Tuesday, June 30, 2009

We Have a Surgery Date!

August 4th at 7:30 AM it is going to be 8 hours long! WOW! We have to be in Boston the day before (3rd) to meet with Mulliken then we can't leave until August 12th! I have been on the phone all day with insurance, non-profit organizations etc. trying to get this whole thing planned. I tell you it would be SO MUCH easier just to stay in Houston! But we want the best for Judah..so here we are taking one step at a time! Please keep us in your prayers.
Judah has his 4 month check up tomorrow and a NAM appt. Right now he is only eating about 24 ounces a day...I don't think that is enough. We will see what his doctor says tomorrow!

Thursday, June 25, 2009

Dr. Mulliken

I have been speaking with a surgeon in Boston. He called me at 9 the other night! Very sweet. He told me the reason he doesn't do the NAM is because even though it does give you more columella it is still not enough. He explained all of what the measurements should be and that he creates the columella, and the cupids bow all in surgery. (we are still doing the NAM to make sure we do everything we possibly can) I have seen the kids he has done (not just the pictures he wants me to see but pictures I have found online through blogs, profiles, etc.) they look absolutely amazing. At first the top lip looks a little narrow and the nose looks a little big but you can't just think about how they look right after the surgery. As they grow everything just relaxes and becomes so proportionately perfect. He told me the first surgery is like cutting a diamond, if you don't do it right you will never have that chance again it will never look as good as it could have. "The reason I am here on earth is for babies with cleft" ...That is the kind of surgeon I have been praying for. His surgeries last about 8 hours. 1 of those hours are spent just measuring before he even makes the first incision.
I know that God has the last say and can use any surgeon for His glory. If we do decide to use Dr. Mulliken things are going to be much harder getting Judah there and back insurance etc.
Please help us pray for direction and for God to have His way and work everything out.
We love you all.

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!

Wednesday, June 24, 2009

They took my blood! :(

We went in today to get Judah tested for food allergies...that was one of the hardest and scariest things I have done! First of all, the nurse had about 12 tubes sitting on the counter ...I asked if she was going to fill all of those up? Good thing she said no! I was about to run out of there! Then she clearly did not know what she was doing...I think Judah was their first baby... she got another nurse to help and they kept going back and forth about how much blood should we take? Does this look like a good vein? Oh my goodness! I said something like "I guess you don't get very many babies in here?" They said NOTHING (obviously he was their first!) So I just told them "I bet it's really hard working on a baby.... I wouldnt want to." She breathed a sigh mixed in with a "yeah" Then she holds him down , takes a deep breath and says "Everybody ready??" Of course the whole time they were going back and forth I was praying!
Everything went smooth after that thank you Jesus! Judah just cried a few seconds when she poked him and then went back to giving her those flirty eyes :)
He's such a strong boy. Results will be in a week.

See my green band aid?

This is what he wore to church on Father's Day

So cute!

Wednesday, June 17, 2009

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

Wednesday, June 10, 2009

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.

Sunday, June 7, 2009

For Naina...

Who keeps reminding me that there aren't any pictures of me on the blog... so we had a little fun playing on the Mac camera :)
I am glad I finally took some pictures with the little guy.
Sorry no video of me singing... maybe one day I'll surprise you!

Oh and I am happy to say he has not been gagging on the NAM anymore... unless he hits it out of place but nothing major like before. 

Thursday, June 4, 2009

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..)