Meds

We seem to have found a good combination of OTC and prescription medicine that keeps Auggie comfortable, produces daily bowel movements and reduces his stomach acid just enough to keep the pain down.  He takes ranitidine (zantac) for his reflux, and cyproheptadine (periactin) to increase his appetite.  We also give him 1 ml of milk of magnesia and it works wonders!!

Weaning update

We completed another 3 day trial wean and again Auggie made progress.  He now will take solids via spoon - he took 3 tablespoons on the third day of the trial wean.  He also takes a bottle in his mouth - took 1/2 oz. in 20 minutes.  That's progress!!  The next step is to propose a full blown wean - in other words, wean him completely with no going back!  We hope to start a modified Graz/Markus Wilken type wean on January 10th.

Results: Gastric Emptying Study

Liam had a gastric emptying study today.  Radioactive material was mixed with 10ml of formula and then I gave him a bolus while they scanned his stomach for 20 minutes.  We took a break for 20 minutes and then had another 20 minute scan.  Results showed that it takes him 32 minutes to empty his stomach which according to the doctor is within the normal range.  Of course I questioned whether the amount (10ml) was sufficient to tell us anything... they also did not see any refluxing, so it's more good news.

3 Day Tube Weaning Trial

The doctor approved another 3 day trial.  We're on day #3 and so far he has taken more by mouth than during the last 3 day trial, but not enough to think about pulling the tube out yet.  He has a gastric emptying study on Tuesday and a follow-up with the doc so we'll see how to proceed next.  I'm hoping for another trial just before Christmas. We've focused on fluids since that's waht he'll have to wean to.  We've tried neocate splash in different flavors, swedish rice valling, blueberry/carrot juice, water, and sugar water.  We've determined that he likes Swedish valling in a bottle with a newborn nipple with a hole cut into it and a tilty sippy cup.  Both of these make it easier to feed him since they have a built-in tilted feature.  I'll post a picture soon when I find the charger to my camera's battery pack!

Results: Eye Exam

Auggie had an eye exam yesterday to check for posterior embryotoxon - he does not have it.  This is great news - it just about rules out Alagille Syndrome.  That's a relief. 

Tube Weaning Trial Results

After 3 days of getting only 50% of his usual fluids and 25% of his usual calories, Auggie did take more by mouth on the 2nd and 3rd days, but it was negligible.  He took a bottle of Swedish valling - kind of like smooth runny porridge.  I had thickened it and cut a larger hole in a newborn nipple.  He took about 15ml of this on his third day.  He never really got cranky or showed us in other ways that he was hungry.  Now we regroup and discuss this with our doctors and wait find out how we should proceed next.  I have a feeling that this is going to be a long road....

It took 11 hours for him to get hungry!!

So, we had our first tube free day.  We turned his food off at 5 AM and pulled his tube out at noon after he had helped me rub some of the tape off.   The whole day I tempted him with food.  I set up a baby picnic to see if he would lead the way to the food he wanted to try.  I offered avocado, sweet potatoes, and pears and had three different bottles with water, formula and a berry flavored drink.  He wasn't really interested in anything. At nap time he did suck a couple of times on a bottle, sitting in my lap and looking out the window but that was it. Our speech therapist came over at 3:30 and by 4 PM he was finally showing signs of being hungry.  He took the bottle several times and sucked!!  He also licked his sweet potato covered lips many times and smacked his lips.  This was HUGE progress.  We're doing a 3 day trial starting tomorrow.  This time he will get 200ml of formula followed by 200 ml pedialtye starting at 5 PM and turning off at 5 AM.  After three days of this we hope that he will finally start to take more by mouth.  Our doctor has approved our trial - his main concern is that we watch out for signs of dehydration and that Auggie gets at least 400ml of fluid per 24 hours.

Tube Free Day scheduled for tomorrow

I am busy preparing bottles, sippy cups, pureed food and anything else I can think of getting into Auggie's mouth tomorrow.  We're turing his food off at 3 AM and taking his tube out in the morning and then not giving him anything all day. Hopefully he will at least take a few sips of water from a bottle - that would be a huge success!!  The though is that he is never hungry and thereore has never really taken much orally. Wish us luck - will report the results here later...

A word about Prevacid

Auggie had been on Prevacid for almost 6 months and vomiting 3-6 times daily.  Our new doctor told us to stop the Prevacid and lo and behold the vomiting has gone down to maybe 1-2 times a day!!  I am angry because I didn't think to ask if the Prevacid might be causing the vomiting .  The doctors make you so afraid of that nasty stomach acid.  However, it does not bother all babies and if the actual disorder is EE (eosinophilic esophagitis) and not true GERD then the Prevacid does not help anyway.  So, 6 months later we have extreme oral aversion due to excessive vomiting, refusal to nurse, and extremely tube dependent.  So, if your baby is on Prevacid and vomiting, ask your doctor about trying a different medication or going without.

New GI Doctor and feeding team

We had a 2nd opinion consultation with a GI doctor and now we have the go ahead to do a trial wean.  What a difference a doctor can make!!  We've also changed therapists and now have twice weekly in-home feeding therapy with a speech therapist.  Being at home allows us to do so many more things - more props, baths, different foods...We'll probaly start the trial wean in 1 week and we'll pull his tube out during the day and cut his fluids by almost 50%.  And our new doctor also took him off prevacid right away - turns out that prevacid can cause more vomiting....Now we're starting periactin and zantac as needed.

Neurologist Follow-up

Back from the neurologist and the news is good.  He says Auggie looks good and we don't have to come back.  Apparently Auggie's developmental delay happened at 3-4 months when he wasn't growing. He is now catching up evidenced by his motor skills developing - now sits unsupported. So, although he's delayed now he should eventually catch up.  Great news!!

Procedure: echocardiogram

Auggie had a follow-up echocardiogram yesterday and it showed some improvement.  His pulmonary stenosis is still mild but according to the cardiologist the valve seemed to open a little bit more than last time. If it doesn't get worse in the next 4 months the doctor will not have to do anything about it (i.e. surgery) and Auggie will outgrow the problem with time.

Eating solids: an update

Auggie now anticipates his meals and seems to enjoy them.  I make sure to feed him when his older brother eats so that he has some entertainment and someone to learn from.  He sits in his high chair and I place the puree directly in his tray. When he sees the food he dips his fingers in it and brings them to his mouth - this is a major accomplishment. 

Results: Urinalysis and bloodwork

The results from the urinalysis and eletroltye panel are back and there are a couple of disconcerting stats.  The PH and the protein in the urine are slightly elevated - hopefully not indicative of kidney problems.  We're redoing the urinalysis in a couple of weeks.  The higher PH levels could be due to the antacid medication and the vomiting. 

Results: Abdominal Ultrasound

The results from the abdominal ultrasound came back normal.  The search for answers goes on.

Results: Genetic chromosomal tabulation

This week we heard back from the geneticist and the great news is that the results are all normal - no missing chromosomes and no extra ones either!

Procedure: Abdominal Ultrasound

Auggie had an abdominal ultrasound today.  It was painless, although he had to fast 4 hours prior to the procedure.  The results of the ultrasound will be available in 2-3 days.  The procedure was done because he had been vomiting more than usual and his doctor wanted to make sure that there was nothing more serious going on with his organs. 

Procedure: Modified Barium Swallow Study

We've ruled out yet another medical condition with another test.  Today Auggie had a series of x-rays while swallowing barium mixed with sweet potato puree. He did not aspirate (bring it into his lungs) and he moved the food back into his throat the way he's supposed to.  So, thankfully there is no medical reason why he couldn't swallow food he just does not want to do it.  He did suck on a piece of apple today and seemed very happy. I think baby finger foods is the way to go with him - giving him control over what he eats so that he is less anxious. At this point he associates nursing, bottles and spoons with vomiting so it's no wonder he doesn't want to have anything to do with it.

Visit to the GI Doc

We're back from our GI appointment and we do not have the go ahead to wean, but the doctor recommended doing less hours on continuous feeds and larger bolus feeds after mealtimes and letting Auggie go 2-3 hours without any food to see if he gets hungry and takes more orally.  I'm skeptical that this will be enough to see a big difference but for now we will cut down to 15 hours continuous and see how he does with solids.

Bolus feeds and calories

We've had some success recently with bolus feeds (one large feeding as opposed to continuous drip) after adjusting the calories.  It seems that Auggie has a hard time with high calorie formula. I've been giving him breastmilk (20 cal/oz.) and 20 cal/oz. formula bolus and he has not vomitted.  I guess some babies just have a hard time processing rich food.  When he gets breastmilk via the tube his mood changes dramatically - he seems happier and full of energy. We give him about 50-60ml bolus in 30 minutes.  The bolus feeds are important because they will help his stomach stretch and prepare for "real" meals in the future.

Tube Free Day - some good and some bad news

The tube free day was cancelled because Auggie came down with a cold.  However, yesterday he pulled his tube out and we let him go tube free for 5 hours.  He started nursing and continues to do so today - Yay!  He also seemed so much happier with the tube out and he was vocalizing more.  He still refused to take a bottle but he did take the nipple in his mouth and played around with it.  We had no success with solids.  He still does not open his mouth but if food hits his lips he will smack his lips and get it into his mouth - I don't know if he actually swallows it or not because often times he will either gag and vomit after solids or he will just spit it out.

Weight Update

Auggie is almost 16 pounds - 15 lbs. 15 oz. today. This past week has been a good one - he gained 8 ounces.  If he continues at this rate he should be close to the 10th percentile in a couple of weeks.  He currently gets about 700ml of 25 cal/oz neocate in 24 hours.  He still vomits 3-4 times every day.

Big Weekend Event Coming Up: Tube Free for a Day!

Auggie will be going tube free for 8-10 hours this weekend (or as long as I can bear it) as we experiment with solids.  He has not done very well taking solids and I think it's because of that damn tube in his throat.  He smacks his lips when he sees us eating and he eagerly pulls his bowl towards him, but when I swipe his lips with some food and he sucks it in, he often vomits.  He does not open his mouth for a spoon or my finger, instead I have to get some on his lips and then he sucks it in.  I'm also hoping that he will nurse more when off the tube.  I will post a report card after the weekend.

New Tests: Eye Exam

The geneticist would like Auggie to have an eye exam to rule out posterior embryotoxon which is an eye condition associated with Alagille Syndrome.  The doctor thinks it's unlikely that he has this condition since it usually also is associated with liver problems and Auggie's liver is fine, but they want to rule it out.  Apparently the chromosome abnormality with this disease is at the G-level and will not show up on the chromosomal tabulation (we expect those results in 3 weeks).

The mucus comes from the tube!!!

On Monday we changed Auggie's tube back to a more basic type without a heavy anti clog bolus on the end that goes into his stomach. I had a feeling that his excessive vomiting was related to the tube he had - and lo and behold his vomiting has decreased since I changed the tube!! The doctors were dismissive and did not think that the tube itself was the issue...little do they know. You should have seen the tube they put in him after his MRI - the anti clog bolus was HUGE and the bottom was weighted - no wonder he was vomiting 7-8 times per day. Now with the new tube it's more like 3-4 times per day. It's still a 6 french but a much lighter 6 french!!

MRI Results

We've now heard back from the neurologist regarding the MRI and EEG - both look normal. However, on the MRI the radiologist noted that there was "mild prominence of the sylvian fissure" which means that the space between the temporal and frontal lobes is slightly larger than normal. The doctor did not think it was significant, but we have found medical studies that suggest a link between this so-called Enlarged Sylvian Fissure (ESF) condition and feeding disorders - it could help explain some of the issues we've been having. The EEG showed no signs of seizures which is great news. In 4 weeks we get the results from the genetic bloodwork. This last piece is important because it will help us rule out any chromosomal abnormalities that could also be causing the feeding disorder. Stay tuned!!

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.