Guys this is OLD NEWS but I’m an Auntie again to a teeny tiny baby who is now 1 week old! My sister KAYLA had a baby! Meet Jasper Jerald Pins:
This little nugget is honestly the tiniest human I’ve met in my entire life! So tiny mom and I had to go buy preemie clothes at Walmart before we went to meet him!
Kayla had a rough delivery. We were so so relieved that everyone turned out okay. You can read more about that on my mom’s blog here:
I was so excited to put my new iPhone 11 to the test and play birth photographer. I think the pictures turned out GREAT!
Kayla had to have a c-section and I did with Gannon as well. Unless you’ve gone through a c-section yourself I don’t think you can really understand all of the emotions and pain that comes along with it. Not more or less than vaginal birth, but it’s definitely different having gone through both deliveries.
Now Jasper is a week old! Here’s a picture Kayla shared! I can’t wait to watch him grow up and watch Kayla and Spencer grow into parents!
That’s all I have for today! Check back for a blog post tomorrow morning at 0530!
We tried to beat the ice storm on Tuesday. After I got off work at 7 pm, we drove the 2 hours down to Iowa City and got a hotel. Thank goodness we did (thanks for the suggestion mom) because the ice was THICK and many of the school districts were closed because of it.
Gannon’s appointment yesterday was okay. We don’t “love” our GI doctor.
I was hoping for “the answer” which wasn’t fair. That’s not reasonable to expect right now.
University of Iowa has done what they can. I had the conversation with our GI doctor. I said I don’t feel like we’ve been taken seriously. She got defensive and said “Well I’ve referred you to urology and surgery and more imaging isn’t helpful right now.” Which is true.
I expected the University of Iowa to be somewhere we could be officially diagnosed but they don’t have a motility clinic and they are also limited. All they can do is refer us on.
Gannon’s past two weeks have been complicated by an upper respiratory virus and possibly a stomach bug. It’s hard to say what is causing his vomiting. Maybe it’s related to his belly, maybe it is something different entirely, maybes it’s also related to a virus. All I know is Gannnon does better on formula than with real food. She dismissed that and told us to feed him whatever.
I asked how we can relieve his distention now. She said there isn’t much we can do. That’s when I asked about a G tube or a J tube (a surgically placed tube that goes directly into the bowels or stomach to relieve air and possibly deliver feedings). She said in her experience it doesn’t make much of a difference in kids like this. I have a feeling the motility clinic will say differently but again, we aren’t at the motility clinic.
That’s when I told her that his distention is a concern I need addressed before we leave today. She offered a rectal catheter but she said “I don’t think this will work or make much of a difference.”
The catheter is inserted into the rectum. It has perforations in the tubing to let gas out. Within five minutes, the room smelled like gas and Gannon had a noticeable decrease in his abdominal distention.
Our GI doctor said that the rectal catheter works well with treating Hershprungs kiddos and because it is working well for Gannon that leads her to believe this could be the chronic intestinal pseudo obstruction (CIPO). His distended bladder is also a sign of CIPO. Also his redundant or “extra” colon is also a sign of CIPO.
Just a refresher – they have tested Gannon over and over again for Hershprungs disease. That would mean there are NO nerves in the bowels/colon. That was what we were admitted for at St Marys. A biopsy ruled that out. CIPO is when the nerves or the bowel/colon don’t work. Manometry can test for that.
She also noted his liver is larger than normal on the X-ray. I’m typing this as we are waiting for an ultrasound of his liver. She said maybe this could be contributing to his distention.
I asked about genetic testing. She said the motility clinic would be able to tell us if that is a good option for Gannon.
We are planning on also doing an EGD (upper scope – like a colonoscopy only looking at his esophagus and stomach) when he has his testicle surgery in February. This will look at his upper GI tract and test for abnormalities. They may take a few biopsies then too.
Craig came with to this appointment which was so great. I like to have a second set of ears and I feel more confident being a stronger advocate for Gannon when I have someone with me.
I may come off as “fierce” or “strong” but when it came time to actually stand up to his GI doctor and say “I feel like we aren’t being taken seriously” it came out as “I just don’t know. I just….I don’t know…I feel like maybe we should be doing more….I don’t know.”
It’s hard. I don’t know as much as her. I really don’t. But I know Gannon. And I know this isn’t normal.
And I know what I’ve been reading on my CIPO support group. They are all an expert on this condition. They know the questions to ask and what helps and what doesn’t. They give me the courage to advocate.
I’m finishing this post as we are on our way home. The ultrasound took FOREVER. They kept coming back to his liver over and over again. Then someone else came in and took more pictures. It honestly took about an hour.
Gannon was so so so good considering how long it took! The lights on the ceiling helped too.
Milawakee is reviewing his case on Tuesday. I’ve been emailing Carly at the GI Access center there. She’s working on getting prior authorization from insurance and accepting the referral as well. She is one of those “behind the scenes” who holds a department together and I can tell she knows her stuff!
It’s a guessing game as to how long it will take to get into Milwaukee. Gannon’s doctor said she’s referred patients to Nationwide in Columbus Ohio and it’s taken 4 months to actually get in and be scheduled. Columbus’s motility program is also highly recommended but that’s about 10 hours from us vs. just 4 hours. Mayo (where we started this whole mess) is only 1.5 hours away but we weren’t impressed with them and they can’t do the full tract manometry that Gannon needs. So Milwaukee it is.
That’s all I know for now. Thanks for your well wishes. Gannon appreciates it too!
P.S. Gannon has always had “floaters” or “debris” in his bladder along with a distended bladder. The MD who finished up Gannon’s ultrasound noted that again today and showed them to us. Usually it is indicative of an infection but Gannon has never had one. Of course that never made it on the ultrasound report. All that was noted on the ultrasound of his organs was a “mildly prominent lover and spleen.” Whatever that means.
So many of you have been concerned about Gannon. Thursday (2 days ago) was the very first day he DIDN’T THROW UP!
JUST IN TIME FOR CRAIG AND CARVER AND I to CATCH HIS STOMACH FLU! UGH! We were all laying around feeling crappy and Gannon is so happy and giggly and bouncing off the walls.
As soon as Craig came home the other night the boys swarmed him wanting to know everything about his day as he took his boots and overalls off. It was so cute!
We watched my mom’s new puppy Rosie the other day for a few hours. She is CUTE but she is a HANDFUL! Betsy (our beagle) is NOT a fan and as you can see, even Carver needed a break and couldn’t match her energy. If you sit on the floor at all she is all over you!
Where one boy goes, the other follows. These two are interacting and playing together more and more every day. Carver is still just a little too aggressive with his love for Gannon. Gannon will take toys and Carver will knock him down. He doesn’t understand he is just a baby and doesn’t know any better. *sigh* someday maybe they will get along!
Carver is OBSESSED with farming. Here he is playing “implement” and lining up all of his equipment he has for sale. Two seconds later (after this picture) Gannon goes in for the combine and they start fighting again…
Craig and I are trying to make time together a priority. Several mornings we get up early before the boys and have a nice chat while he gets ready for work which I’ve loved. I’m kicking him out of the house this weekend to go hang out with a friend back home.
I snapped this picture so I could blog about our mornings together. He is in the middle of asking “why are you taking my picture?” HA!
I’m so proud of Craig. He is down to 1-2 cigarettes a DAY! That is cut all the way back from 1-2 PACKS a day! He attributes his success to his recent career change. He says his new job is far less stressful and only has a 3 minute commute and less time to smoke! However his sweet tooth is OUT OF CONTROL. With less smoking he hardly drinks alcohol at all anymore. He drinks an insane amount of Ruby Red Squirt but hey! We are getting there!
I got to hang out with Georgia and Gannon the other night! We call them the cousin twins – born one week apart!
Well friends, that was our past week! You’re reading this on a Saturday which means I have Sunday off from blog land! If you need to catch up on this past week’s blog posts, check them out here! Let me know in the comments which one was your favorite!
We didn’t think much of it. Sometimes he finds a little piece of fuzz on the floor before we can catch him and he puts it in his mouth and it gags him enough so he throws up.
Mom messaged me while I was at work on Monday. Gannon threw up again. She had to change the sheets and his outfit. No fever, he was acting normal but mom wanted to let me know.
On Tuesday Gannon threw up twice. Now this was getting kind of weird. He had some respiratory junk and a cough so maybe that had something to do with it. No one else in the house was sick. He would act totally normal in between throwing up.
When Craig and I went out to eat on NYE he threw up all over himself at my mom’s house. When we got him home he threw up again.
I went to work on Thursday but I cautioned Craig to keep him hydrated and clear liquids through the night. Not to mention he hadn’t had a bowel movement in a few days either.
All night at work I just worried about him. I ran through every scenario in my mind and remembered all of his issues from when he was hospitalized and was convinced he had some kind of bowel obstruction.
I ended up calling down to the University of Iowa and spoke with a specialist on call from Gannon’s GI team. They told me to take him to the ER right away and that he needed fluids.
I brushed it off. No, he doesn’t need IV fluids. He’ll be fine. He looked fine when I left. He was still having wet diapers. He was still crying tears. That gastroenterologist didn’t know what they are talking about.
I ended up clocking out a little early after working 12 hour overnight shift so I could go home and see him and assess him.
I got home and Gannon was LETHARGIC like I’d never seen him before. In the 15 minutes I got home he had already thrown up. His eyes were open but he was limp. He looked miserable.
I didn’t even hesitate – I knew something wasn’t right. I took him right back to the ER. I was so confused though, he was acting dehydrated but he still was having wet diapers. I didn’t even know what could possibly be wrong.
I called my mom on the way there and she said, “Kalissa. You don’t have to have him diagnosed. You just have to bring him. Let them do their job.” I hate not knowing. I hate when the pieces don’t fit. I usually have some kind of inkling of what is wrong before I bring the kids in but with Gannon, I had nothing.
Gannon hardly flinched when they started the IV. He just melted into me. He slept, he slept hard, in between assessments and medications and tests.
After while they came in and switched his fluids over. They said his blood sugar was 50. Normal is usually 70 – 110. That’s pretty low.
Before I could even think “Oh my gosh does he have diabetes??” Fell out of my mouth. Which wouldn’t make any sense at all. When diabetics get sick their blood sugar goes UP not down.
But when I’m the one with the sick kid, I can’t think straight. It’s truly incredible how much my nursing instinct completely leaves me when it is my kid who is sick. I’ll call my mom and ask her what I should do for a fever or ask for medical advice. She finds that hilarious considering I’m an ER nurse.
Hour by hour he slowly started perking up. We were very close to being admitted for continuous fluids. His cough started getting worse and worse but he was perking up.
He ended up waking up enough to get discharged. He did throw up again at home that day and the next day. My mom was so sweet she let me sleep at her house with the boys.
I actually just got off the phone with mom and she said he just threw up twice again. UGH! Back to the doctor tomorrow morning. That will be 8 days in a row of vomiting!
I literally did nothing today. I mean it. I laid in my bed and watched hooked on phonics with Carver and snuggled Gannon on the couch. Craig didn’t have to work much so he was home and played video games. I took a nap in the morning AND in the afternoon. I. Did. Nothing.
Except bake a ham.
So when 5 p.m. came around it was a rude awakening when no one had done the laundry or finished making supper and I hadn’t showered and blah blah blah. I was BEHIND and I had to work overnights! The house was a disaster.
I quick threw some side dishes in the oven including green bean cassorole (Craig’s favorite) and look at what I snuck into it!
I’m working harder on incorporating veggies in our meals as much as possible so when I found this at WalMart I was so pumped. Essentially, I mixed one can of the creamy cauliflower with 2 cans of green beans and those crunchy onions. Craig said it tasted AMAZING and he couldn’t even tell a difference.
Surprisingly, I was able to find an amazon link… only if you want to buy 12! HA! https://amzn.to/2SRBW5k
I run upstairs and quick shower then I run back downstairs and throw the food on the table, get everyone scooped up, finally sit down to eat and then I heard the sound no one wants to hear with a mouth full of food…
Gannon threw up all over himself. UGH!
While I was already running late for work and now unable to enjoy my supper like a normal person at a table with their family and not driving in the car on the way to work, I grabbed Gannon, stripped him down and threw him in the tub.
Soon enough Carver gave up on eating too and hopped in the tub. A few moments later I got a tap on the shoulder.
Craig brought me my plate and brought his plate in the bathroom too. We sat on the floor and finished our supper together. It was so sweet. He reassured me it wouldn’t always be this crazy with two little ones. We watched the boys splash around in the tub.
As you can see I clearly have no shame. I’m still in my towel and the boys are in their birthday suits. Craig was the one who actually suggested the picture which was also sweet.
Sweet romantic moments don’t come in candle lit restaurants. They apparently come while bonding over cleaning vomit out of your child’s hair.
These two boys are growing more and more every day!
Carver is almost three and a half now and Gannon is almost 1! Carver came and informed me the other day that he no longer wanted to be three and he wanted to be “nothing.”
Carver got Woody from Toy story for Christmas and then promptly informed me he wanted a Buzz Light Year. So we went to Walmart and he used his money he got from Auntie Kayla for Christmas and Carver made his first ever purchase with his own money and bought Buzz Light Year.
The other day it got too quiet – moms and grandmas – you know what I mean – it got way to quiet and I couldn’t find the boys…until I opened the bathroom door and found this:
Carver had drug Gannon into the bathroom. I asked what they were doing and Carver said “We’re just playing!” I said what are you playing and he said “Leave us on our own mom, we are just playing!”
Here they were cuddling on the couch. Carver is sometimes too aggressive with Gannon and hugs too tight. We’re working on that.
Gannon is just our constant source of joy in our life right now. This boy is always happy, always content, always smiling, always happy to be on his own or to get tons of attention, just the most content baby I’ve ever met in my life. There are very few things he doesn’t like.
Getting his face washed.
Getting his nose wiped.
Getting lotion on after a bath.
Getting put in his car seat.
Gannon was not doing well with transitioning into solid foods. His cousin Georgia could out eat him any day! Then, just like that, Gannon eats EVERYTHING!!!
Andd if you need Carver he will probably be farming and after that he will be farming until he needs to farm again!
See you again tomorrow at 5:30 for another blog post!