James and I began this blog at the very beginning of our pregnancy with Wyatt to share and update our new adventures as we became pregnant and start the new season of parenthood. Sixteen weeks into pregnancy, I had to go into surgery to ensure our son would not come too early and shortly after, we found out Wyatt has Congenital Diaphragmatic Hernia (CDH). This is our humble attempt at being transparent and hopefully sharing the joys and love of Christ through this roller coaster ride we're on. And now to share even more with the new miracle on the way.

Saturday, February 23, 2013

Under Contrustion

I'm wanting a new look for our blog and so it's going to look a little plain or different until I figure out exactly what!  But don't worry, I'm not going anywhere... just figuring our our new "look"!

Wednesday, February 20, 2013

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.  :-)  

(January 12, 2013)

(February 12, 2013)