Busy weekend...

We are still working on the feeding stuff - Jack just doesn't seem to want to eat anymore - of course he's getting it through the tube, so it's easier that way!  We go to the pediatrician this week, so hopefully they'll be able to give us an idea of what he should/can be eating and what to do if he doesn't eat a bottle again.  We are having fun with his feeding now and here's Jack 'playing' in his food (no tube in, but we were getting ready to replace it after the fun times in the food)

We took Jack on his first road trip this weekend!  We first went to Grandpa and Grandma Albright's house to spend the night on Friday - Jack got to meet the baby horse again and tried to reach out and pet one of the big horses!  It was so funny! :)  Saturday morning we got up and headed north to Great-Grandpa Reith's house - it was Jack's first time meeting Bud and vice versa.  Jack enjoyed his visit this weekend.  Dustin and I went to a very nice wedding on Saturday night - one of our first night's out with out the little man!  We missed him of course and took this adorable picture when we returned home!

Jack got to meet all of the girls this weekend also - we headed to a wonderful baby shower for Jen Craig and Noah (due in August).  Kristina and AJ's house is beautiful and we had a nice afternoon seeing everyone!  We are looking forward to meeting little Noah when he arrives and can't wait to hang out with everyone again!  Jack had a good time and enjoyed playing with the balloons. 

How Preemie Mothers are Chosen...

I found this on one of my preemie message boards on Baby Center - it is a wonderful piece for any preemie mom!

Did you ever wonder how the mothers of premature babies are chosen?



Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation.

As he observes, he instructs his angels to take notes in a giant ledger.


"Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity."


Finally, he passes a name to an angel and smiles. "Give her a preemie."


The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.


I watched her today. She has that sense of self and independence so rare and so necessary in a mother.


You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect.


She has just the right amount of selfishness."

The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it.


I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them.


She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.




God smiles. "A mirror will suffice."










Author: Unknown...found on Baby Center

Happy Father's Day

Happy Father's day to my wonderful husband.  He spent all day yesterday hanging out with Jack while I worked.  They had a good day relaxing at home and we did the same thing today! 

Jack's doing good, still taking about an ounce of milk a day, mostly in the evening.  We're working towards getting all of his food delivered by 4 large bolus feedings during the day.  He's getting all but 4 ounces this way right now - it shouldn't be long before we can get that set up.  His stomach must be expanding by now, so hopefully he'll start wanting more food.  We are offering him the bottle before each bolus feed.  He's trying squash this week and did very well with it tonight.  We went shopping today and picked up an exersaucer for him - he loves it!  It has so much for him to interact with - and the height is good to where his feet are flat and not on his tip toes.  We also bought a nice jogging stroller - my plan is to get out once a day for a good walk with Jack. 

Friday afternoon we spent time with Carrie and Owen - here's a good picture of the boys hanging out!

How to transition off tube feedings...

This might be asking too much, but I'm ready for Jack to be done with tube feedings!  We've mastered an ounce/day by mouth, now we just need to work up to more but I'm not sure how we are going to do that when we are still on the tube feedings.  He's supposed to get a certain amount per day, which makes perfect sense because we need to make sure he's growing, but I'm not sure how to increase his oral intake without making him hungry and at the same time make him realize that eating will decrease that hunger...I'm trying to offer him a bottle before he takes a bolus feed and he'll attempt, sort of.  I guess we just need to work on his stomach size and then hopefully he'll get the feedings soon!

Update...

Well, Jack isn't officially tube free but he's getting closer.  We went to see the ENT doctor on Friday, she said his repair looks good and his tube was moved to a NG(it's now in his belly).  We can now change up his feeding schedule a little bit, ideally the goal will be to have his continuous feeds go at night and then he'll be taking all bottles during the day.  We got the go ahead from his pediatrician this week to start trying foods, vegetables first and one a week only.  We started with sweet potatoes - so far he seems to enjoy them.  We'll try green beans later this week.

While we were at the doctor, we got a weight check - Jack's now 13.25lbs and over 25 inches long!  He's getting so big! 

Nice relaxing weekend...

We had a wonderfully relaxing weekend, enjoyed time together as a family.  We spent Friday afternoon hanging out - went to lunch, went to the butcher shop to see Grandma and Grandpa, then Dad and Jack headed home and I went to get my hair cut!  It was a nice relaxing taco night with Aunt Marianne and Uncle Steve! 

We spent Saturday hanging out at home after a drive around to see if we could find anywhere selling cheap trees.  We have a whole plan for our backyard but probably won't carry it out until next summer.  Grandma Sally and Grandpa Fritz came over Saturday night to hang out and have dinner. 

Sunday was busy!  We went shopping early to get a few things we needed for the house and yard.  Then once we got home, Dad worked out in the yard - planted our new apple tree and mowed the yard, I worked inside trying to clean up, and Jack spent a good hour napping in his swing!  Sunday night our friends Erin, Ben, and their little girl Breanna stopped by for dinner on their way home to St. Louis!  It was wonderful to see them!  I hadn't seen them since I was in the hospital last October and they didn't meet Jack at that time.  We got some great pictures of the little ones!  How wonderful!

A couple cute pics of the Jack...

Swallowing update...

Jack has his swallow study today - 3 weeks post-op - he passed!  He did not aspirate on thin liquids or thin/thick purees!  That means his cleft repair was a success!  We are VERY happy with this news.  Next week we will go to the ENT dr. to check the repair and move his feeding tube from an NJ to an NG.  One step closer to being tube free!  This is the best news we have received since we heard he was coming home from the NICU! 

Not too sure...

So, I'm really just not too sure where we are headed in regards to Jack's feeding situation.  Here's the background and an update - 4 months ago we left the NICU, Jack was on oxygen but taking everything by bottle.  About a month and half later we ended up in the hospital after he failed a swallow study, they found his laryngeal cleft and told us that once his swelling/redness went down in his arytenoids then they would repair the cleft and we would work towards eating again(good!).  We went home with a NJ feeding tube and would wait until this got better - 7 weeks later, the cleft was repaired - far as we were aware, we'd attempt feedings, if he did well then a swallow study would be done and he might leave the hospital without a tube.  Unfortunately that did not happen.  Jack did not feed immediately, so we were discharged and told to continue with the NJ feedings.  We initiated speech therapy (yay!) and were told that he'd have a swallow study at a later time once he started eating.  Since we started speech, Jack has now been taking about an ounce or less consistently by mouth (yay!) but we have been to the ER three times in the past week to have his feeding tube replace because he's pulled it (boo!).  I've now learned that the plan was to have the feeding tube in for about 4 weeks as the repair heals to decrease scarring at the site and avoid reflux but the catch is that we are allowed to attempt feeding by mouth - so that makes no sense to me.  Also, there is still a concern for aspiration by pulmonology but we haven't seen them since late March and don't have an appointment to see them until late August.  I feel as though we were misled in regards to the healing process of all this and how it will all work.  It is so difficult to handle all of this because we left the NICU back in February with no feeding tube and what we thought was no feeding problems and now we have a whole new situation going on.  This is such a struggle for me and I'm just not too sure about anything at this point.  I wish this all would have been better explained from the beginning rather than finding out new information as the weeks go along.  I know that Jack can take the feedings and I know we'll get through this - here's to thinking positively and hoping for a wonderful swallow study later this week!