Quick Summary

Hi guys, here is the update from the doc today - thank you for your prayers. I'm off to sleep while I can!! Quickie update:

1. Colton has a narrow airway - he is getting enough air (pulse ox is good) but he has to work much harder to get it. Doc says it is like he is "breathing through a straw".
2. It is very serious and the only treatment left is surgery. HOWEVER, because he is gaining weight now and getting enough oxygen, the risks of surgery outweigh the benefits.
3. This condition should correct itself in about one year. Good news is that it can improve over the course of that year. Bad news is that it can also get worse before it improves.
4. We tried a breathing treatment on Colton but it did not work. Dr. did not think it would work but just wanted to try it in case it did. (this is usually for folks with asthma where the wheezing is on the exhale - Colton gasps on the inhale). I held Colton upright and held this covering over his mouth. It was so big it covered his whole face really. He did not cry, just looked up at me the whole time. My sweet boy. (see picture)
5. There is another breathing treatment but it is made of adrenaline and risky for a baby. He doesn't want to do it unless the ENT specialist thinks it is necessary.
6. He wants us to follow up with the ear, nose and throat specialist again.
7. He wants us to go the occupational therapist (appointment Friday at 3:30pm). She has us adding a teensy bit of rice cereal to his bottles to give it texture and make it easier for him to swallow. He doesn't seem to notice it much.
8. Unfortunately he doesn't think there is much we can do (but he wants us to meet with these other folks so I'm not giving up).

Your Title Here

Hopefully this is coherent - I haven't slept much lately! :)

Colton and I went to the doctor again yesterday. He weighed in "pretty well" as the doctor said - 9lbs2.5oz. He gained the requisite .5oz per day that he needed to. But I guess my mommy intuition told me there is still something going on so I pressed him a bit. After all, when he eats it is so loud and he takes in so much air. Feedings take a very long time. The doc agreed with me that there is a problem but he does not think it is a metabolic issue anymore. He thinks it is an anatomical issue- something to do with the way Colton sucks or the way his mouth works. He referred us to an occupational therapist who can observe him eating and work with him. But the good news is that Colton is still gaining and he was strong enough to receive 2 of his 3 immunizations. We will go back in two weeks for the third immunization and another weight check. He grew in length and head circumference too. His percentiles aren't going up but they aren't going down either (although head circ went up so he must be a genius!)
Thank you for your prayers, we'll continue to keep you posted.

It is much later in the evening than when I wrote earlier and I wanted to ask for your specific prayers. Tomorrow Clark and I will be taking Colton into the pediatrician's office for some answers. After trying to feed him tonight and hearing him just gasp for air, I'm just done. I'm done seeing my baby struggle to breathe. I'm done hearing that this baby was like that and that baby did this like Colton. I appreciate that people are trying to encourage me but I'm afraid my doctor is sort of doing the same thing - aligning him with other kids and not seeing him as his own entity. It's not so much the eating and weight gain. I feel that is a symptom of something else. It takes forever to feed him and he hardly eats still. I'm so grateful he has gained weight but there are still some issues. Colton's breathing is different when you actually hear it. I only have one child so I didn't know how it was supposed to be but now I'm getting wise to it. I got used to his wheezing/squeaking/gasping but now I realize that the poor guy can't breathe, therefore can't eat and can't sleep well. Obviously these are important things so Clark has decided to take the day off from work and go with me. I won't leave the doctor's office until we have some direction. I may be a first time mom but this is the last time I'm going to leave that office without answers. I'm done. Thanks for listening - again, I'm very tired.

Praise!

Dear Friends,
Your prayers were answered!!! Thank you so much for remembering our boy in your prayers this week. He gained a ton! Well not a ton but he gained almost four times what he needed to. God is good! Our doctor joked that he was "obese". The barium X-ray showed no abnormalities. I was so proud of Colton when he got the barium X-ray last Friday. He only cried once when the technician ripped her velcro apron off! He had to lay on that hard surface for a long time with nothing but a diaper and a thin pillow case on. At one point he had to drink the barium while lying on his stomach! He never even peeped! The radiologist did remark that he thought something was wrong with the bottle because he wasn't getting the barium and he was only getting air. I assured him it wasn't the bottle but it was our boy - hence the need for his services...Anyway, Colton did not seem any worse for the wear. My mom was in town visiting. It was a huge help to have her here for support. She loves her grandson!
So today was a success. Colton weighed in at 8lbs13.75oz. That is a 7.75oz gain in only 4 days. We know that it is because of your prayers so thank you. We will go back next Tuesday to make sure he's still gaining. If he is, the doctor will give him his immunizations. We'll keep you posted.
Here is a picture of Clark and Colton hanging out on our patio - I love these guys!

Please Pray for Colt

Yesterday we went to the pediatrician and Colton had lost 2oz. As you can imagine we were very disappointed, especially given the fact that he had "overgained" for the previous appointment. He weighed in at 8lbs5oz (he was born 7lbs7oz and is 8 weeks old today). Our pediatrician has decided that it is time to do the barium Xray to determine if there is anything abnormal about Colt's esophagus and tummy. We will have the Xray at 1pm today (Friday). I am told that this will not hurt him and does not put him at any risk. He just has to drink that yucky stuff (which the doc says doesn't taste so yucky anymore).

We have another appointment with the doctor on Monday. He says this is Colton's last chance to have gained 2oz (1/2oz per day). If he has not gained, we will need to do some bloodwork to see if there is something else going on. He will also have the Xray results on Monday. The doctor also had me cancel Colt's 2 month appointment that was already scheduled for next week because he will not be big/strong enough to get his immunization shots.

So far Clark and I have been pretty okay, just working to get our son to gain weight. I think we are both growing more concerned after yesterday's appointment. Please join us in praying for Colton when you think of him today and this weekend. We definitely feel we have done all we can and we are at an impasse.

On the positive side, Colton looks very healthy and otherwise IS very healthy. Doc says his muscle tone is good and he's strong. His brain is growing which is a very important fact. We see him learning every day. This week he has started to smile and laugh with us (the absolutely most joyous thing I've ever experienced). He has better control over his hands and can now get them in his mouth. Our boy is definitely growing in some ways.

Thank you for your prayers and support.

Answered Prayer!

We finally have wonderful news! Colton weighed in at 8lbs7oz this morning! That means he gained 5oz since Monday when we last saw the doctor. He is supposed to gain 1/2oz per day and he gained almost 1oz per day. I knew my son would be an overachiever eventually :) At 7 weeks old, he is now 1lb heavier than his birth weight. We were very pleased to see that this special formula is working. We will continue with the formula but add back in breastfeeding and we will return to the doctor on Thursday at 12pm to make sure he has continued to gain weight. One concern is that, every time we start a new regimen, he starts to gain and then stops eating and loses weight again. Very frustrating!! So we'll see what happens this week. We are very hopeful that he will continue to gain. We really appreciate all your prayers and emails and comments of support. Here are some cutie pie pictures of my guy. This top one is our fetus-like picture. This is exactly the way he was in the womb but now he is on Clark's chest.
Baby blues!
My handsome boy - he looks so much older to me. I can almost imagine what he will look like as a little boy running around. Oh, he just makes my heart melt!

My 7 week old newborn

So...I have decided that I have a 7 week old newborn. After all, he is the size of many newborns. He isn't sleeping through the night at all and often wants to eat every 2-2.5 hours like a newborn. We don't have any kind of schedule and when people ask "what kind of baby is he?" "is he a good baby?" or "does he sleep through the night?" I really have no good answer. In many ways I feel like I still don't know him that well. This is probably because we have changed his food like a million times and the poor guy can't get on a good schedule. Yes, poor mommy and daddy too. Today, for instance, I was not able to eat, pump, take a shower or brush my teeth until about 1pm. The shower actually didn't come until about 4pm. I'm very tired but I'm glad it is the weekend! Of course, I look at this face and I can't be too unhappy - he is so cute!
These onesies were made by - guess who - my niece, Alicia. Colton is wearing them proudly and seems to agree with what they say!
I'm sure my sister slyly had Alicia make this one! There were others too "If you think I'm cute, you should see my dad" "future surf stud", etc. They were very cute and something to treasure! Thanks, Alicia!