Miracle Maely

                   December 14, 2016

My sweet little boy,

You're a big brother! Can you believe it? Your little sister's name is Maely Grace Anderson and she was born this past Friday, on December 9th at 12:34 PM. Oh Mr. T, she was the prettiest baby girl I have ever seen! Your dad and I think she had at least as much hair, if not more, than you did at birth- and she was born 4 weeks earlier than you! It was feather soft, and so dark and thick. Her lips were absolutely perfect with the cutest cupid's arrow above her top lip, right under her adorable, little nose. And her cheeks! They were super squishy and oh so round- perfect for smooching. They looked just like yours when you were born :) She was everything and more we could have dreamed she'd be!

But Maely couldn't come home with us, Trevor. Your dad and I knew she wouldn't be able to, and we've been so sad about it for a long time. We've known since September that something was wrong with Maely. I had to see a special doctor who knows more about unhealthy babies when she was still in mommy's tummy (20 weeks along). The doctor only had bad news for me; after looking at Maely he explained a big list of things that were wrong with her. I asked the doctor what this meant for Maely's birth and the rest of her life; he looked at me and said that we'd be lucky if she was born alive, and if she was, she'd die very soon after birth. I went home and cried and cried. I knew you could tell something was wrong by the way you looked at me as I sobbed. My whole world was crashing down, as were my hopes and dreams for the relationship you were supposed to have with your little sister.

At another appointment about a month later, we learned that Maely's most serious problems were that she had a Congenital Diaphragmatic Hernia (her diaphragm didn't fully develop and left a space for her liver to float up into her chest cavity and pushed her heart out of place), a Septated Cystic Hygroma (a group of cysts in the back of the neck) and Unilateral Renal Agenesis (she only had a right kidney, and it wasn't formed correctly). Finding just one of those birth defects is pretty fatal, so her outlook was hopeless.

I kept praying and begging for a miracle. I didn't know if it was part of Heavenly Father's plan for our family for her to live; but I still hoped for the impossible. Then at an appointment the day before Thanksgiving, an ultrasound showed that Maely had little to no amniotic fluid left around her. This was because the one kidney she did have was done; it had overworked itself trying to do the work of two healthy, functioning kidneys. I know these medical terms will always be hard for you to understand, Trevor; I have a hard time understanding them myself. But this wasn't good news and meant that Maely was even more likely to die in mommy's tummy than before.

Your dad and I continued to try and enjoy every second we had as a family of 4. We did a lot of things while I was still pregnant with Maely that we would have wanted to do if she could have grown up with you. We never knew when her heart would beat for the last time, so we tried to cherish the time we had with her. We still prayed and hoped for a miracle- but a different one than before. This time we asked God to please, please, let Maely be born alive. We now understood and accepted the fact that it was not His will for her to stay on earth, but prayed that we could have 2 minutes with her. We also asked that she not feel any pain or suffering in the few minutes we hoped to have with her. It seemed too much to ask for, for her to be able to meet you, but that was our biggest hope. That was our new miracle.

And then 5 days ago, she came into the world. I had a c-section and prayed Maely's already fragile body would handle it well, that there would be a better chance of her making it for a minute or two. And guess what, Trev? Maely WAS alive! She even opened an eye when your dad held her right after she came out of my tummy. Your pediatrician was there to make sure she didn't show any sign of distress and to keep checking her heartbeat. Each time he listened she was still with us. And then it got even better because you got to meet her a few minutes later! It was such a special, sacred, and miraculous moment. Yes, we got our miracles! I know you knew that she was your baby. You were so sweet and curious! I loved watching my little boy touch my baby girl. I will never forget it.

Then after one precious hour and six minutes Maely had to go. I know that your grandpa Mick (my dad) was there to take her home to our Heavenly Father after she had fulfilled her purpose on earth. We had her for SO much longer than we ever could have imagined was possible. She was a fighter, just like you are. She held on for such a long time and gave us the sweetest memory we've ever made as a family. Ever since I found out I was having a girl, I started to dream about how fun it would be to watch you grow up as Maely's protector and always be watching out for her. But now she'll be watching over you from heaven, and sending protection from above. And let me tell you Trevor, it doesn't get any more special than that.

I have no idea why your dad and I got so lucky to have not just one, but two perfect kids, with the most special of spirits. I know that your Father in Heaven has a plan for you, and it included you coming to this earth in a body with Down Syndrome. I know that you will accomplish things that the rest of us regular folk will never be able to! And I know that Maely's spirit was so righteous and perfect that she only had to come to earth for that short time. Imperfect bodies with perfect spirits; that what you have and she was given for her short time on earth.

Your dad and I have always believed that families can be together forever. We know we'll be hanging on to your coattails to have a chance at eternal salvation, "the greatest of all the gifts of God." But we need you and your perfect self now more than ever to get back to God, our Savior Jesus Christ and Maely- heaven knows she's already there! Our biggest goal really is to be with you forever, Mr. T! Forever with Trevor and Miracle Maely.

11/25/16 playing with Maely <3

Miracle Maely with a heartbeat!

Meeting little sister for the first and last time

A few hours after she passed, but still one of mom's favorite pictures

Right before we let her body go. "See you later, Maely! I love you!"  

To learn a little bit more about The Plan of Salvation, visit  https://www.mormon.org/beliefs/plan-of-salvation :)

Mother's Day

I've always loved Mother's Day. Even when I was a little I looked forward to giving my mom that little craft I'd made at school or a church activity. As I got older I loved picking out something for my mom. These days I can spend as hour picking out the perfect card and writing a novel in it for her- she assures me she loves it though haha :)

Now that I'm a mom, the day is even more special to me. Last year I took Trevor to church for the first time ever on Mother's Day. I don't remember feeling more proud in my whole life than I did that day, as I looked down at his perfect face while people were speaking about moms. It was a special moment for me, wondering how I'd won the jackpot and scoring this little kid! I look back at pictures from that day and can't believe he was ever that small. It boggles my mind! See pic below for proof that he was once this small haha!

Mother's Day 2015

This Mother's Day, Trevor is a LOT bigger! He's such a joy and still the easiest little kid. It's been so much fun watching him progress, even if it's been at a MUCH slower pace than I'd like. He is really so perfect and I KNOW he was meant to me mine. A couple thoughts have been swirling around my mind this morning about being Trevor's mom and about my birth mom, so I thought I'd get them in the books :) 

I look back throughout my life and realize that I was being prepared for a long time to have a child with special needs; my whole family, really, has been being prepared for a long time. 

My dad was quadriplegic and had been for many years, when he met my mom. They dated and got married. And thank goodness for that because I wouldn't be here! My mom has obviously never been afraid of a challenge- she married my dad knowing full well she'd be his primary care-taker. That's a big deal and would be daunting to anyone. But she loved him and that's all there was to it. So she lifted him in and out of bed morning and night, bathed him, dressed him, shaved him, fed him, loaded him into his wheel chair, into the van, and  so so much more, She did this for many years before he passed when my sister was just 5, my twin and I just 18 months old. she has always had a love for others who are sick or otherwise disabled. Before she even met my dad, she spent years working at the hospital caring for patients with Cystic Fibrosis (or CF). Sadly, hardly any of those friends and patients of hers are still alive, but for as long as I can remember she has always spoken with so much love as she told us about them and her experiences. 

A few houses up from us, there is a girl with Cerebral Palsy. She and her family moved into the area when I was i elementary school and is just a few years younger than me. At first I didn't know what to think of her or act around her; she could not not speak, eat on her own. I was definitely unsure of it all because I'd never been exposed to that before. But my mom taught me, through her words and actions, to just love her, and try to treat her as I would any other friend. My mom made sure she was included in our all our church activities and took time to visit with her. She STILL does, 10+  years later.

In our church, there is an organization called Special Needs Mutual. It's a place where teens with disabilities (a wide array of them) can go to interact with peers, both typical and disabled. My twin brother had the opportunity to participate in this as a "special needs buddy" when we were in high school. He loved the time he spent with these kids a few hours a week, He would always come home with some great stories about what had happened that night! One year, the youth in our ward were asked to help with this special needs mutual prom. What an AMAZING opportunity that was! It was so good for all of us to get to be around these really special kids.  

Around this same time, I was in my junior year of high school when I was selected to go to the special needs seminary class. So instead of going to class with my typical peers, I got to go into the class that had 4 or 5 5 kids with special needs, a couple with Down Syndrome and a couple with other things, I was assigned to be Cameron's buddy :) I LOVED Cam. He was like my best friend. He got my cell number from a friend and would call me almost every day hahaha It was great and always so funny. He was such a joy to be around and I never left that class without a smile! I go to do this for a whole year and I will never forget it. Being surrounded by these kids, learning about Christ's teachings to love one another, was such a testimony builder. I'm so grateful for that year!

Cam and I at the Special Needs Mutual prom. He had just shaved off his eyebrows haha!

When I was 14, my brother, mom, and I went to El Salvador for my brother's Eagle Scout project. For those of you who don't know, McKay and I were adopted from El Salvador when we were 11 months old. He decided to collect items and money for the orphanage we'd been in and wanted to distribute them for his project. We were able to collect so much that once in El Salvador, we got to deliver some of those item to a different orphanage. This one was far away from the big one in the city, where McKay and I had been. This orphanage was way up in the mountains, secluded from many people. It wasn't until we got there that we realized this orphanage was a place where children with all types of special needs and disabilities were living. It was absolutely heart breaking. I will never ever forget walking around and seeing all these little face, perfect souls in imperfect bodies, who were alone. They deserved to be loved. Many of these kids had Down Syndrome. Many had just physical disabilities. I left there that day with a heavy heart, saddened that these kids would most likely never know what it was like to be loved by a family. 

Little things have continued to happen throughout my life that have gotten me ready for Trevor. the same group of Special Needs teenagers sang during church once; the song was called "In This Very Room' and is about loving everyone around you. When I got pregnant and found out the baby might have Down Syndrome, I seemed to see individuals with DS everywhere! There was that cute little boy with his mom and little brother at Ikea in front of me waiting to get a Cinnamon roll (because when you're at Ikea you OBVIOUSLY don't leave without one!); when I was volunteering at Primary Children's Hospital I had the opportunity to help a mom and her daughter find a specialists's office for an appointment. Then there were videos someone would share on facebook (Dog befriends little boy with Down Syndrome) and an article about a Dad who refused to give up newborn son with Down Syndrome somewhere in Europe. I definitely didn't realize it at the time, but God was softening my heart to the reality of me being a "special needs mom."

The day we found out Trevor's enlarged ventricles in his brain pointed to a 4% chance of him having DS was so somber. That night, I remember telling my husband that "I could handle ventriculomegaly and maybe hydrocephalus, but NOT Down Syndrome." Man, was I wrong.

Being Trevor's mom is truly a dream come true! I cannot imagine him being any different than he is. Because DS, I have met so many other amazing mamas of children with special needs, Many of them I follow on instagram. Last night as I was scrolling through my feed, I saw a quite from a mom of 3 boys who all have DS (she adopted at least one of them). The quote said, "A child born to another woman calls me mom. The magnitude of that tragedy and the depth of that privilege are not lost on me." She continued on about the experience she had with one of her sons' birth mother. I'll have to ask her if I can post it word for word and update later. Tears ran down my face as she described seeing this woman, who was too ashamed to see her disabled son in the orphanage, hold her baby before he left that country forever. She went to the airport with the adoptive family, crying and cuddling him the whole way, not letting go until the very last minute at security. Amber (the adoptive mom writing the post) said that it left such an impression on her, and that because of that experience she'll always be incredibly defensive of birth mothers, but also grateful and indebted to them. 

This Mother's Day I've been thinking a lot about my birth mom. What was she thinking when her infant twins, just days old, left her forever? I know the reasons behind why she let us go... she had no choice. But what was she feeling? Did she wonder if she'd ever see us again? Did she hope to someday have contact? Does she think about us often? Do her other children make Mother's Day special for her? We know very little about my birth mom. Her name is Emma Guzman; we have one very old picture of her that shows her shotr stature, brown skin and short, dark hair; the last we knew she was living in Ciudad Arce, a small little place right between San Salvador and Santa Ana; she already had other kids before getting pregnant with my twin and me; she didn't have any way to feed another baby (she didn't know she was having twins until she was in labor). And that's about it. But last night and all day today, I've thought and thought about her. I am so grateful for her! So grateful that she had the courage (because I strongly believe that no birth mom who places her child for adoption can do so without courage, no matter the circumstances or reasons behind not being able to keep the baby) she had to do what she knew was best for my twin and me. I hope and pray that one day I'll meet her, and be able to tell her hoe thankful I am for her (but I better practice my Spanish first!). 

Nothing in life is coincidence. I know, without a shadow of doubt, that God has a specific plan for each and every one of us. I know I was meant to be born to Emma, but adopted by my incredible parents in the U.S. and raised by a mom who embodies all that charity is, and has it for everyone around her. She has more faith than anyone I've ever known. With that love and faith, she's showed me that we just have to trust in God that everything will work out. Without her instilling that in me, I'd have had a much harder time with Trevor's diagnosis.  Sure there are days when I feel like it isn't fair that Trevor has to work so much harder than other little ones his same age to do simple things they master so quickly. There are days when I wonder how on earth I'm gonna keep this up for 40, 50+ more years. How will I live out these other dreams I still have? But then I remember that being a mom has always been my biggest goal and dream! And Trevor made it come come true. 

Thank goodness for moms, right?! In this cute video about moms I watched today, it said "Life doesn't come with a manual, it come with a mom." Thank Heaven for that! Not let's just hope I can be half as good as those moms who influence me daily :)

Holland

Just a day or two after having Trevor, my mom was visiting at the hospital. She pulled some papers out of her purse and handed them to me, saying that she'd remembered this story and thought I should read it; it was called "Welcome to Holland."

This little story is the thing I was talking about in my last post that I purposely omitted; it is so special to me that I thought it deserved it's own blog post :) This literary treasure is loved by so many people who care for someone with special needs. I think it pretty clearly describes how we feel upon learning that things will be different than we imagined. The author, Emily Perl Kingsley, actually wrote this essay in 1987, about her son, who was born with Down Syndrome. How I wish I had known about this on December 1, 2014 when we were told about the 4% chance! But I am so grateful I have it now :) I still read it every so often and probably will for the rest of my life.

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

"When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland."

We have the cutest tour guide for our adventures in Holland! And we feel pretty darn lucky to be tourists because it really is beautiful here!

The Plan of Salvation

Braxton and I had to speak in our church meeting last week on the Plan of Salvation! Worst topic EVER when it comes to crying haha! There were a lot of thoughts that went into it, so I'll share it here, because it presents a lot of things I've haven't talked about yet :) It's long, I know... sorry haha!

The Plan of Salvation

In a talk that Larry M. Gibson gave at BYU last year (“Following Heavenly Father’s Plan”), he states that part of the plan of happiness includes “The opportunity for us and for our families to return to our heavenly parents, prepared for exaltation and eternal life.”

But in order to get there, I believe we need to have a plan. When we make plans, we need to make goals first! If there was one thing that was pounded into my head as a missionary, it was “figen metas y hagan planes, “ or, to “set goals and make plans.”

Elder Gibson states “Heavenly Father believes in plans. He has a plan for the salvation of His children—a specific plan just for you. It is referred to as the plan of happiness because it is designed to bring us happiness in this life and a fullness of joy in the life to come.”

Heavenly Father’s plan for me has been amazing. It all started when I was adopted, and has been nothing but wonderful ever since. But recently, I’ve learned a lot about the difference between His plan and mine. I had the perfect plan to reach a couple of the biggest goals I’ve set for myself: to get a Master’s degree and become a mother. the plan was to take the pre-reqs for BYU’s Master’s of Social Work program and be accepted to the program for Fall 2015. My goal was to finish the program right in time for Braxton to start his graduate program wherever he was accepted. That way I would be able to have a good job to get him through school. I also decided that this was the perfect time to have a baby! I even knew when I had to get pregnant and have the baby to fit perfectly into the school aspect of my plans! I didn’t feel like it was right to put off a family for a Master’s program, and even though I knew it would be hard to do it with a little one, we’d figure it out!

It didn’t take long for me to get pregnant (which I am so grateful for) and I took the pre-reqs for the master’s program and got excellent grades in them (even an A- in my STATS class!). I obtained outstanding letters of recommendation, volunteered at Primary’s, had a wonderful mentor at BYU with her PhD in Social Work who said with all these things and many more, I was a shoe in. I already knew what I wanted to do with my degree and Licensure- adoptions and International child welfare. I was so excited! I submitted my application in January and patiently waited to hear back.

Last November, we found out there was a possibility of Trevor having Down Syndrome. I cannot tell you how hard that week was. I kept thinking that if he did indeed have it, it would make my plans for getting a Masters much harder.

Then early one morning this past March, Trevor came 5 weeks early. It was a whirlwind! We knew he had Down Syndrome, but the only thing I was a little worried about was how it would affect me being able to do the Master’s Program. I didn’t know if he’d have a lot of extra doctors appointments, therapy sessions, etc. that would make traveling to Provo hard.

The day after he arrived, I got an email that the decision about the program had been made. I went to the BYU website and closed my eyes as I waited for the page to upload that had my results. I open my eyes and saw, “We regret to inform you that…” I didn’t even bother to finish reading the rest. I sat there in disbelief for a few minutes. My perfect plan was falling apart! Ok, I DID get my baby, which I was so grateful for, but he came in circumstances different that I’d planned for. But I wouldn’t have a masters. I wouldn’t have a good job to get us through Grad school... what was I going to do?

Sister Worthen, (wife of BYU president Kevin Worthen) said to BYU students last year,  when setting goals, it is important “to allow for flexibility. It is important that we learn to adjust to change. We need to learn not to panic when things don’t go exactly as we have planned . . . Learning to be flexible and adjusting to change can often be very difficult. However, if we are striving to reach our full potential and are setting goals that are in line with Heavenly Father’s plan for us, He will help and guide us.”  

She speaks of the prophet Nephi, and explains that, perhaps, he had plans, too. Specific plans to achieve certain goals, but that “Heavenly Father had different plans for Nephi. His route was not going to be a straight course. Nephi definitely had unexpected detours. But because of his obedience and great faith, he did not panic or fear the detours. He was able to be flexible and adjust to the changes that occurred. He was also very willing to learn new things along the way—even things that may have seemed impossible, such as building an “exceedingly fine” ship (1 Nephi 18:4) that would carry his family to the land of promise.

Nephi had many wonderful qualities. He accomplished much during his life . . . [but always possessed the] ability to stay true even when detours were placed in his path. He not only made the necessary adjustments to his plans but did so with a positive attitude. He was always grateful and quick to recognize and acknowledge the tender mercies of the Lord in his life—even during the unexpected and difficult times. If we can be flexible with similar grace, we will be blessed, as was Nephi.”

Several years ago, I went to a YSA activity where Elder Christofferson spoke to us very candid manner. I remember feeling the Spirit the whole time, but the only words I remember him saying were that if you’re doing the best we can, you will have the righteous desire of your hearts. I think of that often now, along with these words in Isaiah (58:8-9):

8 ¶For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord.

9 For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.

In his talk, Larry M. Gibson substituted the word “plans” for “ways”, so that the scripture says, “My thoughts are not your thoughts, neither are your [plans] my [plans for you], saith the Lord”

Going back to that day in the hospital, I remember that  almost as soon as those thoughts of fear and confusion popped into me head, they were instantly swept away as a calm feeling came over me. I knew the Spirit was telling me that this was the right thing, that this may not have been my plan, but it was someone else’s. Those fearful thoughts I had had moments before were replaced with knowing that the reasons I wanted to do Social Work were good reasons; I would be be able to bless many lives doing adoptions and advocating to improve child welfare. But there was a better reason to NOT be in school right now years; a little boy, born with Down Syndrome, who needed me to advocate for HIM, and be there with him for these next years. What a tender mercy this was.

In the days that followed, I continued to think about this turn of events and realized how much stress heavenly Father had just saved me! I’m sure that if there’s anything he knows about me, it’s that I can get beyond stressed when it comes to school work. He had to deal with that for 4+ years while I was trying through my studies at BYU! I’m almost positive that had I been accepted to the program right then, I would have been so worried all summer about starting the program. Wondering how I’d be able to stay on top of my grades to not get kicked out of the program if I got 3 Cs. Would I even enjoy it? Yes, He knows me, and He knows what is best.

My patriarchal blessing says that I will have the opportunity to go on to advanced collegiate degrees if I chose to, and that the Lord would sustain and assist me in those studies; but I am to choose something that would allow be to serve and bless the lives of others. With this promise I know that one day, when it’s the right time, I'll get that righteous desire of my heart, I’ll be able to get that Master’s of Social Work degree.

(There was something else here that I am sharing in a separate post, so you should read it! It's my favorite part of this talk!)

I know that God has always had a plan for me! Many times it's gone differently than I imagine it would, but by now I should know that His plans are ALWAYS better than mine, 100% of the time! I am so grateful for a loving Father in Heaven who knows exactly what I need. I am so blessed to have the Atonement in my life, to help me get through the unexpected events, to pick me back up when I fall down. I am so incredibly grateful for the Gospel of Jesus Christ :) 

Going home!

After we got through that last hiccup at the hospital, things went pretty smoothly with Trevor :) I stayed busy with all my baby showers that were supposed to take place BEFORE Trevor came haha! My best friends even had a shower for me on National Down Syndrome Day!

The pediatrician talked with the neonatologists at Primary's and they thought it would be fine for Trevor to go home that week on oxygen and with his feeding tube, if i was up for learning how to handle it all. But I wasn't feeling super comfortable with it, so we decided to keep him in the nursery. For a second there, we thought there was a possibility that he had pneumonia, which was scary. But thank goodness it turned out to be ok! Doctors, nurses, and therapists kept telling us that one day Trev would just decide he wanted to eat from a bottle and we would be home a couple days after that. We'd been in the hospital for so long that I wasn't sure if I believed them haha!

One super exciting thing was that one of Trevor's nurses let me take Trevor to MY room for a bit! I almost cried haha! It was a special occasion, though, because my sister-in-law had JUST got home from her mission like 2 hours before! Our whole family was so excited :)

The only thing that was still a little frustrating was that different nurses continued to have different ideas about what was best for Trev. We had gone from doing a bottle every two feedings to every other feeding. So he was using the NG less, which was good. But it was frustrating because it seemed that he would be wide awake when it was a scheduled tube feed, and really sleepy when he was supposed to take a bottle, and depending on the nurse, it was stick to the bottle/tube schedule. 

One day I expressed this to the speech pathologist who was checking on Trevor. She and her colleague, Dana )the physical therapist on Trevor's development team) were such a blessing! They were the only real consistency throughout the whole process. Jen (the speech pathologist) was there to help with all of his feeding and any possible issues that might come up with that eating (I never knew how important a baby's swallow, pacing, and suck/swallow coordination was until she came into the picture!). She agreed that it didn't make sense for us to tube feed him if he was awake and take a bottle, or try to force a bottle if he was tired! THANK YOU! So she talked to the nurse about making a little change to see if we could see any improvement. It was interesting to hear their conversation- the nurse did NOT agree with Jen but was trying to be polite about it haha Hilarious. WELL. That night, April 10th things started to change! Not only did Trevor take a full bottle, but we got to put him in clothes for the very first time EVER because his arm was all better! Jen had ordered another x-ray and things were great! I was so happy to see him clothed haha :) :)

Look at those dino toes!

He had also yanked his NG tube out and instead of replacing it, the nurses decided to take that as a sign of him not wanting it anymore haha! Excellent! Braxton and I went to bed so excited and prayed like crazy that he'd take the next feeding from a bottle, too. The next day I was a ball of nerves from feeding to feeding just hoping he'd keep it up! And he did! The next day we were gone a lot because we had Braxton's sister's homecoming talk. After church, Braxton's aunts and uncles kept asking when Trevor was going to come home, and we didn't tell anyone that he'd been doing well for the past 2 days! While we were gone the nurses tried to take him off oxygen to see if he could go home without it. He did really well for a couple hours, then his sats started to drop so he had to go back on it. So he would be going home with oxygen, but I was ok with that! That night the nurses did his car seat test and I was SO nervous! He needed to be able to sit in his car seat with oxygen, without his sats dropping below 90. If he failed, he'd have to have a special kind of "car seat" that was actually more like a bed, where he could lay down and keep his breathing under control. I made the nurses call me in the middle of the night to tell me how it went, and they called at 3 am to say that he was good to go! This was the LAST step in the process of him going home! I could not even BELIEVE this was happening :)

Tiniest little baby!

Before we left for church on Sunday for Kyrsti's homecoming

The next morning was the most amazing ever. It was crazy trying to get him ready. Mondays in the hospital are hectic as it is, but getting him discharged made it even more nuts haha An audiologist came to do his newborn hearing screen, which he didn't pass. So we would have to take him to Primary's once we got home to have a more accurate one. No big deal. After that, we just packed up his things and put him in his car seat and LEFT!

The morning of the big day!

Going home in the cutest outfit form Auntie Juliana!

It was like a parade as we walked past the nurses's station :) I just could NOT stop smiling and didn't start crying till I saw one of the other nurses crying haha! I've never been more nervous to drive in all of my life! Nerves nerves nerves. But we got home and it was just surreal! Braxton was at school and we just couldn't wait for him to get home later that day! Monday April 13, 2015 was the best day of my LIFE :)

En casa!!!

Wasting no time with Auntie and Corbin! 

Challenges

This is the last thing I wrote about our hospital stay. Undortunately we ended up being there for a whopping 5 weeks! BLEH. But here's a little of what was going on that week.

Friday March 20, 2015

Things with Trevor have pretty much been the same, except that he ended up needing oxygen on the 16th because his sats kept steadily decreasing. He held off for almost a week, which was amazing, but now he’ll have it for who knows how long. But some good news is that he doesn’t need any IVs anymore! It was awful to have them sticking needles in each hand, foot, and eventually his head, so I’m way happy he doesn't need it! They removed that last one placed in his head on the 15th :) As for me, I am doing “hotel stay” here in the hospital. After I was officially discharged, I moved out of my postpartum room and into a smaller room across the hall and closer to the nursery. It’s so nice that Altaview has this option! I get to stay in this room for FREE as long as Trevor is still in the hospital :) Even tho we only live 8 mins east of the hospital, it’s a huge blessing to be able to sleep there, have a room to pump in, keep my things in, and just not have to come and go all day long! And since we are so close, I can still go home to eat dinner, do laundry, etc. So that’s worked out really nicely :) But…. today was AWFUL! At first… but it got better haha :) Here’s the 411.... Last night Braxton didn’t didn’t get  back from school till late and was only able to be at the hospital with Trevor and me for an hour before he had to go home to sleep because he had work early the next morning. I’ve missed him a lot this week since he had to get back to regular life! And since we left my postpartum room and switched to the Hotel Stay room, he’s been sleeping at home because there isn’t a good place for him to sleep in this new room. It’s been hard because even tho we’re not in the same bed, I miss not having him in the room with me. But as much as I want to be with him, I don’t want to sleep at home and leave Trevor here “alone” (and by that I mean without me, even tho there’s always nurses in there!) all night long. So, as Braxton got ready to leave I started crying of course. I was just done with it all and honestly going a little stir crazy sitting in the hospital all day. I couldn’t control myself and I felt so bad because Braxton was convinced he needed to stay with me, but I insisted that he didn’t because he needed good sleep. Reluctantly he went home and I stayed at the hospital. Booo.

So then this morning I get up and trudge down to the nursery to hold Trev during his 9 AM tube feeding. There’s a new nurse in there who I’ve never seen and who’s never taken care of Trevor. When I saw him he didn’t have his splint on and his arm was just laying by his side. I wasn’t too happy about this because that’s the one position it should never be in! If it’s not splinted in his brace than it has to be wrapped up with his arm across his chest. Frustration people, frustration. Then while moving him around changing his diaper and what not, he starts crying. He never cries and so I didn’t know if it was because of his arm hurting, he was hungry, both? Something else? But no mom likes her baby to cry. So they finally got it wrapped up against his chest and he’s ready to eat.

As I mentioned before, this was supposed to be a tube feeding… the nurse has a bottle out for him. I asked why and she said that since he was awake and looking hungry, she wanted to give him some oral gratification with the bottle. Ok… I wasn't super happy about her switching up his schedule but didn’t ask further questions because I’m non-confrontational and don’t like to ask questions. THEN she decides to give him his milk through a new bottle, with a slow flow nipple because she didn’t think he was doing very good with the other ones. That didn’t make sense to me tho because the speech pathologist had watched him eat a couple times with the regular bottle and said he was fine. Ugh. I felt like there was a lot of inconsistency between the nurses and what those on the developmental team was saying. Ugh. Again. So then Trev wouldn’t eat…. at all. So he had to take it through the tube anyway and the stupid bottle was all for nothing. And I was worried that his feeding sched was all turned around now. Then the pediatrician comes and talks to me and says that he’s not making much progress when it comes to his weight and that she was gonna have a consultation with Trevor’s pediatrician and Neonatologists at Primary’s to talk about his long-term goals.  It was all very discouraging and it took everything in me to not cry before I left the nursery.

As I’m about to go, I see an envelope that says “To Mommy and Daddy, Love Trevor” taped up to one of the many monitors hooked to his bed. I read it once we were back in the room. This is was it said:

I was crying the second I opened it haha! Marissa, the sweet nurse who was taking care of him the night before (who had also taken care of me postpartum) took the time to write that card out and include the small accomplishments. Holy cow, how did she know that’s what I needed? She listen to the Spirit, I guess, but I’m SO glad she did! So after that I was fine for a bit. Then Mom calls. Flood of tears all over! So of course she hangs up the phone and is down here 10 minutes later. Gotta love Moms :) She listened to my frustrations and sobs and decided to call the people on the developmental team so we could see if they agreed with what the nurses were doing. We talked to the Speech Pathologist and she resolved my concerns over the bottle and told me what needed to happen with his arm. She also called the nursery and told the nurses that info too, to make sure it happened. Then she pep-talked me and reminded me that I’ve gotta be Trevor’s advocate and speak up if I’m not happy about something or ask for clarification when I need it. But she told me that I’m doing great and said being a mom isn't easy, especially when the baby’s still in the hospital. It was perfect :)

Braxton came home from work a little early, which was SO nice :) I cried some more and we went down to the nursery together with my mom. Once down there we talked to that nurse and I asked her why she was doing the things she was… and it all made sense. I was fine with it! But I didn’t understand that this morning because she didn't explain it and I was too shy to ask. Here’s what she said: There’s a new feeding protocol coming down the line called “Cue feeding” where if the baby’s showing signs of wanting to eat, you give them a bottle. If they don’t show signs of that, then you go to tube. That makes sense. If you shove a bottle down a kid’s throat when he’s not hungry that teached him to never take a bottle ever again. Anyway, I was totally fine after I understood everything and I apologized the nurse for being so on edge that morning. It all worked out. Having Braxton there helped, too :) Before I left, the pediatrician called back and said that in the consultation with Trevor’s doctor and the neonatologist at Primary’s, they decided that he needs one more week in the nursery at Alta View and then they will asses everything again and see about the possibility of him going home with an NG tube. So we shall see!

The whole thing was just a huge learning experience! I realized that I can’t be timid about about any of this and if there’s something that I don’t understand or am not comfortable with, then I’ve GOT to speak up. It’s hard to do all this along while Braxton’s at school or work, but I’ve got to because Trev needs me! I’m his mom and that comes with all this. And I’m ok with that, because I’d do ANYTHING for him :) A bit of good news to end on: He gained 2 oz. in a day! Went from 5 lbs. 5 oz to 5 lbs. 7 oz.! Hopefully he can keep it on this time :)

Long road ahead

March 14, 2015

Our little guy is officially Trevor Kenneth Anderson! Yesterday Brax and I were looking at him and I said, "What's your name? Are you a Derek or Trevor? I honestly felt like either! So I asked Brax what he thought and he said Trevor :) We both got a little teary haha He's perfect! We’ve also started figuring out more about what the little guy is going to need and what we’ll be going through. Our little man will be in the nursery and not able to come out because he’s so tiny and needs constant supervision. Only me and Brax and grandparents can go in there. They’re going to be giving him bottles because they need to be able to know exactly how much food he’s getting when he eats, and that’s harder to tell with nursing (and my milk still isn’t quite in yet, either). Right now he takes so little! It’s around 6 ML (milliliters)- it’s NOTHING! He had to get an NG tube a couple days ago, which will ensure he gets the nutrients he needs. He’s on a 3-hour feeding schedule and I go to every feeding but have a hard time making it to the 3 am and 6 am haha! The same day he got the tube, he had to be under lights because his bilirubin levels are a little high. I HATE it because the only time he can come out from under the lights is when he eats. So I can only hold him for a half hour every 3 hours :( Such a bummer. I can tell when he’s gonna need the lights because his skin starts to look so yellow. Booo. It’s like one step forward (No more IV), but two steps back (high bilirubin and NG tube). A team of therapists have also been in to help with his arm. A physical therapist named Dana created a little plastic splint for his arm to keep it from moving while it's braced across his chest and wrapped up with Coban. So he won't be wearing clothes anytime soon because he screams out in pain if you touch his arm :( But the therapist had an x-ray ordered to see what the break was like and after checking it out is confident it will heal properly on it's own in 4-6 weeks. So other than that he’s doing good so far and I just have to keep pumping so hopefully I can have milk for him ASAP!

What he looks like when he's tanning under the lights! That little eye mask is stylin ;)

Who knows when we'll see him again without a tube across his face

He had some boogers haha!