Memory Monday

 This Memory Monday is for Danny and Hayley and their families.  I rarely think about this time, it was overwhelming and scary and honestly this was the first time I have been in the NICU at Presbyterian since our time there.  Our Nicu story was, like most, completely unexpected and shocking.  It flipped me inside out emotionally and, if I am honest, it took a long time for me to process.  Vance was born "just fine".  He was grunting and the nurse kept saying he was grunting and threatening something or other, but I was in a drug-in-love-with-my-baby induced haze and I did not want him taken away.  Looking back I knew something was off but again, I was VERY drugged from my cesarean section, the nurses should have taken him and they should have made sure he was okay.  Instead we spent about an hour in recovery, I got to nurse him (he latched on like a champ but couldn't continue b/c of the grunting).

 I got to hold this sweet creature who, at 22" long, had scraped and kicked and poked every single organ I own-I am sure of it!  After a full month on strict bed rest I was so excited to meet this little boy I had worked so hard to get here safely.  I had pre-ecclampsia  with him that started at 32 weeks, by 34 I was spilling protein and my blood pressure was creeping up.  I went on bed rest on June 1st and he was born July 1st after I begged my OB to take him out sooner than later.  I just had this almost primal need for him to be out.  She wanted to wait and take him the 7th of July.  She called me back later and told me I got my wish, he would be born the 1st b/c the OR was booked on the 7th.  I was more relieved than I can tell you.  When she opened me up for the c-section (which, before pre-e, we had planned to be a VBAC after 2 c-secs) she gasped and said "we made the right choice getting him out".  My uterus was so thin she could see through it, she could see his hair swimming in the amniotic fluid.  One nick and she was able to reopen my previous scar with her finger.  If that is not enough to send chills up your spine his cord was also completely entangled around him neck, chest, and feet.  He is my miracle baby.

 I was so relieved that he was safe and sound and in my arms.  He had big fat lips (like I did as a newborn) and his nose was just as flat as his 4-D ultrasound predicted.  His disposition was so calm.  He didn't cry at all, just a soft little cry, almost a whisper.

 I got to hold him on my chest and love on him and examine all his unique little features.  Just as we had with Faith and Alorah when they wheeled us down to the baby/mother unit Levi went with Vance and my Mom went with me.  They had just opened the new Mother/Baby wing that day so it was pretty chaotic and my bed was broken.  Being flat on your back after a c-section is hellishly uncomfortable.  Finally they got a new bed, but in that time a nurse burst into the room and told me, coldly, that Vance had been rushed to the NICU.  The tears flew.  I was a wreck.  Stuck in a bed, not able to do anything until I could stand to get into a wheelchair I had to wait.  I had no idea what was happening to my baby, I had to wait for the stupid spinal to wear off enough for me to stand 3 seconds and get into a wheelchair.  I was so upset.  A sobbing uncontrollable mess.  I remember for the first time thinking "I don't know how to DO this".  With my girls they were in the nursery for 30 min and back in my arms nursing well before I had to worry about the spinal wearing off.  I had no control, no baby, and the world was spinning.  At some point they made Levi leave b/c they had to poke Vance several times to get his IV in and they did not want Levi there.  During that time he came up to give me an update and my Mom went down to see Vance and take a few pics.  (I was never more thankful we had bought our first digital camera a few days before he was born).

 This was the first pic I got to see of him.  He was so big, it just didn't make sense.  His lungs were not mature enough for the outside world, combined with our high altitude he was the epitome of a "Wimpy White Boy" (en enduring term).  His lungs were the maturity of about a 35 weeker and the only guess anyone could come up with was that he didn't get enough nutrients because my placenta was probably not up to par due to the pre-e.  He spent 12 hours in the observation NICU, 2 days in the leven III NICU and then he was moved to the Extended Care Nursery.

 The hardest part was having to give him formula. As a militant breastfeeder I literally sobbed through his first bottle.  He was hungry but my milk had not come in and he was too weak to nurse.  He knocked the bottle back very quickly.  When your baby is hungry you do what you have to do and that is what I had to do.  Afterward I went on a pumping frenzy.  I didn't have much guidance on how to pump, so I did what I thought best . I pumped every 2 hours for 30 minutes around the clock.  Thankfully they sent a professional hospital grade pump home with me.  I drank a TON of water and tore myself away from him and pumped every 90 minutes (so out of ever y180 minutes 30 were spent pumping).  It worked and by day 3 he was on breast milk alone.  He did not latch on for 5 full days.  Finally with a nipple shield he was able to nurse and it was an exhausting feat every time.  I would nurse him, give him a bottle of expressed  milk, and then pump.  That went on for 3 weeks until he was strong enough to nurse full-time.  He nursed for 2 years.

 

 I had to leave him on the 4th of July.  That was also the day he developed Jaundice and I could only hold him for feeds.  Oh I cried.  Leaving empty handed was terrible.  I was back a few hours later, and I remember watching the fireworks from the NICU window.  The NICU is so much calmer at night.  The incessant bells are never quiet but it is dark and there is an essence of serenity.  I would pump and if it was 3am or 8pm I made sure that milk made it to his fridge.  I only missed 2 feedings while he was there.  Actually one of the NICU nurses was miffed that they never got to feed him.  I relished in everything that I could do.  His first bath, changing diapers, feedings.  Those small connections are so important.  They make your baby yours!

 After one full week in the NICU he got to come home.  On oxygen, but home!  He had home health nurses that came every week and weighed him, checked his oxygen levels, and slowly he got stronger.  He gained 1lb/week for the first month.  95% of that Mommy's milk.  Thankfully Levi had 2 weeks off so that second week he had off I spent most of it in bed bonding and sleeping with Vance-man.  Letting go of the strict NICU pace and getting on Vance-time.  He ate when he was hungry, slept when he was tired, and was spent a lot of time studying each other.  I went back to read my old journal.  I had to turn his 02 up and down quite a bit.  He was at 1/32 most of the time but he went up to 1/8 liter for a few days.  Little things can stress a baby with respiratory distress out.  If he was in his car seat, or any seat really, for too long his breathing would become tacky.  It was summer so I had to make sure not to let him get too warm.  I did not pass him around, making sure his breathing was okay was a constant concern.  I always called his home health nurse when I had to turn his oxygen up, and I always got advice on it (same thing when Alorah was home on oxygen last year).  If they show distress you have to turn them up and when they stabilize (breathing slows, retractions and flaring stop) you turn them down and see if they hold.  It's like walking a tightrope.  You go back and fourth and follow your instincts.  We learned with him that if we went anywhere we had to turn his  oxygen up to 1/16 or he would get stressed (probably b/c of the heat).  They do not generally send babies home until they require less than 1/4, the highest Vance needed at home was 1/8.  It felt amazing to have him home, but it took a long, long time to not freak out that he would end up back at the hospital.  We had strict hand washing/purell/paper towel procedures in place.  He managed to make it 4 mths before he got his first cold.

 

 My Dad came over and watched the girls so that Levi could take me to the hospital whenever I needed to go.  Sleeping on the couch for those 3am milk runs.  He was so tender and sweet with Vance.

 I spent a lot of time keeping Vance safe.  With two rowdy big sister's around keeping his oxygen tank from getting knocked over and his tube in place was no small thing.  Somehow we all managed.

 You can see the pump to the left of me, yes, I kept it right there in bed.  I kept everything in arms reach so that I could avoid moving Vance from room-to-room.  Although we did venture out when we had to.  It was summer, we couldn't spend the whole 5 weeks when he was on oxygen indoors.

 Slowly he grew.  I used bandaids to keep his tube in place, sesame street ones.

 His sisters were in love with him from day one.

 I love this.  "Now looky here, I want off this tube darnit!".  He got stronger and stronger.  I insisted that the ped send a pulse oximeter home. He would get very low at night so for awhile he was on it only at night and for naps, without that monitor we would not have known that he would go to 85% in his sleep.  Slowly he was able to come off of oxygen and just after my birthday (Aug. 7th) on the 11th the oxygen tanks got picked up.  Oh happy day!

 We called him ET foot.  The monitor was HUGE, I never took a pic of it but it was enormous.  I hated it, especially when it would blare at 3am waking him up and I'd have to turn his oxygen up or put it on if he was off of it.

 Finally the monitors and tubes were gone.  In the end our NICU experience taught me not to sweat the small stuff and to really, really enjoy him.  He is now perfectly happy.  He has not had one single lung issue since he was 4.  He did get Synagis shots every month from Sept of '04-May of '05 to protect him from getting RSV.  Because he was on oxygen for so long his official diagnosis was Bronchopulmonary Dysplasia which qualified him for the injections.  RSV in babies who have been on extended oxygen or on a ventilator can be very dangerous but Synagis protects them.  Getting insurance to pay for it can be tricky, in our case it wasn't.  Home health came once every month and gave him his shot.  With Faith in preschool and being diagnosed with asthma at 4 mths it was a little peace of mind and insurance....he never did get RSV, and I am still thankful.

Now my little NICU wimpy white boy graduate is healthy as can be.  His lungs are awesome (though he has extra space between his ribs from chronic hyperinflation, I figure that may make him an excellent track star some day).  The NICU is one of those things that you can't prepare for.  You can hear stories of it, you can sympathize, but until it's your baby in there you really can't imagine.  I would go home and the sounds of the NICU bells would blare in my head.  My hats off to NICU nurses.  When I first knew I wanted to be a nurse I wanted to do NICU.  Having experienced it, I don't.  If things don't work out with Peds. Oncology I think PICU would be a good fit, but just like respiratory stuff....there are some things that just hit too close to home.

To Danny and Hayley and BEAUTIFUL little Adelyn I hope so much that you can go home soon.  I hope your time there is as positive as possible, and I know you know she is in great hands.  Thank-you for letting me meet your sweet little miracle.  My thoughts are with all of you.  Some day you will look back on this time and re-process it and be amazed at your own strength.  Congrats on your perfect new addition.  She is one of the luckiest babies in the world to have you two as parents, and she has some of the coolest grandparents ever...and her aunt and uncle are pretty freaking amazing.  She is a very blessed girl.  I love you all.