4 Months "Corrected" Already!

Our handsome little man was 4 months "corrected" on the 2nd of December!  It is really hard to believe that 6 months have gone by since he came into the world and 4 months since we brought him home! 

Crew is turning into quite the character, and we are loving every second of it!  Just in this past week, he has started eating rice cereal (December 2nd), had 2 teeth pop through (December 3rd when I felt them), started sitting up "kind-of" (December 5th), and rolled over from his back to his tummy by himself (December 7th)!!  The dates are so that I can remember them!!

The rice cereal thing wasn't going so great so we switched to single grain oatmeal yesterday and he seems to be liking that better.  He would gag on the rice cereal and make some pretty funny faces.  He even had tears over it one night ... that is when I decided to switch it up!

As for his teeth ... I was not at all expecting teeth already!!  Crew had been chewing and drooling like crazy and it was mentioned to me by his dad that he was probably teething to which I said "not yet!"  Then, one day while I was letting him chew on my finger, I told Nee Nee that I thought I felt a tooth and sure enough I looked and their they were, 2 of them!

The sitting up is still in the making, but his balance is getting much better!  If I prop him just right he will stay sitting up (a little hunched over) for quite awhile.  He will even look around the room while he is doing it.  This is progress compared to last month!  Crew has also been trying to roll over for a couple weeks.  Just a couple of days ago, I was on the floor with him (shopping online) and looked over to find him on his tummy!  He had rolled over all by himself!! He did it again on his play-mat today when I wasn't looking!

As for Crew's health ... he has been great!  No colds, fevers, or even a runny nose!! Knock on wood!  His dad likes to make fun of me for being OCD about everyone being clean and washing hands (I kind of am) but it's keeping the little guy healthy!!  We still have not had any SVT, which is pretty amazing to us!  Crew is still on his 2 heart medications to regulate his heart, but Dr. Womack may be taking him off those soon to see if the SVT returns.  If it does, he will go back on the medication until he can have an ablation.  And, if it doesn't then there is a slight chance that he has outgrown that pathway his heart was taking.  Our little man is still on oxygen at night and his heart monitor, but those alarms are going off less and less!!  We did a sleep study this past week to try to find out why he is still needing the oxygen, but we have not heard the results yet!  The sleep study was not the most restful night for Crew or I, but I am sure glad we did it and that it is over!  We also did a swallow study before Thanksgiving to see if he was aspirating and that all checked out good.  He is refluxing, but not aspirating.  We see the NICU follow-up doctor next week, as well as Dr. Flynn (Endocrinologist) and Dr. Tippets (Pulmonologist) for follow-ups.  All in all, his health and his progression have been such a blessing to us and we are grateful every day for how wonderful he is doing!  Oh, and I can't forget to mention that at his last appointment, which was well over a week ago he weighed in at 16.12lbs!!!  I am certain he is in the 17-18lb mark by now though!

Thanksgiving was spent this year split between his Aunt Michelle and Uncle Chet's house and his Grandma and Grandpa Schow's house.  Crew also got to meet Santa for the first time at the annual Schow Christmas Party!  I've posted some pictures below of the past month for your viewing pleasure....

 

Meeting Santa

Christmas City, Rupert, Idaho

His Version of Sitting Up - Oh, and the Shirt is Pretty Cute Too!

Teeth

Cousins - Crew loved them!!

Thanksgiving

Practicing Tummy Time

Crew and Momma Snuggling After the Sleep Study

My Little Man Today Being a Ham!

And, a Few From His Recent Photo Shoot by Nee Nee ...

Snapshots.....

Our little bag of popcorn ... His dad felt sorry for him that he had to be dressed up as a bag of popcorn!!  Halloween 2013!

Discovering Leaves ... Fall 2013

Playing with Hats

Crew's New Bathtub ... he grew out of the old one!!

Just being cute!

This is what happens when you do the airplane after dinner!!  Crew finally got his dad and we loved it!

Snuggling Momma

Oxygen Baby

At his cousin Boone's football game!

Dreaming about his Momma!!!!

A 10 minute photoshoot while babysitting

3 Months "Corrected"

Our sweet boy was 3 months "corrected" on November 2nd!!  He is weighing in now at a whopping 15 lbs 14 oz and is 24.75 inches long!!  I can't believe how fast he is growing ... it makes this Momma sad!  He is even in some 6-12 month clothing already!

As for Crew's appointments, everything is going great!  We had another normal lab work-up with the Hematologist so we have been dismissed from him unless Crew shows us any signs that might cause us concern (fevers, sores in the mouth, nose bleeds, constant colds, etc).  YEAH!!! Knock on wood, he has not come down with any illnesses yet!!

He is still on oxygen while he sleeps and that continues to be ok ... it's not his favorite thing but he is getting used to it!  I will see the Pulmonologist again here soon to discuss why it is he thinks Crew hasn't outgrown his need for the oxygen.  He mentioned maybe doing a sleep study on Crew to see exactly why he needs it.  We also recently saw the Neurologist and we have decided, along with his Pulmonologist, that we will wait to do a MRI on him until he is 6 months corrected.  So, we are looking at maybe February for that.  His doctor wants to do a contrast MRI and he will need to be sedated so it will most likely be an overnight procedure so that he can be monitored.  The poor guys also had his immunizations this past month and boy did he hate that!!  He went from happy to MAD in about 1 second and he took a while to calm after the fact ... he was pretty upset!  Oh yah, still no SVT!!!!!!!!

Crew continues to love his interaction with us ... the toys don't quite do it (he requires just a little attention:)!! He giggled for me for the first time last week and it brought tears to me eyes ... it was the sweetest sound I think I have ever heard!  We spent the rest of the day trying to get him to do it again with no luck.  Nee Nee has since found a tickle spot on him on his back that makes him giggle if he is in the right mood!  He is still pretty selfish with his giggles!  He is also starting to grasp things if they are close to his hands ... he isn't quite reaching for things yet, but almost!  He has recently figured out how to complain and has a new sad cry that would just about break anyone's heart ... it works for Momma that's for sure! Crew discovered his hand and fingers the other day and when they catch his eye, he will watch them closely.  He rolls front to back and we are currently working on back to front!  He also still loves the car and the stroller ... thankfully!!

We tried our hardest to get a smile out of him for his monthly picture and this was the best we could do!  He has figured out the "camera" thing ... when it comes out, he stops smiling and just stares.  Almost like he knows what it is we want!

Singing with his Momma . . . about a month ago

2 Months Corrected (Better Late Than Never, RIGHT?)

Our little muffin is already 2 months corrected (Actually 2.5 months now!)!  Crew is doing great ... still no SVT since we have been home so keep your fingers crossed that this continues!  We saw the Pulmonologist and Endocrinologist this past month.  Nothing new with Pulmonology - Crew is still on oxygen while he sleeps ... We have to put him in a straight jacket at night because the little bugger is a grabber, but other than that this is going well!  The Endocrinologist increased his medication, but said that he is still on the low end of the dosage.  We will see Neurology, Oncology, and his Pediatrician next week.  The Oncologist will be checking Crew's labs again and if he has another "normal" workup he will put us in the clear - or at least for 3-6 months!  The Neurologist is going to be consulting with us as to when we feel safe putting Crew under anesthesia for an MRI ... we are hoping that won't need to be done until he is at least 6 months corrected! Oh, and he was 14.9 lbs at his last appointment!!!!! 

My days now consist of rocking, patting, wiping, burping, dressing, medicating, and sleeping when I can, but I am loving every second of it!  His huge smiles make it all worth while!

Crew started singing this past month ... it is the cutest thing you have ever seen.  When we sing to him (especially "You  Are My Sunshine"), he tries to hum along with us!  I will see if I can't post a video of it soon!  He is talking up a storm right now and still as smiley as can be!  Our first road trip to Grandma and Grandpa's went off without a hitch ... he seemed to like it there!! We had Crew blessed while we were in Rupert ... we didn't get as many pictures as we would have liked but here is what we did get (Thanks Nee Nee!)!  Thanks to everyone for all your support!!

Has it been over 2 weeks already?

It has been a while since I posted last so I thought I would give everyone a quick update... Crew has been doing great!  He had another eye appointment last week and his right eye is fully mature and his left is almost there!  Dr. Lee cleared him and we don't have to see her again for his eyes for 3 months!! Yeah!  

Crew did have to go back on oxygen this week so that was a little bit of bad news, but we will take it.  He only has to wear it when he is sleeping so not too bad... he doesn't much care for it though!  We did an oxygen study on him 2 different nights and the Pulmonologist felt like he could use some more oxygen when he sleeps.  We think this is just due to how sick his lungs were in the beginning and that they are taking time to regenerate to their full capacity.  

We also saw the Hematologist 2 week ago and Crew's labs continued to trend low. Dr. Camilo (the Oncologist/Hematologist) spent a lot of time with us going over what could be causing this and what he felt it might be...I left there feeling very overwhelmed and scared. Well, we went again this past week for our 2 week check-up and Crew's lab work was NORMAL!!  Dr. Camilo was as pleased with this and we were!!  He said that this was a VERY good sign and they he would just check it again in a month.  If his numbers continue to be normal he will clear us with just a follow-up down the road!!  Such great news.  As I sat waiting for our appointment with Dr. Camilo at the Mountain States Tumor Institute for Pediatrics this past week, I realized again how blessed we are to have such a healthy boy at home with us!!  Watching the children and families come in and out of that waiting room made me feel truly thankful for what we have been handed.  

Now, on to what Crew has been up to lately.....he is smiling like crazy and those smiles melt me!!  He is the most smiley right when he wakes up!!  He also discovered his voice this week and tells us all kinds of stories! He has been a much happier boy these past couple of weeks, which we are really loving!  He likes to look at his toys and loves to watch the ceiling fan.  The turkey is already fitting into 3-6 month clothing without much room to grow!  I packed up his 0-3 month things and almost shed a tear...he is growing way too fast.  At his appointment this past week he was 13 and 1/2 lbs!!! We will be taking our first road trip this coming weekend (Rupert) and I feel like I am going to have to pack the house up.....babies need a lot of stuff!!  We are looking forward to getting out of the house for a few days for some different scenery....hopefully he likes Grandma and Grandpas house!!

Here is a sneak peak at our happy boy!!  I will have Jen post more photos and maybe some video too so stay tuned....

5 Weeks Corrected . . . and Cute as Ever!!!

"HBC" . . . High butt crack