Home Sweet Home!

Well, this is the post that I've been waiting 6 1/2 tiring months to write. Since the day Reid was born, my 93 year old grandfather, who also lives with my parents, has not gone a day without asking us, "How's the baby doing?" I always tried to keep my composure when responding, but there were days at the beginning when the utterance of this simple question would bring tears to my eyes...how do you tell someone who doesn't understand the gravity of the situation that the baby may not make it and that he may never meet him? After Christmas, he added, "When are you bringing the baby home?" to his daily repertoire of questions. Not knowing ourselves when the discharge date would be, I subjectively picked a memorable date for him and replied, "Hopefully, by your 93rd birthday," which was February 16th. Well, I was five days off...Reid was discharged from CHOP on February 21st and was able to meet his great-grandfather for the first time, a day that I will never forget.

For the past month, we've known that the surgical team was aiming to discharge Reid on February 21st, but we've also been in the NICU long enough to know that discharges do not always go as planned. So, of course, Reid's discharge would not be complete without a slight snafu. Even though we had a month's notice of discharge, the few days leading up to the actual day were a whirlwind of meetings with the home nursing company (we were approved for 12 hours per day of home nursing care), the discharge coordinator, and the home care company (which supplies all of the medical equipment to the house). In order to make discharge a reality, Reid's dedicated nurse practitioner, who admitted him on the day of his birth and has been his primary NP throughout his NICU stay, worked diligently to complete his discharge paperwork. It may have taken her the whole month, but she was able to succinctly summarize his complex medical background into 12 short pages...no small feat. Everything was in order and discharge was supposed to be easy...we arrive, pack up Reid, say our goodbyes, and we're on our way.

Enter snafu... on the morning of discharge, the home care company dropped off Reid's liquid oxygen tank, which resembles R2D2, and trained us on how to use it and how to fill his portable tanks. Bryan and I then packed up the stroller and headed into Philly...a trip that I could make with my eyes closed, and for those of you that know me, know that I am not the best with directions:) We arrived at CHOP and in talking with the discharge coordinator, we realized that the home care company couldn't drop off the feeding pump and supplies until after 6 in the evening. This meant that we had to stay at the hospital until after Reid received his 3 o'clock feeding...making departure time more like 4:30. Although this news was initially disappointing, it actually worked out for the best...we were treated to a great lunch at our favorite local restaurant (thanks Rich and Donna) and were able to say our goodbyes without being rushed. After lots of hugs and tears on my part, we donned Reid in his coming home attire, carefully placed him in his car seat, and said our last goodbye to his amazing nurse...a nurse that has had him a lot through his good days and bad and truly loves him. As we walked out of the wing that we called home for the past 203 days, it was bittersweet. We ran a gamut of emotions as our hospital bands were cut from our wrists and we walked through the NICU doors for the very last time. We were free...I knew that I should feel happy, and I did, but I also felt an overwhelming sense of sadness.

 

Thankfully, the car ride home was pretty uneventful and we miraculously missed rush hour. We amateurishly maneuvered all of Reid's equipment into the car and somehow stuffed all of the goodies that the nurses sent us home with in the trunk...think diapers, bottles, and medical supplies galore. I took the wheel (control freak that I am) and Bryan sat in the back next to the little man. Bryan gave me minute by minute updates as I fought away tears and cautiously navigated our way home. This may have been the first time in my life that I consciously made sure that I was not exceeding the speed limit or yelling expletives at the crazy drivers on 95. Reid sat quietly, glanced out the window, and fell asleep within 10 minutes of our departure. We made it home in one piece and Reid calmly adjusted to his new environment, accepted the doggy's kisses, and won over his great-grandfather's heart. Shortly after arriving, the flurry of people started to arrive- the coordinator from the home nursing company, the nurse from CHOP home care, and our night nurse. Thankfully, Reid continued his nighttime routine of falling asleep slightly after 6 and we were able to work out the nursing logistics and complete the necessary paperwork. Needless to say, after the physically and emotionally draining day, Bryan and I were exhausted and starving. Thanks to my second set of parents, we had a yummy fajita dinner waiting for us:) Reid had a successful first night and slept his normal 12 hours; however,unfortunately, Mom and Dad cannot say the same thing.
 













Highlights from the first week at home:
Bryan, George Michael, Reid, and I went for our first "family" walk around the block. Reid appeared completely content with the sun beating down on his face and a bit surprised by the cool breeze that blew by. We made it about halfway around the block and he was out like a light...eyes closed with a slight smile on his face...priceless!

I wasn't sure how I was going to do it, but we made it to Reid's first pediatrician appointment and it wasn't as stressful as I anticipated. Luckily, my mom took off work that morning and helped me transport the little guy...he sure comes with a lot of accessories:) My mom dropped us off at the front door, and I walked into the well visit waiting room equipped with an oxygen tank, two monitors, a diaper bag, stroller, and baby. I changed Reid immediately before leaving for the doctors and thought that I may make it through the appointment without having to change a diaper...wishful thinking. He pooped as we were sitting in the waiting room...awesome! When I took him back to the patient room, the nurse instructed me to get him naked so that she could weigh him, take his head circumference, and get a length. I did my best to appear like I had everything under control and somehow got him out of his poopy diaper and naked without a cry or without the monitors beeping off. Good news- little guy gained 4 ounces since his last weight at CHOP. Bad news, they had to give him his flu vaccine and he later developed a slight fever, but nothing that a one time dose of Tylenol couldn't fix.

We are enjoying doing "normal" baby things with Reid and spending time as a little family. George Michael has surprisingly been very gentle and loves licking Reid's hands and feet; however, sometimes he confuses Reid's toys with his own...who can blame him, baby toys and dog toys look very similar. We're looking forward to settling in as a family and couldn't be more thankful for the gift that Reid has become.

 

"Baby Steps"...

seems to be the motto of this journey and quite fittingly the title of the NICU's discharge checklist.  About a month ago, Bryan asked the attending neonatologist, "Hypothetically speaking, if you were to give a date for discharge, what would it be?"  Not expecting a straight answer, the doctor pondered the question, did some quick math, and replied, "February 21st."  In asking how she came up with the date, she said, "Very subjectively."  We took the answer with a grain of salt; however, it has put some fire under our *** to get things organized at home for the transition.  It seems like the surgical team is doing everything in their power to make the February 21st goal a reality.  In doing so, we've had the pleasure of checking things off our "Baby Steps" discharge checklist...doesn't it always feel so great to check things off a list, no matter what kind of list it is?!  We've taken baby CPR (back in September thanks to a very hopeful and ambitious nurse:)), taken our feeding tube class, both Bryan and I have placed the feeding tube, and we've selected our pediatrician and scheduled our first appointment.  Last few things to check off include being trained in drawing up Reid's meds, mixing his fortified formula, and completing the car seat test (basically, Reid will have to sit in his car seat for the length of time of our car ride home from CHOP, and they will monitor his vitals and oxygen saturation levels throughout).

Mom's tube placement- nice tape job, Dad!

No feeding tube and you can see my serious scar:)

  



Let's see...changes since the last post.  In the last week and a half, we've been tying up loose ends, and I feel like Reid has seen every specialist there is to see.  He had an MRI of his brain to gather baseline data, as well as monitor any brain bleeds which are very common with premature babies.  To complete the MRI, the team first talked about putting Reid in an immobilizer to contain his movement...it sounded like an inflatable blanket.  However, they quickly decided against it because of how active Reid has become.  Therefore, they had to sedate him, which meant placing an IV and giving him rescue doses of the sedation medication...thankfully, they were one time doses, and we didn't have to worry about weaning him from the meds again.  While he was sedated, the team capitalized on the moment and was able to finish his hearing test (which required him to be sleeping)...he passed with flying colors, but they will continue to monitor him because hearing loss is common with CDH babies.  Once he woke up from his sedation, he tried so hard to be his active, curious self again; however, he seemed a bit groggy- like he had one too many stiff drinks.

Reid pre-MRI in his cap getting him nice and toasty

Reid post-MRI coming out of his sedation

In the area of feeding, Reid continues to gain well...he is definitely filling out and finally starting to show some baby fat (it only took 6 months)!  They successfully switched him from fortified donor breast milk to fortified Gerber Good Start for the transition home.  He seems to be tolerating the formula in his stomach, but he has yet to take it in a bottle...I'm assuming that his sticking his tongue out and yelling at the bottle means he doesn't like the taste!  Unfortunately, I think eating is always going to be a battle....hopefully, it will get easier when we can transition to baby food. They have been able to condense his feeds during the day to over an hour with a two hour break in between.  At night, he receives continuous feeds to try and help beef him up and make up for some of the calories that he burns off during the day.

I'd rather eat my toy than your stupid bottle, Mom!

In preparation for Reid's homecoming, the team made an exception to the stroller policy to allow Reid daily walks  in the stroller around the NICU.  Reid's world is ever-expanding, and he remained a serious baby throughout his first stroller ride, taking in all of the new sights, sounds, and smells.  Although I must say, the walk was more like a stroll- I think we stopped about every 5 feet to greet a nurse, nurse practitioner, or neonatologist that has worked with Reid at one point or another.  If all goes well, we should be able to take Reid to CHOP's atrium by the end of the week...not sure what he's going to think of the windows, music, and larger than life mobile hanging from the atrium ceiling.  Unfortunately, nothing can prepare him for the playful, lick-happy dog waiting for him at home:)

Getting used to it:)

First stroller ride...serious baby!

  











Barring any complications, I'm hoping that the next update title is "Home Sweet Home!"