Coffee Ground Vomit and I Don't Get Along...

Wyatt is ready to go golfing with Daddy!

So yesterday I put this status update on Facebook:

If you think about it, please pray for Wyatt tonight. This afternoon he had an empty stomach but managed to throw up a measurable amount of the brown coffee grounds (blood). It hasn't happened since but GI wants us to come in first thing in the morning. We've had almost 3 months of almost never throwing up but we've had to up his formula intake because I stopped pumping this week and his body is having a hard time getting used to processing the increase in formula. (I've got a stock pile so the mixture is about 2/3 30 calorie breast milk and 1/3 full 30 calorie formula) and the total daily volume has gone up to. I'm scared to go out with him bc of the puking. So sad for him, he hates it so much! And (last one, I promise) tonight he is sleeping with a special pulsox machine that records his heart rate and oxygen levels and if he does "good" according to his pulmonology doctor, he will no longer "need" oxygen and we can have the medical supply company pick up ALL the tanks! Yea! Thank you for keeping us in your prayers. We praise God for Wyatt's growth and progress every single day! :) 

Here is our update:

Wyatt had a good night.  No more throwing up and no more blood.  Praise God.  Thank you for praying.  The mere fact that we go in to see our GI doc this morning first thing is a miracle.  She doesn't usually have open appointments let a lone first thing in the morning, they usually add them to the end of her day.  She said we must be special.  I agreed of course.  We love our GI doc and she loves us!  If you're in the Dallas area and need one, let me know- I recommend her!  Anyway- she said Wyatt coffee ground vomit could have been any one of several things.  i introduced butternut squash yesterday for the first time (she said this was an unlikely reason but maybe and to try again in a few days and for 3 days in a row and see).  It could be the increase in volume and formula.  His body needs to get used to processing and breaking it all down.  So, Dr. A increased two out of three of his reflux meds.  She didn't do this last week at our appointment because at that time he didn't need them increased (I agreed, things were good- very minimal vomiting at that time) and she was going to let him wean himself off by outgrowing the dosage.  I'm all for that happening if he can do it but with the increase in formula/volume, he is just not ready yet.  The third possible reason for this episode could be g-button irritation.  She is his GI doctor but she is not a surgeon so she can look at it and say it's a possibility but the surgeon is the one that needs to really make that call.  She did tell me somethings to look for.

She also called the dietitian in to go over Wyatt's plan of action for his feeds.  We did have on major miscommunication, totally my fault but we still needed to fix it because of his vomiting.  We went from literally little to no vomiting to throwing up almost every feed and at night.  It sucked and I was already adjusting my frame of mind to not going anywhere with Wyatt because I didn't want him puking all over me, himself and the floor of some public place.  BUT with these adjustments, this should not happen.  Praise God!  I am so thankful for getting to go back in.

So, the original plan of action called for Wyatt daily intake of milk/formula to go from 690mls / day to 810.  That is a lot in our little world.  :-)  To break it down a little more (wish I could insert an excel chart here...) at night Wyatt was getting 385mLs over 9 hours (a rate of 43/hour) and 3 day time feeds of 100mLs (I had pushed the rate to 101mLs/hour putting the feed right at an hour).  He was not just tolerating it but able to play, bounce, jump and lay flat without throwing any of it up.  Life felt good and somewhat normal.  I was not complaining.  And with the new volumes it put the night feed at 450mLs at night over 9 hours (a rate of 50) and the three daytime feeds to 120mLs pushing the rate to 120mLs/hour as well.  This is an aggressive plan.  I am a fan of aggressive as long as Wyatt can tolerate it comfortably and we don't know what he can handle until we try, right!?!  :-)

With those 2 changes, I also requested how to transition Wyatt from my breast milk (fortified to 30 calorie with formula) to formula only.  This was a really hard decision for me to make but it is time for several reasons.  We put our house on the market on the 30th of this month and there is a lot to do in preparation (we have painters  and landscapers here as I type...) then to have showings where we (Wyatt myself and our 100 lb doberman) will have to be out of the house off and on who knows when or how often, packing, keeping the house in perfect order and looking for an apartment and a new house all at the same time.  Oh, and let's not forget Speech Therapy, Occupational Therapy, other doctors appointments and playing and taking care of Wyatt in general... Wyatt's gotten 9 full months of breast milk and I still have more in the freezer to continue using.  He has the milk allergy and as hard as I try, I can never truly know if something has the milk protein or not.  Yes, I could eat at home 100% of the time and know but let's be real, James and I like to eat out and waiters don't know all the time.  They try but you'd be surprised at some of the things that have milk.  It's more than ridiculous!  I felt so much guilt when Wyatt started throwing up, questioning my decision but I know ultimately it's what is right for him and us as a family.  I have to remind myself of this and just rest in the peace of knowing this really is what is best.  :-)

Day one I went all out and did it all.  450 mLs at night with the rate of 50 / hour.  During the day Wyatt received 120 mLs at a rate of 100 / hour all half fortified breast milk half full 30 calorie formula mixed together.  Whew- lots of throw up.  His little body did not like all those changes.  So, I immediately pulled back some before today.  The next night I mixed 2/3s fortified breast milk and 1/3 formula and only gave him 400 mLs but still at the rate of 50 / hour.  I've increased each night by 5 mL (last night Wyatt received 420mLs total and did great).  The dietitian wants me to slow him down there and instead of a 5Ml increase a night go to a 10mL increase over a weeks time.  For the three day feeds we will slowly work our way back up to 120mLs total volume and a rate of 120/hour.  Today I'll start Wyatt at 102 mLs total volume and increase his feed by 2mLs each day as tolerated and once we get to 120, I'll then increase his rate slowly as tolerated.

I give all these tedious details for all the tubie mommies out there.  You never know who is going to have the same problem and it's interesting, to me at least, to know what other kids are capable of tolerating and learning from them too.

Wyatt is doing great and I don't think he ever even felt bad.  I'll post his 9 month pictures and milestone updates very soon!  Just wanted to update everyone and THANK YOU so much for all your prayers.  They've been answered and we hope he continues to accept this new feeding regimen.

I won't know the results of his possible removal oxygen removal at home "sleep study" until they pick up the pulsox and send the data over to his doctor.

Doing laundry wore out Daddy and Wyatt! 

Playtime!

Thanks for praying for Wyatt!!!

7 Months, 1 Week and 2 Days... or 224 Days

However you look at it, I am thankful for each and every moment we've had with out handsome son, Wyatt.  God has really been generous to our small family.  I cannot believe it's been as long as it has and at the same time, it's hard to remember what life was like before Wyatt was here.  Well, I do remember what it was like to go to work every day and I don't miss that 5 am alarm one bit.  Haha.  Loved my job and loved and miss the kids but I'm doing what God built me to do, and that's being Wyatt's mom and James' wife and taking care of them both.  

So, how is Wyatt doing?  He is doing great!  Let me update you!  I'm just going to break it down by doctor, seems to be the easiest since we have SO many!  (By the way, if anyone here in the DFW area ever needs a peds doc, let me know, I might be able to recommend one or ten.  :-)  

Pediatrician:  She feels like Wyatt is doing good.  He is gaining weight like he should.  At his 6 month appointment he was on his growth curve, which is good.  He's still in the 3-5% for weight and height and <3% for head circumference with his actual age (from the day he was born).  BUT... with his adjusted age (from his due date) he's in the 5th percentile for weight, 50th for length and still 3rd for head circumference.  These numbers seem disappointing BUT they aren't to me.  Wyatt is on his curve and slowing closing the gap... it's a gigantic gap but it's still on the up and up!  :-)  Think positive right?!?  We go in for a weight check next week!  Yippie!   We are also watching his head shape.  He started to get a flat (and bald) spot on the back and so we've tried to keep him off the back of his head and sleep him on his side and stuff like that!  :-)  

Pulmonalogy:  (lungs)  We saw Dr. Sah in January and he said Wyatt was looking good.  He wouldn't take him off oxygen because it's still winter/flu/rsv season but he did say we could take his cannula off while he's awake as long as he sats good!  And godo news, he's staying above 92!  That's the goal. I usually lay Wyatt down for bed at 7 (sometimes earlier and sometimes a little later- you know how it goes!) and Wyatt does not like me putting that thing in his nose.  If he is awake, James has to help me.  he doesn't throw a fit or cry or anything, he just jerks his head back violently and it's super difficult and I feel like I am scratching his little nose.  :-(  So, I wait until he's sound asleep and then he just kind of flips his head back and forth and I get it in and taped down without him waking up.  :-)  We return to him in April and I fully expect him to take Wyatt off oxygen all together or to as "as needed" basis.  This is what I am praying for, for sweet Wyatt.  :-)  

I also cannot remember if I've ever mentioned this before or not but we visit this office once a month for the RSV shot.  We have ONE more left... that is super exciting because that means RSV season is ALMOST OVER!  Isolation restrictions will be lifted and we will just proceed with great caution! :-)

Cardio:  I don't remember if I've updated since the last time we went to cardio because we have not been since December   She said she didn't need to see Wyatt for four months!  That's always good news in our world.  Just to recap, she felt like his PDA (small hole) is small and maybe even a little smaller.  She didn't feel, at the time, that he needs surgery and just wants to continue to watch to see how it does.  We were good with that.  I am hoping and praying he does not need that surgery.  It's one of a potential 5... I will say, I have noticed that his regular heart rate has slowed down quite a bit since we've come home from the NICU, awake and sleeping.  

Urology:  I haven't talked about this one online at all because I felt like it might not be necessary and wanted to save Wyatt from any potential "embarrassment" in the future but now it's kind of important and we've been transparent thus far, so here it goes... When we had Wyatt, I was in a recovery room (for 5 freaking days... not a normal postpartum room) and a NNP came in and said, "XY, it's a boy!"  James and I didn't say anything at the time but we were like, "Uh, duh! We've known that since 16 weeks..." but she continued to tell his that his testicles had not dropped yet so they ran test just to make sure he in fact was a boy and that nothing else was wrong... thankfully, he is truly a boy.  :-)  Then later on, they still had not dropped and they weren't sure if they had developed so they had some blood work done to see if they were in his little body somewhere, and again, praise God, they were.  Fast forward to now, they still have not dropped.  They can be felt and they are close but not close enough and the urologist says that they would have been in place by now if they were going to move.  So.... this news = surgery.  The doctor made it sound like it's a pretty standard, I can do it in my sleep thing.  I'm hoping that's exactly what it is, in and out and never a problem again.  He did say that it could be one surgery or up to three.  I guess he doesn't know until he gets in there.  He also said that when both testicles fail to descend, something has gone wrong.  He said there is a chance Wyatt could lose one of them.  Please pray this does not happen.  Also, there is a 40% chance for infertility.  Again, please pray this is not the case.  We of course wouldn't know about the possible fertility issues until he (hopefully) gets married and tries to have kiddos with his wife.  Surgery, for the normal kid would be an in and out and recover at home procedure but with Wyatt being Wyatt and having to go on the ventilator  he will most likely have to be watched overnight.  James and I are also hoping that being put back on a ventilator, for any amount of time, doesn't give us any set backs with breathing or eating!  

ENT:  Wyatt had a sleep study done in January.  They goo-ed and taped him up good.  It was so gross but Wyatt, as usual, was a champ and just went with the flow.  Per those results, Wyatt had a nasal scope (I am totally not sure if that is what it is called or not, but that is what they did- stuck a camera scope thing down his nose, while I held him in my lap) and he needs a surgery.  His adenoids are a little large and he has some floppy tissue on his voice box.  She is going to remove both of these things.  The adenoids can be problematic and cause throat and ear infections and the floppy tissue blocks some breathing.  We were concerned with these results and wondering if this was a "neccessary" surgery but anything blocking any breathing, I feel like is important.  I want to give Wyatt every advantage in the lung department I can to help him with growing!  This was also made out to be a "I can do it in my sleep, no big deal" surgery.  It's an hour long and for a normal kid, recovery would happen at home but again, we aren't normal and Wyatt will probably stay over night to be watched.  We have the same prayer request as for urology- that this does not create any backslides in his progress or development.  :-)  

The good news for both these surgeries is that the doctors are coordinating so that they can be done at the same time and Wyatt only has to be put under once and on the ventilator once!  Praise the Lord.  As of right now, surgery is scheduled for Tuesday, March 26th!  :-)  

I also want to add that no matter how "minor" or "easy" or "regular" a doctor says or portrays a surgery- I'm not a doctor and they are all a big deal in my book.  If you've never sent your child, let a lone, you infant back into surgery, you have NO idea how scary it is.  I've watched Wyatt be wheeled away from me at day 5 of life and day 97 of life.  Neither of those times were easy.  It was the exact opposite.  The hardest thing I have ever done in my life and I can't imagine it getting any easier, ever.  Thankfully, we believe in a God that is in control of all things and He gives us strength.  

Ophthalmology: (eye surgeon- not regular eye doc) We, well, mostly James, noticed that Wyatt's eyes often were not centered when looking straight.  I had to go back and look at pictures and then, I too noticed what he was talking about.  Also, a while back when we went to the ER, the doc mentioned we should bring it up at our pediatrician's the next time we go in.  So, we did and she sent a referral.  That doctor just want to watch and see how things develop.  We go back to her in early May.  If it's still a problem she said something about trying out some glasses first for a few months and if that doesn't correct the problem, then it's require surgery.  Hopefully that's an easy one like LASIK or something... I don't know, I didn't ask.  We'll cross the bridge when and if we get there.  

GI:  This was a big appointment.  Lot's happened with the dietitian here.  But first, the fun news!  Wyatt, in a matter of 20 days gained 19.5 ounces, totaling 14 pounds 2.5 ounces!  That's wonderful!  The basic goal for him was an average of half an ounce a day and he doubled that!  So thankful!  :-)  He, at the time measure over 26 inches in length!  This was all at the beginning of the month, so who knows where he is now!!!??!!!  His GI doc is awesome.  We really like her.  She's is realistic and positive and loves Wyatt.  

I got to spend a lot of time with the dietitian, which was needed and we got to really work on his feeds.  Wyatt hadn't had an increase in his daily milk intake since before we left the NICU.  She was actually surprised he had still been gaining like he had.  And she asked how I felt about the way his schedule was set up- always nice to have input and to not just be told.  We left his night intake at 60% of his daily feed and continuous but just upped the rate.  She was aggressive and I like that.  She had us go up 1 mL an hour a night until we got the feed down to 9 hours instead of 11.  We start at 10pm and it ends at 7am now.  That is nice, it's when he wakes up.  So, now instead of trying to keep him still for basically 2 hours so he doesn't throw up, I get to get him ready for the day when he wakes up!  It's really nice.  Makes our start much smoother.  For those of you on a g-tube, our rate is 43 mils an hour, total volume 385 mils.  As for the day time feeds, she wanted to be aggressive too!  I've gone up 1 mL an hour each day instead of every few days or so.  He's done great with it.  One time, I held for a couple of days since there was a small increase in throwing up.  She also wanted to increase the total volume, from 85 mils a feed to 100.  She said to just take it up a little at a time.  We're at 95 mils right now.  Wyatt is up to 62 mils an hour and going up!  :-)  I would like to see him take his entire feed in an hour or less... we'll see if we can get there.  I'm praying.  :-)  

Wyatt is also eating cereal (rice & oatmeal) and purees.  I bought a baby food steamer/processor (thanks for my generous MIL) and made some but decided to wait to continue to make more.  I have bought some of the organic pouch baby foods to try out different flavors.  That way I don't waste time, money and energy if he won't any of the food.  It also saves freezer space.  :-)  I started with veggies but have quickly moved on to more fruits because it's not about "nutrition" right now, it's about him learning to eat and knowing what it's for.  We'll tackle the tasting everything for when he actually begins taking in enough volume to subtract from his milk feed.  We are far, far away from that day- but we will get there!! 

Wyatt is still receiving Speech and OT 2x a week.  His OT isn't sure he'll qualify for services when she reevaluates him... that's a good and bad thing.  Good that his development level gap has closed but I love watching how she works with him.  It tells me what I need to do day to day!  I'm sure we'll have speech for a long time.  :-)  

SIX MONTH PICTURES:

(January 12, 2013)

  

SEVEN MONTH PICTURES:

(February 12, 2013)