Keeping track of the past 6 months

I never meant for this blog to be a 'family' blog, but with so many people asking about what's going on with my baby J this is the best way to share right now.

See the little cutes up there? That's my little dude (taken this past week wearing his Olympic gear courtesy of Grandma and Grandpa)! He is almost 6 months old and boy has it been a roller coaster of events since he came into this world!

Before I really get into things here, I'm going to warn you...some of this is a bit TMI. If you're the queasy type, I'd stop here. Thanks for visiting! lol!

Right from day one, J was a puker. We were experienced with the puking type (or so we thought). Our daughter was a puker too, but WOW this was different! Not even 24 hours after he was born he projectiled onto a friend who was holding him. They put about 12 receiving blankets in the bassinet at the hospital to put under him and well...we went through all 12. And that was just from when he was sleeping.

He went to see his doctor when we first got out of the hospital but then we didn't have to go back to see him until J was 2 months. Between those two appointments I realized just how bad the puking was. At his 2 month appointment I practically begged his doctor to send us to a Paediatrician. At this point he was 12 lbs 14 oz.

We got the appointment with the Paediatrician pretty quickly and I guess we saw her around 2 1/2 months. Right away J was started on a medication that was supposed to help with the discomfort of the 'reflux' as they were calling it. He also had to go for a barium swallow where he had to drink chalky type liquid and they did x-rays. We continued to see the Paediatrician and just before Christmas we went back for a follow up appointment. We were supposed to be going in to discuss the results of the barium swallow and just see how things were going. It ended up that J had a cough and the Paediatrician was concerned enough about it that she sent us to the hospital and they had him admitted. Turned out he had bronchitis and we were in the hospital for 2 days with him on puffers, etc. At this point he was 4 months old and I believe he was 13 lbs 9 oz.

After another follow up appointment shortly after Christmas J started another medication (on top of the 1st one). Thank God for hubby's incredible (yet very strange) drug plan because J's meds are SUPER expensive! We had heard great things about this new drug and were excited to try it because we thought 'this is the miracle drug'. Well, I guess it doesn't work for all kids...J being one of them. January 20 is a day I will NEVER forget. Of course it was a day like any other since J's birth, he was puking. But that day he just seemed to puke so much that it was no longer white. Eventually it turned to clear, almost watery. Then while we were eating lunch, L said 'Mommy, what's dat brown stuff on da floor?' It looks like the watery puke that J had been doing but with a bit of brown gunk in it. Immediately I thought 'blood!' I grabbed a piece of paper towel to check. I wasn't 100% sure. The day went on and the brown gunk in the watery puke continued. By the time hubby got home I was saying 'it's definitely blood, what do we do?!?' By 7:00pm we were packing our bags and getting ready to drop L off at Grandma's house so that we could take J down to the children's hospital.

That was definitely the scariest day of my life since J was born, but at the same time it was as if God was using this opportunity for us to get in to see a specialist at the hospital. You see, just prior to this happening I was saying to my hubby 'next time we go to the Paediatrician I'm going to tell her I want a referral for the children's hospital, this has gone on FAR too long'. We were to go to the Paediatrician on the Thursday and all of this happened the night before.

We ended up getting down to the hospital at about 9pm. We saw the doctor in emerg at midnight and were released at 1am. They say that what they think happened is that he puked so much he must have caused a small tear in his esophogas. SUPER scary to a Mommy, but apparently not so scary to a doctor. Although I could barely understand what the doctor was telling me, I definitely heard him say to me 'this has gone on far too long. he is 5 months old! you need to be more aggressive about this.' He told me that they would be getting us an appointment with a GI specialist at the hospital but that I should be asking J's Paediatrician for a referral to a GI specialist as well. He stressed the importance of getting in to see the specialist within the next 2 weeks. Having worked for a doctor's office in the past I knew that this was pretty much a joke. Oh and btw...while at the hospital we learned that he had actually dropped 5 oz from a few weeks prior.

After getting home at 2am that night and sleeping for only a few hours we went to J's Paediatrician appointment. I went into that appointment fired up and ready to tell her that we needed to see a GI specialist within the next 2 weeks. After sharing this with her she may as well have laughed at me. She gave me this blank look like 'you've got to be kidding me' and basically said 'that's not going to happen'. Well, after much prayer by MANY people I got a call the NEXT DAY from the children's hospital saying that we had an appointment 4 days later (yes, 4 days!!) with a GI specialist.

We saw the GI specialist and it felt like a huge weight had been lifted off of my shoulders. I finally felt like we were getting somewhere and someone was listening to me! I was told that I needed to go off of milk and soy (that's the short list, you don't even want to see the long list!) for a month because I am breastfeeding J and obviously what I eat, he gets too. They were concerned that he may have an intolerance to milk and apparently about 40% of children with milk intolerances have an intolerance to soy as well. They also had me put him on 2 bottles of hypoallergenic formula a day. While we were at the hospital that day J had his first round of bloodwork. This was the first time that either of my kids has had to have bloodwork and it was NOT fun! I don't enjoy having blood taken myself, but seeing my little 5 month old boy have to have it done just broke my heart. To make matters worse, the nurse doing his bloodwork was having difficulty with it and had to page someone to help her (keep in mind that while this is going on, the needle is still in his arm and he is SCREEEEAMING!).

We saw the Paediatrician again shortly after the appointment at the children's hospital and for the first time in over 3 months, my boy had gained weight! 'I'm sorry, can you repeat that?? did you just say that my son has gained almost a full pound in just over a week and a half??' Yup, he had gone from 13 lbs 5 oz (when we went to emerg at the children's hospital) to 14 lbs 1 oz!

We are currently on the last week of the month of no milk, no soy. It has definitely been a HUGE challenge and I totally miss pizza, ice cream, take out, etc. But I know that it's just a small price to pay to figure out what is wrong with my sweet baby boy. We went back to the Paediatrician today and found out that yet again, our little dude had dropped in weight. He had to be weighed on 2 scales just to make sure. Apparently I had gotten it wrong the last time and he was not 14 lbs 1 oz, he was 14 lbs 4 oz. Today he was 13 lbs 15 oz. OK so things hadn't been drastically different and he was still definitely having bad days like before, but he seemed to be having better days with the puking. I thought for sure we had found our solution. It seems I was wrong.

So, we go to the children's hospital again at the beginning of March for an ultrasound and more bloodwork and then follow up with them at the end of March. In the meantime we are supposed to increase the amount of formula that he gets each day and increase the amount of cereal too. While snuggling with him tonight I prayed over him. I know that God is the only one right now that knows what is wrong with our precious boy and we need to fully trust Him that J will be ok. I was reminded tonight that it really is only by God's grace that J is still here. If you could see the amount that this child pukes up every day you would be amazed too that he was even able to maintain his weight for as long as he did.

And just a few tidbits of extra info that I have missed along the way:

- J's medications - 2 a month that have to be compounded (ie mixed by a special 'compoundist' shall we call them. lol!), he's given a 30 day supply of each and they expire after 30 days, they are each about $90...yeah, $180/month! again, PRAISE GOD for benefits!

- the amount of puke - I was asked by the doctor in emerg how many times a day J pukes. I averaged it out one day and it was about once every 5 minutes. how much you ask? about a tablespoon-ish or more per puke.

- poop - so he pukes a TON, but he doesn't poop often....probably because he doesn't have that much to poop. but when he does go it's a pretty awful thing.

- sleep - once again, PRAISE GOD! J is an AMAZING sleeper! since about 2 months (around the same time that things started to get crazy with J and all these appointments) J has slept a full night (7:30-7:30) and had about 5 hours worth of naps each day. I swear that is the only thing that keeps me sane!

- appointments - we seem to have about one appointment each week for J. I dream of the day when we don't have to go for any more appointments!

If you've made it this far, I applaud you! Whoo, it's good to get all that out and allow people to read it if they want to. Thank you to everyone for their support, offers of help, etc. Please continue to pray for our little dude!