Random Monday on Wednesday

Yeah, I'm a little off :)  My mind is a jumble of thoughts and I can't seem to get anything straight so I'm turning this into one of my Random Mondays posts even if it is Wednesday today.

Little Man told me that he only eats on Wednesdays now.  That should save some money on the grocery bill, right?

Princess will be done with school next week and I'm really looking forward to it.  It'll be so nice to have her home and not have to get up early every morning (unless Little Dude or Star wake me up, of course).  Right now, I'm up until 12:30-1:30 am with Little Dude, then up around 3 am for up to an hour and a half to feed him again, and then up for the day at 6:30 to get Princess ready for school.  I've had three other newborns, but this is a level of exhaustion that I didn't know was possible.  I actually fell asleep while pushing the stroller to the post office last week and many times, I'm so tired that my legs just give out and I have to hang onto something so I won't fall.  Someone recently complained to me that she was tired because she has to get up for work at 7 am four days a week after staying up late the night before.  This same person also told me that she was too tired and crabby to have any sympathy for anyone-this as we're dealing with unknowns and constant medical issues with our high-needs baby.  I was already having one of those days where Little Dude was being very needy and I was stressing about medical bills and his medical problems and the way she said it pretty much sent me over the edge so I spent the next 45 minutes crying.  But that's fine.  I'm not looking for sympathy, I'm looking for understanding and support and it's become pretty clear in the last few months who can be supportive and who can't.  Thankfully, most of my friends and family have been amazing and have done more to support us in so many ways than I could've ever asked for.     

We're loving our new house.  My mother-in-law and sister-in-law unpacked a lot of boxes and rearranged furniture for me while I was staying in the hospital with Little Dude so when I came home it felt like a home instead of a house filled with boxes and furniture. 

My sister feeding Little Dude.  We've found that, as long as he isn't crying too much, the bouncy seat is a good place to feed him as it puts him in the right position and we don't have to balance him and the tube and syringe at the same time.  Plus, he loves the bouncing motion so that can calm him down if he gets restless.

Little Dude has good days and bad days.  On a good day, he won't cry as much, will nap better, and will take more formula by mouth versus by g-tube.  On a bad day, he'll cry all day and will refuse to eat anything by mouth.  But, at least there are a few good days now and that's what's getting me through this right now.  And as a bonus, we finally got him on our insurance!  There was a problem with some paperwork and all of his medical claims were being denied which was a bit stressful for us.

Finally caught a smile on camera!

We're still waiting for a diagnosis for Little Dude.  Some of the genetics testing that he's having done can take months to come back so we know it could be a while.  In the meantime, his main issue is not eating and with the g-tube, we know we can help him get enough food now so we're focusing on that instead of the unknown.  Last week, he was turning blue when he cried so I took him the ER where they did an extensive echo of his heart to be sure there wasn't something else going on besides the PFO heart murmur.  His heart checked out and his lungs also looked clear on the x-ray so we didn't have to be admitted to the hospital this time.  Little Dude has had problems breathing and has had a cough and constant wheezing since he caught a cold at 3 weeks old (which is what put him in the hospital the first time).  Those issues recently got worse and we've had to do nebtreatments to help him breath.  We'll be looking into that more next week when he has his next doctor's appointment.  

A dear friend of mine sent Little Dude a personalized hospital gown for if he has to go back to the hospital.  She's the founder of Gracie's Gowns, an organization that provides special personalized hospital gowns to children with chronic or life-threatening illnesses at no cost to the family.  It's a wonderful organization that blesses many families and if you are able to, I encourage you to support it by sponsoring a gown for a child. 

Little Dude with his gown from Gracie's Gowns

It's taken me almost 2 hours to write this post thanks to the many interruptions from the kiddos and since it's now time to feed Little Dude again, I better call it good enough, no matter how disjointed and poorly written it is  :)

Little Dude-2 Months

We've been home from the hospital since Friday evening, but this is the first chance I've had to sit down and update the blog.  I'm going to make this Little Dude's 2 month update since it's all about him anyways. 

We're still waiting for results from the genetic testing, but Little Dude's MRI of his brain looked good which was good news.  Last Wednesday, he had surgery to have a G Tube placed in his stomach for feeding.  It was a decision that we didn't make lightly, but ultimately it was the best choice for him and for us.  I'm still dealing with guilt over it because I keep thinking that maybe I didn't try hard enough to get him to eat or maybe I'm just not a good enough mom because I can't feed my baby, but then he refuses the bottle for the 4th feeding in a row and I know that we did the right thing.

Because Little Dude has some catching up to do, we're feeding him 83 Ml of formula every 3 hours around the clock at the direction of his dietician.  He gets his weight checked twice a week and we'll re-evaluate his feedings as his weight changes.  As of yesterday, he was up to 9 pounds, 3 ounces which is an amazing weight gain for him.  I start each feeding by offering him the bottle and work with him for 20-30 minutes before feeding him the rest via G Tube.  Usually he'll take under an ounce by mouth and then refuse any more, but every once in a great while, he'll finish almost the whole bottle.   

Little Dude actually cries harder and more frequently now that he did when he was starving.  I keep reminding myself that it's a good sign because it means that he's thriving and has plenty of energy and strength.  But, at the same time, it makes everything so much harder.  He cries for hours every day and cries almost every time I set him down.  Unfortunately, I have to lay him down to connect the tube extension to his G Tube to feed him and if he's crying and kicking, it makes it tricky to get it in.  I spend a lot of time walking around the house with him because that's one of few ways to calm him down and keep him calm. 

I've had quite a few people ask how I can handle all this.  Honestly, I'm not handling it.  I lose my temper with the kids more than I'd like to admit because I'm so stressed and exhausted.  Somedays, I just want to quit or leave for a while, but I can't.  I don't have a choice about all this and that's how I'm handling it.  I have no choice, but to keep going even when I've only slept for 5 hours in the last two days, haven't eaten or gone to the bathroom in 9 hours, and Little Dude has been crying for 6 hours straight. 

I do have a lot of help though.  My wonderful family and friends have helped so much with the other kids, unpacking boxes at our new house, bringing meals over, etc.  I've had to re-read my blog post I wrote about accepting help gracefully because it's hard to come to terms with the fact that I need so much help right now.  My sister and her four kids came to stay this week with us, and while Hubby had his doubts about four extra kids in the house when things are already so hard, it's been such a relief and blessing to have her here.  She's able to take care of meals for the other kids and entertain them while I focus on Little Dude.  And, the best part is that, thanks to an old job she used to have, she's had a lot of experience with G Tubes and is able to feed Little Dude for me sometimes.  No one else in our family knows how to tube feed him (Hubby and his mom are planning to learn, but haven't had the chance to yet) and I get so exhausted being the only one who can take care of him so it's a huge relief to have one other person who I know can do it too.  

My sister reading a story to all the kids except Little Dude.

And to finish off this post, how about some 2 month stats on Little Dude...

Weight and height: As of yesterday (May 12th), he weighed 9 pounds, 3 ounces.

Wearing size: He's still in newborn and 0-3 month clothes.  Most 0-3 month clothes is a little too big for him.   He wears size 1 diapers. 

Likes: Being swaddled and toasty warm.  I got him some of these SwaddleMe blankets which are great because I can keep his arms wrapped up tight while still having access to his G Tube for feedings.  He loves being sang to, snuggling, and his pacifier.  While Little Dude was in the hospital, I got him this elephant that vibrates and plays lullabyes which seems to help him relax sometimes.  

Dislikes: Being put down, having his diaper or clothes changed, eating, being in his carseat.  

No Answers Yet

I'd like to start this post with a heartfelt thank you to all who have been praying for our family and for the sweet comments I've received on the last few blog posts.  I don't have time to reply to each and every one of you right now, but just know that I deeply appreciate your prayers, advice, and encouragement.

I'm home for the first time since last Thursday night and Hubby is up at the hospital with Little Dude.  I'm looking forward to getting a good night's sleep so I can be refreshed to go back to the hospital early tomorrow morning.

Hanging out in the swing at the hospital

Hubby's sister is a doctor and is home for her vacation this week.  The timing could not have been better as she's been spending a lot of time at the hospital with me, helping me give the doctors the information they need and coming up with questions that I need to ask.  Since I'm not a medical professional, it's extremely helpful to have someone around who know what to do in a situation like this.

Little Dude's GI study showed no abnormalities and the ENT consult didn't show anything wrong either.  Two geneticists are consulting on his case now and will be doing tests to check for a genetic syndrome.  Based on the list we've put together of Little Dude's unusual characteristics and personality, they're fairly certain that they will find something.  They're doing blood tests, a urine test, and an ultrasound of his internal organs.   

Sleeping at last!

Here's an overview of his symptoms and characteristics:

• Problems eating and a disinterest in food.
• Dry skin-this runs in our family, but we're still adding it to the list just in case since his is more severe and widespread over his body than the other kids' have ever been.
• Slightly inset wide-spread eyes that have an almond shape.
• Ears that are low-set, rotated slightly, and bigger than average.
• A high arch palate-basically the roof in his mouth is abnormally high.
• An improper suck while feeding.
• Hypersensitivity-the slightest touch or movement often sets off a massive crying fit.
• Arching of the back and neck-Little Dude usually has his back arched and his neck extended in what looks like a very uncomfortable position.
• A hoarse, often high-pitched cry.
• Being extremely hard to calm down and keep calmed down.
• Heart murmur.
• Not meeting developmental milestones-he doesn't smile, laugh, track things with his eyes, put his hands in his mouth, wave his arms and kick when awake (unless he's crying about something), or coo.

On Friday night, Little Dude got an Ng tube put in which, while somewhat scary to me, was also a huge relief because we can finally be sure that he is getting enough to eat.  At each feeding (which is every 3 hours around the clock), we start by offering him a bottle.  Every once in a while, he takes it well, but usually we end up doing most of the feeding via the feeding tube.  While the feeding tube is a good thing right now, it's also the equivalent of putting a band-aid on the real problem.  But the doctors are working hard to come up with a diagnosis for him and then we can determine what the next step will be.  I've come to terms with the fact that we've ruled out all the "quick fixes" for Little Dude's eating problem and this is going to be something he will struggle with for some time.  We don't know if he'll do better when he starts eating solids, but as he'll still need a bottle for the next 10 months or so, we definitely need to come up with a solution in the meantime.  

Prayers Needed

On Wednesday, I took Little Dude in to see the doctor again (third time this week) and he'd lost another ounce despite me working with him almost constantly to try to get him to eat.  She called the pediatricians she's been consulting with on his case and it didn't take long for them all to decide that he needed to be hospitalized so we could figure out what's going on with him.  Hubby was sleeping because he was working the night shift that night so I scrambled for a last-minute babysitter for the three older kids before heading to the Mayo Clinic with Little Dude.

In the past month, we've tried 5 or 6 different bottles and nipples, 3 different formulas, different feeding positions, Zantac, etc. and nothing's helped so far.  He'll start sucking on the bottle, but will quickly pull away and start crying.  We have to calm him down with a pacifier before trying the bottle again, at which point, he'll do the same thing.  This can go on for over an hour.  Eating has become so unpleasant for him that he's to the point where he's showing very little interest in eating and, if we don't constantly push him to eat, he'll easily go 8+ hours without eating.  He's been averaging 9-10 ounces of formula in a 24 hour period which isn't nearly enough for a baby his age and size.  

Little Dude really likes the mobile on his hospital crib

So far, he's got all the doctors stumped.  He's seen GI doctors and an Occupational Therapist and will be seeing an ENT soon as well.  Today, he had a swallow study done which he did really well at and tomorrow he's having a GI study done.  The first night we were there, his nurse and I took turns working with him all night to get him to eat and we actually managed to get a good amount of food in him.  Today though, he hasn't been eating much again no matter how much we try and if he keeps that up, he'll be getting an NG tube.

Our family could really use prayers right now.  We need to figure out what's wrong with Little Dude and get him eating so he can grow.  The three older kids have had a rough two months as well because I have to focus on Little Dude so much that I barely have time to take care of their basic needs let alone spend any quality time with them.  I miss my kids and I hate that I constantly have to find babysitters for them or send them to Grandma's house for a night or two while we're dealing with Little Dude.  Add to all of this the fact that we moved two weeks ago and there's a great deal of stress on all of us.  

Anyways, Hubby is staying at the hospital with Little Dude tonight so I could come home and get some sleep.  It's already 10:30 so it's time to go to bed so I can get up in the morning and be back at the hospital before the doctors go on their rounds.