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

Time flies when your having fun!!

We have been trying to get Crew out of the house a little more... he is getting tired of always having to see a doctor every time he goes out!  He went on his first trip to Costco on Monday and his first football game (his cousin Colby Schow) last night.  I am not sure he knew he was at either place because we kept him covered and he slept through both outings... he loves his car seat and stroller!

We had two doctors appointments this week.  First, Crew saw his pulmonologist, Dr. Tippets, and he thought he looked great.  Dr. Tippets started talking to us about taking away Crew's heart monitor that he wears to tell us if his rate goes below 80 or above 200 and also alerts us if he does not breath for more than 20 seconds.  He told me I could kindly hand the monitor over when he was ready to take it, or he could tear it out of my fingers... I told him he will probably have to tear it out of my fingers!!  It is a step in the right direction, but it scares me nonetheless!

Next, we saw the ophthalmologist again and she said Crew's eyes are still premature, and although we thought this was going to be his last check up, she wants to check his eyes one more time just to be on the cautious side of things! She said things look normal, but she can't clear him until he is a little older... around 47-48 weeks corrected.

The physical therapist is still coming to the house every other week and she is very impressed with Crew's head control and his overall strength and progression.  We no longer need our home nurse however because Crew is growing like a weed... oh, by the way, he was 11 pounds 12 ounces at his visit this week!!

We see the hemotologist next week so I will update as soon as I  know more. 

Crew has a few nicknames so far... We call him "Ah-Gee" because he makes this sound whenever he complains... Nee Nee calls him "Grouch o Marx...Rolly Polly Olly... Snuggle Buggle...and Fatty Mcgee" to name a few, and I think those names speak for themselves!!  I like to call him "Big and Bossy and Muffy."  Daddy got strep throat this week so he was quarantined from Crew, which was not easy because his routine has been to come home, shower, and hog him for the rest of the evening! Nee Nee wants me to add to this post that she thinks Crew's poop smells like cake batter... Apparently I am feeding him straight cream!!

Music is one of Crew's loves right now and it almost always calms him to be sung to or just having music played for him....we told him it would be OK if he wanted to grow up and be Tim Mcgraw!!  He is also starting to smile a lot more, but we still can't say whether or not it is purposeful or just gas!!  And, last but not least, he still  LOVES to be snuggled!!

A visit from Crew's Great Aunt and Uncle, Nancy and Gary, from New York!

A visit from Crew's Great Aunt and Uncle, Janet and Wayne, from Chicago!!

We want to thank Crew's Great Aunts and Uncles for making the long trip out to meet him... we hope to see you all again soon!

One Month Corrected!

Our sweet baby Crew will be One month corrected on Monday . . . how the time flies!!  This means he'll be one month past his actual due date of August 2nd.  We expect him to progress and meet milestones according to his corrected age. 

Crew is what we like to call a little “bossy!”  He loves being held . . . sometimes even all night!!! Crew loves to be outside and went on his first walk on August 3rd.  Crew is a 4 time sneezer, LOVES his spa (bath) time, likes to sit up and look around, loves the car and his stroller, likes being sung to, and loves his Aunt Nee Nee!!  He even smiled for me for the first time awake and his mom was a little upset about it (even though it was probably just a gas bubble!).

At Crew’s doctor’s appointment yesterday,  he weighed 11 pounds 3 ounces!!!  Can you believe that?  He is growing like a weed and we tell him that he is naughty because we want him to stay little forever!!  The little fart takes 5 to 6 ounces at a time.  As for the doctor’s appointments….they have all gone well.  Crew has worn a “holter monitor” (a heart monitor which has 5 leads)  a couple of times to measure his heart activity for 24 hours and Dr. Womack saw no SVT . . . YEAH!!   He had another CBC done a couple of  weeks ago and his ANC is still trending low so he will have to consult with the hematologist again to do some further genetic and familial testing.  They may even do some autoimmune testing on Momma to make sure she did not pass anything on to him that he might just grow out of.  On a good note . . . his hematocrit was up to 36 – right where it needs to be!! 

Crew’s eyes continue to be premature, but Dr. Lee said that if his next eye exam shows that nothing has changed for the worse that he is in the clear and will not need any more eye exams for a while . . . whew! He also saw his Endocrinologist and we found out that he needs to stay on his Synthroid medication until he is about 2 years old to make sure his thyroid aids in proper brain development.  

Dalynn said that a few of you have been asking about a baby shower.  We have decided to cancel the shower.  Because of his lowered immune system, Crew is still very susceptible to infection.   We knew we couldn’t throw a shower now without him there to show off to everyone!! Gretchen is still registered at Target and Babies R Us. 

For those of you who want to meet Crew . . . Terrel and Gretchen are happy to have HEALTHY visitors . . . just be sure to call or text first!! 

SOME of Crew's Nurses!!

Kim

Heather

Heather reading to Crew

Jana

Lena

Jamie

Ann Margaret

A BIG Thank You to ALL of Crew's Nurses, Respiratory Therapists, Nurse Practitioners, Doctors, PCCs, Lactation, Social Workers, and NICU Staff that helped take such great care of him!  There are MANY more that we did not get pictures of, but you know who you are and we are forever grateful to all of you!!  We miss you.....kind of!! :) 

Love, 
Terrel, Gretchen, and Crew

P.S. I finally learned how to do blog posts!!

A visit from the cousins

Payton

Boone

Delaney