Grandpa visits

Last week my dad and stepmom came to visit and meet Colton. This was their first time meeting him although my dad called almost every day to see how his grandson was doing. This first picture is Colton and Grandpa laughing together. My dad came over every morning to hold Colton while I got ready for the day. During this time I would hear them both cracking up together! Colton loves his grandpa very much!
We all went shopping (window shopping) - Colton's first trip to Rodeo Drive! While my stepmom and I checked out the shops, the boys hung out outside. They are so sweet together, it was hard to see dad and Beth leave.

Grandma Beth and Colton on Rodeo Drive!

First Mother's Day!

Here's a pic from my first Mother's Day! Boy, did it feel weird standing in church when they had the moms stand! We met my family for lunch and everyone made it very special for me. Clark imprinted Colton's feet in some clay for me - very cute! I am so blessed to be a mom to Colton. This has been a wild and wonderful ride so far!

Colton HaHa!

Pretty happy for a boy who can't breathe! He gives us so much joy with his little smiles and coos. That makes every tough day VERY worthwhile.
Here are the updates from the appointment with the occupational therapist; ear nose and throat specialist; and pediatrician today.
Occupational Therapist:
We went to see the occupational therapist a week or so ago. Her name is Erin and she is wonderful. We are so glad we went, especially since we had no idea what to expect. She taught us how to work around Colton's special needs. She showed us some feeding techniques to help him with his suck, swallow, breathe reflexes. She also gave us a couple of optimal holds that will help prevent "pooling" of milk in his throat and minimize the possibility that he will inhale the milk and possibly contract pneumonia. She also gave us these little disposable hospital bottles (that we will actually wash and reuse) that will help with the flow of the milk. They are smaller so they show in milliliters exactly how much he is eating (since the regular bottles only show ounces and it often seems he isn't getting anything. We continue to add the rice cereal but don't really see much difference either way. I'm still pumping so he is getting my milk every day too which hopefully will help give him the antibodies he needs to ward off any illness. She also said he is exhibiting developmental milestones that they look for in 6 month olds. Our boy is a smartie!
ENT:
Went to ear, nose and throat doc again yesterday. He says we just have to close our ears and tune out Colton's noises b/c there isn't much to be done. He says he does not think it warrants surgery - we just have to focus on the eating and ensure he is gaining weight. He said Colton not only has struggles eating, he burns more calories b/c of the effort he puts into it. He mentioned an option prior to surgery of a feeding tube at night while he sleeps. I'm not quite sure how that would work but I'm not even considering it, just hoping we won't get to that point. The main thing is that he confirmed our pediatrician's statements which is what we wanted. Also, he told us that it is a bit optimistic to think he will grow out of this by age 1. He thinks Colton will grow out of it by age 4. Clark and I were both really glad to know this so that we don't panic if he reaches one year old and still gasps/squeaks.
Pediatrician:
Went to pediatrician today. Colton gained weight - he is now 9lbs13oz. That is a 7oz weight gain in about 12 days. Doc says that is good but not great and we still have to watch him. Doc says he is gaining the bare minimum of what is acceptable and we'd like him to gain more. Unfortunately, even though he gained weight, he went back down to the 4th percentile in weight. Head circumference stayed at 10th percentile and height was up to 24th percentile. The most important thing is that the head continues to grow. He doesn't want us to change anything (trust me, I asked) and we will go back in two weeks for another weigh in and 3 month check up and immunizations. Can you believe he is already 3 months! Doc says our ENT was too pessimistic and this shouldn't last until he is 4 years old - he should grow out of it by 1 year. We will just take one day at a time.

Thank you so much for all your prayers - we'll keep you posted. Let's focus on the good things for now - the adorable, cutie pie boy that gives Clark and I so much joy. We truly appreciate you all being on this journey with us. We love our friends and family!

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.