt he was.



Doc sat down and basically said that he knows I'm wishing there was some mistake, but the reality is Little M 100%, for sure, no doubt has DMD. So this appointment was to answer my questions, get a base line and discuss the next steps. He also apologized for the lack of communication during our last hospital stay. Overall I was really pleased with this guy. Little M was too because he sat on my lap smiling at the doc the whole time. And of course his smile is so captivating that it kept distracting the doc. Such a charmer I have on my hands!



So where we are. Right now Little M is asymptomatic. Meaning he has this disease but shows no symptoms yet. I asked if that meant I could still live in denial. The doc said yes, for a few more months, but that's it. I thanked him and told him it was prettier in Denial and the food tasted better. I don't think he got my sense of humor. Anyway for now we will continue to raise our baby and focus on happier things like finalizing the adoption and his first birthday party. But we have to be aware of what is coming. Like delayed walking and delayed speech. We already anticipated these due to being a preemie. But we will work closer with the early intervention therapist to help those things along.



I did ask point blank if Little M will walk. Doc said he didn't have any reason to believe he wouldn't. He also said his goal is to keep Little M walking for as long as possible. Eventually he will be in a wheelchair. He will develop heart and lung issues. But the longer we can keep him walking, the later the other issues will start to develop.



Doc also said that 15 years ago this would have been much more devastating news. The medical developments that have happened in the last 15 years are amazing and there is so much more on the horizon. Who knows what options we'll have when M gets older. He also told us about a national study that we could join. It's a research study that follows DMD boys over their lifetime. Obviously these boys aren't enrolled until they are diagnosed. We got a jump on that part so our participation is even more helpful to the study. Maybe not for us, but for someone else for sure! So we signed up. By doing so we are also able to get genetic testing done to pinpoint the exact gene mutation. This testing is very expensive and will not cost us a thing as part of the study. And having an exact location of the mutation will help the docs be more able to treat Little M's DMD.



So overall the doc was great and left me with a slight feeling of hope that not all is lost. We'll still have many challenges ahead of us. But we also know we have one hell of a fighter on our hands and we're going to do whatever we can to help him.




Sittin' on Cousin Kate's lap after church being adorable. He was practicing talking. That's his new trick. :)

Too funny

Little M is a chick magnet. There's no denying it. This kid has women crossing a crowded room just to get a good look at his squishy cheeks and stunning eyelashes.

Last Sunday, Mr. Temmie was sitting at a table in our parish hall while I was helping the ladies group with craft night sign ups. At one point I looked over to see no less than 9 women crowded around Little M oohing and ahhing over him. Total chick magnet.

As soon as I was done with sign ups I joined my boys. Some of the women that had been drawn in by Little M were sitting at the table across from us. One of the ladies kept telling me how precious and cute and adorable Little M is. Uh, hello? I spend hours staring at this kid. I'm well aware how handsome he is! But I thanked her and went about my business. Then the lady next to her said, "Well he is a spitting image of his daddy! There's no question there as to who his daddy is!"

It took everything in me not to bust a gut laughing. :)

Waiting

This week is full of good things and bad things.

Our final homestudy report will be turned in today. This report is basically the social worker's evaluation of Mr. Temmie and me and his opinion to the court that we are fit parents with the child's best interest at heart. Once this report is submitted to our attorney, they can schedule a court date to finalize the adoption. I can't wait!!!!

This week is also when we meet the Muscular Dystrophy specialist. I have been happily in denial since we found out Little M's diagnosis. If I don't think about it, he doesn't have it. Simple as that. But on Thursday I am going to have to come face to face with it. I know I should go in with a list of questions, but where do I start? I just want to hear that my baby will be o.k. and the reality is he isn't. Not a fun place to be, that's for sure. And to make the whole situation horrible, Mr. Temmie has to work so I have to go to the appointment alone. I hope I can hold it together!!

So here's to excited anticipation of good news while we wait for the other shoe to drop.... =/

The journey: Part 3

The weekend with my baby was the best ever. I was on cloud nine! Once I landed and got my rental car I drove straight to the hospital. I got the the NICU in the early afternoon and proceeded to jump right in. I helped change his diaper, I cuddled and read books to him and even got to feed him. And that's pretty much how the whole weekend went. Unless it was time for the nurses shift change (and no parents are allowed during shift change) then I was in the NICU holding my boy. I already knew how much I loved him, but this is where we bonded. I spent hours talking to him and telling him all about his new family and where he would live. I told him he had puppies to play with and so many cousins to grow up with. The best part was whenever I was holding him and talking to him, his breathing and oxygen saturations would stabilize. And he would have very few or zero apnea spells. He was content with me and I was smitten with him.



And then I had to leave. I spent my last day in the NICU holding my baby and sobbing. I couldn't pull it together for anything! The sweet NP and social worker tried to comfort me by saying he would be home soon, but that didn't help the fact that I had to leave him again. My heart was broken. I did not want to leave at all. So much in fact that I stayed until the last possible second and nearly missed my flight home. But I did pry myself away. I came home and continued to call twice a day. I considered adding a third call, but I didn't want to be a pest. So I controlled myself.



It was after my July visit that I started getting pictures emailed to me almost daily. God bless that nurse! She saved my sanity. Especially since it ended up being almost one month exactly until we would get the "get your arses here" call.



The Call:

I was at work on August 25th. My phone rang and it was the NICU number. I immediately answered, worried that something was wrong. They never called me, I called them! It was the social worker and she had me on speaker phone with the NP. They gave me an update on Little M's status and all seemed to be going well. Then they asked the greatest question ever, "Can you get here this weekend to take him home?" They didn't even finish asking before I told them we could be there on Sunday the 29th. That would give Mr. Temmie and me time to make work schedule arraignments and I had offered to make a wedding cake for a friend's daughter. She was getting married that Saturday so I finished the cake and then we bolted out of town that afternoon.

We drove as far as Reno and then stopped for the night. I had hoped to have one last "date night" with Mr. Temmie before we became parents, but after the long drive, we just got some dinner and then fell asleep watching t.v. Oh well! We had a good 8 years of date nights under our belts. It was time to move on.

The next morning while I was showering and getting ready, the power went out. At first I thought Mr. Temmie was messing with the bathroom lights. But when I got out of the shower and noticed the t.v. was off I put it all together. So we did our best to get ready in the dark. Mr. Temmie had to take a cold shower since the hot water heater was apparently electric. Once we were ready we decided to check out early and hit the road. It was stormy in Reno and we still had to drive through the canyons. So we grabbed all our stuff and headed for the elevator. It was then we realized that the power was out and we were on the 16th floor. Was the elevator even working and if so, was it safe to use? We were told there was one car operating. We waited a good 15 minutes for it to stop on our floor. When it finally did it was completely full. So we grabbed our bags and hit the stairs. I guess the good thing was we were going down not up 16 floors, but hauling bags while doing it was no fun! We finally got to the lobby only to see that the slot machines still had power. Glad the hotel/casino had their priorities straight! Anyway we got in line to check out and just as it was our turn, the lights came back on. And that was the end of THAT adventure! And after a quick stop for breakfast and fuel we were on our way!

We arrived in California mid-afternoon. We stopped at my mother-in-laws house to drop off our bags and then we headed to the NICU. At this point I was so excited I was shaking! This was the first time Mr. Temmie and I were allowed in together. At this point birth mom had relinquished her rights and Mr. Temmie and I had legal custody of Little M.

We got to the NICU, scrubbed our hands and then held our boy. We talked to the nurses about the discharge plan. They went over some basic parenting stuff and we brought in the car seat so the staff could do his car seat challenge. Basically he had to sit in the seat for an hour while hooked up to monitors and make sure his oxygen level and heart rate were stable. We decided to run back to mother-in-law's house to get an overnight bag while they did the car seat check. When we got back, shift change had taken place and a room had been set up for us to spend the night. We got settled in our "room", it was more like a closet really! And then we had the nurse bring in our baby. We didn't sleep much. It was too surreal. Little M was off all monitors and completely in our care. We spent the night trying to sleep on HORRIBLE hide-a-beds and feeding and changing our baby. It was the best night ever! At 11:00 the next morning all the paperwork was done, we were packed up and they sent us on our way. A few hugs on the way out the door and that was it. We were free!!!!! We loaded Little M into the car and we didn't look back. :)

The journey: Part 2

June 10- headed to California for Mr. Temmie's nephew's graduation. This trip had been planned since long before Little M was born. But now we could talk to people face to face and figure out what was going on. We arrived in town on Friday and spent the rest of the day trying to figure out the graduation plans. I of course wanted to do nothing more than go to the hospital and meet my baby, but I didn't want to seem like a vulture either so I kept really quiet. I still had my guard up in case this all fell through, but Mr. Temmie's family kept asking if I was excited to be a mom. So, slowly I let my guard down and started getting excited.

On Saturday June 12 Mr. Temmie's nephew graduated from high school. We threw together and impromptu BBQ at my mother-in-law's house. It was a nice small gathering of various family. And them Mr. Temmie's cousin arrived, with her daughter (our birth mother). I had never met her before and she was pretty quiet. Again I didn't want to be a vulture and be like, "hey how's it goin', give me your baby!" So I just stuck close to Mr. Temmie and stayed quiet. Then someone asked if we wanted to take birth mom and go to the hospital to see the baby. I don't know how I didn't scream "YES!!!!!!", but I managed a perfect, calm, non-chalant "that would be nice." So we took Mr. Temmie's cousin and birth mom to the hospital. It was about 8:30 at night when we got there.

Birth mom and her mom went back first. Only birth mom and one other person were allowed at the bedside so Mr. Temmie and I waited in the waiting room. I was so nervous. I couldn't stop fidgeting. Then her mom came out and I got to go back. I signed in at the desk and the clerk pointed the way. When I walked in birth mom was getting some info from the nurse. Then the nurse asked who I was. I told her I was birth mom's cousin's wife. Birth mom told her I was going to adopt the baby. At that point the nurse's eyes lit up. She filled me in on his day and how he was doing. She also asked if we wanted to hold him. She said birth mom would go first for 20 minutes and then if he was doing o.k. I could hold him for 20 minutes. I have to say it was awkward to be there with birth mom. I didn't know her and I didn't want her to think I was being pushy, but I wanted to hold that baby and never let go.

When the nurse was ready, we did something called a kangaroo hold. It was skin to skin contact. Basically we pulled open our shirts and the nurse placed Little M on our chests. Then we closed up our shirts and were covered with a warm blanket. He was still to little to wear anything except a diaper so his skin was again our skin. As planned, birth mom went first. She really just sat there staring off into space. She didn't say anything. I made small talk with the nurse to pass the time. Soon it was my turn. I was worried because we had gone to the flea market that day and I (like and idiot!) forgot to wear sunscreen. My chest/neck were as red as a lobster. I asked if it was going to hurt Little M. The nurse laughed and said, "Actually he's going to LOVE it, you however are going to be in pain." During my turn, birth mom left to use the restroom. She was gone quite a while. While she was gone, the nurse told me how happy she was for us and that Little M was going to be adopted. She said birth mom rarely visited and she hadn't bonded with the baby at all. Oh and she was right, he was in HEAVEN on my chest. His heart rate and O2 saturation levels stabilized and he fell fast asleep. If I was in pain I didn't feel it because I was too elated from holding my baby for the first time. The nurse even "got really busy" when it was time for him to go back in the incubator and I got a bonus 25 minutes. I love that nurse!

When I was done, I said my silent goodbye's and hoped I would get another chance to visit before we had to head home. And then I let Mr. Temmie have a turn to see him. His visit lasted about 5 minutes. He doesn't do hospitals, tubes, doctors, illness very well. And to see a baby so tiny really freaked him out. After he was done, we drove birth mom home and made plans to visit the hospital again on Monday. I couldn't wait! Mr. Temmie asked if I was happy and I told him I was in heaven. I told him I was in love with another boy. He just smiled and held my hand. I was on top of the world.


That Monday, we picked up birth mom and headed back for another visit. Since it was a weekday we were able to meet the social worker. I asked if there was a way for me to call and check on the baby so birth mom didn't have to be a middle-man. She was very vague and told me that some other issues had to be worked out first and hopefully soon she could give me more info. I would later learn that the suspected birth father's mother was trying to get custody and stop the adoption. Only that all got squashed when the DNA test came back that he wasn't the birth father. Soon after that happened we were given a number to call the nurses for report.

I spent the next month calling the NICU twice a day to check on my little guy. Most of the nurses were very sweet and would give me real updates, not just a weight check and how his feeding was going. I also decided that I needed to see him again. So I planned a trip to visit over the July 24th (Utah) holiday weekend. Mr. Temmie couldn't come so I would have to come alone. That was going to be scary, but I had to see my son again.

The journey: Part 1

I've been meaning to do this for a while. Over the last few years I have read several accounts of different women's "birth stories", basically it's a chance for them to write out every last detail of the day their child was born so they don't forget. I obviously don't have a "birth story" but I do have an adoption journey. And it's something I want to remember so I can tell it to Little M a million times over, just so he can know how special he is to my heart. Of course the version here will have to be adjusted for a little one, and edited for content. ;)

The Journey to Little M

Our journey to have a family started soon after we got married. After a several months with no success, I sought out medical help. I had to start that process on my own since Mr. Temmie despises all doctors (ironic, I know!). So I got the ball rolling to start infertility testing. When it came time to test Mr. Temmie, it was a war. But eventually I prevailed and then we had some answers....we were both the issue. We tried some procedures and meds to help, but everything was so expensive and we just couldn't afford to spend money on a chance. We looked into adoption but the cost to use an agency is staggering. I tried like crazy to raise money, even my sisters tried to help. But it was a mountain we just weren't going to conquer.

I never wanted to give up my dream of having a baby, but the obstacles were too much and I was defeated. I resorted to begging God every month that we get a surprise pregnancy. Yea. That didn't work. I started to get depressed. Mr. Temmie always said he was fine with or without kids so he didn't understand when I told him there was a giant hole in my heart. I eventually decided to focus on something else and turned all my attention to enrolling in school to finally finish my degree.

Then the phone rang. It was May 19, 2010 at about 5:00 p.m. Mr. Temmie and I were in the car with my sister Patti and her daughter Ellie. We were going to dinner and then to our niece Maddie's dance concert. Mr. Temmie's phone rang. It was his mom. She told him that his cousin's daughter had a baby and she didn't want it. She then asked if we would want to adopt her. Mr. Temmie said yes and hung up the phone. I asked him what his mom wanted and this is how our conversation went:

Him: "Birth mom had a baby this morning and she doesn't want it. Mom wants to know if we want to adopt her." (yes I keep saying "her" at first we were told Little M was a girl)
Me: "That's not funny."
Him: "I'm not joking."
Me: "That's not funny, don't f*ck with me!!!!."
Him: "I'm not f*cking with you! I'm serious!"

At that point I turned around and swore Patti to secrecy! And then I couldn't hold it in anymore. I was bursting with excitement, questions, anxiety....and I had to keep it all hidden once we got to the dance concert. I didn't know enough to share with anyone else. I didn't want to tell them and then have it not be true and have to un-tell them. Fortunately there were so many people that we couldn't sit with the rest of my family. I was able to talk to Patti about all the thoughts racing through my head. And then I got a text. It was from Mr. Temmie (his mom called again so he was out in the hall). It was a picture of our baby. I immediately started bawling. Here was this tiny little baby with tubes and wires coming out of every arm and leg. It was the most beautiful baby I had ever seen. At that moment the giant hole in my heart suddenly felt full.




After the show we were talking to family and a friend of my brother's started asking very personal questions. She kept asking why I didn't have kids and if I couldn't and then telling me I should "just adopt" like it was the easiest thing to do. Any other day and I would have let my red-headed temper loose on this woman. But this night couldn't be ruined. There was a baby born and I had been asked to be the mommy. I managed to some how change the subject and then leave.

Over the next few days there was a lot of questions to be answered. And there was some uncertainty of this really happening. They had to figure out who the birth father was, if possible. We had to figure out how to pay for an adoption. We had to figure out how much that would even cost and how to do it since we're in two different states. Basically I spent the next day on the phone with 3 different lawyers collecting as much info as I could. It was this day I would learn that the baby was in fact a BOY and that he was very premature and sick. I started praying. Hard.

About two weeks later, we had been expecting a call from the hospital social worker to give us an update and some more info. The call never came. Finally that evening, Mr. Temmie's cousin (birth grandma) called. She said the baby had an infection but was getting better and they had some stuff to deal with with the state Child Protective Services. Turns out the little guy had been exposed to drugs in utero so CPS had to be involved. I was drained. I just wanted to know yes or no, was he going to be my son. Was he the baby I had begged God to send me. At this point Patti was the only one who knew and I needed more support. I broke down and told my sister Liz. She had a million questions as soon as I told her. And I couldn't answer any of them. But at least I had someone else to lean on if I needed her. And for the record, keeping that secret for two weeks was BRUTAL!!!!!

Then rest of May was a blur. We got very little updates and no one would tell us anything. There was some issue going on with the father, but we didn't know what. All we knew was we would be visiting California in a few weeks for a graduation and hopefully we would get some more answers then. Our trip couldn't come fast enough.

Picture dump

While we're waiting to get a court date to finalize Little M's adoption, I thought I'd do a picture dump since I haven't posted any in a while. Obviously most of these are Little M, but I did include pix of the wedding cake I did on New Year's Day.




Getting ready for bathtime

The reason it's so damn hard for me to go to work everyday.

Were these lights made in China? They're TASTY!!

OH momma, you and that camera are funny!

Lookin' like a little skater dude in his "Chucks"

Merry Chirstmas from us! (Little M says: "You're telling me some GUY is going to break in through the chimney, and you're O.K. with that???")

Cousin "twins" on Christmas Eve in jammies

Merry Christmas!!!!!

First attempt at solid food

First time holding the bottle by himself

Close up of the Trinity knot

Top view

Front view

Letting the dust settle

Now that it's been a week since we learned of Little M's diagnosis I don't know how I feel. Mr. Temmie and I were pretty upset last Thursday. We handled it the only way we knew how; I spent 4 hours on the phone calling and texting my family and friends for support, Mr. Temmie sat next to me and didn't say much. He's the strong silent type where I'm an open book.

Over the next few days he opened up a bit more to me, but we both seem to have the same conclusion: it is what it is. Getting angry, yelling, crying, screaming, and punching things isn't going to change it. So why waste the energy on that when we can use the energy to snuggle and kiss our sweet boy. Although apparently Mr. Temmie did take out some frustration on some expired eggs at work. Poor little eggs... :)

So the next step is we meet with a specialist the end of this month. I am so sick of doctor offices and filling out history paperwork and showing up 15 minutes early only to wait 45 minutes in the waiting room. I was recently told I seem to handle stress well and that normal is boring. I'd give anything for boring right now.

I was also asked if there was an "out" since the adoption isn't finalized yet. The answer is NO. The real answer is probably, but I'm not looking for an out. He is my baby and that's all there is to that. Mr. Temmie said it best when he quoted Forrest Gump, "Life is like a box of chocolates, you never know what you're gonna get."

This is what we got. We will do our best to face each challenge with strength, grace and dignity. We will love our son and provide the best we can for him. Each milestone he reaches will be sweeter and more special because of his disease. He's been a fighter since the day he was born and he's not stopping now, so we won't either.

The results

Duchenne Muscular Dystrophy.

Fuck.

Life changing phone calls

On May 19, 2010 Mr. Temmie and I got a phone call that changed our lives forever. We found out that day that we would become parents. BEST. PHONECALL. EVER.

On January 5, 2011 Mr. Temmie and I got a phone call that changed our lives forever. We were asked to come into the pediatrician's office to get some test results. WORST. PHONECALL. EVER.

I knew it was bad news. You don't have to go in to get good test results. And I knew what the results were since we were only waiting for the muscle biopsy to come back. Oh and of course we had to wait 24 AGONIZING hours until our appointment. I begged the nurse to just tell me over the phone so I wouldn't lose my shit over the next day, but she wouldn't. So we wait......

Happy New Year?

I didn't mention in my last post that on 12/27 Mr. M had to be admitted to the children's hospital for some more testing. Ever since that episode back in September he's had blood work come back abnormal. So on Monday, December 27th we checked into the hospital happy and for the most part healthy. We spent the next 3 days feeling like a human science experiment, frustrated, tired, grouchy and not getting any answers. Finally I had to refuse to sign a consent form in order to get some answers. After a complete explanation and justification of why they needed to sedate Mr. M for a third time I agreed to sign and let them do a muscle biopsy.

We were finally discharged late Thursday night (12/30). Just in time for me to work the month end shift and lest we forget, make that damn wedding cake!!! And just to make sure we had the right amount of stress Mr. M was discharged on Oxygen because he caught a case of bronchitis while at the hospital. He was also very generous and shared it with me.

We spent New Year's Eve at Aunt Liz's house where I played my first ever game of Scrabble. I'm addicted to it now. =) Aunt Jen was kind enough to bake the cakes for the wedding cake for me while I was at work. All I had to do was build the cake. On New Year's Day Grandma came over and held sad, sick Mr. M while I scrambled to get the cake together. I got it done, delivered and was paid. Mr. M and I proceeded to sleep and be miserable the rest of the weekend.

By Monday Mr. M was better and I was worse. So far it was a pretty rocky end of the old year/start of the new one. And we really had no idea what was in store next.........