The Move

I'm stressed out! Eric graduates in 25 days and we still don't have paper orders so that we can book a moving company, sign up for base housing in Colorado, book a cleaner to take care of this house when we leave (which is mandatory) etc.

The drive to Colorado will take 5 days if we drive 6hrs a day and stop twice to feed Wyatt. Wyatt didn't eat well on my last trip and I veru frightened of him losing weight over a 5 day period. Plus we have the 3 kitties and I have to pump milk along the way.

No one can tell us if we will have to turn around and move to TX within 6 months of arriving. This effects when we can schedule Wyatt's surgery. I am not allowed to book an appointment with a cleft clinic in Co as that is a different medical care region and no one can tell me who my pediatrician will be until we get to the base. No one can tell us which cleft clinic in Colorado we'll be sent to so that I can research the team. I can't make a follow up appointment for Wyatt's ears until we get there and I have no idea how long an appointment will take.

Then there's the fact that somtimes people have to wait 3-4 weeks to get their belongings - can you imagine being a stay at home mum with no couch to sit on for 3 - 4 weeks?

I just want to get this over with.

Birmingham Specialist Appointment

We went to Birmingham last Thursday to see the cleft team. Eric was unable to come. I had a girlfriend who also has a 3 month old come with me. We had a great trip and the boys were fantastic! We stopped every 1 - 1.5hrs for an hour and that worked perfectly - it was slow, but enjoyable for all of us.

Weight: 11lbs 5oz Height: 22inches

The audiologist found fluid on both ears and scheduled Wyatt to have his ears drained and tubes put in on Feb 15. Its apparantly a routine procedure that doesn't take very long and quickly heals. I am trying to get the surgery booked down here though so that Eric can at least be close by and so we don't have to do another 3 day trip. Even though the last trip was pleasant, Wyatt didn't eat very well which as we all know causes weight loss - not good.

The geneticist said that Wyatt's genetics tests came back negative on all counts. This means that he does not have any other hidden or undiagnosed syndromes - HUGE sigh of relief. He said that he is still going to diagnose Wyatt with Stickler since that test only has a 70% accuracy and the clinical signs point to him having it. He thinks I am the carrier of the mutated gene (I'm short, have big, round eyes, and am short sighted) I have to go and get a full skeletal x-ray which will show him something else to help prove his case. I haven't had time to look up all the terms he gave me yet. So this saga goes on unfortunately.

The surgeon was very happy with Wyatt's weight and said if we had been staying in Alabama he would have scheduled Wyatt for surgery in August. He was fine to let us keep Wyatt's nasal feeding tube in and gave me a BIG pat on the back. He said its paid off and that he did not think Wyatt needed a G-tube as I was obviously coping very well feedings. It felt so good to get such positive reinforcement from the surgeon. I have been killing myself to keep on top of things and I felt so relieved that my hard work hasn't been for nothing.

The nutritionist also gave me huge kudos - she was so excited that I am still managing to pump breastmilk for Wyatt. She taught me how to wean Wyatt off of the tube - which will more than likely take months. I will probably begin this process after we move to keep things managable around here.

Super Nanna

Mum came to stay with me for a few days while Eric was on survival training and learned how to feed Wyatt and hook him up to his feeding machine at night. I went with a friend to shop for a ball gown for Eric's graduation and when Mum called me I was worried that something was wrong. BUT she was calling to tell me she got a full bottle into him, whih only happens 5 - 6 times a week - if we're lucky! I congratulated her and told her if she could do it two times in a row I'd be impressed and a believer in any techniques she wanted to share (you know Eric and I have tried everything). She got a second bottle of 3oz into him. The next morning I copied what she was doing and got a 3rd bottle of 3oz into him. AMAZING! We're very happy. Its funny that everything she did was something we have tried before, and had given up on. Its so lucky she came with a fresh pair of eyes, otherwise he would not be eating as much as he is now. He is getting more than 26oz a day in now! Yay Nanna!

Scary Boo-Boo

I had coffee with one of the other wives recently and when her 2yr old saw Wyatt she became very upset about Wyatt's "boo-boo". So upset that she began to cry. I know when I first saw the tube I was horrifed, and now this little girl unwittingly reminded me how terrible it looks.

Today at the Drs office, while waiting to check out, a young boy of about 5yrs asked his mother in a loud whisper "what's that thing coming out of his head?" She tried to tell him to be quiet and he said "but what's it for?" I turned around and told him "that's how the baby eats - we put the food in here and it goes to his tummy." He grimmaced.

True Feelings

Here is a portion of an email I sent to a fellow cleft palate/Pierre Robin/breast milk pumping Moomy (I meant to type mommy, but "moo"my works LOL)...

I have avoided "mommy and me" groups so far. I hate it when women peer into his carrier to see him and then they look up at me with this concerned "what's with the tube hanging out his nose" look. I used to always smile and want to show him off. Now I just look the other way if I see someone peering in at him so that I don't have to deal with "the look". I have been thinking a mommy and me group might be nice to get out of the house though. We went to dinner at a Mexican place last night with a group of friends. I hate how people ask what's wrong and when you begin to tell them, they almost jump in the middle of your sentence and say "surgery will fix that right?". They don't want to know how hard it is - surgery isn't for another 10 months for God Sakes!

Eric said to me when we got home that he was jealous as he watched his friend feeding his daughter. He didn't have to stare intently at the nipple and sqeeze in sinc with sucks and watch for breathing and - well you know - all that. He just held her and put the bottle in her mouth and looked the other way while he talked - so effortlessly.

What a Big Boy!

Today we went for our weight check and Wyatt actually put on 1lb2.5oz in 2 weeks! I jumped up with my hands in the air and squealed - must have been quite a sight. I finally had to devise a detailed schedule for the two of us in order to be able to fit 5 bottles plus 9hrs of tube feeding in. I've been trying to tweak our daily routine for a few weeks now and have finally come to something that works. I had to work around the fact that there are only 24hrs in a day and that he likes to eat on a 3 hr cycle, plus he needs a couple hours after the tube stops to start his first bottle etc. I am so pleased with myself for finally figuring it out! I do have to wake him up for feedings though, otherwise he'll sleep too long and we can't fit the 5th bottle in at the end of the day AND the second lot of milk I add to the tube doesn't have formula in it, otherwise he won't eat his first bottle in the morning.

Weight: 10lbs7oz (10th percentile OMG!)
Height: 22inches (8th percentile OMG!)

Our routine
5:30am Turn off tube feeding and flush Wyatt's tube
5:30am - 6:00am Express milk
6:00a - 6:40am Back to sleep
6:40am - 7:00am Wake up Wyatt, change diaper etc
7:00am - 8:00am Bottle One
8:00am - 8:30am Housework
8:30am - 9:30am Breakfast, hair & make up
9:30am - 10:00am Express milk
10:00am - 11:00am Bottle Two
11:00am - 11:30am Wyatt's bathtime
12:00pm - 12:30pm Lunch
12:30pm - 1:00pm Express milk
1:00pm - 2:00pm Bottle Three
2:00pm - 4:00pm Run errands outside of house / go for walk / housework
4:00pm - 5:00pm Bottle Four
5:00pm - 5:30p Make Dinner
5:30pm - 6:30pm Dinner and relax
6:30pm - 7:00pm Express Milk for tube
7:00pm - 8:00pm Bottle Five
8:15pm - 8:30pm Set up tube equipment
8:30pm - 5:30am Tube feeding
8:30pm - 9:00pm Housework
10:00pm - 10:30pm Shower etc
10:30pm - 11:00pm Express milk
11:00pm Change Wyatt's diaper

No More Breastmilk Conversations

Eric says that its like he's living in a bad de ja vu where the only conversation is about breastmilk! LOL! I CAN'T HELP IT! My day revolves around pumping - how much, when, what to mix with it, the bottles, the pump, the child that drinks it - I can't stop myself! By the way, Sat will be 3 months that I have been pumping. I am so proud! Oh and can I tell you that Wyatt took all 5 bottles today and when I combine his total with his evening tube feed we made our goal of 24oz - for the first time! Yippeee. PLUS! May I brag to you - I froze 18 - count them - 18oz of milk.

o.k. - I got that off my chest (no pun intended). Now I will go and talk to my hubby about something else - like how many times Wyatt pooped today LOL :-)

Twisty-Ties!

That damn tube connetion is loose again! Eric has devised a twisty-tie solution. He uses a twisty-tie (you know - used to tie garbage bags) and forces the connection to stay together. This has worked for 2 nights. Last night twisty-tie came lose once for small leak. I happend to wake up as it was happening. I want to keep the NJ tube - but this connection issue is a pain in my rear end!

G-tube or not to G-tube - that is the question

I've been all over the internet researching the pros and cons to allowing the Drs surgically place a gastric tube in Wyatt's stomach to supplement his feedings. I now post on 6 message boards and have yet to find someone in our exact situation.

Firtsly, an NJ tube is rare. Most people have NG tubes, which are placed every day and are quite horrible for the child and parent. Wyatt's stays in the entire time so this is not an issue. This is a main reason parents say going to the G-tube is good. - Not a factor for us though.

I did get much feedback about the G-tube causing vomitting and reflux. Wyatt doesn't have that right now and I would be frightened that changing to a G-tube would cause another complication. Many children with the G-tube already have the relfux and so when they get the g-tube they also have another procedure at the same time. Other parents reported having to go back to get the second procedure after the vomitting was too bad to cope with. Oh, this after or in addition to trying meds.

I'm just not sure how long the nj tube can stay in for! We have been told 2 months or scaring could occur. Here's my thought though, let's check for scaring at the end of 2 months and if none is present then keep on with the NJ tube - its beeter than putting Wyatt under for a surgical procedure and he'd be at far less risk of further complications. I just can't find any other information or studies on how long and NJ tube should be used for.

Oh! and here's another thought - he's growing every day. Which means his jaw is moving forward. Perhaps at 4 months his jaw will have moved forward enough for him to eat more efficiently?! PLUS it looks like Wyatt is putting on weight at a pretty good rate at this point...

I want to do the right thing - its just so hard to know what that is. Right now I feel certain that surgery is not the answer.