Hospital Updates from Facebook

I wanted to compile all the hospital updates from Facebook into one place for ease of reference looking back. Thank you all for loving McLaine and following my updates on her.

7/21/13

 

When your child is an aspiration risk and has had chronic vomiting on and off for weeks and you've already been to her nutritionist and pediatrician twice, you drive an hour and a half to the best children's hospital in the area and cross your fingers that someone is able to help. Prayers please!

After IV fluids, zofran, an enema and then promptly vomiting back up the 20 mL of pedialyte with rice cereal that was given to her, McLaine is being admitted. This is actually exactly what I was hoping for by coming to the ER. Hoping GI is going to address her chronic reflux in a more permanent and serious way than they have in the past because I'm not leaving without a solid plan of action for her.

7/22/13

Well, not exactly the news we were hoping for. They feel that McLaine is too unstable to undergo testing and that it might skew the results and cause more trauma on her body which is already failing her right now. So, for now, we just try to boost her calories and get her weight back up when she can tolerate feeds again. They also feel we need to start pursuing testing for a mitochondrial disorder. Not good news...

7/23/13

Alright, this morning we pray that McLaine is able to take nutrition through her G-tube. We will be trialing that here in the next few hours. She has now lost a total of 3 lbs In a child with low weight anyway, this is not good. If she is unable to hold down g-tube feeds, she will be put on total parenteral nutrition (basically, total nutrition run intravenously).

Well, the g-tube feeding didn't go well. She didn't even make it 10 mL of thickened pedialyte run over an hour without spitting it up (that's basically 2 tsp of liquid). They officially said nothing else to eat or drink overnight. Tomorrow I'm planning to ask that they just go ahead and place a J-tube. It's something that's been discussed as a possible next step in the past due to the reflux and at this point, I feel like it's a better long term option and less risky than placing a central line for TPN. As always, continued prayers that my wishes will be accepted by the doctors tomorrow and McLaine will improve.

7/24/13

Well McLaine's temp has dropped to 94 totally unexpectedly and seemingly for no reason. Pray that she is about to regulate her own body temperature and that the measures they are taking bring her back up to normal temp. This seems even more indicative of a mitochondrial disorder and perhaps we can go ahead and get them to begin some testing while we are here inpatient.

Alright, tomorrow McLaine has her GJ tube placed A new chapter and hopefully better digestive and overall health to follow.

7/25/13

Baby girl's temp dropped to around 94 again at the same time as yesterday (around 4 am). She is snuggled up under her warm air blanket and I'm waiting to hear if anesthesiology will still accept her this morning for her procedure after the temperature drop.

 

As far as I know right now, McLaine will be having her GJ tube placement as soon as the transport people get here. Prayers for a safe procedure please.

 

A pre-procedure hair check. we are on our way down.

 

Just want to give a big thank you to everyone for covering my baby in prayer and sending all of your good thoughts. Her GJ placement went beautifully and She came out of anesthesia better than I've ever seen her do before. She's not even lethargic or out of it. Also, the surgeon said the inside of her stomach looked good and, best of all, that her esophagus shows no redness or damage despite such a history of chronic vomiting. I know it's due to the abundance of love and prayers sent her way. God is good

 

More prayers please- McLaine is not holding down the GJ-tube feeds which is really next to impossible... Waiting to hear from the doctor on what happens next.

 

7/26/13

 

So they gave McLaine a break until midnight on her feedings and started her off at 5 mL per hour overnight. This morning they've bumped her up to 10 and so far so good. No spit up yet! They think maybe they were just a little ambitious with the starting rates and McLaine just needed to take it slower. So they are going to increase feeds slower throughout the day today. Thank you for all who prayed for her last night

 

They're getting ready to start McLaine on some TPN feeds through her IV. No central line needed since it should be very temporary just because it's taking so long to increase her feeds and get her on formula. Another big worry off my chest since she's been on fluids only since Sunday.

 

Anyone who knows me knows that I love TV and movies. At this point, even I am "tved out!" I am so stinkin bored in here and I don't even want to watch more TV. In fact, I want to go running or something. I feel like a caged animal and I imagine McLaine must feel the same! So, I will take this moment and be grateful that I am only feeling bored now and not so much stressed now that things have settled down. Clearly, for those of you who have been praying for my peace and strength, it's working! LOL Looks like they will be keeping us through the weekend as they told me to go ahead and cancel a doctor's appointment McLaine was supposed to have Monday morning.

 

7/27/13

 

Sooo supposedly we are getting a genetic consult today! Totally unexpected and awesome news Not sure what will come of it, but being able to talk to a geneticist will be a good thing either way. So, we'll see if they actually come on a Saturday...

In other news, McLaine's temp dropped again last night. I'm personally sure it's due to lack of nutrition and hopefully with the TPN going now that wi...ll stop happening. There is also concern that she's spitting up her own secretions (with her being an aspiration risk, anything coming up is a concern) and she's also spitting up on her medications (which have to be put through the G port of her button). Still slowly increasing her j-tube feeds, which is going very well. So, now, we wait and wait some more Continued prayers for her doctor's wisdom as I feel they've done a good job with her here and I fully trust their plan for her whatever may come.

 

We went on a little walk to the playroom today. McLaine really enjoyed it. The end of every hallway is made of floor to ceiling windows and looks like we are on a beach vacation rather than in a children's hospital lol. I wish it were the former ha

 

So, I know I've become a complete over-sharer since we've been in the hospital and I'm so bored, but I HAD to share this one. The nurse just came in to tell me that a little boy saw McLaine on her walk through the hallways with the IV pole and all the wires. He has been scared to leave his room being connected to all the wires/tubing and seeing McLaine made him ask his mom if he could go out too. So, I may or may not have started crying in front of the nurse. My baby just has a way about her that inspires others and it makes me SO proud!

 

Well, little Claine just can't win this week! They tried a new med (robinul) to try and help her make less saliva/secretions hoping that would help with her spit up and she's allergic to it! Hives all over her face, neck, chest and back. She is one tough chick though and only cried and scratched just a little.

 

7/28/13

 

My little princess was so worn out from the allergic reaction, Benadryl and probably just overall hospital living that she didn't even bat an eye until 10 am. They took vitals several times and two doctors came to see her and she had blood drawn and didn't even stir lol! One of her arms is a little swollen today and she is still struggling a bit with spitting up on her own saliva. Motility drugs w...ere discussed but since she is allergic to erythromycin and reglan is questionable for her due to it's neurological side effects and her already having some neurological components to her overall undiagnosed condition, and domperidone has had limited testing in children, I don't know where we'll end up with that. So, I'm not sure what's going to happen with her still spitting up as she cannot clear her own mouth when it happens and basically drowns on even that small amount she's spitting up. We haven't seen GI yet today, so I'm sure we will discuss more with her.
Feeds are going well. She is up to 50 mL per hour with the goal being 55 and then we'll switch to formula. There is talk of discharge tomorrow after genetics comes to consult, but I'm unsure on that with the spitting up situation we have going on. I'm so ready to be out of her, but I certainly don't want to take her home until we've got all the GI stuff at a manageable and safe level.

 

 

I'm Letting Go

This morning I forgot to set my alarm and I overslept. I found myself dragging my feet while getting everyone ready trying to spend more time with the kids, but alas McLaine can't miss too much summer school and Beckett has to be dropped off by 9. I'm enjoying my new schedule working days, having a weekend, and being the one to tuck my kids in every night. However, I find myself missing them throughout the day. By the time I go to get them in the evening I'm craving them! So mommy guilt was creeping in this morning telling me that someone else is getting all my children's time and I'm getting the leftovers. Worst of all, vice versa: Something else is getting all of my time and my children are getting the leftovers...

I think it's inherent mom nature that we question ourselves when it comes to the care of our kids. Have I made the right choice moving to this schedule? Am I there for my kids enough? Am I letting someone else raise my kids? Do I let them watch too much TV? Am I less of a mom because we don't do daily homemade arts and crafts like I see on Pinterest? Will my kids suffer because I'm not making a wholly organic, clean eating homemade meal for them every day? I could go on and on, but the biggest source of guilt for me revolves around being a single parent. Will my kids be ok even though they're being raised by me alone without a dad in the picture? I'm just one person, and I try really hard to be everything but that's impossible. Trying to do and be everything burns you out rather quickly.

On the way back from dropping McLaine at school, I was listening to The Joy FM. Susan Merrill (director of iMOM.com) was on the program and they were speaking specifically about mommy guilt. (I love how God speaks to us with exactly what we need to hear in all kinds of different ways.) I was meant to hear this today and I wanted to share it.

Susan said that God places us in the lives we live. He plans this life for us because it's where we are meant to be and what we are meant to be doing. He also gives us each unique callings and talents that we are supposed to use to serve Him. Moms today are pressured by society to serve or cater to our children way more than moms in the past did (which is creating a very entitled generation of kids). Clearly as moms we must care for and nurture our children, but we must not ever forget that we serve God first and our families second. There is always a reason why we are in the place we are and if you are heeding God's call, you're in the right place doing the right thing and God will make up the difference. Let go of the guilt.

In this season of my life, I am a single mother to a child with special needs and a very active toddler doing the very best I can on my own. I was placed into this life for a reason. I don't know that reason, but I trust in God. Switching to a day schedule right now is a step in the direction of heeding a call to work with children, families and special needs. I pray that even though I'm not always there and my house is messy and sometimes dinner is what I threw into the microwave and we don't make homemade crafts much and maybe we watch a little too much TV, that my children feel how enormous my love for them is. When they question that, I pray that God "makes up the difference." I'm letting go of the guilt today.

"...we just hope it's healthy!"

Last night I came across this show called "I'm Having Their Baby" about girls who are giving their babies up for adoption. It was basically a cryfest. I think because motherhood and caregiving is my true calling and a huge part of my identity in this life, it just tears my heart out imagining having to make the choice to give your child to someone else.

Anyways, as I'm watching, something one of the adoptive families said really struck me. One of the mothers had a history of addiction to painkillers, and the adoptive parents said they hadn't really wanted to commit until they followed her pregnancy, saw sonograms and were sure the baby was unaffected. I get it. I know many adoptive parents have already been through the heartbreak of infertility, miscarriage, infant loss, stillbirth, you name it. I really do get it, but it bothered me. So, if the baby wasn't "perfect" they didn't want it...

When parents are asked during pregnancy if they want a boy or girl, oftentimes the reply is "Oh it doesn't matter. We just want a healthy baby!" I know this is just something people say and that no one wishes for an "unhealthy" child, but what happens if the child is born less than perfectly healthy? You adapt. I didn't choose this life. Without having lived it and having the honor of being McLaine's mom, I can't say what I would or wouldn't have chosen. I'm no more special or strong than any other parent who loves their children fiercely. I think that's a common misconception-that all mothers of special needs children are somehow different or more than other mothers. While my everyday is a little different and, sure, maybe more difficult in a lot of ways, it doesn't make me more of a mom. Don't tell me you couldn't do this because if you love your child you totally could! If, God forbid, your child had an accident and ended up with special needs, you wouldn't just walk away saying "I can't do this!" Nope, you'd adapt because you love your child. My pastor has said before that "God doesn't call the qualified, he qualifies the called." By all accounts, I was not "qualified" to be a special needs parent. I was not in a really stable place in life, but I was given this child and I rose to the occasion. Another popular sentiment is "God gives special children to special mothers." This is not always true either. Some mothers to special children choose to terminate, some choose adoption and then there are the sad cases of special children growing up in homes where they are not well cared for.  I firmly believe that God has a plan for us all, but the special baby, unfortunately, doesn't always get the special mother, and the special mother isn't always the one who carried and birthed the child.

I suppose I just want to remove the stigma for people. I want people to know that while it's sometimes a hard life, more often it's a good and rewarding life! I want parents facing this life to know that you can do this and you will be happy. I want adoptive parents to not desire only the "perfect" child and maybe consider giving a home to a child with special needs (though I do not judge any who have prayed and know that is not the path for them in their adoption). Overall, I just want people to get how amazing these kids are and how they change your life for the better. I'm definitely one lucky, if not special, mom.

Making All Things New

From Facebook the day of Beckett's 2nd birthday:

 

"I always said I'd never be one of those parents voicing that often felt sentiment "They're growing up too fast!" Having a child with developmental delays gives you a different perspective on growing up. However, here I am with this 2 year old who is so precocious and no longer a baby at all. He knows all of his letters and numbers 1-10 before his second birthday, and I know how amazing that is because of 4 years of personal research on child development lol. So I take it back. Beckett, you're growing up too fast. I love that you're the sweetest and the smartest of the smart, but I kind of want to put a book on your head and pick you up and go cuddle you in the rocking chair like we did when you were a baby."

 

 

 

I told myself I was going to stick to this blog thing, and I'm already neglecting it. I refuse to abandon it, though. My baby boy turned 2 last week. It is incredible to me to see him growing and developing the way he is. I finally understand what it means to other parents when they say that time is flying by too fast. With McLaine, time seemed to pass so slowly as milestone after milestone was missed until I just stopped actively paying attention to them and accepted our own special timeline. In fact, I actually laugh at every well check up when they ask all the questions about what a typical child her age should be doing. Despite the tiny sting, it is sort of funny to have to be asked questions about something that may never be a reality for your child or is at the least, years away from happening.

 

It seems that I always view Beckett through the lens of the experience of being a mother to his sister. Sometimes I wonder if it's that way with all first born children. Do all parents see their experience with their subsequent children through the lens of the first? Or is it that the uniqueness that is having a child with special needs as your first born just makes you see every step of the journey with a second, typical child differently? Maybe I'll never know the answer to that question and I'm ok with that. I wouldn't be who I am without having become a mother to McLaine and then Beckett. I've said before that Beckett was my healer, and that is true. I was really still in so much grief over the child I thought I'd have with McLaine. When Beckett was born healthy and began to display the tendencies of a typical and then a precocious child, it helped me to feel less broken. Like, maybe it wasn't my fault after all. It may sound ridiculous to anyone who doesn't understand this life, but it's very easy to let self-blame sneak in. Now, I'm able to accept and honor each of my children for exactly who they are. My grief has subsided. Along with that, Beckett was my final little push to gaining a relationship with God. Beckett made our family new, and in turn I was made new through a revitalized relationship with Christ.

 

With all that said, here is my wishlist for my son:

 

Beckett,

 

I pray that I am able to do a fraction of what you've done for me, for you.

 

I pray that one day you will fully be able to feel and realize what an amazing and vital addition you are to this family.

 

I pray that having McLaine as your sister forms you into a man who is both tough and sensitive: Tough enough to stand your ground and take up for those who need it and sensitive enough to always think about how your words and actions may affect those around you.

 

I pray that I am able to keep you on the path of the truest source of happiness in this life and eternity: a relationship with God.

I pray that you don't make the same mistakes I did, but if you do, I hope it turns out as wonderful as it has for me.
 

I pray that one day, despite all that you've hopefully learned and taken away from being a part of this family, that you will set out on your own course and be your own man independent of us as well.

 

I pray that you will know true love, laughter, brotherhood, fatherhood and most of all, that you will just be happy.

 

There is so much to love in this life and I just pray that you will soak it all up.

 

Words can't describe what my heart feels for you, my love. You completed us.

 

Love forever,

Mommy

 

 

Beginnings

There couldn't be a more appropriate time to begin a blog about my life's unexpected journey than now. Yesterday marks 4 years since my life was irrevocably changed. 4 years ago I began my unexpected journey. 4 years ago I saw this precious girl for the very first time.

This adorable, pouty face came into my life and made me a mama 4 years ago. Every year on her birthday, I have a little moment where I stop and reflect on the day she was born. It was such a whirlwind. There are things you expect in a birth. Pain and joy are probably the two most common emotions you are certain you will experience and I definitely did. What you don't expect is a complicated labor, your baby not breathing at birth, feeding issues, and ultimately finding out that your child has special needs. Thus began the search for a diagnosis (which we still don't have), the myriad of doctors, therapists, and specialists visits, and my journey to finding myself and a relationship with God again.

I feel like I can't even put into words what a special little girl I've been entrusted with here on Earth. How did I get chosen to care for an angel? Let alone an angel who needs so much help to fly. I am just so thankful that God never took his eyes off of me even when my eyes were so far off of Him. I would have told you I couldn't do this. I would have said that I'm not strong enough. I would have said "I'm already unexpectedly a single mom, and now this too?" The truth is that all along it wasn't my strength I needed to worry about. I serve an amazing God who gives me the strength I need. Little did I know that this child would teach me the most powerful lessons of my life. I had no idea she would help shape me, mold me and mature me into who I was meant to be. I couldn't have known that she would do far, far more for me than I will ever be able to do for her. She's given me my passion, my purpose, and most importantly, my faith back. I can never repay her, but I sure do plan to spend the rest of my life trying.

Here's to my brave, bold, and beautiful little miracle: McLaine Caroline. Thank you for showing me that grace can be found in the unexpected journey.