NAM Wk 5

I have decided today was our last NAM appt! I am going to keep the NAM in, Judah eats much better with it. I am thinking about bending the nose stents out and not using them because I read, and Dr. Mulliken warned me, that sometimes scar tissue gets built up in the columella from stretching too much. The dentist says he is looking really good! I agree! He has only been in the stents 2 weeks and already looks so different! I am proud of him. Dr Chavarria was really pleased. She said he is such a handsome boy! :) I wanted to get a picture of her and Judah but she left shortly after we got there. I think her arm was hurting.
God is answering prayer!! CCA kids is taking care of ALL 8 NIGHTS for our hotel in Boston! I know that He is our provider and always takes care of us but it is so humbling each time He blesses. I can't help but think "What is man that thou art mindful of him?" (Psalm 8:4) Really, I am just one person in a HUGE world FULL of hurting people. I am sure there are way more important prayers out there but God takes the time to show me His love and mercy..I really don't deserve it but am so grateful. Thank you Jesus.

NAM Wk 4

Judah looks great and apparently ahead of schedule! The dentist added more acrylic to the nose stents and to push the premaxilla back.
He weighs 13 lbs! I am so proud! The pediatrician said he is eating well and looks "beautiful" Judah tested positive for egg allergy. I am still going to continue to cut dairy out and gradually introduce it back to make sure he is ok.

I know..I am slacking. I don't have any pictures to post, but today has been totally insane. I did post some last night! So scroll down and enjoy! :)
Rebekka

NAM Wk 3

The nose stents are in!! It took FOREVER and Judah was so cranky..We got there at 7:45 and finally got out around 10:30. I think his premaxilla is looking a little more centered which is such a relief. I took some really good pictures of the inside of his mouth to show a surgeon in Boston...we will talk more about that later!

NAM Wk 2

First I want to say HAPPY FATHERS DAY!!!!! To my husband.... I know it's not until Sunday but why not start today and make it last?? :) I love you babe! I could not ask for a better man to raise my kids with (yes that's plural...but not any time soon!)

So, we went to our NAM appointment today and they did NOT put the stents in even though she said they would...But they did add some more soft acrylic to center his premaxilla more..which I think looks more off center than last week. We have an appointment for next Thursday to get the stints in. Judah will be her only appointment that day since the stints take a while to make.

Feedings are getting better I put him back on the Bethanachol and I am not taking him off this time. I keep taking him off meds hoping that he is better...and then he gets worse. I stopped giving him the prevacid I think it hurts his stomach (which defeats the whole purpose)...and still no dairy for mom.

Please keep praying! We need God to help mold his lip and palate, guide doctor Acharya's hands when she molds the NAM, touch his little stomach, and give him a healthy appetite. Last night he slept through a feeding and only had 5 feedings for the day (but still got 24 ounces in) but didn't go to sleep any earlier...strange. He just laid in bed looking at the ceiling fan for 30 mins It was pretty cute

NAM Wk 1

So we went to the dentist today. She put some more acrylic in the NAM to get the premaxilla more centered. She is putting in the nose stents next week. He is doing really well with it. He sucks on it now for comfort or when he is hungry :) It's really cute.

Feedings are still tricky. Some feedings he sucks the milk down in 5 mins (those are rare) sometimes he eats wonderful until he burps...and sometimes he sits there for 20 minutes screaming bloody murder :( I hate those times. Anyway I am thinking maybe he is allergic to dairy? He has a rash on his face that won't go away so I have been cutting dairy out of my diet (since Monday) which is REALLY HARD! Mom loves her milk... and ice cream.. and cheese.. and chocolate...I could go on... When I went in this morning to wake him up to eat he was just looking around chomping on his fingers and smiled real big when he looked at me :) (that's the first) Also the rash looks like it is healing so hopefully just maybe we have a winner!!! I will gladly cut dairy out if it makes him happy.

I am going to try and take pics every week so we can track his progress. His appointments, for now, are every Wednesday.

And The Journey Begins...

We got the NAM yesterday...The doctor told me to only put it in when he eats (with nothing keeping it in so I would have to somehow hold it while I feed him?) for a week!! Long story, but basically the experienced doctor broke her arm and hasn't come back for about 8 weeks..so we are having to go to the doctor she was training. Usually they tell you to put the NAM in only when he eats for like a day or 2..not a whole WEEK! So I tried holding the NAM while I feed him..when I took it out to burp him and then put it back in he cried and cried. So I thought I would take it out when he eats and put it in when he's not eating so he can get used to it without something else making it hard to eat..so I tried that at the next feeding...he gagged, and then exploded with what looked like his whole feeding. Of course I cried...the NAM is supposed to HELP the feedings not undo everything I worked so hard to get in him! So after he calmed down and I fed him again (without the NAM) and gave him some tummy time I put the NAM back in and held it and tried to distract him when he started to gag. I kept it in for 20 mins doing this and left it out the rest of the night. I decided I was going to start taping it on him and leave it in all day today..so far he spit up like crazy again this morning but this time I didn't take it out..I left it and rocked him. Every once in a while he will fuss and gag but I'm keeping it in! It is really hard to watch though..I just want to take the thing out, run it over with my car and call it a day. But, it will do a lot of good in the long run and keep him from having to go through even more surgeries so we are just going to have to be strong together, take it one day at a time, and trust in Jesus...I really don't know how I could get out of bed in the morning without him. Thank you so much for your prayers I know they are what's carrying us through this.


Wrapped in the towel like a sweet burrito :) He loves bath time.

First mow hawk...you can barely see it (I don't have much hair..)