My breastmilk is not causing his mucousy vomits

I have to say that I am not surprised. After 4 long days of not nursing Auggie he is still vomiting mucous. I think we can safely say that my breastmilk is not what's causing the mucous. Of course my intuition told me all along that this was not the case, but I had to do it to prove it to others! Tomorrow we go back to nursing and preparing our plan to wean. This tube has got to go - it's now doing more harm than good. He's gaining less now than he was prior to the tube and he's vomiting about 5-6 times daily.

Procedure: MRI

Today Auggie had a brain MRI without contrast to eliminate malformation problems. The hardest part was when they placed the mask with anesthesia over his mouth and watching his cries go from loud to silent. I was then asked to wait in the family waiting room and was called in when he started waking up. He had an IV and was crying with his eyes closed when I first saw him. We left the house at 4:30 AM for his 7:30 AM appointment and he had to stop formula at 1:30 AM and pedialyte at 4:30. It's been a LONG day. Now we're waiting for results from his EEG and his MRI.

Yikes, the tube came out!

I no longer freak out when Auggie pulls his tube out, instead I take a deep breath and I prepare...here's how I proceed:
1) I have my husband cuddle the baby because bad times are coming
2) I prepare the new duoderm tape and adhesive - this means cutting pieces to fit his face and then placing the duoderm on his face
3) I swaddle the baby
4) I kiss the baby and tell him I love him.
5) I lay him flat and lift his head up with one hand and with the other hand I take the tube and start inserting it until I reach the number where it should be. (best to mark it with a marker for better visibility).
6) Baby is screaming but tube is in and I place the adhesive tape over the duoderm and tube.
7) Cuddle, kiss and soothe baby, REPEAT, REPEAT, REPEAT
8) Once the baby is calm I check for placement using a stethoscope and 2ml air.

I have not worked up the courage to insert one of these tubes in my own esophagus so I don't know how it feels, but don't let the doctors tell you otherwise, I know from my baby's tears that it must hurt like hell.

A waiting game

We're waiting for test results from Auggie's EEG and next week he'll have an MRI. In the meantime I feel completely helpless until we have results back and know how to proceed. The tests might show that it's medically necessary for him to be tube fed right now, but I am so itching to start weaning him off that thing. I am trying to get him to nurse more (currently about 4-5 times daily for about 7 minutes) and I am pumping more and taking Reglan to increase milk supply. I am preparing myself to go 100% breastmilk in a few weeks - fingers crossed!!

Tube weaning - it's an industry in and of itself

I've been reading so much recently on tube weaning. I had no idea that it was so complicated and political!! There are many different reasons why children are tube fed, but I think all mothers can agree that the feeling of not being able to help your child feed and thrive on his own is awful. In the US the tube weaning programs tend to focus on behavior modification while in Europe the model is much more hunger based with a self regulated approach. Families travel to Austria to a special tube weaning clinic in Graz or to Darmstadt, Germany to see a renowned doctor. I don't know how/where we will be weaning as that day is a few weeks away (I hope) but some days I just feel like running off to a tropical island with that little baby and leaving the tube at home. Other days I am more realistic and think that there probably is something wrong with my baby and he NEEDS this tube. We're still going through testing to rule out medical problems, but I feel helpless in the meantime. Someone should open a tube weaning clinic in Hawaii where we can get some much needed R&R while the babies crawl around in the sand and eat papaya with their hands!

Revised formula recipe once again

We've changed the calorie content of his formula again since the vomiting continues regardless of calories per ounce. We're now back at 24 calories per ounce at 30 ml/hr and still on continous feeds. I keep mentioning tube weaning as he is nursing more now and the doctors keep talking about G-tube (stomach tube). Once all the EEG and MRI test results are back we'll know better how to proceed. The good news is that he is nursing more - today he nursed 5-6 times - the most he's nursed in 2 months!! I am VERY pleased about that. Now I need to increase my milk supply - more pumping!!!

Testing: EEG

Yesterday Auggie had an EEG to rule out seizures. A test that sounds pretty harmless was a total nightmare. Auggie screamed so much while the technician was trying to place the electrodes that his head started sweating and they all fell off. I calmed him down a little and was told to try nursing him - are you kidding me? He would not have it but she did manage to place them on his head and by the time the test was ready to start he fell asleep in my arms. 15 minutes later she flipped the lights on and starting clapping her hands loudly with a big frown on her face. What a rude awakening! Of course he screamed his head off. The she held his eye lids shut for 20 seconds and finally placed a flashing strobe light in his face - reminded me a little of "A Clockwork Orange". We were both exhausted afterwards and had a lovely 2.5 hour drive home in rush hour traffic, oh, and it was my birthday...

Homeopathic Remedies: mag. carb.

On Friday we gave Auggie a few drops of mag. carb. (three small pebbles of magnesium carbonicum dissolved in water). It's given to infants who fail to thrive, have limited weight gain and delay in muscle development, and who are pale in complexion and suffer from reflux (sounds like our little guy). So far, we have not seen a change in him. He is still not pooping very often (every 5-7 days) even though we give him prune juice daily. Tomorrow we'll have to give him another glycerine suppository.

Tube Day #75

Auggie is not gaining very much weight these days and we're wondering if he is just vomiting too much (he vomits 3-4 times daily). He weighed 14 pounds 9 oz. today. We have adjusted his formula now to 27 calories per ml at a rate of 28 ml per hour hoping that it will help. After seeing the feeding specialist yesterday we are now abandoning trying to use a spoon to feed him. Instead we are focusing on letting him play with his food and possibly placing a little food on our fingers and just gently touching his mouth to give him a taste. There is so much to research and read on the topic of tube weaning, it's overwhelming. I don't think we are ready to start weaning yet, but hopefully in 1-2 months after we've done all of our research and discussed our plans with the doctors we can set the plan in motion.

Therapy: feeding specialist

Auggie has occupational therapy tomorrow to help him transition to solids. The main goal of the therapy is to get him over his oral aversion by making food fun. We try to do this through a step process kind of like tasting wine: see, smell, touch and taste. We have tried rice cereal, carrots and apple sauce. He currently does not open his mouth , perferring instead to purse his lips when he sees the spoon coming. We're not quite sure why he has developed an oral aversion, but one theory is that he was so traumatized by his vomits as a young baby when we were also giving him bottles that he now associates anything we give him with the pain he experienced. He still nurses occasionally when he doesn't have too much phlegm in his throat.

Development Update - Auggie is 6.5 months

Auggie is 6 1/2 months. He weighs 14.5 pounds. According to the pediatrician he is at about 5 months in terms of his development. He just started rolling over and holds his head up pretty well when on his tummy. He grabs his feet and can tripod for a few seconds before falling over. He is now on continous feeds of neocate 27 calories at 27 ml per hour. He still vomits 2-3 times per day. He usually vomits once first thing in the morning and then he may or may not nurse for a few minutes.