After our little guy was born he was whisked away by doctors and nurses for tests, monitors and a quick exit to the NICU (Neonatal Intensive Care Unit). I had an epidural so I was not able to go to the NICU until the doctor gave me an all clear which meant 24 hours. Talk about highly irritated. I really wanted to see my baby and they wouldn’t let me out of my room until I could pee on my own. Seriously? I couldn’t feel my legs yet  and wanted to just get wheeled on down there but it was a firm “no.”

My  husband bailed on me pretty quickly as he was allowed to go to the NICU and see our son. He took pics of him on his phone and was really thoughtful in sharing those with me. Did I mention how incredibly hormonal, highly emotional and volatile I was feeling at not yet being able to see my son that I gave birth to? Yeah.

Finally the time came where I got to get wheeled on down to the NICU so that I could see and hold my son. My son. How odd is that? I have a son! Oh, he was sooo tiny and smelled so good. I cried. I just sat there in that wheelchair  holding him and crying. He knew my voice and you could see him calm down as I was holding him.  That made me feel like he too was waiting for me to get down to that NICU to see him.

Our son was in the NICU for 7 days total.  I was discharged from the hospital the next day and that was  hard. Leaving the maternity ward with my bags and my husband but without our son was surreal and  not a moment I look on back on without cringing. We were both somber as it was just not what you picture after having a baby. We were empty handed and we felt a little lost. We got home and checked in on things, put our items away, showered and headed back to the hospital. It’s only 5 minutes from us so we felt lucky to be so close. I’m not sure the nurses felt the same.

My husband dragged the pump up and bags of snacks, bottled water, etc. to the NICU. We introduced ourselves to the nurses on duty, grabbed a rocking chair for me and another uncomfortable chair for my husband and planted ourselves next to our son’s “crib” in this very tight area. They had screens up to give us “privacy” and we worked with it. The nurses showed us how to feed him through the feeding tube with the breast milk I pumped. They had a refrigerator and a labeling system in place for us so that I could store the milk and they could feed it to him when we left. Everyone was helpful there. They checked on me and my husband  as well as our son making sure we remembered to eat and drink. We would get to the hospital at about 7 a.m. and stay until almost midnight every day he was in there. My parents were a huge help because they took our daughter to and from school, made sure she was eating and would bring her to the hospital to stay a few hours with us. She would do her homework and help to feed and hold her brother. She wanted to know how to feed him through his feeding tube and she was quite good at it. He would just stare at her when she held him and she would giggle. These were good moments.

The first few days in the NICU are trying though. Lots of tests are being run to check for other syndromes or defects that may be present. I was assured this is all routine but it was still scary. We were just waiting to see if there was something else we needed to start worrying about. Every time a nurse or doctor came by to check on our son our hearts would skip a beat and we’d sort of stop breathing. No news was good news, right?  I couldn’t take it anymore and so I went over to the doctor that was on duty that night and asked what the test results were for all of the tests he had been having. She looked perplexed and said that she thought someone had already talked to us. I almost fainted. I felt sick and told her that no one had said anything and we’re over here worried. She told me that all of the tests came back fine and that  his cleft defect was isolated with no other syndromes or issues found. Relief. Except that I felt a little angry. Not at the information she just gave me but I really did not like the word defect as it was being used to describe my son.

Defect. I mean, it sounds like he is a part on an assembly line and as a bad batch he is one of the ones that gets tossed out for not being perfect. I know that this is just a word and that it is the word used to describe his difference but I still do NOT like it. He is not a defect nor does his defect define him. I wish there were a better way to describe this but there isn’t.  I walked away from the doctor and sat down with my husband.  I told him what the doctor said and he asked me why I was upset. I told him I don’t like our son’s face being referred to as a defect, isolated or not. To this day I still do not like it. I say that my son has been cleft affected because that is what happened. HE does not have a defect nor is he defective.

Many emotions are felt day in and day out at the NICU.  It was hard to leave each night without our son and I would lie in bed at 2 a.m. and call the NICU to check on him.  The nurses urged me to get some sleep because they were taking good care of him and reminded me that when we got to bring him home there would be no sleep or help so I should really be taking advantage of the fact that he was in such good hands.  They were right. I was exhausted. We would try to sleep but it was hard without your baby right there with you. We were missing someone and his presence not being felt in our house was obvious.  So as much as you try to sleep it’s going to be difficult.  It just is.

Our days consisted of meeting with the OT (occupational therapist) daily to work on feeding him with a special bottle and building his oral muscles so that they could remove the feeding tube and we could get him home.  He was  pretty eager to leave as well because he was working hard at learning to eat from that special bottle.  He would get pretty tuckered out because he was expending a lot of energy to do something that was not coming naturally to him as a result of the cleft palate, but we continued on. We also met pretty regularly with his team from St. John’s. Dr. Salomonson and Ann would come to visit and instruct us on the duoderm taping and placement of the nasal stents. They worked with us until we seemed somewhat comfortable. We would text photos and they would respond back with instructions on what to correct or do differently.

At about the 5th day the OT let us know that our baby was getting the hang of it and so were we.  She was going to recommend that we start the discharging process and to get him scheduled for his circumcision. Geez, our first surgery and I was so not ready!  It was quick and I’m told painless but who knows. We continued to work on feeding and our technique. We cut out templates of the duoderm tape and kept them in a Ziploc so that they were handy for us to put on and we wouldn’t be scrambling to cut one out and get one on if he was fussing.  We did as many things as we could to make it easier on us when we finally would get to bring him home.

The 7th day rolled around and the OT and nurses came in to watch us feed him once again and to measure how many ounces he had been taking in.  They informed us that they were confident the feeding tube could be removed and after that we would monitor him and his feeding for the remainder of the day.  He would be weighed and his ounces consumed checked and if all went well we could take him home at the end of the shift.  It was both exciting and frightening to hear that.  I mean we definitely wanted to bring him home but here in the NICU he was hooked up to monitors checking his heart rate and breathing with nurses monitoring his every ounce intake and growth every hour.  All of that would be gone once we got  home and that scared us a little.  So while our little one slept I rounded up a notepad from one of the nurses and began copying their chart so that I could continue to monitor his ounces at home and times he was feeding.  I had the nurse go over again on what I needed to do with his post-op instructions for the circumcision and we practiced putting in the nasal stents with the nurse there.

Our time to go home finally arrived and the outfit I had been carrying around in our bag of tricks was going to get to be worn for his exit from the NICU!  Our empty car seat that we had been hauling around was about to be used and the bassinet waiting next to our bed was going to get a little attention.  We took pics of him unhooked from his monitors and with his nurses that had cared so gently for him and us while there.  We got to bring our baby home and walk out of the hospital with full arms and hesitation.  It was a good day though.  The nurses told us to call them for any questions no matter what time and if there were any problems with feeding at home to bring him back to the NICU and they would help us.  We had a lot of support and felt like we got this.  Ha!

We got home and he looked as surprised as we did being in our home.  Our home felt like a place we just had not seen in awhile, which it was but with him here it felt different.  Our daughter would not be  home until the following day so it was just us.  The three of us.  It was good.  Our son did not see the bassinet initially as both of wanted to hold him all night and walk around with him.  He was not attached to monitors with lead wires that extended only so far and we had this freedom and space to move around in that was foreign.  The only person that slept at all was our little guy.  We stared a lot at him and whispered love you’s and gave kisses.

All of us did it.  We survived a week in the NICU!  Learned how to feed our son and get on a schedule of pumping and changing diapers.  Looking back we were parents of an infant and although there were more things to attend to than with a typical newborn we all adapted and just figured it out.  We tentatively did the taping and nasal stents but we did it and without crying (us crying not baby).  So survive we did.  And you will, too.

tdowell22

I live in SoCal with my husband and two kids. Love reading, writing, being a foodie and coffee aficionado. I support other moms of cleft affected children. Our family is continuing along on this journey and we seek to help other families navigate terrain we've already covered. All Smiles is what we want for all cleft kiddos!