Tuesday, August 7, 2012

Two Years Post NICU

Today marks the second anniversary of the day Evan came home from the NICU. I can still remember the excitement I felt and the achievement of the obstacles we overcame. Evan was on his way home. Of course, since I was told he would be discharged on August 7th, I had planned on being at the hospital bright and early. The 1 1/2 hour drive to Yale that day seemed like it took forvever. I remember how excited I was to bring Evan's car seat into the NICU knowing it wasn't for the 'car seat test' but for the real deal.. coming home.

Walking into the NICU was surreal thinking, 'Did we really just spend the last 58 days here?'.  It was weird to walk into Evan's room to see most of his things packed up. He was ready for one more meal, one final meal as a NICU baby. The nurse took off his probes from the monitors, which was a wake up call that he was really coming home. I sat down in the rocking chair to feed him and thought about everything we went through and how many times I dreamt of the day he would be discharged.

Last meal in the NICU

We lived an hour and a half north of Yale so my husband and I were a bit nervous for the drive. Putting Evan in his car seat was so exciting. He looked so itty-bitty leaving the hospital just shy of 5 pounds, over a pound gain from his birth weight. We said our goodbyes, which was not incredibly emotional since Evan's team was no longer on duty. We happily walked out of the hospital with our baby boy. The drive went surprisingly well. A little fuss here and there but of course Mommy was in the back seat to save the day.

On the way home

Pulling into the our driveway was the best feeling in the world. Then I remembered that we had a crazy, hyper, 1 year old chocolate lab. Fortunately, Bruli was very well behaved, calm and gentle around Evan. We enjoyed the day, alone, as new parents. Many family members and friends came to visit Evan when he was in the NICU so we decided to have a few days to be spoiled with some one-on-one Evan, Mommy & Daddy time.

Getting sleepy

Evan was eating every three hours on the button, since he was so use to his strict hospital schedule. We shared duties from feedings to diaper changes or Aquaphor applications. We did not have to worry about any oral medications since he had not been on any since he was two weeks old. It was such a wonderful feeling to be taking care of our baby at home.

Time for a snooze

Just like his eating schedule, his sleeping schedule was no different. I remember watching him sleep, feeling like I was dreaming that he was in his crib. He was a big fan of his soothie and enjoyed a snooze even through all the noise and sunshine that eventually poke through the window. When it was time for a bath that evening, we were well prepared. Evan soaked for a long time and never fussed. He was a very happy camper while taking his first bath at home.

Bath time

August 7th is a special day for us. It is a day that we can celebrate the homecoming of our baby who has survived one of the rarest skin disorders. It was the happiest day of my life and made me "forget" about the terrifying experience of his birth and his first few weeks on this Earth. Evan is truly a young warrior and I am looking forward to giving him the most amazing life a child could ever ask for. Lots of love, hugs & kisses, fun & laughter, comfort, guidance and security. He only deserves the best for all of the things he has to go through and will for life.

My sister's wedding & Evan's 1 year anniversary post NICU

So what is Evan doing these days?

Evan has mastered many milestones in the past two years for a child in his situation. Though he is still not sitting independently (but close to) or walking or crawling, he has been showing improvement in many areas. He has maintained a weight gain, though very small and at times only gaining an ounce or so a month. Now weighing 17lbs 10oz, Evan will bear weight on his feet for a few seconds and will do it longer and longer as we practice. His conginitive and receptive skills have been advancing rapidly these past few months. Evan is trying to communicate more by pointing and reaching but uses minimal signs. He LOVES attention and repetitive play like all toddlers and I am overjoyed when he giggles and laughs. 

Evan is still getting 90% of his nutrition from a bottle. He is no longer on powder formula but a mixture of prescripted PediaSure & whole milk. Evan is encouraged to eat pureed food but often refuses. I have always struggled to get Evan to consume his minimum amount of fluids per day and more than 1 oz of pureed food per day. Ironically enough he has developed an quite an interest in Gerber cheese puffs. He seemd to have skipped right over purees and has now been experimenting with and enojying soft dissolvable finger foods. Evan will hold his own sippy cup of ice cold water with and without handles. Evan has always been a difficult eater and it has been stressful worrying about his intake. I chart everything he eats and can tell you exactly what he ate a year or two ago today.

Evan's skin is still a lot of work to maintain. I can honestly say, recently, it has been hard to keep up with two, 45-60 min baths a day. Evan gets at least 2 baths every other day and his skin has seemed to be looking good. Im sure once the winter comes around it will not be possible to miss baths since it is hard to keep the humidity up. Recently, I have noticed that Evan closes his eyes when he sleeps more often. He still requires eye ointment in his eyes every night but occasionally he will have them completely closed for a few hours. Nail care is still tough. I feel like it is hard to keep up especially when they get thick and when Evan doesn't tolerate it. This is a new challenge for me, Evan becoming less tolerant in the bath. I knew it was inevitable. 

Overall we have been very lucky and very fortunate to have had it "easy" so far. We have stayed home since Evan was discharged (knock on wood) and have only been back for scheduled visits. Blood work which was originally weekly became monthly, to quarterly, and now every 6 months. ENT visits are still monthly and sometimes every other month depending on the success of the visit. Surgeries or sedations have been limited to a circumcision at 6 months old, an MRI and an OR visit, which will be yearly, for a thorough ear debridement. He has come so far. I am extremely proud of my young warrior.

Here is my silly boy....


A little girl named Brenna, who also has HI, can benefit from some prayers. She has been going through many obstacles since she has been born and is now facing another one. Please keep her in your thoughts as she jumps yet another hurdle at only 7 months old. If you have not already, you can read her story here: www.blessedbybrenna.blogspot.com We are thinking of you Brenna. You are quite the fighter and hope you return home as soon as possible.



  1. I love his laugh and smile! Brought tears to my eyes! My 11 week old baby girl has an undiagnosed form of ichthyosis and I can't wait for her to smile like that!

    She was also in the NICU and the day we took her home was one of the best feelings in the whole world! Congrats on two years! So exciting!

    Praying for Brenna as well!

  2. Dede love love love the family photo at your sisters wedding! Can't wait to see Evan agan! Kate just loves him to pieces!