Mason Update

People have been wondering how Mason has been doing.  I've been putting off writing an update because we've had multiple doctor appointments each week and I'm waiting for someone to be able to give us some answers. For those who don't know what's going on here's the short of it: Ever since Mason was born 2.5 months ago he has had problems eating. Right when we brought him home from the hospital I could tell he wasn't breastfeeding well.  He kept breaking his latch and he would cry a lot while I tried to feed him.  Turns out he had a tongue tie that we got clipped when he was 5 weeks old.  Kids are supposed to automatically start sucking better after a frenulectomy but Mason didn't. People kept telling me to just give him a bottle but he couldn't even suck out of a bottle and he acted like he didn't even want to eat. We tried out every single bottle out there.  Every. Single. One. We finally found one that he could drink out of (a Nuk), but he still acted like he didn't want to eat.  He'll drink 1 oz and be done. He was born at 80% for weight and is now at 4%.  This obviously is not normal so we've been on the search for answers.
A month ago I started taking Mason to a "feeding team" at Cleveland Clinic Children's hospital. The team is an occupational therapist, dietitian, and nurse practitioner. On the first visit they diagnosed Mason with silent reflux and said that is the reason why he doesn't want to eat more than 1 oz each feeding. He started taking Zantac. The occupational therapist worked with trying to get Mason to have a better latch on the bottle so he could eat more efficiently.  I met with Dr. Postma (Pediatrician) a week later for a weight check.  The thought was that the Zantac would help with the reflux and then Mason would eat more and gain weight. At the weight check Mason had only gained a few ounces (goal is 1 oz a day). Dr. Postma told me he didn't think Mason had reflux but if I wanted to keep Mason on the Zantac I could.  He also wanted to start Prilosec to see if that made a difference. I had a follow up with the feeding team in 2 weeks so he said to call him after that follow up and we'd talk possibly admitting Mason to the hospital for testing if he hadn't made progress. At the feeding follow up Mason hadn't gained significant weight. Side note:  I can't even put into words how much I hate baby scales now.  They give me anxiety. I know every scale at the pediatrician's office and which ones are accurate and how much the other ones are off.  I'm going to throw a scale burning party and burn our infant scale when I get to stop weighing Mason every day!! So I talked to the feeding team which is a group of nice ladies and told them how Dr. Postma wanted me to call him after this appointment and he'd decide whether to admit Mason or not.  They thought he was crazy and they said to ask him if I could take Mason to a GI first. So after the therapy appointment I got the referral to the GI.  Dr. Postma also wanted me to take Mason to a Neurologist to rule out a neurological issue. I called to make an appointment with them and GI couldn't get me in until the end of October! I got an appointment with the Neurologist for the next week.  At this point I'm up for seeing any doctor so I happily took Mason to the Neurologist, Dr. Jacobs.  Dr. Jacobs is the sweetest doctor I've ever been to.  He is probably 80 years old and you can tell he loves his job.  Before this appointment I honestly didn't know what a Neurologist would be able to help with but I'm really glad I took Mason to him.  He checked all Mason's reflexes and said everything neuro-muscular looked normal but he does have hypotonia which could be because of poor weight gain at this point.  He said when Mason is 4 months old he'd be able to do some more testing but at this point he looked good. I called Dr. Postma after the Dr. Jacobs appointment to see what the next step was.  He said he'd call GI and try to get Mason in sooner.  I got a call a few hours later from Cleveland Clinic Pediatric GI saying they could get Mason in the next day! Thanks Dr. Postma!
The GI appointment went pretty well.  Dr. Kurowski said Mason doesn't have reflux.  I kind of questioned him and he said he's tired of doctors and nurse practitioners prescribing reflux medication just because they don't know what else to do.  He wanted me to stop with the Prilosec and he ordered a bunch of labs and a modified barium swallow plus he wanted Mason to start speech therapy which he thinks would be better than occupational therapy. He said after all those tests he wants to do an MRI.  I was glad that he ordered all the blood work and swallow study but he made me question a lot of stuff people had told me.  Up until this point I was told Mason had reflux and once it got controlled he would eat better and gain weight.  Therefore before this appointment Prilosec was what was giving me hope and Dr. Kurowski crushed those hopes! Now I feel like we're back at square one and it's tough. I'm glad Dr. Kurowski is doing a bunch of testing but I've been confused on who to trust.  I feel like I should trust the pediatric GI because he's a specialist but I want to trust the feeding team because their diagnosis is a lot easier to swallow (pun intended)
I went to get all the labs done on Friday.  Hell is watching your newborn baby get blood drawn.  The lab techs had to calculate how much blood they could get for each vial because if they got all the labs they needed they would be taking too much blood.  They had to get blood from each of his arms :(
Right now we're waiting on the lab results to see what to do next.  In the meantime I'm trying to get as much food into Mason as I can.  I take him to occupational therapy at Cleveland Clinic Children's hospital every week now, and I've been fortifying any milk he gets from a bottle to try to boost any milk he does drink.  I've still been nursing him and then giving a bottle afterwards.  We're hopeful that someone will be able to help us we're just hoping it's sooner rather than later. We are so grateful for all the kindness and support of all our family and friends.  We feel so blessed to have such a great ward family who has been taking care of us.  Please keep little Mason in your prayers!