Struggling

I’ve been wanting to write this post for over a week now, but any time I’ve had any time to sit and do it, exhaustion wins and I’ve done, well, nothing.

I’m really struggling right now, both physically and emotionally.

Right now I’m sitting in my room listening to Grayson scream his head off in his crib. He’s so tired and desperately needs a nap, but he refuses to lay down and go to sleep. These days, Grayson is a really difficult child. Sleep has been awful. He barely takes naps, and is taking over an hour to fall asleep at night. He wakes up multiple times a night crying. And during the day he cries/whines/fusses off and on all.day.long. It’s really frustrating- on him and me. Most of the time it’s because he’s either tired (because he won’t sleep) or he’s frustrated with the lack of cooperation of his body. I’ve said before- he desperately wants to crawl and he’s so close- but his front just won’t coordinate with the back. So he cries. And I can’t say I blame him, because I would be mad too, but sheesh, listening to it all day gets really old, fast.

Medically, he’s doing pretty well. He hasn’t had any seizures (that I’ve witnessed) in weeks, and he hasn’t been sick. He still throws up relatively frequently, but it’s better than before. I wish we could push his bolus feeds to a higher rate so he could be off the pump more during the day, but I’m grateful that at least he’s not on it 22 hours/day anymore, and he’s still gaining weight. We are STILL waiting on his genetic testing- the supposed 15 week turnaround was up June 23, so it’s been more like 19 weeks now. That’s a long time to wait for results from one vial of blood. I talked to someone Friday who said the testing is actually complete, they are just waiting to sign off on it and release it to our doctors- whatever that means. She said it should be early this week. We’ll see.

I think all this would be easier to handle and more tolerable if I felt better and had more energy. But I feel awful most of the time and have zero energy. When I’m not eating or just ate, I feel either famished or nauseus. I’m still throwing up regularly, and like I said, have no energy to do anything. I have so many things I would love to do, but I’m just so tired.

This pregnancy has been hard. First of all, it was totally unexpected, which has been a challenge to come to terms with. I felt like prior to this summer, we were finally in a place of acceptance and being comfortable with the unexpectedness of having a child with special needs. While Grayson is a lot of work and our path looks different than most, I was in a good place. I had support, knowledge and a plan going forward. The genetic test we are waiting on was supposed to be a big answer as to whether we should even have any more kids. Now, well, we are having another kid not knowing much about our chances of Mito recurring in our family. It’s scary.

With Grayson being so difficult at the moment, I question a lot how this whole thing is going to happen in February. And I know it will, because we don’t have a choice. We will make it work- I just wish I knew exactly how so I didn’t have to worry about it. I’m upset that this pregnancy has already taken so much time and energy away from Grayson, and I worry how much more time a new baby will take away from him. I’ve heard from so many people what a gift a sibling will be for him, and how he/she will probably motivate him in his progress, but I know it’s still going to be hard at first. Really hard.

All that being said, I am excited about this baby. Although I am definitely NOT ready for the arrival yet, I know that meeting him/her for the first time will be amazing and he/she will be the perfect addition to our family. I told my mom I feel horrible for having some negative emotions about such a blessing, but she said just because something is a blessing doesn’t mean it isn’t hard.

In a few weeks, Grayson starts school and we will have to be in more of a routine than we have this summer. It will be a very good thing. I know hard times like this don’t last forever, and things will get better. There are so many good things to look forward to- I’m just trying to push through and survive this season.

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22 Months!

Dear Grayson,

You turned 22 months a few days ago- 22 months on the 22nd and 2 months from being 2- whew! I really can’t believe you are so close to your second birthday.

This past month was pretty challenging for several reasons. One, I was away from you for basically 10 days. Although you did great with your daddy and grandparents, I know it was tough on both of us. I am so glad that we are back under the same roof! You are still working really hard on a lot of skills, which is great, but not mastering them yet is causing you a lot of frustration. It makes me so sad when you burst into tears when your body just won’t do what you want it to. You try so hard and keep trying despite your struggles- I am so proud of you.

I am so sorry I have been so sick and tired these past few weeks. We talk to you all the time about being a big brother, but I know this part of it is no fun (for either of us). I am looking forward to having a lot more energy for you and not having to interrupt playtime to go throw up. Thankfully, having your nurse start happened at the perfect time- I am getting to rest and know you are well taken care of.

Sleep has become quite the issue with you the past few weeks. Naps have become short and sometimes non-existent, resulting in you being one grumpy baby by 5:30. You are practically asleep, contentedly sucking your thumb while we put your jammies on, but as soon as we put you in bed, you start screaming and climbing up the crib. We are having to sort of let you cry it out, because I’ve decided you may be a tad bit manipulating, little guy.

You start school in a few weeks- I am SO excited for you! I just know you are going to learn so many new things and love your teachers and new friends. Although school starting for you is exciting, we will be sad that Daddy has to start school too. We will especially miss him being here for bath and bedtime- I’ve gotten spoiled with him getting your tube ready, dressing the top half of you, and brushing your hair before we put you in your crib.

I love you so much sweet boy- you are my sunshine.

Love,
Mommy

Finally Home

After ten days of traveling, I’m finally home for good. I’ve barely seen my little guy in ten days, and it was so good to cuddle him all afternoon today. I’ve missed my family being in one place, I’ve missed our routine and schedule, I’ve missed my friends, I’ve missed my blog, and I’ve missed my bed. I’m so glad to be home.

I was in Charlotte last Wednesday through Monday. Although not a vacation, it was really nice to be in one of my favorite cities surrounded by family. My grandfather’s memorial service was incredibly moving and special- as a church organist for 53 years, he knew exactly what music and scripture he wanted, so it was personal and perfect. The church was packed, and the line to talk to my grandmother after the service was almost out the door- just shows what an impact my Grandaddy had on earth. He will surely be missed by so many.

Unfortunately, my high-drama fetus did not give me a break while I was on the trip. By some miracle, I didn’t throw up on the actual flight to NC, but didn’t make it to baggage claim- ugh. I felt pretty crappy the rest of the trip, but rested frequently and ate everything in site to try and keep the nausea at bay.

Ryan and Grayson picked me up at the airport on Monday. Ryan did such a good job taking care of G and I was glad they got a lot of bonding time. I loved G’s reaction when he saw me- he just laughed and laughed- so cute. We were home for one day (Tuesday) but instead of getting to spend the day with G, I spent the day hugging the toilet and in bed, so sick. I am SO OVER the first trimester (12 weeks tomorrow, thank goodness!). Thankfully, Dayo, our nurse, was here so Grayson was well taken care of.

Wednesday, Ryan and I left for an already-scheduled mini-vacay to the Texas Hill Country. We stayed 3 nights in a B&B and ate good food, watched several movies, outlet shopped, and just relaxed. It was great to get away, but by today I was missing Grayson so much and was feeling so guilty for the length of time I’ve been away.

It’s so good to be home and under the same roof as everyone in my little family. This coming week is Ryan’s last week of summer vacation before he goes back to work, and I’m planning to spend as much time as possible with both my boys.

Busy Week Ahead

I am leaving for North Carolina on Wednesday. Sadly, I missed saying goodbye to my grandfather one last time; he passed away peacefully in Saturday evening. I am trying not to feel guilty or upset that I wasn’t there last week but rather focus on remembering the wonderful memories I have of a man who loved the Lord, his family, classical music, and telling (sometimes inappropriate) jokes.

There is, of course, lots to do before Wednesday. I am going by myself; Grayson will stay home with Ryan and his nurse. Ryan is completely capable and I know things will be great at home, but I need to write instructions on stuff that I always handle- medication amounts and times, feeding times, therapy appointments, etc. I also need to find something to wear to the funeral and wash the clothes I’m taking. Have I done any of the above? No.

I did take care of one thing on my list of to-dos today- Grayson and I both got much needed haircuts. I’d been trying to grow my hair long for awhile, and I always liked how it looked right after I blowdried and straightened it, but 5 minutes later, not so much. So I got a few inches cut off and some layers- much better. Grayson of course looks A.DOR.A.BLE every time he gets his hair cut- makes me want to take him every 2-3 weeks!

Tomorrow, Grayson has a GI appointment in the morning and I have an OB appointment in the afternoon. I am anxious to talk to the GI because although bolus feeds are going relatively well (currently we are doing three 1.5 hour feeds during the day and continuous at night), he is still vomiting more frequently than I would like and is gagging and choking on his saliva a lot. And we just cannot push the rate any faster than we are right now or he can’t keep the feed down. Ideally, we would like a feed to last 20-30 minutes, a far cry from 1.5 hours for the same volume. He is not on any medication right now for his delayed gastric emptying, and I’m wondering if the GI will want us to restart those meds. Oral feedings are still going pretty well- he hasn’t eaten as good as the burrito from the other day, but continues to taste most things we offer him.

Pregnancy-wise, I am starting to feel a little bit better- I still am really nauseous and pukey most mornings and evenings, but I’ve been ok during the day for the most part. The craziest thing is I am already “showing”- if you count a lumpy, gross stomach sticking out as showing. This happened literally overnight. I am trying to embrace the fact that I feel huge and gross right now (I know, it’s only the beginning), but somehow my body changing isn’t nearly as fun and exciting the second time around. I am praying for a nice, boring, routine doctors appointment tomorrow afternoon with a healthy heartbeat! We gave the nurse the day off tomorrow since we are going to the doctor, but Ryan has to be at work at the time of my appointment, so I’ll have to take Grayson with me. Another reason I need a boring, routine appointment- I want it to be quick before Mr. Drama has a chance to be up to any of his antics!

Burrito Boy

Doing a Happy Dance over here tonight- this little dude ATE 10 BITES OF BURRITO when he and I went on a Grayson-Mommy dinner date! He actually ate it, not just tasted and spit it out like he usually does. This is more than he’s eaten in months- I am so proud.

I texted this picture to my mom and her response: Who eats burritos but not ice cream??? Ha ha!

I guess we’re going to have to make the sacrifice and go for Mexican more often now. (Boy after my own heart).

One thing about having a kid who doesn’t eat is I never think to bring a bib anywhere. Oops.

Thankfully (??) Izzy is willing to clean up after her brother, although I did find rice in his diaper and beans stuck to his Mic-Key button when I went to give him his bath.

Great way to end the day- I’m still smiling.

Life Updates

Thank you so much for your support and congratulations on our big news. I am 9 weeks and due February 3 (and obviously not good at all at keeping a secret for very long). We saw a strong heartbeat at 6 weeks and if horrible fatigue, hunger, nausea and vomiting are any indication of a healthy baby, this little one is doing just fine so far! Seriously, this baby is nothing but drama at the moment…shows up unexpectedly, making his momma sick and tired all day, oy. But this little Drama Queen/King is already so very loved and wanted. We are excited.

I have so much I want to write about, but almost every night after I get G in bed, I head to bed myself, hoping sleep will take away my miserable nausea for a few hours. The timing of getting MDCP and Medicaid could not have been more perfect- Grayson’s nurse started last Monday, and has been a lifesaver. She is here every day from 8-4 and takes such good care of him. It was a little awkward for a few days, because I’m still the mom, and want to do all the things, and I think we both were trying to figure out who does what, when. But now I’ve become much more relaxed about it, and it has been so nice to be able to lay down when I’m feeling awful, go to work for a few hours, or just run an errand without having to strap G in a car when it’s 105 degrees outside. Plus, when the baby comes, I know I will appreciate the extra set of hands more than I can imagine right now.

Update on Grayson: he is thisclose to crawling. This is awesome, fantastic, etc. but the downside is it’s causing him a lot of frustration. He gets in the position and gets “stuck” and then starts to whine. Oh the whining. Give me some earplugs! This has also caused big issues with his sleeping. My little bedtime rockstar who would fall right to sleep the second I put him in bed is gone. Now, he wants to practice his crawling in his crib. He grabs the railings and pulls himself up, but then falls back and hits his head, and of course, starts screaming. Or, he gets himself in predicaments like this: (this was actually just a few minutes ago, and now he’s screaming his head off again, sigh).

We were supposed to get G’s genetic testing results back over a week ago, but are still waiting patiently. Although the test results won’t be able to tell us if we’ll have another Mito baby, hopefully they will give us some direction and we can get some genetic counseling to see what our percent chance is. There’s no prenatal testing for Mito that I know of, but once we know better what we’re dealing with with Grayson, we can be better prepared should this baby carry the same genetic defect. We are of course praying for a healthy, disease-free baby, but if we have another one with Mito, we’ll be prepared and know what to look for much earlier this time!

This is a sad time for my extended family; my Grandaddy in North Carolina is now in hospice care. I still have all 4 of my grandparents, and this is so hard. My mom and siblings are in Charlotte this week and I am planning to go sometime next week to spend some time with him and my grandmother. I am so, so blessed to have had so many wonderful years knowing my grandfather and have so many precious memories- saying goodbye is going to be bittersweet. I know he will soon be in Heaven with a new body that’s not tired or sick and will be playing the organ for Jesus, but we sure will miss him on Earth.

So there’s my update- we are surviving, if not thriving around here right now. I’m hoping I’ll start to feel better in the next coming weeks and get back to regular blogging!