HOME! And SO grateful to be here!

After just over a week in Paediatrics at the hospital, we are SO glad to be home! Although I do (absolutely!) realize that there are SO many more children in there that have it SO much worse than J (I can't even begin to think about the many children without getting emotional) and have been in there SO much longer, I am grateful to be home tonight. Home with REAL food, bed linens that don't make our skin red and really itchy feeling (poor little J and his cheeks!) and of course another big thing that we haven't had in over a week - the 4 of us in the same spot for longer than 1/2 an hour.

Forgive me if any of this seems scattered. The past week has been a bit of a blur. I wish I could have updated from the hospital, but alas...no wifi. So...here goes...

This past Sunday as I was writing my update on J, his Daddy was with him continuing our 'puke count' as we had done the day before. Pretty sad that we had to do this to basically 'prove our case' to the Paediatrician after seeing her for 4 months, but it helped for sure. On Sunday we counted over 65 pukes. I nearly choked saying it - seriously??? 65?!?!

We weren't sure when he would have the barium swallow done on Monday but we knew that he had to fast for 4 hours before hand and the first appointment is at 8am. So, I woke J up early to feed him but then it turned out that his appointment wasn't until 1pm. I fed him one last time at 9am and then was told 'no more' until after the test. Thankfully J is a HUGE fan of the ladies and was absolutely amused by all of them in Paeds while we waited. In between we also had an ultrasound done on his head just to rule out any neurological issues. Towards 12 he started to get fussy and we were called down early for the test. But...still waited until 1:30 to actually have it done. They did the first set of images and then wanted to have him wait a few minutes and do some more. At this point a friend from church arrived - yeah! another distraction for J! He was happy to see a familiar face. After the 2nd set of images were done I was able to take him upstairs and feed him but I had to bring him down about 20 minutes later for a 3rd set. By the time he was allowed to eat I think it was 2:50. Felt so bad for the little man, but he was SO good about it. The results from the head ultrasound came back fine and the barium swallow showed that his stomach was slow to empty. Guess that explained why when he pukes it doesn't look like it's been digested and also why there seems to be so much of it.

Somewhere during the week (I guess it was Tuesday) we saw a Dietician who figured out a whole new 'diet' for J to help him pack on the pounds. We have to be pretty strict about following it, just like someone who is trying to lose weight. She dropped the plan off to my hubby while I was out with L having dinner, etc. When I arrived back and looked it over my first thought was 'and how do I fit into this?' meaning, how does breastfeeding fit into the schedule?? She had down that he needed to start his day with a bottle of formula, then cereal and go back and forth like that throughout the day. I immediately broke down in tears. I had made it so far with nursing him and now I was just going to have to drop it just like that?? For some this may not seem like a huge deal, but let me tell you...it's huge! Not only is it painful physically to stop on a whim, it's also difficult on your emotions. Although a few of the nurses that I spoke with that night agreed with me that I could continue breastfeeding I was apprehensive that the Dietician would agree and so I sat down that night and fed him for what would be the last time. I have always ALWAYS wanted what's best for my boy, don't get me wrong...it's just that I didn't expect to have to be told that I would have to stop breastfeeding him. I thought 'oh I'll stop around 7 months' and I'll do it when I want to or when he's ready, etc. But to be told basically you're not allowed to...WOW! Anyway, enough of that.

So Wednesday we started on the new diet. He gets small amounts of food more often (funny...didn't my hubby say that to the Paediatrician just days before and she said no???) - 5oz of formula mixed with some baby cereal first thing in the morning and then 2 1/2 hours later he gets a few Tb of cereal mixed with a bit of formula by spoon. This is repeat through the day with his last feed at 10pm. The first night he fed at 10pm and woke up at 4:30am. This morning he was up at 3:30am. Yawn! My little man that had gone from sleeping 7:30 - 7:00 was now only sleeping about 5 1/2 hours. The nurse commented that this was 'normal' for someone his age...but definitely not 'our' normal. I'm interested to see what he does over the next few days after being at home and back on a better napping schedule and not being interrupted to check his vitals.

Did I mention before that my Mom ran into my aunt's sister in the cafeteria at the hospital on the weekend and she suggested that we ask to see a specific Paediatric GI specialist? First let me tell you how cool it is that she ran into her there. After speaking with her tonight I know absolutely 200% that it was no coincidence whatsoever that they saw each other. This woman only works part time and switches between the hospital and working across the street. My mom was only down in the cafeteria for a few minutes. In my whole time at the hospital I haven't seen this woman AT ALL. How INCREDIBLE that my Mom would bump into her?!?! That was DEFINITELY God's timing and He deserves all the praise for what came of that situation! My Mom mentioned to my aunt's sister that J was in Paed's and why we were there, etc and immediately she told her what she would suggest. After getting the results of the tests on Tuesday my hubby asked our Paed for a referral to this GI specialist (this was on Wed). Yesterday (Thursday), she met with me for about 1/2 an hour. We talked about EVERYTHING that had been going on over the last 6 months. She is amazing! It's hard to explain what she wants to do and why, but let's just say we are getting somewhere!!! AND even more incredible - we are seeing immediate results! Especially in the poop department. lol! No more of this 'oh give him prunes' garbage (which uh...hello! that doesn't exactly work if he's just going to puke it up!). Since giving him this stuff that the GI specialist wants him on he pooped half an hour later! YEAH!!! We have to set up an appointment to see her in her office within the next 2 weeks (a squeeze-in of course because she said that normally it would be about October before she could see us. WOW!).

The computer battery is about to run out on me, but let me just once again say thank you SO much to everyone for their concern and more importantly their prayers! I can't tell you enough how much God answered SO many of your prayers for us over the last week. NOTHING is a small concern in God's eyes. Our little man is putting on weight, slowly, yes, but he's not losing! AND he's puking less! INCREDIBLE! Please continue to pray that he will just improve as time goes on. Good night! :)

Update on J

I'm home from the hospital for a few minutes to have a quick shower, grab some more clothes and have lunch with L. Hubby has swapped spots with me and is looking after J. Just wanted to give a quick update because I know that a lot of people have questions and want to know what is going on. J has now been in the hospital since Thursday night (3 nights). We have had some AMAZING nurses, some of which we had the last time we were in the hospital (before Christmas). God has really worked out their shifts well because the really supportive nurses have been there during the day when we've needed them the most. The days have kind of blended together in my memory so I can't really say when certain events have happened, but I can say that the following has been done since Thursday night: - bloodwork (came back normal) - ultrasound on the abdomen (came back normal) - echo cardiogram (not sure of the results yet) Prior to this hospital visit J had a barium swallow done that showed severe reflux. When J woke up yesterday I immediately started to record each and every single puke. He woke at about 6:30 yesterday morning and when you factor in naps, feeds, etc (times that he doesn't puke anyway) he was awake for about 9 hours. In that 9 hours, we recorded over 40 pukes. No, that's not a typo. I said over 40. His day nurse was astounded by this. Thankfully she was in again as his day nurse today when the Paediatrician came in to give updates and check in. Yesterday I explained to the nurse how frustrated I was with the whole situation and that I was not leaving the hospital without a solid answer as to why this is happening and more importantly, what we can do to help him. Praise God she agreed to be in the room with me when the Paediatrician came in this morning because I needed the extra moral support. When the Paediatrician came in this morning I laid it all out for her. I cried through my words, but I got it all out. I told her EVERYTHING that I wanted to say. Again she told me that kids like J will puke until they are 1-2 years and basically as long as he's gaining weight she's happy. I flat out told her, 'that's not good enough for me'. I want more testing done to determine what is wrong with J. Again she tried to tell me that we knew what was wrong with him, but I explained that this has been going on for 6 months (his whole life) and we've tried every stinkin thing in the book at home and I KNOW as a Mom that there is something more to it than this. So....we're doing the barium swallow again. This time it sounds like we're going to do a more thorough one where they look at him again after a few hours. Sounds like they are also going to do a head ultrasound (unless that's just what I heard due to lack of sleep, etc). Not sure why the heck they're doing that, but I'll ask them when I go back today. Anyway, that's where we're at. Need to have my shower and spend some time with my girl while I'm home. She's missin Mommy and her little J. If you're feeling like visiting, please do because well...it does get lonely :), but please call first (our room at the hospital or the house) because we can only have 2 people in the room at a time. For now we are the only ones in the room and J isn't contagious (obviously. lol!) so you don't have to worry about catching anything. Also, visitors have to be healthy and over the age of 18. Visiting hours are from 2pm - 8:30pm. Thank you again for your prayers and concern! God has definitely been changing me lately and we continue to seek Him in this. He has given me especially the words to say to the right people and they in turn have rallied behind us to provide the best care for J possible.

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!