Oh, this brings me so much joy!

For those of you who think I am so strong, that I am handling all this so well, I’m here to tell you if you were a fly on my wall this weekend, you might think differently.

I pretty much lost it both Saturday and Sunday.

A lot of it is I’m just tired. We are getting up every 4 hours to administer meds and refill formula. But my formerly perfect 12-13 hour a night sleeper’s world has been turned upside down and he’s having trouble falling asleep and staying asleep. The last two nights he’s woken up in the middle of the night screaming- I’ve changed his diaper and he’s gone back to sleep, but he’s restless. And I am too.

The stress has built up as well.

Saturday morning, Grayson pulled his tube out. We called the pediatrician’s office, because they have Saturday hours, but several practices in the Katy area rotate locations. Of course our pediatrician wasn’t on call and we had to call another office. They absolutely refused to put the tube back in, and the receptionist was extremely rude to both Ryan and me on the phone. Ryan actually talked to the doctor on the phone who said he couldn’t do it because we would need a chest x-ray (which ended up being completely untrue). We called several urgent care clinics, because at the hospital they told us an urgent care could put it back in. Nope. So our only other option was to go to the ER, at the tune of $350.

I asked the doctor and nurses in the ER (who were absolutely wonderful) to show me how to insert the tube if it happens again on the weekend. They had me do it, and it was awful. Awful, awful, awful. G was screaming, and I gave him a nosebleed as the tube went down. I pray I never have to do it again, and especially not on my own.

Sunday morning (stupid daylight savings) G woke up at 3:30 am and I just couldn’t get him to stop crying as I changed his diaper. I calmly handed him to Ryan and went and buried myself under the covers. Thankfully, I knew I had reached my limit and avoided losing my temper with my child. I got a few more hours of sleep, but woke up still in a funk. And then Izzy snatched part of my breakfast from my hand and I just lost it. Threw her outside, slammed a few doors, and was just half screaming, half sobbing.

So I’ve now officially had my breakdown. Moving on.

I took G to a new GI doctor this afternoon. I was impressed. A med student and resident listened to my whole story and the doctor asked lots of questions about his medical history, hospitalization, and eating. His plan is we should continue the continuous feeds from the tube for another month, possibly upping the rate on the pump and giving G a 2 hour “break” each day, but feeding him at the end of the break to see if he has any appetite. His opinion is that the gastroparesis (delayed gastric emptying) is probably caused by neurological issues- proving further that everything ties together. We will see him again the week after Thanksgiving to monitor weight gain and eating progress. When I asked about the G-tube surgery, he told me to “slow down”- take this one week at a time and remain optimistic that G will not need it. Although he did think 50/50 chance that he will need it is probably accurate.

So I feel like I’m just surviving day by day right now. I’m equally horrified that G may need surgery and grateful that there is that option if he is unable to get the nourishment he needs through his mouth. I’m excited and nervous about seeing the geneticist next week- excited for answers (but also nervous for answers). I’m terrified G is going to pull the tube out again and I’ll have to put it back in and will put it in wrong and it will go in his lung (yes, this could happen). We bought G a backpack yesterday to hold his pump and tube so we can get out and do things now, which helps. I have incredible friends who have literally saved my sanity the last few weeks. And I know this will get easier. But for now, I just need some SLEEP!

We are settling into a new routine. In some ways, I feel like I’m back in the newborn days, not really knowing what I’m doing and waking up several times a night to “feed”. But, out of respect for all you mommies of newborns (I have a lot of friends who have had babies recently), it’s not that hard.

I’ve figured out the logistics and routines of the tube. And thankfully, as I suspected, all the steps and checks have become no big deal. Really, the tube is more of an annoyance than anything. I can’t just pick up Grayson and carry him around the house unless I want to drag his pole around with us. The tubing is constantly in the way and we have to be really careful not to pull on it when we are holding G. And of course G’s curious little hands want to play with the tube, not to mention his razor sharp teeth that are dying to chew through that delicious plastic. We are becoming reacquainted with masking tape, using copious amounts to tape the tube to the back of his clothing so it’s out of reach.

For all the annoyances, the tube is transforming Grayson before my eyes. I really can’t believe what a change I see in him, both physically and cognitively. He’s plumping up- his tummy is full and round, and his face is filling out. In the last two days, he has been babbling nonstop and carefully studying my mouth as I talk or sing. He’s saying “Mama”- randomly, and not really at me yet, but it’s exciting all the same. He loves Elmo’s voice and we play “Elmo’s Song” a lot and I swear he said “Mo Mo So” (Elmo’s Song) during one of the times we played it today. He’s giggling, smiling and interacting more than he ever has.

It’s amazing what actually having enough food can do, huh?

We’ve only actually left the house twice with the tube since we’ve been home- yesterday to go to the pediatrician for a follow up and today for a walk. This is going to have to change sometime soon- I am going a bit stir crazy staying home all day, every day. I’m disappointed I can’t work outside of home right now, since G obviously can’t go to daycare. And it’s annoying not to be able to just hop in the car to go to the store. We are supposed to be getting a backpack to carry the pump, and once we have that, I’m hoping mobility will be a little bit easier.

Grayson will probably have the NG tube a month or more. In order to avoid surgery to get a G tube, he has to show that he can take enough calories by mouth. We are working hard to get him to eat, and it’s going ok. Most days he eats breakfast really well, but lunch and dinner are hit or miss. I’m trying not to have too much anxiety about it, because I don’t want my anxiety to transfer to him. He needs to see food and eating as positive, so I try and make it fun and pleasant as possible.

So overall, we are doing well. I’m sure the next few weeks and months will bring more adjustment, and possibly tough decisions about Grayson’s care. We are just so grateful that for now, he seems to be making huge improvements!

Sweet, happy little boy

Dear Grayson,

Well, this letter is a week and a half late, but we’ve been a little busy! We celebrated your birthday, and then a week later, we strapped ourselves in for one crazy roller coaster ride! You wouldn’t know by looking at your sweet little grin, but your 13th month has been tough. Tough on you. Tough on your Mommy and Daddy. Tough on everyone who has been praying for you and supporting our family.

But we are making it. We have some answers, and are slowly gathering and piecing together the pieces of the puzzle that is your diagnosis.

And you. You are amazing. I am so overwhelmed with love for you and love every minute of being your mommy. And I’m so glad that you are feeling better and are able to have food in your body to help you grow. I’m sorry that right now you have that annoying tube in your nose and are attached to a pole all day. It won’t last forever.

Someday when you can understand I will tell you about all the people who love you. I don’t think we will ever know the number of people who have said prayers for you, offered to do anything and everything to help, and encouraged your mommy and daddy. We are so blessed.

I love you Grayson Robert. Here’s to a 14th month filled with love, hugs, giggles, yummy food and lots of weight gain!

Love,
Mommy

We got home from the hospital yesterday, and are adjusting (more about this in an upcoming post) but a few days ago it became obvious that Grayson’s rapidly growing locks just weren’t jiving with having strips of tape running across his face. Big chunks of hair were getting caught in the tape, and it was nearly impossible to wash his hair in the bath and keep the tape holding the tube in place from getting wet.

Something needs to be done

Ryan absolutely did NOT want to cut Grayson’s hair up until this point. Our agreement was that when Grayson could sit up on his own, we would take him to the barber shop for his first trim. He’s still not sitting up, but his hair wasn’t waiting. I convinced Ryan that a haircut was “medically necessary” at this point.

I didn’t want to take Grayson to a random barber shop or salon because 1. I didn’t want to have to answer a bunch of questions as to why my 13 month old can’t sit up on his own and has a feeding tube and 2. I didn’t want to travel with the tube/pump/feeding bag just yet- we are just now getting comfortable at home. Thankfully, we are pretty close with one of Ryan’s softball player’s family, and the mom just happens to own a salon. She graciously agreed to come out to our house for G’s first haircut.

Grayson was a champ- he sat in his booster seat and didn’t fuss at all. He was so serious the entire time, but I did manage to get a few grins at the end.

Isn’t he handsome? I can’t get over how cute and how much older he looks (sniff sniff).

Tomorrow we go home!

I am 90% thrilled, 10% terrified.

My baby will be going home with a tube down his nose which will feed him 24 hours a day. His home pump, supplies, and pole were delivered this afternoon, after an extremely stressful morning where for about 2 hours, we were told insurance wasn’t going to cover any of it. But we have a kick-ass doctor who wrote a letter saying if G doesn’t have the the tube at home, he will require multiple hospital stays and could die. I guess you have to be dramatic if you want to get anything done with insurance! So we’re good, covered 100%. Whew.

Grayson is doing really well. He’s already gained a little bit of weight, and is tolerating the constant feeding really well. He did throw up twice today, but very little, and the doctors aren’t concerned. And he’s feeling better too- he’s smiling, giggling, and kicking his little legs and waving his arms as if to say, “Wow! So this is what it feels like for my tummy not to hurt! Woo hoo!”

When I asked the doctor how long she thought he’ll be on the tube, she said at least a month. She said right now, there’s a 50/50 chance that he’ll have to have surgery to place a G-tube, which is a more permanent tube than the NG tube he’s on now. Really it’s up to G- how well he gains weight, and if he’s willing to take the calories he needs by mouth (right now he’s not even close). But we’ll pray that because his tummy feels better and will be emptying at an appropriate rate, his appetite will increase.

I have a lot of anxiety about going home. The NG tube requires a lot of maintenance- I have to syringe out some of his stomach acid and check the pH twice a day, and then push it back in (eww). I have to listen to his belly with a stethoscope and push air into his tummy and listen for a swoosh sound to ensure proper placement. There’s cleaning the bags and tubing, administering meds through the tube, and of course making sure G isn’t pulling on the tube and making it come out.

If the tube comes out, I won’t be putting it back in. I just can’t do it- I’d be too scared I was doing something wrong. I’ll be taking G to the pediatrician and she’ll do it. Let’s just hope it doesn’t come out on the weekend, because then we’ll have to go to an urgent care center.

I’ve been practicing all the steps today, and am feeling pretty confident. But it’s a lot easier in the safe cocoon of the hospital with a nurse looking over my shoulder to make sure I’m doing everything right. It will be a lot different when it’s just me at home. I’m sure in a few days I’ll have the hang of it and I’ll look back at this and wonder why I had so much anxiety. I’ll look forward to that day!

But, at least we are going home. I think 10 days has been quite enough for this “vacation”.

I think this dude’s ready too!

What. A. Day. I woke at 4 am- I know you are surprised I was able to drag myself out of the ultra-luxurious bed vinyl couch I’ve been sleeping on for the past week. My thought was I’d take a quick shower before His Royal Highness woke up for a fun-filled itinerary of Bloodwork! NG Tube insertion! Gastric Emptying Study! Ole!

How is it that kids who are dead asleep sense when their mommies are attempting to spend 3 minutes doing something for themselves and then decide that it is URGENT that they be picked up NOW? Well, I did shower with a soundtrack of screams and then picked him up, and then really, he didn’t want to be put down the rest of the day.

He was miserable. No food or drink allowed due to the gastric emptying test that was supposed to be this morning- it didn’t end up happening until 1:00. On top of that, that mean lady with the needle came and stuck him- again- to draw blood for a thyroid test.

Then came the NG tube insertion. The original plan was to put the tube in after the gastric test, but in order to do the test, he had to drink 2 ounces of the solution, and they were skeptical if he would do that. Do down the nose the tube went. It wasn’t as traumatic as I thought it would be- G screamed through it all, but he’d been screaming all morning anyway. Since it was put in, the tube hasn’t really seemed to bother him at all. We did have to do an X-ray to make sure it went in his tummy and not his lung (um, yes, please make sure) and yep, everything looked good.

The gastric emptying test basically tests how fast his stomach is emptying after food is put in. Grayson hadn’t slept all day and had been crying nonstop, so I was confident he would sleep right through the 90 minute test, especially since I knew he’d be laying down. Well, what I didn’t know was they actually TAPED his little body to the board so he was in a weird little straightjacket and this meant NO THUMB. (Cue horror music). So he cried and cried for about 30 minutes and then settled into a whimper every few minutes just to let me know he was still dissatisfied with the current predicament.

So here’s the exciting part of this crazy day: WE HAVE AN ANSWER. The test showed that yes indeed, his stomach is emptying too slowly. This is probably causing him to feel full most of the day because the food is sitting in his stomach (getting old and stale). Then when he eats more, he gets sick. Also, (and this is just my own hypothesis sitting here thinking about this), maybe this is why he always eats so much better in the morning- the food has had 12-13 hours to empty from his stomach- and then his feeds get worse and worse throughout the day.

Even better news- there is medication to help this problem! We started it tonight, along with continuous feeds through the NG tube (1 oz/hour right now). Hopefully, with the help of the medication, we’ll get that food moving and we will be able to put some weigtht on that baby!

There has been no mention of us going home. We do know we will be here long enough to establish he can tolerate the feeds and that he is gaining weight. We also are waiting on labs and a possible genetics consult. I am happy to be here- the thought of going home with the tube (which we most likely will) is freaking me out right now. Thankfully, we will have home health care when we do, and I spoke to our pediatrician today and she said she would help me reinsert the tube if I need to. Also, I’m dreading being home because we’ll be back to our newborn-like days of being up every 4 hours (to clean the bag). Ugh.

So, our hardest, worst, and best day since we got here. I feel like we’re finally getting somewhere.

Just a quick update because I am too exhausted to write many details:

Grayson is not getting better. His GI and Swallow Study results are normal, but he’s still vomiting every time we give him food. We are doing a calorie count today, and so far our count is abysmal. What is going in is coming up, and most of the time he’s refusing to take the bottle and any solid food altogether.

He will most likely be getting an NG tube (feeding tube through the nose) in the next day or two. It’s a short term solution, but he needs nutrition. He continues to be on IV fluids to stay hydrated, and is taking Prevacid, Zofran, and his seizure medication.

One of the labs taken the other day came back showing his thyroid levels are on the low end of normal. Endocrine has been informed and may be getting involved. We are still hoping to see a geneticist to hopefully get somewhere on determining the root cause of all this.

Through all this, Grayson has been amazing. He’s sleeping a lot, and when he’s awake, he just wants to be held. I know he must be so confused, hungry, and exhausted. But I can still get him to giggle every once in awhile, and he takes the constant beeping, poking, prodding and IV adjustment without too much protest.

Please continue to pray for answers!