A Bittersweet End

After 11 1/2 months I am done breastfeeding Caedmon. I fought so hard to feed Caedmon. We dealt with tongue tie, lip tie, and a recessed chin at birth that made it difficult for him to open his mouth wide enough. We went through months of horrible reflux symptoms and feedings, hours of holding him upright after eating, and a feeding aversion due to his pain. We dealt with a milk/soy protein intolerance that led to both of us being 100% milk and soy free from 4 1/2 months on (Caedmon is still not approved to try either milk or soy at this point). We worked through supply issues, dysphasia, and oral motor weakness. For months upon months I set alarms in the middle of the night to force extra feedings and then pumped 4 times a day after feedings to get more milk to supplement with. Yet even with all the work he couldn't/wouldn't take enough and was labeled as failure to thrive. I took great pride in breastfeeding Graesen for 19 months without a drop of formula, but with Caedmon that just wasn't a possibility. He was starving because his issues went far beyond anything I could fix or control. I kept breastfeeding him while he had a feeding tube so that he wouldn't lose his oral skills. We continued even when he finally started accepting formula orally, because I wanted him to have the comfort, bonding, and antibodies. However, the last several weeks he has begun to fight breastfeeding. He no longer asked for it and when I offered he would often fight it and refuse. With each day he fought it more. So today after so many months of trying to make it work, I decided we were done. I ate chocolate with dairy in it for the first time since September and fought back tears.

It wasn't as good as I thought it would be.  

Raising Caedmon has challenged and changed me a lot. I've had to learn to let go of my expectations. I've learned to be calm even when my baby is pinned down by nurses for one medical procedure or another and screaming for me. I've learned when it's ok to be a mama bear and fight for my son against a dr who refused to listen (and quite frankly was negligent and a danger to my child). I learned to dive completely into restrictive diets and therapies and constant appointments. It has been an extremely challenging year, but he is worth it. 

 

11 months old

I am having the hardest time coming to terms with the fact that in one short month my baby will be a year old.  This has been a really hard year, but so good and sweet at the same time.  We had so many fears about Caedmon's health this year, so his birthday feels like more than just a birthday.  It's a celebration for surviving all the struggles of the year.  A lot of people don't realize quite how bad it was at times.  We have videos of Caedmon screaming to show the doctors, because we felt like no one was listening.  He screamed in a way I've never seen a baby scream.  His voice would be hoarse and his little body stiff and arched for hours every day.  There were times of day that he did better, but by night he was miserable.  I think that this is the reason it's so bittersweet to know he's almost one. I'm so glad we made it.  Yet in some ways, it feels like a blur of tears and doctor appointments and calculated feedings, so much so that I feel like I didn't have enough time to enjoy him as a tiny baby.  But like it or not, he's 11 months old now and time isn't slowing down.

• 18 lbs 10 oz (17%) HUGE growth spurt this month
• 30.5 in (90%)
• Wears 9 month, 12 month, and 12-18 month clothing.  He has some 6-12 month stuff too, but the sleeves on the long sleeves are getting too short. 12-18 month stuff is huge on him, but in one piece romper type clothing he needs that length.
• Wears size 2 diapers.  I think we might be able to switch to size 3 soon.  The problem is that his thighs are pretty skinny, so when he sits there is a big gap in the leg holes even with a size 2.
• Has 2 teeth that are all the way in and a third that is through the gums but not up.
• He is taking four 6 oz bottles of high calorie elecare a day in addition to breastfeeding.
• Taking 1 mL twice a day of omeprazole and 3 teaspoons of miralax per day
• Caedmon started fighting purees and since the doctors are giving us very little advice or help with this feeding issues at this point, we got the go ahead from the dietician to start offering small pieces of solid foods.  We are having him self feed so that he can choose the rate and volume of the feed and hopefully stops when he gets uncomfortable.
• The neurologist diagnosed Caedmon with neurologic dysfunction of the GI tract.  We don't know why he has this or what to do about it.  We've been waiting for weeks to hear back from the various doctors.  I kind of think that we never will, because no one really knows what this is or why it's happening.
• Caedmon is sleeping at least 9 hours straight at night now.  After months of having to wake him up for feedings, it's such a relief that he's starting to move toward more normal sleeping patterns.  Naps are hit or miss.  Some days he fights them like crazy.  Some days he has to sleep on the go between appointments.  Some days he takes two good naps.  He's still sleeping on the reflux wedge in the tucker sling.  Since strapping him in while awake freaks him out, we have to get him to sleep and then transfer him to the wedge.
• Walking a lot! In the last couple of days he was transitioned to mostly walking.  Both the neurologist and physical therapist have said that he has some mild low muscle tone, which causes him to roll his ankles when walking sometimes.  PT says we will watch and see how he develops and decide if he is going to need braces for his ankles for a while or not.  He's very determined, though, and is figuring things out.
• Says mama, dada, ball, kitty cat, axel, hi, and uh oh.  He loves to throw things on the ground and say "uh oh" over and over again. 
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• He learned to throw this month and is quite proud of it.
• Caedmon loves to play chase.  He will crawl away from us, then look back at us and laugh hysterically if we chase him.
• He has loves to open and close drawers and cupboards.  The other day he took his brother's drumsticks to his own room and tried to put them inside his changing table.  He has also figured out that door handles are what opens doors, and he tries to reach for them if the door is closed.  He also tries to flush the toilet.
• Caedmon loves his cat and dog and gets super excited to see them.  He barked this month after hearing the dog bark.
• He loves to give high fives and clap 
• We bought him a johnny jump up after we realized he doesn't know how to bounce his legs at all.  He still can't figure it out, but he doesn't like to spin him self around while in it.
• He has finally started putting rings back on his ring stacking toy instead of just off.
• He knows to turn himself around to climb off of things, but stairs are still iffy (the baby gate will be a fixture at our house for a long time).
• He loves going into Graesen's room and getting into all his stuff.
• Showers are his favorite.  He will cry if Jon or I get into the shower without him.  He will open the door on his own and crawl in.

Brothers

Coloring

Caedmon tried out coloring for the first time the other day.

Bunnies

I wanted to take Caedmon to get his picture taken with the Easter bunny.  Neither of our older boys are fond of the Easter bunny at the mall, so I figured I would just take Caedmon.  Then I found out that a local kid photography had a couple openings for shots with real bunnies on Friday.  I decided this would be much better.  I would only have Graesen and Caedmon that day, but I was planning on only having baby pictures done.  Well, Graesen asked if he could be in some, so I let him since he was so excited about holding bunnies.
*Tot Shots Photography

First real hair cut

Caedmon had his first real hair cut (other than the trim around the ears prior to the nd tube placement).  He looks so handsome, and so old with his new look!

St Patrick's Day and specialists

St. Patrick's Day weekend we headed across the state for Caedmon to see a Gi specialist at the children's hospital.  We stayed with my sister for 2 nights.  We were completely disappointed when we received no help.  Basically the dr didn't know what was causing the issue, didn't really understand what had been seen on the swallow study or with the ent scope, and said Caedmon was too small for the testing that could give us more answers.  She was supposed to call the motility specialist and get back to us within a week, but she never did.  We felt so defeated and like no one really cares. 

A few days later Caedmon saw a neurologist at home.  The neurologist was great.  She listened and seemed to really care.  She said Caedmon has some mild low muscle tone.  She was surprised by what was seen and said Caedmon has neurologic dysfunction of his gi tract.  She wasn't sure of the cause but thought it probably has to do with the nerves specific to the gi tract, which means it falls back on the Gi doctors to figure it out.  She said she thinks they need to biopsy his esophagus and colon.  She said she would speak to the other neurologists and Gi about what to do.  We haven't heard anything back.  In the mean time, we've gotten Caedmon's formula intake up. And since no one knows what to do about his eating, we are working with the dietician to slowly add in solid foods, allowing Caedmon to control the rate and volume to keep him comfortable.