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!

My baby is here!

I tried to write some things down when we were in the hospital and decided to post them now, in separate posts. Unfortunately there are only a few (I WISH I had done more!); I did have a big list of little details like weight gain and such on my phone, but then it decided to crash a few weeks after we got home, before I transferred that info to my computer :( :( I lost all of that info and quite a few pictures :( I still want to cry about it! Learn from my mistakes, friends! Back ALL your things up.

ANYWAY! Something that you probably didn't know, that is included in this post, is that Trevor's left humerus was fractured during his delivery, so there is a little info about that, too. 

Wednesday March 11, 2015

Yesterday I had a baby. WHAT? hahaha! Trevor’s due date was April 15th. Last night I’m laying in bed, fast asleep, and then I wake up to a flash flood. In my pants. BAH! I knew right then that my water had broken. I woke Braxton up, told him to go upstairs and get my mom and sister (Sydney), then went to the bathroom to try and figure the whole mess out ha! They came down and asked if I’d just peed my pants (I wish), but after seeing the sheets and I think they understood ;) Thank GOODNESS Syd is not only a Labor and Delivery Nurse, but works where I delivered! I needed her cuz I was so shocked that my brain went empty and I had no idea what to do! She called the hospital for me to tell them I was coming in, and we went on our way. 10 minutes later, we were checking in (thank goodness for Alta View Hospital that’s so close to my house)! Syd, came with us cuz I was freaking out. I got into my hospital gown and they started to check everything out. I’d started having contractions and was ready for a long night ahead! Sure enough my water had ruptured, I was at a 2, and… the baby had flipped around and was now breach. Whhaaat? At my appointment a week and half before he was still head down-- little stinker! So they started to talk real fast and Syd said, “You know that this means that you’re having a c-section right?” Since contractions were starting, they couldn't have labor progress when he was turned around, so no vaginal birth for me. Funny side note: a couple months before, I had told Syd that I refused to have a c-section because I was scared of the recovery, and she told me to not say that because if I ended up really having one then I would be totally freaked out! Luckily, I was calm about the whole thing. Phew! Before we went into the OR, Braxton and my doctor, Russ, gave me a blessing. It was perfect :)

Waiting to be examined

We knew it was the start of a long night, so Brax grabbed a snack haha

In the OR, the anesthesiologist started the epidural.. I WAS TERRIFIED! For some reason I was just convinced that it was going to hurt like crazy! But surprise surprise, it wasn’t bad at ALL! I can really psych myself out sometimes haha After the epidural started working, I threw up a few minutes later, which wasn’t so glamorous and then lost all feeling in my lower half. Craziest feeling ever. My doctor and a fellow OB went to work and at 4:53 AM on Tuesday March 10th, my little boy was here! He started crying and I was flooded with relief! That meant that his lungs were at least somewhat ok :) They put him in a blankie, did some stuff and brought in over to me. It was such a special moment that I’m not even going to attempt to describe! In that moment I STILL wasn’t really thinking about the whole Down Syndrome thing.

Chubby cheeks!

I went into the recovery room while Brax accompanied our little boy to the nursery. My blood pressure was really low for awhile so I was back there for a bit, and my sister came in. That was when I finally started thinking about Down Syndrome. We had a really good conversation about it and we both cried and talked about what it could mean for our family. Then Braxton and the pediatrician on call came in. The pediatrician (Dr. Erickson) said that he wasn’t positive if he had it or not, but that there were some classic physical markers that indicated it was likely; the creases in his palms, his floppy tone, and the extra skin on the back of his neck. He also told me that Trevor had a broken arm- because of his low muscle tone, his left arm got all tangled up behind his head somehow and he kinda got stuck during the C-section. They really had to yank his little arm down to get him out and it broke in the process :( BUT, I was surprisingly calm about the whole thing and wasn’t upset about the Down Syndrome or his arm at all. Dr. Erickson also said that for a preemie he was doing good, and that was a relief! 5 lbs, 5 oz, and 18 inches long is a good size for a baby who came 5 weeks early! Today my mom told me that when she was talking to Dr. Erickson, he told her that when you get a call in the middle of the night for a 35 week baby, it’s not a good thing and makes you instantly worried. But he also said that considering how well he’s doing for his age, he’s so happy with his health. I am so grateful that Dr. Erickson is on call right now because he is do great! He explains things to Brax and I really well and just wonderful. Russ (my OB/GYN) said that of all the pediatricians at Altaview, he thinks Dr. Erickson is the most knowledgeable and best ped. Excellent :) 

You can kind of see the break in his arm, poor little man :(

The nurses tried to wrap his arm up a little so he wouldn't move it

 

ANYWAY…. Once my blood pressure went back to a normal range, they wheeled me into the nursery in my hospital bed. Holding my baby for the first time was unforgettable! I couldn’t believe I was a MOM! I still can’t haha! When I saw him I couldn’t tell right off the bat if he had DS because he was still so newborn looking… but I just felt like he did. It’s hard to explain but I could just feel it. Then the more I held him and looked at him, I could see those markers the ped was talking about. My mom and Braxton’s parents came in and we just took it all in. It had been a crazy few hours! After I held him for a little while they took me back to a postpartum room and we all visited there for a little bit. Once everyone left I honestly don’t remember too much of what happened… haha! At some point I went down to the nursery again to be with our baby :) We still didn’t know if he was Derek or Trevor!

tiny little feet!

 

I went back to the nursery later today. He’s not on oxygen, which is amazing for a 35 week baby! He did have an IV, though. Dr. Erickson said that he’d sent the baby’s blood to the lab so they could do a Karyotype test that would tell us if he had DS or not- the results would be back later that week. I fed my baby a bottle and and just snuggled him. Just barely I was back in there and we tried to see what he would do with nursing… not a whole lot happened haha! But it’s been a great day and I love my little guy so much!

 

The little bed in the nursery where he will stay until further notice

Raising awareness

It's been a few days, so time for another post! I've been thinking a little bit about the things I learned being pregnant and these first 7 months into mommy-hood. I'll share them here :)

Every woman will experience pregnancy a little differently than the woman next to her. If we have more than one baby chances are our pregnancies will even be different from the rest! For me, I didn't get sick at ALL my first timester. I was tired a lot, but that was it! My hormones never caused me to be moody or overly emotional, nothing like that. Whenever I told people, those who had experienced morning sickness would look at me like I was an alien and say something like, "What? Are you serious? I was so sick... etc. etc. etc. You have no idea how lucky you are!" People would also comment a lot on how small I was, and again, that i was lucky. But I didn't feel as lucky as they would make me out to be. I didn't gain very much weight my entire pregnancy, and it stressed me out! I was nervous that he wasn't growing enough and wouldn't be healthy. I actually had an appointment with my doctor scheduled for a few days after Trev was born to make sure he was ok because i wasn't gaining the whole time. But when Trevor was born, even at 5 weeks early, 5 lbs 5 oz was a good weight for him. Thank GOODNESS! 

It was also hard to hear people people tell me how jealous they were they didn't have easy pregnancies like me because seriously I was really hard emotionally! Especially right after we found out Trev might have Down Syndrome, I was an emotional wreck. Once we went to the temple it got better and subsided quite a bit. But there were still days when the fear of the unknown would creep up for a few minutes. Those last months were an emotional roller coaster, but nobody but our immediate family knew.

Now that Trevor is here, those fears have of course gone away. He does have DS and while there are still unknowns about his future, we try to just take it a day at a time because you never know what the future will be like! You never know what he will or won't struggle with, so there's no point in worrying about it until you have to!

Thankfully, only one person has said "I'm sorry" when they've heard Trevor had Down Syndrome, and it was in an email. But it still stung. I wasn't sorry at all! We were (and are) happier than ever! I can't speak for EVERY parent of a child with DS, but chances are they don't want to hear "sorry." If they're like me, they're not sorry they have a little one with an extra chromosome because they are thrilled to have the baby they've been waiting for, not matter the circumstance he/she came in! And even if they're not like me, and are still having a hard time coping with the diagnosis, I'm sure they're feeling enough sadness and even a little sorry for themselves- which is OK! 

Only a few people have told me that Trevor "doesn't even look like he has Down Syndrome!" And honestly I know people are well-meaning, but I hate that comment. I'm pretty sure I know that you think it's some sort of compliment, but really, it's not! People and children all look different! Sure there are some defining physical characteristics and features that come with DS, but it can still vary a bit. Whether or not these physical features are super noticeable to you, Trevor still has DS and it's part of who he is. And I love him the way he is! He's got the sweetest smile, cutest laugh, chubbiest cheeks and legs, and my brown eyes, which are almond-shaped to begin with :)

One last thing... Trevor is not a retard, he's not a "Downs" or "Downs baby," and shouldn't be compared to "normal" children. I don't get really upset when I hear any of those things because I'll be honest- I used to say them, too! So I totally get that unless you're given a big reason to not say things like that, you probably don't realize you do. I promise, I understand haha :) BUT, I've been given little Trevor, and along with it, a realization of how hurtful those terms can be. So I hope you don't get super upset, either, if I hear you say something like those things above, and I see an opportunity to raise awareness for people with disabilities by helping you come up with another way to say what you want. I try to replace the word "normal" with "typical". I NEVER use the word retard anymore, and I don't think it needs a substitute word- it's just unkind. Would you call a child with Cancer a "Cancer kid"? I sure hope not! Cancer doesn't define them, just as DS doesn't define Trevor. Cancer and Down Syndrome can be a big part of someone as they've learned from the struggles that come with them, but it's not who they are. Wen I need to, I refer to Trevor as a baby/child WITH Down Syndrome, and I hope you'll do the same :) 

Sorry for the long post! Just trying to help people see that you don't always know what people are going through, not just in a pregnancy, but at any point in life. There are also kinder ways to say things and refer to people who may be a little different than you. This is a little bit of an email that I received from my oldest brother after emailing him to let him know that Trevor was born early and had Down Syndrome; I love it :)

"I'm sure he'll be a terrific addition to the family.  You and Braxton will be amazing parents, I am certain.  I suspect this fella will provide you, family, and friends with particular delights.    

We all obsess too much about being "normal."  Special is where it's at.  Special is special.  

I'm elated for you." 

Special Lessons

We just finished another amazing General Conference Weekend! Unfortunately I've been feeling pretty terrible the past few days with a nasty cold so I was sleepy for both the morning sessions, but that just means I'll get to watch them in the next couple days :) But there were still so many wonderful messages that I caught. This conference was also pretty special because 3 new apostles were called; Elders Ronald A. Rasband, Gary E. Stevenson, and Dale G. Renlund. I am pretty familiar with Elder Rasband as he has spoken at BYU before, but it's been fun to get to know a little bit more about them. It's really incredible to see how there is a perfect order to everything in God's Church, and He knows exactly who we need at specific times to lead and guide us through these difficult days.

It is currently almost 2 am. Why am I up? A couple reasons haha First, Mr. T woke up around 12:30. So I had to feed him- but keep in mind this is only the 3rd time in his whole 6-mo-old life that's he's woken us up! What a champ. While I was feeding him I scrolled through FB and saw a friend had shared a talk of Elder Rasband's from the Spring 2012 General Conference Session; it's called Special Lessons. This friend has 2 girls with Down Syndrome, so I knew this talk must be good haha :) Trevor had fallen back asleep before I even finished watching the talk, but I just couldn't get it off my mind! So here I am :) You can watch the 9 minute talk or read it, too, here: https://www.lds.org/general-conference/2012/04/special-lessons?lang=eng

This talk is honestly AMAZING and it got me wondering what I though about it when I saw it. Then I realized that this was the last Conference session I watched before I went home from the mission, which would mean I should have notes on it! Score. I went and found my mission study journal and sure enough there it was. After writing down a line from Elder Rasband's talk that said, "Trusting in God's plan is central to our mortality," I had written underneath it, "Oh man, again, thank goodness I have learned how to do this so much better on my mission! I am so much more prepared for the rest of my life, whatever may come."

Ooook. Little did I know what really would come in just a few years! I had no idea that I'd be living life happy as can be, married to one of my Zone Leaders from the mission (yeah... hahaha!) and about to finish my bachelor's degree when all of the sudden I would find out that my unborn baby would have Down Syndrome. If I would have read those notes back in December last year when we got the news, would I really have believed myself? That I was prepared for 'whatever may come?' One thing is for sure- my mission truly did strengthen my testimony of trusting in God's plan (but I also know that I've forgotten the little experiences that taught me that. So, GOAL: go back and read my mission journals so I can remember and learn all over again!).  One of my favorite parts of this talk is a quote from Elder James E. Faust. It says,

"I have a great appreciation for those loving parents who stoically bear and overcome their anguish and heartbreak for a child who was born with or who has developed a serious mental or physical infirmity. This anguish often continues every day, without relief, during the lifetime of the parent or the child. Not infrequently, parents are required to give superhuman nurturing care that never ceases, day or night. Many a mother’s arms and heart have ached years on end, giving comfort and relieving the suffering of her special child.”

I surely felt anguish and heartbreak that night in December after finding out. I felt it several more times thinking about the kind of life my baby would have- would he be able to make friends? Would he be happy? I wondered why God thought I could handle this and what I would do to overcome all the hurdles that lay ahead. Worry set in about what it would mean for our family and his future siblings. But I read this quote now and realize for the rest of my life that, yes, I will most likely grieve over and the trials he'll go through, whether they be physical, mental, or emotional. I will definitely have to stretch myself to accomplish things that seem impossible (like potty training a 6 yr old hahaha! But seriously...). Honestly tho, this is just parenting! All parents worry about their children and grieve over challenges they face and I'll go through that with ALL of my kids; but I'll experience it a little differently with Trevor. 

But I think of how much help and support I'll have and it makes it  seem a little less daunting :) I have Braxton, who will be right there with me as we solve these problems together. I have my amazingly supportive mom, bother, sister and her family, all my in-laws that do so much for us, and wonderful friends who are always there with hugs and smiles! And I have a cheering section on the other side :) I have my dad! Who I'm sure is with his dad, my Grandpa Mark. Elder Faust and my Grandpa Mark were actually good friends, and it's kind of neat to think that maybe he's rooting for me too. There's Trevor Strong and Derek Walker, plus Mr. T's future siblings! But most importantly, I've got Heavenly Father and my Savior. With them, we'll not only get through just fine, but come out a little  stronger in the end. 

I've already learned so much these past 6 months since becoming a mom, and even more so being Trevor's mom. His extra chromosome honestly has brought so much extra happiness into our lives! He may have some physical and mental delays, but to me he is perfect. I can't imagine him being any other way! 

Near the end of his talk, Elder Rasband mentioned how the scripture that states "The worth of souls is great in the sight of God," took on a new meaning with the birth of his grandson. I know that Heavenly Father loves all of his children unconditionally, but I secretly think he hold a special place in his heart for those like Trevor, who He sends to earth under special circumstances ;) 

Gosh I am beyond grateful for the leadership that Christ set up for His church! We are so blessed to have His servants here to guide us, and remind us, as Elder Rasband has reminded me, of all we are capable of with the Lord's help. 

Follow-ups and Fetal Echocardiogram

I continued to see my own doctor on a regular basis, but also went to the MFM office to see a Specialist every 3 weeks. They wanted to make sure everything was still ok and that he was growing normally.

One perk of having to see a specialist all the time is that I always got to see and hear my little man. Normally you don't get that and don't get many pictures, but I got them every 3 weeks :) This was the last time I went the the MFM office before Trevor was born. Now that I see these pic I can totally 100% see my little Trevor! He still makes those faces and loves that tongue (Many children with Down Syndrome have issue with tongue thrust because their muscle tone is much lower than that of a typical child) haha!

Every time we had an appointment things looked good. After a couple of visits and them STILL not being able to get a good view of his heart (he always was in impossible positions when they were trying to look at him!), they decided to send me to get a Fetal Echocardiogram.

I went up to the Primary Children's Hospital Out-Patient clinic a few weeks later to get the echo done. All they did was another ultrasound, but it took forever! That poor girl doing to the ultrasound had to work SO hard to get Trevor to cooperate! He just never wanted to let anyone look at what we needed to see! After over an hour of her tying, she finally gave in because she had most of teh views she needed except for a good view of his aortic arch. The most commonly associated congenital heart defects in Down syndrome are atrioventricular septal defect, tetralogy of Fallot, interrupted aortic arch, ventricular septal defect, and truncus arteriosus. But Trevor was just not going to cooperate so we had to stop. The Cardiologist came in and talked to me for about 30 seconds haha! He asked why I has come in (uh... shouldn't you have that info? haha) and I explained that there was possibility of my baby having Down Syndrome and no one ever got a good view of his heart. He then said that everything looked totally normal! All 4 chambers were there with all the arteries and everything. Although the aortic arch view wasn't perfect, he said he still felt great and that the babe had great heart health :) Woohoo!! We never had to have another one and Trevor came not too long after that!

A 4% Chance

So on December 1st we went to the Maternal Fetal Medicine office to visit with a Specialist. We had NO idea what to expect but I think we were both pretty calm! An ultrasound tech came in and tried to make us feel comfortable and looked around at our baby for quite awhile with the ultrasound equipment. Braxton was able to see and understand what was on the screen because of all the anatomy classes he's taken for his major; so he saw that the lateral ventricles were measuring in the normal range this time- yay! I figured it was smooth sailing from there and waited for the doctor after the ultrasound tech was done.

This next long part is what I posted in a group for Hydrocephalus on babycenter.com when I got home from the appointment- It pretty much explains everything that happened (I've shortened it cuz the original post was sooo long)...

"Hi y'all, I'm new to this group. Just joined a group for nuchal translusency last night but think this will be a good resource for me, too. Here comes a LONG post, and I'm sorry! I'm just feeling a little desperate right now!

Yesterday I went to a specialist about the mild ventriculomegaly. I was elated to find out that his lateral ventircle measurements had gone down a bit to less than 9.5mm. But then the doc pointed out that the Nuchal Fold on his neck looked big... even though it was measuring normal. She then proceeded to tell me that even though the ventricles and Nuchal Translucency measurements are both normal, because they were discovered so close together, that there's a 4% chance he'll have Down Syndrome. .......  uh.... what? She told me about testing (Amniocentesis and Chorionic Villus Sampling), and said we could do it right then- I said NO! She said she assumed we would not terminate, which of course is true. She said she was also concerned about the possibility od Down Syndrome since she didn't know what his heart was like (the sonographer couldn't get any good views because the little guy had his arm across his chest half the time and wouldn't turn around); 50% of babies with DS are born with heart problems that need surgery anywhere from birth to 1 year with more after that, so if she could see his heart was good it would be less of a worry. Then she asked my husband and I what questions we had and just stared at us. I couldn't even speak! I had no idea what questions I SHOULD be asking. All I knew is it felt like she'd just given my baby the kiss of death. I told her I couldn't think of anything, and she apologized that everything was just "so subjective" right now. We made a follow-up apt. for 3 weeks from now and left because we needed time to think and talk about testing and just process everything we'd heard.

Upon getting home, crying all night, and researching, I'm hoping there is nothing wrong. The fact that I'm only 25, don't even have an exact measurement for his Nuchal fold at this point because it was normal, and that his lateral ventricles are now better, gives me hope. My OB found nothing wrong with his heart last week so I'm hoping that it's still good a week later. Am I giving myself false hope? I don't even know if I should be more worried about his vents or the Down Syndrome now... maybe both?

I feel so frustrated that she would tell me I should test for Chromosomal diseases when things are still normal! Of course I'm still worried he's not ok, and obviously we'll love him no matter what... but I'm so confused with the negative information she gave me- not one bit of optimism. Any ideas on why she's so freaked out about the two issues? Thinking he could by hydrocephalic is enough, then she just added Downs right on top of that. Any advice would be most welcome! " 

Oh man, it was all rough. It was so much information all at once, a lot of which I didn't understand. Now that I've been through it all, I can explain that if the Nuchal Translucency (or thickness) measurement is bigger than it should be, it's a marker for Down Syndrome, as well as the Ventriculomegaly. There are other markers such as heart defects, no nasal bone (a physical characteristic of Down Syndrome is a flat nasal bridge), short limbs (femur and humerus bones are not as long as they should be), etc. It was all so much to take in.

Braxton and I didn't cry in the doctor's office, but when we each got in our cars and drove home, the water works began and didn't stop for days. We told my family that night when we got home and went and told Braxton's parents' right after. Their reactions were all so different! My mom's response, was classic Cheryl Boyle :) She said it would all be ok, we're supposed to learn from this, Heavenly Fathe ahs a plan, etc. Braxton's parents said they were SURE it wasn't Down Syndrome and that he would be totally fine, it would all go smoothly, etc. I think we needed both those different reactions :) 

I talked to my OB/GYN soon after. He is just the best :) He said he did't feel like I needed testing unless I wanted peace of mind, but that he felt peaceful about it all. Braxton and I went to the temple shortly after to find some comfort and pray about whether or not we should do any definitive testing. Testing was scary for me because the two most common are pretty invasive. There's also a pretty new blood test that is simple-you just draw mom's blood and they can see from the baby's blood that's present if there a high or low chance of DS- but expensive. The other two tests are invasive, and I was really worried that either of those would harm the baby, although it is rare. But that temple trip was the best temple experience we have ever had! I remember looking at Braxton as we sat in the Celestial room, telling him that I felt peace. I felt like everything would be ok and that I didn't want testing. Brax completely agreed. We walked out feeling good about everything :)