Sunday, October 9, 2016

Signs you are a mom to two

As most of you know our little family just grew by 1. By 7 pounds and 6 oz to be exact. I know-that doesn't seem like much. But.....if you are a mom to two, then you know that is a very big difference. Its the difference between going to the grocery store and feeling like the whole family can survive on hot pockets that were already in the freezer and pizza that your husband goes to pick up at the store.

So here is a list of things that might indicate that you are or once were a mom to a toddler and a newborn:

You get two showers in one day and feel totally spoiled. Then three days later you realize, that was the last time you took a shower.

You have the urge to punch a swing for not working correctly.

You need every kind of battery there is for all needed baby contraptions that might keep baby happy.

You find yourself stranded on the potty because you were nursing the most demanding baby and didnt want to unlatch, but didnt think about the potty exit.

You let your toddler destroy the house, as long as everyone is safe, fed, and has a clean diaper, you feel extremely successful.

When buying postpartum pants, you ask yourself above or below incision and or/new mom belly-which should be non existent at this point because between nursing the new baby every 1-2 hours and chasing the toddler you never get the chance to eat a proper meal. (unless Daddy is home of course)

When your son pees all over your bed at 3 a.m., you don't even care as long as he goes back to sleep and stays asleep for that massive 1.5 hour window you love and cherish so much.

Your toddler has a red hand during day's out because of your death grip on it.

You have those interestingly placed wet spots on your shirt, or are seen crossing your arms like its freezing outside when its 80 degrees outside because either A) you refuse to wear breastpads today because they are so uncomfortable. or B) you just forgot them because there is a thousand other things you have to pack for these two in diapers and your brain is turning into mush.

You thank God daily for microwaves and freezers.

You realize at about 5 p.m. this is the first time you have peed all day, and during days out you started considering getting depends because there is no possible way you could go to the bathroom with two kids.

Even though you don't have your brows on, and your shirt has leaked breastmilk and spit up on it, plus that dang new mom belly, when you are out and people see you with your two kids under 3, you assume they are jealous because you have so much love pouring out of you and them, and they are both just a dream come true for you in every way. While it is definitely one of the most challenging times of your life in more ways then one, it is also one of the best times of your life, and you know to cherish every tiny moment. Be it when your arms are full of two, when you are fighting off the toddler to help the new little guy get some real tummy time, when you are picking up the emptied wipe case for the third time in one day, or when your husband and you get to share a mere 20 quiet minutes drinking a beer and watching football together.

SO-it is certainly taking some adjusting to our new handsome boy Luca's arrival. But even though there have been a few(okay more then a few) times I have thought I am losing it-there have been a hundred more times I have been thankful and overwhelmed with all the love and blessings!


Thursday, August 4, 2016

Getting run ruled in the first game of a double header

Hello friends! I am so sorry it has been so long since I have posted but I just have not felt any inspiration all summer. Until yesterday.

It has been a very long and very hot summer. Jacob got laid off in November, and we both decided we were too young not to pursue our goals, so he enrolled in school(which by the way-he has made all A's this summer semester) to hopefully have a better career one day to better provide for our little family of three. A few days after that I found out I was pregnant. I am 100% positive most people think we are absolutely crazy for continuing to pursue this dream, and maybe some days we think we are too. But with great sacrifice comes great reward, or so  I have been told...which that little statement reminds me once again that I am 33 weeks pregnant now. What a sacrifice it is, especially in these hot summer months.

This pregnancy has been an absolute dream in some ways compared to my first with Emersyn. When I was pregnant with her, it was complication after complication, and very stressful. The morning sickness, the short cervix, the gestational diabetes, the preterm labor, the IUGR, and her going into distress during said labor. Not to mention all the craziness that happened after she arrived. This time around I did have some seriously intense morning sickness, where I was prescribed medicine to take but during the thick of it, NOTHING helped. However, no short cervix, and no gestational diabetes. Which sort of makes me wonder-since a doctor told me that they really have no idea what a normal pregnancy looks like for me because sometimes when a mommy is pregnant with a baby that has a chromosome abnormality it can throw her pregnancy off. Well so far that seems to be the case. The craziest thing that has happened lately is just the 9 cavities all that sickness has caused me. Like I said-great sacrifice(my teeth) and great reward(handsome little baby boy!).

Now this is one of those moments that you think-God knows whats up. Because I really don't know if I could mentally trudge through all the craziness lately if I couldn't have that milkshake, cookie, or chocolate, or french fries, and well the list of carb rewards goes on and on.

You're probably thinking-its probably because she's pregnant with a toddler and her husband is going back to school is why she feels the need to reward herself with bad food that makes her teeth rot further, and get in trouble at the doctor for gaining 8 pounds in two weeks, and that is partially true. But the big reason is, the last couple of months, for lack of better words and bear with me here, Down syndrome has been kicking my waddling butt.

When you are a mommy or daddy to a child with Down syndrome, you have to have a balance of drive, optimism, and positivity with acceptance, and realistic expectations. Its a VERY fine line.  They both can make you lose your mind when you have bad days. Too far into the optimistic world and doctors and people look at you like you are crazy, so end up thinking to yourself "Am I crazy?" Too far into the world of acceptance and you start to feel like you aren't trying hard enough for your kid and are being a complacent mother.

Which brings me to this speech dilemma. Emersyn's speech has made zero progress in the last year. However, her oral muscle tone HAS improved so much, and her signing, comprehension, and communication has improved 100%. So-what is holding her back? It can't be her hearing because she dances when she hears music...but what if it is? Its very common in kids with DS to need tubes in their ears, so just to leave no stone unturned I had her hearing tested. Low and behold, both ears failed. We did a different test, and her right ear failed again. So, we made a trip to her PCP and got a referral to an ENT. It took two weeks for them to get with me and schedule an appointment that I had no control over when it was-which was a month away. I was a little devastated because in all my nesting-most of it involved getting Emersyn's health and development sorted out before little brother gets here-not the normal cleaning, organizing, and decorating that most mothers go through. To add to the drama of it, when I went to see about starting back up with the new speech therapist at the hospital, I found out insurance will not cover it if she has failed hearing tests-because if she can't hear, she can't talk.

During all these battles, I was also trying to find a dentist who would accept the only insurance option we have during this crazy-sacrificial-hurry-up-and-end-so-we-can-feel-like-we-made-the-right-choice time. The most recommended place told me they didn't, and when I asked for a recommendation for another, the receptionist said to call back in a month, that they might accept it then. So I did-and this different receptionist was taken aback that I would even call there, and that someone would even tell me they might accept that insurance. You could say she was my "favorite" person, especially with these hot, third trimester, momma bear pregnancy hormones surging through me. I did finally find a place-and Emersyn has an appointment during my 34th week of pregnancy.

Just to be clear you are all with me on how my mind is working-the closer we get to 35 weeks the more nervous I am about not getting everything taken care of. Because that is when I went into labor with Emersyn.

To add to the obstacles, we make a 45 min trek to physical therapy every two weeks-and insurance is now starting to say if you don't use the amount of therapies we give you in this certain allotted time, we will no longer provide that many visits in the future. They decide that now in my third trimester in August. When I am going to the dentist every other week, and the OB every other week, and trying to get her hearing sorted out. All at least 45 minutes away. Which of course turns into an all day ordeal with a toddler. Planning around meals and nap times is MADNESS. Adding in the fact that I normally need to pee every 20 minutes-yes, you guessed it, I am withholding fluids against my better judgement because there is no way to reach a bathroom sometimes. Current Mantra:I can do this. I can do this. I can do this.

Which brings me to yesterday. The day my "team" got obliterated.

The day we go to the ENT for some answers and action had finally come. We loaded up at 9:30 for our 1:00 appointment and headed out. We had a few drive through pit stops on the way there-and that put us arriving at the doctor just at 1. We go back to a little room where the audiologist looks in Emersyn's ears and sees wax, she leaves to ask the doctor if he wants to clean them out before she takes the test but he is with a patient and says to go ahead. During the test, it is abundantly clear that Emersyn is not hearing everything she should be. She takes a different test, and it is abundantly clear that she failed it as well. There is no vibration coming from her eardrum on the right side, and barely any on the left. She takes us back up front to the waiting area. We get called back again, and go into a different room, where we wait a while, then a PA comes in and examines Emersyn's ears, nose, and throat. Says she does have some wax and fluid in her tiny tiny ears, and makes mention of something I have never heard of and cant even explain about her throat, and she isn't sure if her palate is low toned. She leaves. The Doctor comes in, and examines her and repeats all the same things the PA said. Then he asks why we are there. We explain her lack of speech led to suspicion, which led to failed tests and TADA now we are here. He says he doesn't really want to do tubes because her ears are so small, and because of her heart defect he isn't sure about putting her to sleep. He asks when the last time we saw cardio was and what she says about anesthesia. We had never discussed it because we had no reason to until now. He also suggests a dentist because Emersyn's teeth look so bad. Then he says lets follow up in a month with another hearing test, and we will clean her ears out then, and until then, put mineral oil drops in her ears every couple of days. Jacob and I were so exhausted and overwhelmed-we just agreed thinking it was a good plan. I made an appointment with him for when I will be 38 WEEKS PREGNANT. Then we drove home.

NUTSHELL:
We were in the car for 6 hours.
We were at his office for 3 hours. 
She has failed 4 hearing tests at this point.
She has 1 word: Dad.
She will be 3 in October.
I am due in 6 weeks.
We had 0 interventions made to improve her hearing.

Yesterday, I was influenced to be in the world of being realistic.

Current thought process:
Does the fact that we have the lowly crappy insurance have anything to do with the fact that we were pushed aside?
If she were a "typical" kid with only one word, would there be more urgency to have an intervention?
Who is to say she wouldn't have more words, should there be an intervention done?I have seen her development change from night to day when she started her thyroid medicine(that I had to fight for) -So i know it is possible.
Is it because she has Down syndrome and people just assume-she is gonna be delayed, so who really cares how fast we move this process along?

So guess what? Today-despite having my team run ruled in the first game of this double header-I am putting on my gear, armor if you will, and I'm gonna go back out there and play as hard as I can. I'm going to call the doctor and advocate for my girl. I will do everything I can to speed this process along to some intervention-even if it is just a good ear cleaning-every little bit helps, because I know if NOTHING is done-then we aren't helping Emersyn hear, or have better speech. AND THAT IS NOT GOOD ENOUGH.

Today, I choose the world of optimism and drive.

You know why? Because even though I was emotional and exhausted-my two year old daughter has still been smiling, dancing, loving, well-behaved, and just an excellent little girl through it all. She deserves the sun, moon, and stars. And God picked me for her momma and I will do everything in my power to do that for her.

Thanks for listening friends. If you want to drop off some cookies I promise I will enjoy them. But I wont promise that after the 420+ miles, 12 hours in the car, 4 fast food meals, 1 therapy session, 1 blood draw on my girl, 1 OB appt, two doctor appointments for my girl, and 102 degree weather that I will have pants on. So consider that a warning !

Sending love to all Emersyn's friends, fans, family, and supporters. You are all so appreciated. 









Monday, March 21, 2016

World Down Syndrome Day 2016

Today is World Down Syndrome Day! A day to celebrate Emersyn and all her fellow Homies with extra Chromies.

It is always quite the day, and the build up is always pretty incredible. Its our third year and there does seem to be a theme happening with our little family on this day, and it reminds me a lot of becoming a parent, and what we decided the general theme with Emersyn was pretty early on- "Expect the Unexpected."

We had big plans today. We planned on taking Emersyn to the Zoo, and watching her eyes light up with all her knowledge and understanding of the animals, and signing to us with pride what the animals were. BUT. The weather had different plans. It was kinda chilly and really windy. Emersyn's tummy hasn't been in top form due to some teething issues, so we had to decide we shouldn't travel that far away just to feel cold and deal with uncomfortable diaper changes in the car.

Last year Emersyn had an extreme tummy bug that left us with little options as well.

Our very first World Down Syndrome Day, was our coming out of sorts. I decided to be brave, and put on some cool socks and take a picture of my girl with the biggest grin and say we were celebrating. We got an extreme amount of support, and I also got about 20 friend requests on facebook that day......which left me with a lot of questions. I ultimately decided regardless of people's motive to be my friend, that in the end Emersyn would teach them many things they didn't know (just like she taught me) and in the end Down syndrome would show her bright and shiny colors, that it is not something to fear, but to celebrate.

You are probably still wondering how do I think this day is like parenthood?

Well, for me, and for most new parents I think, you have all these really big grand plans about what parenthood will be like. I mean, I listen to people who don't have kids talk about what they will and will not do, and all their plans. I internally am grinning like a Cheshire cat thinking "Oh yes I am SO sure it will go right according to plan, you will definitely be organized, organic, and keep your beauty and health regime exactly the same-all while having that super baby that sleeps all night due to your amazing sleep training skills." Hey I guess it COULD happen to someone out there, I have never met them, but it could happen.

When Jacob and I became parents-we were forced into a much bigger world of responsibility and  decision making that there was just no way we could have prepared for it. I read pregnancy books, books about baby's first year, and breastfeeding books. Not one prepared us. Yes, we were scared. There were a few days we were terrified. You could never plan on talking about chemotherapy on day three of your child's life. You don't plan on therapy at 10 weeks old(as I sit here and see her very first assessment on the desk somehow). It was hard-thinking as a mom-that you are not enough for your baby. You need professionals to come in to tell you how to work with your precious baby to help her reach her milestones. You don't plan on people apologizing to you about your gorgeous baby girl, instead of congratulating you.

With all of those things in consideration, it is absolutely incredible to me that something else you could never plan on is all of it feeling completely natural to be Emersyn's mom. I had changed possibly three diapers before Emersyn came along, but I felt like it was what we were born to do. Changing that tiny 4 pound baby's diaper while maneuvering around cords and IV's. Breastfeeding came with all kinds of challenges, and while we didn't get it together til she was 12 weeks old, I knew we would in our own time. We certainly became pros at that, having the most amazing bonding experience while providing her with only the best. Everything about being her mommy and daddy felt completely natural to us, because she was a part of us from the moment we knew she was coming. It was like life started the moment we saw her. We didn't know hardly anything about Down syndrome, accept what society teaches you, which is it is something to be feared. We DID know our daughter. In the end, the feelings of not being enough completely disappeared, because I realized NOBODY knew Emersyn the way Jacob and I did. She took up all the space in our hearts-and the looks of trust and love she gave us right from the beginning told us that we took up all the space in her heart too.

This day wasn't grand like we hoped for-we went to the Cafe for lunch, and the mall for some necessities, and Lowe's for some house repair items. Even though it wasn't grand-we had a great time. When we woke up Emersyn got in bed with us and smothered us with love, and we did the same for her. When we went to all those places-we showed everyone how awesome Emersyn is(and how Down syndrome isn't scary). We told people about what today was-and why it was on March 21st. We ended it with dancing, snacking, and more kisses, snuggles, and hugs.

Parenthood is nothing like I planned it to be. I thank GOD every single day he threw a little extra in my gorgeous girl. The extra snuggles. The extra kisses. The extra laughs. The extra celebrations. They all make parenthood something I can only feel was my true destiny in this life. I am so thankful I have had her to teach me-and all those around her. When people tell us Emersyn is lucky to have us as parents, its hard not to tell them they are crazy because WE are the lucky ones to have her as a daughter!