A Day in the Life of Mason

Have you ever woken up in the middle of the night worried that if you got hurt or died or something horrible happened OR you just want to go to IKEA alone for a day no one would know how to care for your high maintenance child(ren)?  Casey is amazing and would be able to do this, but this has always been a fear of mine and it may sound silly but since Mason was born I have felt even more worried.  To help with this I am always telling Casey how I do things.  He laughs at me but a huge weight is lifted off my shoulders when I know I'm not the only one that knows how to do something.  Worrying aside, I just wanted to document all the fun new-to-me ways I get to take care of the sweetest little boy in world. 

Schedule

7 am- Wake up, change Mason

8 am-pull ACTH out of the fridge to warm up, get 3ml Topamax and 1ml Vitamin D in syringes

Mix 1 packet Prilosec with 15 ml of water.  Let sit for 2 minutes then draw up in a syringe. Give Mason the Prilosec FIRST since he has to take it 1 hour before next feed starts.  Slowly squirt it out in his mouth or put it through the tube. Give him the rest of the oral meds. If anything was given through his tube make sure to flush with 2ml water. 

Get supplies ready for ACTH injection: 2 alcohol preps, 1ml luer-lok syringe, needle, and tissue. Give injection. Put needle and syringe in sharps container. Put ACTH back in fridge! Give Mason big loves. Get food ready for other kids

8:30-Get Carly on the bus

8:45- Get Mason's formula measured out so it can start warming up. Add it to the feed bag and prime the tube. Hook it up to the pump and hang on pole. 

9:00- Start Mason's feed.  He needs to be elevated while he eats. Run the feed over 40-45 minutes. 

9:45-Unhook Mason and rinse out bag. Keep him sitting up for at least 15 minutes or else he'll throw up the feed. 

Next feeds are at 12,3, and 6. Make sure pump charges when not in use.

8 pm-pull out ACTH from fridge and get injection supplies ready. Also get Topamax ready.

Give injection and give Mason big loves. Change him into his jams. Get night feeds ready. Measure out formula needed for 9, 12, 3, and 6 o'clock feeds and pour into bag.  Put the bag into backpack with an ice pack behind it. Zip it up and hang it on the pole.  Connect it to the pump and make sure to set pump to feed him every 3 hours and slow rate of feeds down to an hour. Carry pole upstairs and put Mason in bed. 

relax, then fall asleep on the couch ;)

Food

Mason is fed on a pretty strict schedule every 3 hours (even throughout the night). He gets between 90 to 120ml.  It's a wide range because sometimes he'll throw up if he gets more than 90ml, but other days he seems super hungry and he'll only relax after 120 ml.  On most days he gets 100 ml.  He gets Similac Sensitive and thankfully our insurance covers it.  To make things easy I mix a large batch of formula every morning. I used to have to fortify Mason's formula to different calorie densities. The normal calorie content of formula is 20 calories per ounce but for a few months I had to mix his formula differently by adding less water to equal 24 calories per ounce.  As he started gaining weight better the dietitian lowered it to 22 calories and now he's on normal 20 calorie (thank goodness). I weigh out his formula to make sure he consistently gets the same amount of calories.

Then I add a 1/4 tsp of probiotics to the formula

Meds

This is the $30,000 per vial stuff.  ACTH a a corticosteriod and works very well at treating infantile spasms. It has a honey consistency, and is solid when cold.

The glorious Prilosec packets.  These keep Mason from throwing up constantly.

Side effects of ACTH: All day irritability, no sleep, no smiling, high blood pressure,  and high blood sugar, but IT'S WORTH IT! (only 2 more weeks of injections)

Topamax. Long term medication to control Mason's seizures. He'll stay on this for years.

2 weeks on ACTH

Some of you have asked for an update on Mason and how we're doing. My goal in all this uncertainty has been to try to be positive and optimistic and, because of all your prayers, it has thankfully been the norm for us to feel this way. As you can imagine there are some tough days. Randomly some days I'll get emotional when I see little boys running around or a baby holding her head up or a baby drinking out of a bottle or other things "normal" babies or children do. Carly had a basketball game a few weeks ago and halfway through I started crying and I had to take Mason out of the gym. I saw so many little boys playing basketball and it was really hard for me to watch.  When we found out we were having a boy I was so excited for Casey to have a little boy to play sports with. I know he can play with our girls too but I felt a big sense of loss for this part of Mason's future we were looking forward to. We don't know if Mason will be able to play sports, or be able to talk or be able to do anything normally. That has been the hardest part of all of this. People have asked when Mason won't need to have a feeding tube anymore.  This is also an unknown. We wish he didn't need one but we're grateful he has one so he can grow. Our answer to a lot of questions is the same, we just don't know yet.

Since Mason has been on the ACTH injections for the past 2 weeks life has been pretty hard for him which has made life hard for us. ACTH steroid therapy for Mason is 4 weeks long; 2 weeks of twice daily high doses and then 2 weeks of cutting down on doses and weaning him from it. We have gotten over the anxiety of having to give him the shots it's just the horrible side effects of the ACTH we're dealing with now. ACTH makes Mason really fussy and seem in a daze.  He doesn't full on cry but he moans and groans all day and night. His first few nights home from the hospital a few weeks ago he didn't sleep longer than a few 30 minutes stretches and the rest of the night he moaned.  It is the saddest thing ever to see your child uncomfortable and in pain and not be able to do anything about it! A few days last week I just turned up the TV and  radio really loud for some relief from his groans. The ACTH also raises blood pressure and blood sugar so we have a home health nurse that comes to our house 3 times a week to keep tabs on them.  I have been emotionally and physically drained. I wish so badly that my sweet little boy didn't have to go through this! On the other hand I have still been able to smile and laugh and do everything that I need to do as a mom (moms always find a way to do what they need to do!). 

 We don't have any answers to the cause of the seizures or a prognosis yet. In many children with infantile spasms the cause is unknown and prognosis is unknown as well. Some kids may respond well to treatment and then continue to develop pretty normally. On the other hand, some children with infantile spasms will grow up severely delayed. Genetic testing results will slowly start coming back to us and hopefully those will give us some answers as to why Mason is having seizures and what the future may hold to him. Thank you again for all your prayers and sweet messages and offers to help out. You all have been answers to our prayers!

Infantile Spasms

These past 2 weeks have been eventful.  Mason got croup and pneumonia and had to spend an afternoon in the ER, Holland and I got ear infections, and Carly had a 104 degree fever for 2 days.  Having a child with croup means sleep is non-existent for the child and the parents. It's very hard. Mason still has a bad cough but at the worst of the croup he was waking up every hour at night with coughing attacks and throwing up. Monday this past week Mason finished his 10 day course of Amoxicillin for the pneumonia and I got to take him back to the doctor to get clearance for g-tube surgery again. His lungs were clear and he got clearance for the surgery! I scheduled the surgery for November 30th. However, The excitement was short lived.  The g-tube surgery is again postponed until January this time. Here's what has been happening:

About 2 months ago I noticed that Mason had a very exaggerated startle reflex. I kind of brushed it off and didn't worry too much because he was only 2 months old.  After a few weeks it seemed like he was startling more which worried me because I knew after 2 months the Moro (startle) reflex starts to disappear not get worse! I googled it and came upon infantile spasms. If you want a good description look here.His startles didn't really resemble infantile spasms in that they don't occur one after another, they're more random throughout the day.  For the past month I asked pretty much every specialist I've taken Mason to about it, and everyone made me feel at ease about them.  I decided to make an appointment with a different neurologist (Dr. Mitra) so I could get Mason checked out before our next scheduled neurology appointment in January. I made the appointment at the first of October for the soonest available appointment which was November 19th (this past Thursday).

Here's a video I took of the spasms.  Go to the end of the clip (0:50).  See how it just seems like a startle? Most of the time he doesn't cry like this when he has a seizure.

Here is a better video I found on YouTube of infantile spasms:

I met with Dr. Mitra on Carly's birthday.  Mason threw up in her office as she was examining him, sigh. He had about 10 spasms while she was examining him which is good because she got to see them not just hear about them. Our appointment was supposed to be 60 minutes long but after about 20 minutes she said that Mason is having infantile spasms and he needed to get admitted.  That hit me like a ton of bricks. I felt (still feel) guilty that I hadn't trusted my mom instinct more when I first started noticing them. There's always the hope that you're worrying too much about something and everything is just fine with your child.  She told me that I could go home and pack but then I needed to make my way over to Cleveland Clinic Children's as soon as possible.  I cried the whole way home. I honestly felt bitter that my little perfect baby has to suffer so much.  Casey left work and picked up Carly from school early so I could see her open her presents before I took Mason in to the hospital.  I felt so sad that all of this was happening on Carly's birthday, but thankfully Carly didn't seem one bit annoyed.

When I got to the hospital my sweet friend Jessica was waiting at admitting for me.  She didn't want me to be alone.  She is awesome. We hung out in the room and different doctors came and talked to me and examined Mason. They said they needed to hook him up to an EEG to see exactly what his brain is doing.  The EEG techs didn't come to hook Mason up to one until 2 AM! Everything at the hospital takes at least 3 hours longer than you expect :) The next morning we met with the attending neurologist and epilepsy specialist.  Both of them confirmed the worst.  Overnight Mason had around 50 seizures.  These seizures were coming from different parts of the brain which is even worse.  They said they wanted to start medication that day, and expedite genetic testing.  The geneticist came that afternoon and started going over all our history and our family history and drew out our pedigree chart.  Genetics is fascinating. They drew Mason's blood to send off for first round of testing. We'll get results in a few weeks. The hope is that the genetic testing will give us the information we need to know why Mason is having seizures (and his other symptoms).  Seizures are an indicator of an underlying issue, and we have yet to pinpoint that underlying issue.  The neurologists think all of this could be stemming from his traumatic birth and lack of oxygen right after birth.  If the genetic testing comes back inconclusive that could be the answer. We also found out that the Prader-Willi test came back negative which is a huge relief.

Hooked up to the EEG.  They glued the leads on his head.  It took about 2 hours for me to get all the glue out after they took them off.

Hanging out with the EKG on.  We got to stay on the very cool 5th floor Epilepsy Monitoring Ward at Cleveland Clinic Children's. Most kids are hooked up to an EEG, EKG, and Pulse Ox on this floor. They have cameras in the rooms (kind of freaky) and everything is wired so the kids can be constantly monitored but be able to move around and play (kind of).  

                                       

As for medications Mason started on two to treat seizures.  For the next month Mason has to get twice daily injections of ACTH (a steroid) that Casey and I will give him.  He also got started on Topamax which is a long term medication for seizures. Since starting his medications he has been really drowsy but instead of having hundreds of seizures a day he has had less than 20.

Mason also had spinal fluid taken today that will be tested along with the blood work for his genetics testing.  It looks like we're in a wait a few weeks and see holding pattern right now.  It's great to see his spasms reducing, and nice to have a direction in trying to understand why he's having seizures.  So we'll hold tight while the experts do their testing.

Thank you everyone for all your support and love.  It has kept us going.  We so appreciate all your calls, texts, facebook messages, prayers, and smiles!!

Being realistic and getting a G-tube

Initially we thought Mason would only have the NG tube for a few months.  That was the doctors and us being hopeful.  While the NG tube has been such a blessing in helping Mason to gain weight it has also kept him from making progress in eating orally, and he chokes and coughs when he does eat which shows he still is aspirating. Like I said in my previous post, it makes him cough and gag ALL THE TIME.  If he gags he'll throw up about 75% of the time and his tube comes up whenever he throws up. When I say throw up I don't mean a baby spitting up.  I mean Mason throwing up multiple times most if not all of his recent feed. The NG tube keeps the sphincter from the esophagus to the stomach open which causes him to gag more and throw up more than a normal child.  It is so stressful to put that tube back in.  Mason cries actual tears the whole time.  Sometimes it takes me 3 or more tries to put it in which I'm sure hurts his nose and throat.  It is one of the WORST things I have had to do in my life. One day last week he threw up 5 times which means  I had to put his tube back in 5 times that day and it was horrible. In the past few weeks his vomiting has gotten more consistent.  He has thrown up at church a few times and whenever anyone comes over to our house he throws up. Just plan on seeing Mason throw up if you come to our house :) We had the missionaries over for dinner this week and as we were eating he started gagging and throwing up.  Poor elders. It didn't really phase Casey, me, and the kids but elders looked horrified and probably didn't want to eat anymore but they still did. A few days ago he threw up at the surgeon's office in the waiting room. When the nurse called his name she saw that his tube was out and looked freaked out.  I told her I just needed some surgilube and then I could put it back in.  She looked so relieved that I wasn't going to ask  her to do it! Thankfully I have gotten used to the vomiting and the tube coming out and it's just a part of life lately, but the distress that Mason seems to be in when I have to put the tube back in hasn't gotten better or easier. He seems to know what's coming and goes into full out distress mode when I touch his nose with the tip of the tube.  It is so sad.  I know people has to do harder things than this for the health of their children but for me this has been my hardest! Thanks for listening to me rant.

About a month ago I started thinking about a G-tube for Mason.  His therapy hadn't been progressing very well and some of his therapists mentioned his NG tube could be a part of the reason why. It also became more evident that he would have to be tube fed more long term.  That was a hard pill to swallow, but I at least had that at the back of my mind when he got the NG tube.  I talked to Dr. Postma about it at Mason's well check up and called and talked to Mason's GI about it as well.  Both of them agreed that a G-tube would be the best decision for Mason.  The GI sent in a referral to a pediatric surgeon and a few days later we met with one (Dr. Seifarth-watch this video about him: http://on.aol.com/video/most-beautiful-doctors-in-america-2013--dr--frederico-seifarth-517633517, haha). Dr. Seifarth was awesome and spent a lot of time talking to us and answering questions. He said in his opinion Mason would be a perfect candidate for a G-tube, but we (mostly Casey) were hesitant about the surgery aspect of it. He reassured us that it's a very simple surgery that only takes about 20 minutes and we'd only have to stay overnight at the hospital.  He did discuss the risks with us as well.  He said it's surgery and Mason will have to get anesthesia. Mason will also have a stoma (hole) cut into his stomach.  He'll take 4-6 weeks to recover and his stoma to heal. During that time he'll probably be irritable and in quite a bit of pain.

The G-tube is amazing though. The one that Mason will be getting is called a button.  The specific one he's getting is this one, a AMT Mini One. The round part (the balloon) sits inside the stomach.
                                                                   

 From AMTinnovation.com

  It's very low profile and made out of silicone. It is kept in by a balloon full of water.  When it's time to feed Mason I just hook up the tube (that I hook up to his NG tube now) to his button.  The tube locks into the button. Mason can play on his tummy with it, he can swim, I can still bathe him normally etc.  Mason will get a different button about every 3 months as he grows which Dr. Seifarth will put in. When his doctors decide that he doesn't need it we just take it out by deflating the balloon and the stoma will heal up on it's own.

Mason's surgery is next Wednesday and we'll be at the hospital until Thursday unless Mason doesn't handle his feeds well then we'll have to stay longer. Please pray for our sweet little boy. We feel your prayers. I have been amazed that I have been able to "handle" all of these unknowns for the past 4 months.  I know that I have been able to handle them because of everyone's prayers. My awesome friend Ashton has a son with a G-tube and she has been so helpful with giving me info and support.  Ashton shared this poem with me that I love:

WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved. I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

4 months!

Weight: 13 lbs 11 oz (13%-YAY!)
Length: 25.5 " (64%)
Head: 16.25" (38%)

Mason has grown up a lot the past few months.  He has gotten so much bigger! He smiles a lot more now and loves laying in his gym and batting at toys.  He hates being on his tummy but he can roll from his back onto his left side. He sleeps great thanks to his pump that just feeds him throughout the night. He sleeps from 7-7 which is heaven! Mason makes the cutest little baby noises.  He coos and says ma ma ma when he's sad.  He also purrs like a cat when he sleeps. He is so snuggly and loves his momma so much.  I snuggle and kiss him whenever I can.  He has been awesome at gaining weight on the tube, but I still have a love/hate relationship with the tube. I love that he is gaining weight and that I don't have to worry about weight as much. However, the tube makes Mason throw up a lot, and gag, and cough, and always sound congested. Whenever Mason throws up his tube usually comes up too.  I've thankfully gotten pretty good at putting it in and I've even done it a few times without Casey.

As for Mason's prognosis, we are still in the waiting game.  I take Mason to physical therapy, occupational therapy and feeding therapy every week.  Our physical therapist works on helping Mason to build up muscle tone (in hopes that it will help his swallow/suck).  In occupational therapy and feeding therapy we have an OT (Teri) and dietitian (Chris) who work on getting Mason to drink more efficiently out of a bottle. Mason can only drink a few ounces of thickened formula every day so we don't risk him aspirating. The problem with him only getting a few ounces orally each day is that it's becoming tougher to get him to drink out of a bottle. He's even worse at drinking out of a bottle than he was before... which could be due to having a tube down his throat, only being able to drink a few ounces a day, or the thickness of the formula. We don't really know. Chris sets Mason's feeding schedules, the amounts he gets and monitors his calorie intake and weight gain.  It's hard for me to feed Mason on a schedule.  I've always just breastfed or bottle fed my kids on demand and they would stop eating when they were full.  This tube feeding is totally different. Everything is set by the dietitian which I'm glad for because I would have no idea how much to give him.   Mason has had the NG tube for a month. Ironically my biggest worry lately has been the thought of him NOT on the tube because he won't be able to keep up the amount of calories he needs without the tube at this point.

Besides weekly therapy, I take Mason to see a neurologist every few weeks.  Mason's neurologist will be the most important specialist we will see for the next few months.  At this point we don't know if Mason is just behind developmentally or if he has a genetic condition.  Mason's biggest challenge is eating but he also has other symptoms that have his therapists and neurologist worried.  He doesn't have good eye coordination and he doesn't have good muscle tone (hypotonia).  While these symptoms aren't as worrisome on their own they are a worry for Mason because he has these issues on top of his weak suck/swallow and oropharyngeal aspiration. All the tests neurologists normally perform like head ultrasounds, MRIs etc. have come back normal for Mason which is good and bad.  I took Mason to another pediatric ophthalmologist last week (he saw one while he was in the hospital) to rule out any issues with the anatomy of the eye or poor eyesight and again everything was completely normal. Because all of these tests are coming back normal we're starting genetic testing. Genetic testing is a long process and we don't even get to see a geneticist until January, but last week Mason got his blood drawn to test for a specific syndrome (Prader-Willi) that his symptoms most closely resemble at this point (even though he doesn't have ALL the symptoms).  We find out in the next few weeks what the results are.

At this point I have been trying to be optimistic but realistic. Mason is who he is and who God wants him to be.  I have no control over this.  I've done everything I can and the rest is in God's hands. We love Mason so incredibly much and just want him to have the best care and best chance at happiness no matter what condition he has. Optimistically Mason could just be behind developmentally and be able to catch up in the future.  Realistically it will be a long, emotional process but I know that this sweet spirit is here for a reason and I feel so blessed to be his mom and carry him through whatever challenges he faces. We love you so much little Mason muffin.

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!

I can do hard things, I can do hard things, I can do hard things!

Mason is 6 weeks old today! We love this sweet little boy oh so much.  He is so relaxed and loves snuggling especially chest to chest. Mason has the sweetest little baby cry and can grunt like a crazy old man! Carly and Holland love their little brother so much.  Carly is a little more hands on than Casey and I want her to be. She is constantly trying to pick him up and rub his head and kiss him etc.  Holland has been my little momma helper. She is so sweet and helps me all day long by getting things for me and keeping me company.
Even though Mason has been the sweetest baby this past month has been tough for him (and us). Here's the long winded account:
The first couple of days after Mason and I came home from the hospital I noticed that Mason had a really rough time nursing.  It took about 5-10 minutes to get him latched on and once he was latched on I could tell he couldn't suck very well. My first thought was that he had a tongue tie, but I figured it was because he was a few days old and I didn't worry too much about it. Three days after we left the hospital we had a check up with Mason's doctor (Dr. Postma). Mason had dropped in weight from 8lbs 14oz from when we left the hospital to 8lbs 4oz in 3 days! I freaked out.  Dr. Postma wasn't too worried but we needed to bring him in the next week for a weight check. Dr. Postma also checked Mason's tongue and said he didn't have a tongue tie. During that week I nursed little Mason like crazy.  He didn't nurse long at all but I fed him whenever he whined at all. He was sleeping really well at nights (5-6 hour stretches) and I didn't really worry about needing to wake him up to eat.  Mind you this is my 3rd child that I have breastfed. Carly and Holland both were back to their birth weight plus more at their 2 week appointment so I figured Mason would catch up quick like they did.
 At his two week appointment Mason weighed 8lbs 7oz.  He had only gained 3oz that week of me trying to feed him non stop! Again Dr. Postma wasn't too worried because Mason had a rough birth and he said he should gain a lot in the next two weeks. Fast forward to Mason's 4 week check up.  I was thinking he gained a lot of weight and I was feeling pretty good.  He weighed 8lbs 14oz.  I thought that was pretty good but Dr. Postma told me that Mason had fallen into the "failure to thrive" category. He had gone from being in the 80th percentile for weight to the 20th percentile. The Dr. showed me the dreaded growth chart and how Mason's weight was opposite of what it was supposed to be: a rapid decline down to off the chart territory. I was so worried. Dr. Postma said I had to feed him every three hours at night and then bottle supplement him 2oz of formula or pumped milk after each feeding. I also had to go out and buy an infant scale and weigh Mason before and after each feeding to track how much he'd been eating.  I didn't think that was too bad except Mason hadn't had a bottle ever... He didn't even really take a pacifier.
 I went home thinking it wouldn't be too bad until the first feeding after the appointment. I weighed him, nursed him, and weighed again.  He gained 1/2 oz. ONE HALF AN OUNCE! Mind you he was supposed to be taking in 3 oz every 3 hours. I panicked and immediately pulled out a bottle full of pumped milk and started trying to feed him that...an hour later after forcing that bottle into his mouth he had only drank HALF AN OUNCE! I thought it must just be that bottle so I ran to Target and spent a small fortune on different types of bottles.  Next feeding I tried all those bottles and he wouldn't suck on any.  He would chew but not suck. I immediately contacted Mason's doctor and told him the weight and that Mason wouldn't take a bottle etc. He said to be patient and stop weighing Mason each feeding and just weigh him next week and let him know the weight. 2 days later (still no more progress bottle feeding him) I did a bad thing...I weighed Mason.  He hadn't gained anything since his appointment.  Cue panic attack. I immediately emailed his Dr. (It was Sunday) and wrote a crazy mom email to him asking him what was wrong and what I was supposed to do etc. He told me to meet with a lactation consultant and see what she says. It was at this point that I realized I hadn't even met with a lactation consultant.  At the hospital one came by but Mason was in constant care so she didn't watch me feed him.  I didn't worry too much about seeing one at the hospital because I assumed I was a breastfeeding pro.
 I made an appointment with an IBCLC for the next day.  At the appointment the IBCLC took one look at Mason's mouth and immediately said he had a tongue tie and she gave me a referral to a breastfeeding doctor on the east side of Cleveland that could help me.  While I was still in the room with the IBCLC I called this breastfeeding doctor (Dr. Witt) and made an appointment for Wednesday to see her.  I felt so relieved to know what was wrong and that I had a solution!
 Dr. Witt also took one look at Mason's mouth and said he definitely had a tongue tie and that was probably why he had issues eating.  She clipped it in office and I breastfed him right after.  He still had issues eating. He wouldn't latch on right and he still made clicking sounds while he was sucking.  I was beyond frustrated (and still am). Dr. Witt gave me all kinds of breastfeeding helps and tubes and syringes to help feed Mason.  I was overwhelmed. At this point I decided to give up on breastfeeding. I had already gotten mastitis in BOTH breasts over the past few weeks because he wasn't sucking well and now all I cared about was getting food into Mason so he could gain weight so the next day I tried bottle feeding all morning and he just couldn't latch onto the bottle.  He wouldn't suck on it longer than a few seconds so I changed my mind about breastfeeding :) After again talking to Mason's doctor and the breastfeeding doctor they both agree Mason needs to re learn how to eat with his "new" tongue.  They both also said that as he gains more weight he'll be able to suck better. The only thing they can diagnose Mason with is a "weak suck." They both told me to keep trying to breastfeed, pump and then get him to drink as much as possible out of a bottle.
 So for the past few weeks I've been a crazy person researching things online and trying to find a doctor who can help Mason. A few days ago I found out that Cleveland Clinic has an infant nutrition center in their children's hospital on the east side of Cleveland.  In this center Speech Pathologists, Occupational Therapists, Nutritionists, Gastroenterologist, and neurologists work together to diagnose and treat infant feeding issues!!!! Hallelujah! I immediately called my Dr. and got a referral and then called them and asked for the soonest available appointment. The receptionist said they were scheduling a month out.  I kept praying that I would be able to take Mason in sooner and after a few seconds of her looking for appointments she found an opening on Tuesday! So this Tuesday I get to take Mason into this awesome clinic and find out how I can get him to eat better! I'm so excited to be able to take Mason to people who can help him!
 I am so grateful for all our family and friends who have prayed and fasted for Mason.  We have felt peace and know everything will work out.  We feel so blessed and have so much to be grateful for! I'm so glad that while Mason has been super slow at gaining weight at least he IS gaining weight and staying hydrated. Last week Mason got back to his birth weight! That was a major milestone even though it took him 5 weeks!

Mason's Blessing Day!

Mason was blessed by Casey on August 2.  Casey's parents drove out from Utah and Casey's sister Tearsa and her family drove from Illinois to be here for the blessing.  It was so fun to have family be here for this special event!

Mason Garth Green

Our sweet Mason was born on June 26, 2015 at 6:59 p.m. weighing 9 lbs 2 oz, 20" long. On Friday morning I was scheduled to be induced at 6 a.m. Casey and I woke up at 5 a.m. to get ready. My parents got to our house at 10 p.m. the night before so they were all set to watch the girls for us. At 5 a.m. I got up and got in the shower. After I had been in the shower for 2 minutes Casey came and told me that the hospital just called and had to bump my induction back until later that day and they'd call me later and let me know.  Thankfully I was able to go back to sleep pretty easily.  The hospital called at 7:30 and told me to come in at 9.  It ended up being perfect because I could eat breakfast and spend time with Carly and Holland and my parents before it was time to go. 

We got to the hospital at 9 and the nurse got me hooked up to an IV pretty quick and then the waiting began... When I came in I was dilated to a 2 and about 80% effaced. My nurse started the pitocin at 10:15 and a house doctor came and broke my water at 11. I got an epidural at 11:30 and it made the right side of my body super numb and the left only a little numb.  My nurse came in after the epidural and told me that my doctor (Dr. Kraus) was expecting me to deliver at 1:30.  That lifted my spirits a little bit thinking that the doctor thought I'd have a quick labor. 1:30 came and went and I was only dilated to a 3! I was so frustrated. I just kept waiting and waiting and my body didn't want to react quickly to the pitocin. I couldn't feel anything and I was pretty comfortable but I was sick of waiting and feeling like I couldn't do anything to help the labor along. At 6:30 my doctor came in and said I was at a 9 and almost all thinned out.  She said she'd come back in 30 minutes and I'd be ready to push. I felt really bad because my doctor was waiting on me to give birth so she could leave with her family on vacation.  Her kids were waiting at the hospital! She didn't act rushed or frustrated though, which I was very grateful for. At 6:50 she came back and told me to start pushing. I pushed twice and Mason was born.  Dr. Kraus put Mason on my chest and he made a few sounds but the nurses took him away quick because he wasn't breathing well. 7 other nurses, nurse practioners, and neonatologists were working on Mason and I couldn't see him or anything they were doing. After about 10 minutes they wheeled him away to the nursery. Nobody told us what was going on.  My nurse and Dr. Kraus were great and kept smiling and said everything would be fine. Casey and I couldn't stop crying though. We had no idea what was going on with our new baby. We waited for 45 minutes until a neonatologist finally came in and gave us an update. Those 45 minutes were the worst of my life. I seriously had no idea if my newborn baby was alive or not. I just kept praying that everything would be okay and we'd feel peace.

The Neonatologist said Mason was having trouble breathing and they didn't know why. She said the only conclusion she could come to what that he "was shocked" when he was born and took longer to start breathing.She named a few things they did like give him an IV and a "fluid flush" and said that he was stable but he'd have to be in constant care for at least 24 hours and have an antibiotic regimen as a precautionary measure and to make he wouldn't develop pnuemonia because of the fluid that had been in his lungs. Casey was able to go see Mason in the nursery but I couldn't go until the epidural wore off.  I bawled when Casey left without me. I felt so helpless. I was supposed to be snuggling and nursing my new baby right now! At 9:15 I was finally able to go see Mason. I went and held his hand and talked to him and he looked at me the whole time and then closed his eyes and went to sleep. Mason's nurse told me that he wouldn't be able to eat for 12 hours. I was so sad. That night I started pumping every few hours.

The next morning at 9 my nurse told me I could go see Mason again.  When I walked in to the nursery the nurse told me that I could hold him and nurse him! I was ecstatic! I didn't want to put him down.  I just held him and snuggled him for about an hour. From then on they let me come and nurse him every 3 hours. Later on that day a neonatologist came and told me that Mason would need to stay in constant care for 48 hours and continue to receive antibiotics and then he wouldn't be discharged until Monday morning (I would be discharged Sunday night). I was crushed! I thought they were going to take his IV out and let him room in with me after 24 hours. I was so anxious to let Carly and Holland meet him, and I was so frustrated that I would be discharged before him.  The girls and my parents came to visit at the hospital on Saturday and they were able to see Mason a little bit through the nursery window.  The girls loved hanging out in my hospital room.  They thought it was the funnest thing ever. It was my dad's 65th birthday on Saturday so we kept the kids with us at the hospital for a few hours so my parents could have a break and go out somewhere fun. On Saturday night I walked down the hall to the nursery to feed Mason every 2.5-3 hours. During the day there were usually only 2-3 other babies in there but at night there were 12 babies! It was so fun sitting in there nursing Mason and hearing all the babies making noises.

On Sunday morning my nurse came and told me that Mason would be able to get his IV out sometime in the morning but that a neonatologist would have to come in and give an okay for it to be taken out.  The neonatologist was on call and the nurses didn't know when she'd come in to the hospital since it was Sunday. I was so tired of waiting and waiting on other people! An hour later my nurse came back in and told me that the neonatologist was there and she heard her say that Mason could leave that night!. I was so excited that Mason could come home when I did! Right after Mason's nurse came in pushing Mason into our room! He had all the cords off him and the IV was gone! I called my parents quick so they could come in and bring the girls to meet and finally hold Mason! Right after the neonatologist came in and said Mason is perfectly healthy, and she saw no reason to make him stay another night so he could leave that evening. I wanted to hug her! She said he had a rough start but bounced back quick and is doing great. We left the hospital at 6:45 to come home! It was such an awesome feeling to finally be home. 

Mason is now 1 week old and is the sweetest, best baby! He sleeps all the time. He sleeps 4 hours chunks at night and would probably sleep longer if I didn't need to wake him up to feed him. He rarely cries and loves just looking around contently while he's awake. We sure love our Mason muffin!!

Meeting my sweet baby boy for the first time.

 He was moving his head around and kept rooting. I was so sad I couldn't nurse him!

 Finally I got to hold my fuzzy baby

She's a big sister now!

Best Mom and Grandma!

Grandpa was so sweet to play princess and pony card games with Carly.

He loves bath time!