Happy! Happy! Joy! Joy!

   Yesterday CJ had his Pulmonary check up at Riley Hospital. He is a weighing in at 11.10 pounds and 24 1/2 inches long. He is in the 30th % for weight and the 87% for height. He continues to be growing well! 

    The best possible news we could have gotten was that we could continue to wean CJ off of his oxygen. He was weaned down from a .50 flow to a .25 flow at his appointment in January.  At this appointment, we were so blessed to find out that his lungs are continuing to grow and improve and we are able to wean him down in his oxygen again! He is able to come OFF of his oxygen and monitor during the day, but must be in them at night. This is the BEST news! As soon as I got him home this happened...

OFF came the monitor! OFF came the oxygen! ON came the smiles from our miracle baby! 

He kept touching his face trying to figure out what was missing! No love lost in the missing cannula! 

After a little mini photo shoot...under 100 photos taken...I took my baby for a walk...cord free for the first time ever. I was only able to take 10 steps until I had tears streaming down my face. Simpley picking him up, not having to worry of there was enough slack in the oxygen cord, if the cord is tangled, of the cord is caught...to just GET UP and WALK AROUND ?!? So simple, yet such a huge milestone accomplishment. 

I then spent the next 2 hours of just walking around with him...crying tears of utter joy...walking up and down the stairs...smiling like a crazy lunatic...walking in circles...crying some more...walking in closets/bathrooms and closing doors. 

  It's amazing to not have a 57 foot cable trailing around behind us or carrying a mobile  oxygen tank. Seeing this cannula hanging on the tank still gets my teary eyed. 7 months ago we were told that having an abortion would be the best...but we never even entertained that idea. 

We never gave up on our baby. We were already so in love with him that "giving up" on him was never an option. He was ours, no matter what and was going to be loved and cared for to the fullest and best of our abilities.  We never dreamed how well he would be doing...we just celebrate every little thing he is able to do because after all, despite all the odds stacked up against him... 

CJ IS ALIVE! 

CJ at 4 Months

CJ was born 4 months ago. I just can't believe how much he has grown, learned, and changed. One thing that hasn't changed is our daily snuggles! 

CJ had his 4 month check up yesterday. Even though he was born 4 months ago, his development is recorded at his adjusted age, the age he is from my due date with him. His adjusted age is currently 1 month and 10 days. His height, weight, and milestones are recorded for his adjusted age, but for his vaccines we follow his actual date of birth. 

CJ's Stats: 

Weight: 9.6 pounds (31%percentile)

Height: 23 inches (90% percentile)

Head Circumfrence: 15.5 (90% percentile) 

He is long and lanky just like his brother and sister! 

Feeding

  CJ has never had to use the NG Tube since we were home and were officially discharged from it! He has been able to gain his ounce a day on breast milk...nursing or from a bottle. It was awesome to call the company that sent us supplies and say, " DISCHARGED!" CJ loves nursing and is so relaxed..sometimes too relaxed...and happy. 

Speech

   We still see his speech therapist; however he has been doing so well that we have graduated to seeing her every 2 weeks instead of every week. He is still working on his jaw strength and the elasticity in his cheeks, but he has so improved! 

He is getting strong! He has been the easiest of all 3 kids with Tummy Time. He has such good head and neck control!  He will put weight in his legs, but not for a long amount of time. CJ has always been inquisitive. He gets bored easily and likes to have different things to look at. He has started reaching for the toys hanging from his playmat. This week has even started smiling...like real response smiles, not just "gas" smiles. 

He is still wearing size 1 diapers. CJ has grown out of his newborn clothes and wears size 0-3 months clothing now.  He is still in his Oxygen and monitor full time. He averages one apnea spell every 2 nights. We see his pulminologist next week so this may change.  He slept the first time in his crib this week. We have slept in the living room since he has been home since that is where the oxygen tanks are located. We were hit with a lot of snow and ice this week, so we slept upstairs in his rook where it is warmer and away from any windows. 

He is not sleeping through the night yet, but usually only wakes up once around 2 AM, to nurse. He absolutely HATES a pooping diaper and will fuss until he is changed...can't say I blame him! 

He is the most snuggable and lovable little guy! 

Pitter-Patter

How We Roll

Guess there will be no spontaneous "get up and go" for us for awhile...

When we roll...we roll with a mobile oxygen tank, apnea monitor, diaper bag with everything imaginable CJ may need, blankets, car seat, stroller to carry it all....

Oh...and the baby....can't forget the baby...

"Hey, CJ..."

"How do you like being home?"

Enough said. 

Home.

After 86 days in the NICU and that many night without his Mommy and Daddy...

CJ came home. 

Elf in the NICU

CJ got a new visitor today in the NICU...can you find him? 

That's right! CJ has one if Santa's elves watching over him. Clayton and Lacey saw a picture of this new friend keeping watch over their baby brother. 

They decided to name his little elf Cena...after John Cena of course. 

Cena will watch over our little miracle until he comes home...which we are still in track for this week! Can you believe our 2.14 pound micro-preemie is now 7.11 pounds!?! 

Happy Due Date Day!

Today is CJ's original date of when he was to be born. He decided to arrive early to his part...by 12 weeks! 

Today, he weighs 7.8 pounds. He is almost 21 inches long. Most importantly, he is healthy. 

This week, he will hopefully be discharged from the NICU and be able to go home. 

Home. 

Lacey's Letter to Santa

Wish granted baby girl, wish granted. 

The Discussion

Today I had "The Discussion" with CJ's NICU team. We discussed taking our little miracle home...

Home. He is 79 days old...4 days away from his due date...and he has never been home.  CJ has never met his brother or sister. Curt and I have never went to bed and woke up with our baby. 

 Bringing him home feels like a dream. He wasn't supposed to make it, to live. But he did, and he is. 

We will finally be bringing our miracle baby home. 

I am excited, relieved, and terrified. 

  He will be coming home on oxygen (after a trial run without O2, he began to desat and it was replaced) and with a feeding tube. He'll be hooked up to a monitor to alert us if his heart gets too high or too low or if he stops breathing. Curt and I must receive training on how to take care of all of his equipment and placing/replacing his feeding tube in the event he pulls it out...which he sometimes tends to do. 

My miracle is coming home. 

CJ is 2 Months

CJ turned 2 months old on the 9th. 

 

My 37 weeker was 2 months old.

      He is currently 6.14 pounds...yes, he has tripled his body weight! His oxygen has been switched to what they call "going home" oxygen. He is on a 1/4 of a liter flow and 100%oxygen.  (I realize this will probably make no sense to most of you, but I am recording this for our memories.) He was switched over to this on the 12th but as of today he is 9 days free of having any alarms. He will most likely go home on this oxygen which is just fine by me because he would be coming home! 

   What is still keeping him in the NICU? Feeding. He still requires his feeding tube for some of his feeding. He is slowly working up to not needing the feeding tube. Yesterday he took 63% of his feedings from either breast or bottle feeds. 

   

  We are so close to getting his little miracle home...but still are not sure when that will happen. As the time gets closer, I find myself more anxious and getting rather impatient. 

    My baby is 73 days old. He has never met his amazing big brother or sister. He has never been home.  

Hopefully, this won't be the case for too much longer. 

Baby's First Bottle

CJ did so well over the weekend breast feeding that he has graduated once again to a new milestone! Every 3 hours, he gets to breast feed...if I'm there... or bottle feed if I'm not there. Today, I got to give him a bottle for the first time....EVER!!

He wasn't too sure about it  and was a little tired after breast feeding. 

For most almost 2 month old babies, this is old habit. Babies are usually born doing being able to eat from a bottle or breast feed. To be able to breast feed or bottle feed our 36.2 weeker...our almost 2 month old baby....is such an amazing blessing!! 

NICU Guardian Angels

   Every morning, when I first walk into the NICU and see CJ I am always in awe of him and struck again by what a miracle he is and what a big blessing that God has given us. I am so thankful that he has continued to be such a fighter. 

He is such a laid back, peaceful baby. He rarely gets upset. The nurses continue to fight over him, some even go to the extent of planning their work schedule around one another so they all get to have their "CJ" time.  We couldn't be more blessed than to have CJ's guardian angle NICU Nurses. Have you heard that quote on the TV commercial...."Care is not what we give, it's what we do?" Well, these nurses are the epitome of that. They do care, not only about CJ, but about our whole family. Every day they ask how Clayton and Lacey are doing as well...they love our Lacey stories and cheer on Clayton in all is his success in school and for his first basketball game. It truly is going to be bittersweet when CJ comes home and I won't spend at least 5-6 hours a day with them. BUT I do want my baby home...I guess we can always visit! 

   Our snuggle time continues to be my favorite part of the day. CJ's favorite has sinced switched to when I get to breast feed him. He has been doing so well with breast feeding! He will nurse about half of his feeding and then get the rest from his feeding tube. Today, since he has been doing so well, I get to breast feed him three times a day instead of one. The fact that I am breast feeding my 36 week old baby is amazing to me! 

He definitely is enjoying it and growing by leaps and bounds! He is already 5.7 pounds!! His premie clothes are starting to look like muscle shirts on him. 

Oh, and don't get me started in his double chins...

35.1 Weeks

He makes getting up very early on super cold mornings worth it!

 I can't wait to get this little 35 weeker (4.15 pounds) robot home!

Party at CJ's CRIB!

CJ has done so well at being able to regulate his body temperature...not to mention that he is a whooping 4.11 pounds!...that he graduated from an isolate incubator bed...

to an open air crib! 

  It takes all of my will power to not climb in the crib with him, especially since the sides slide down. 

 Clayton and Lacey drew him a couple of pictures that his nurses taped to his bed so he has something to look at for stimulation.  Not only has CJ graduated to a crib, but he and I have been working on getting him to breast feed. 

Thank you all so much for your continued prayers and support! 

1 Month Ago...

I got to hold CJ for the first time...

My how much has changed in a month! 

Miracles do happen. 

CJ is 1 Month Old!

Our sweet little baby is now 1 month old. 

  CJ continues to grow and grow! He currently gets 35ml of fortified (24 calorie) breast milk every 3 hours. Ever since I cut dairy out of my diet, we have been lucky that his stomach issues seem to have disappeared. 

  He continues to have his crannula and is on Vapotherm O2. He likes to hang out  around 25-27% O2  and on a flow of 4.0. His red blood cell count is low. At his last check, his count was at 30 and a count of 29 or lower constitutes a blood transfusion. Tomorrow, his RBC gets checked again and we are anticipating that he will be getting a transfusion. We are hoping that this will help to give him the little push he needs to wean off his O2. 

   CJ recently got his PICC line out since he is up to his full feedings! 

  His head looks amazing without his PICC line antennae! Since his PICC line came out, he gets to wear clothes! His nurse surprised me with this onesie as his first outfit...

Of course I cried from love and happiness, not to mention the thoughtfulness of his nurse! 

 We continue to have our special skin to skin time daily. It is by far our most favorite time of day! 

 CJ also got to meet a very special friend who will be by his side through thick and thin...

Mr. Monkey....neither one was very impressed with each other. 

  Our baby has grown so much! He is now 4.1 pounds!! 

  We have taken the next step in his feeding and have been trying some non-nutritive sucking at the breast. He has been doing so well! I couldn't be more proud of him! I also got to give him his first bath! 

  He was so relaxed during it and loved getting his hair washed and brushed...and of course, being all clean and snuggled afterwards! 

Dear Sweet Miracle CJ, 

    You've made it. These words are more precious than you can ever know. Medically, you weren't supposed to make it. We never gave up on you. You were the baby we prayed to have added to our family. You complete us and make our family whole. We have fought so hard for your survival and never once did you give up. 

   I hope that you know how incredibly loved you are and how many people have prayed for you and continue to pray for you. We can't wait to get you home, but we know that you are in the best possible care with the incredible staff of nurses and doctors. Oh how the nurses love you! You have your main nurses that request you whenever they work and any time a new nurse gets to take care of you they fall in love with you too!  CJ, you melt my heart every moment I get to spend with you. As soon as I get to your side, you sense I'm there. You start squirming and as soon as I start taking to you, you open your eyes and look for me right away. 

   You are starting to look more and more like your big bro every day. You are so laid back for such a fighter, your strength is amazing. 

   I love you so very much, my miracle baby. 

  Love , Mommy