The First Few Days

A little over a year after Baby J's birth I have been reflecting.  I feel like I should share some of the experiences we had in the hospital after his birth and while he was in the NICU for the benefit of others.  Before I share, though, I want to make it clear that I appreciate every doctor and nurse that cared for us during this time.  Despite my frustrations (that will become evident hereafter), they were doing their jobs to the best of their abilities and trying not to make us worry too much.  Doctors and nurses have very difficult jobs and I truly appreciate them for all they do.  I feel I should also warm those who might be squeamish, there's some details about procedures that Baby J endured that might make you squirm.

about 36 hours old

Day 1, Dec. 26:  My water broke in the wee hours of the morning the day after Christmas.  When we arrived they got me right in and hooked up to iv and monitors quickly, when I was ready for my epidural they got the anesthesiologist came as quickly as he could.  He struggled getting the needle into the epidural space because he had me sitting up and my belly was just too big for me to bend enough to make the space big enough, but as soon as I laid down he got it right in.  The nurses were courteous and the delivering doctor was understanding of my special circumstances (not being allowed to push hard or for too long because of my carotid artery).  It was wonderful and very special to be able to hold Baby J immediately after he was born and they let me hold him for what seemed like a long time before they took him to clean and measure him, the even did his first APGAR test while I held him.  After he was cleaned and I was feeling like sitting up Baby J was very eager to eat and latched on right away.  They let him eat to his heart's content before they moved us to the mother baby room.

Day 2: I was anxious to get home, I don't like hospitals and just wanted to have my whole family together.  I figured that since his birth was so uneventful that we would be released in the afternoon/evening.  This was not to be when his pediatrician came to visit and learned that he had not pooped.  She told me that this was one of the requirements for babies to go home, and as disappointed as I was at the time, I now completely understand why.  This is about when problems started popping up.  Baby J had been nursing for short bursts about every 3 hours since his birth, but that suddenly stopped after 24-hours.  He wasn't really waking up to eat and when I tried to get him to nurse he just wasn't interested.  Baby J was gagging occasionally and soon he started spitting up yellow.  The nurses kept telling me that it was all fine as long as it didn't turn green and stayed in small amounts.  This is also when they started taking him to try and stimulate him and get him to go.  As the day progressed he continued to refuse to eat so we tried some other techniques, a nipple shield, pumping and then giving him the bottle, and S and N (nursing with a small tube attached to supplement with formula), and the lactation consultant came for a visit.  Then his spitting up increased and he still wouldn't eat.  The spit up turned green and had flecks of brown in it occasionally, I was very concerned by this point.  Every time he spit I called the nurses who came in and kept telling me (as if I was a first time mom and just didn't know) that spit up was completely normal and that the color was fine.  I kept insisting it was't and they kept trying to downplay my concerns, it was really frustrating.  I finally stopped calling them, they weren't listening to me and they were treating me like I didn't know what I was talking about.  Lawrence and my dad blessed him, I felt a little better.

anderson in his mouth to prevent spit-up iv in hand

Day 3:  They finally decided to do something.  The on-call pediatrician ordered an x-ray of his tummy to try and see what might be causing the problem.  The x-ray showed gas trapped in his bowels and that his colon was narrowed on the left side.  This is when they decided to send him to Primary's and the NICU.  Lawrence was out having a special breakfast with Mr. E.  They rushed back when I called with the news.  They told me that he would have to be transported either in a helicopter or ambulance.  That's when I lost it.  I basically begged the doctor not to send him in a helicopter, my mom was there, she explained why.  He went in an ambulance.  By the time the ambulance and the transport team arrived Baby J was rather dehydrated.  They had a difficult time getting an iv in him, it was really hard to watch them continuously poke my baby boy.  When we got to Primary's they gave us a very quick orientation, showed us how the NICU worked, where the pumping room was and where and how to store milk, then took Baby J for another x-ray.  Mom made me eat, Lawrence went with J.  The second x-ray they injected barium contrast into his bum to see if it would shed light on the situation.  It shed some light, but didn't give a definitive diagnosis.

that's an iv in his head, the one in his hand went bad

Day 4-7:  Were spent waiting.  Holidays tend to slow business processes down and hospitals are no exception, labs were running slower than usual.  J had an iv and a central line that were giving him fluids and nutrition and was having lots of wet diapers.  For about 24-hours after the barium x-ray his body slowly expelled most of the barium, but nothing else.  His nurses in the NICU were very compassionate and so wonderful to us.  We went home every night to sleep in our own bed and to let Mr. E sleep at home as well, he spent most of the days at Grandma and Grandpa's house playing with his uncles.  On day 5 they finally came and performed a biopsy of Baby J's rectum to make a final determination about what was causing his problem.  The results from this took two agonizing days.  Day 7 presented the official diagnosis of Hirschprung's Disease and we were given a plan of action.

Day 8:  Surgery day!  After the biopsy result the surgery resident explained to us that his surgery would be in two parts, one where they would find the "transition zone" where the ganglion nerve cells had formed and place an ostomy then he would have another surgery later to reconnect everything.  I was too dazed to ask the questions I should have asked about why they were doing the surgery in two parts and what the heck an ostomy was.  My mom knew what he was talking about (she was there with me at the time, Lawrence had to work, or had a cold, or maybe both), but I was feeling a little lost.  I wish I had asked.  On surgery day they took my baby to a place I wasn't allowed to go and we had to wait in a room full of other anxious parents.  They couldn't tell us how long the surgery would take because of the nature of it.  The way it worked is the surgeons took cell samples every few centimeters and sent them to be tested for the ganglion cells until they found the transition zone.  The length of the surgery was dependent on how long it took for the pathologists to get the results and how much of his intestine was effected. Lawrence made me eat, the cafeteria had blueberry pancakes and bacon.

Day 9-11:  More waiting.  We did make some friends while in the NICU, other parents with sick babies from all over.  One from Cedar City, another from Vegas.  It was good to have people to talk to during the long, quiet hours holding my baby with all his tubes and wires.  On day 10 they finally let him have milk through an NG tube (nasal gastric, up his nose and down to his belly). Little bits at a time to see how it would effect him and his digestion, gradually increasing until they decided he would be allowed to nurse.  Day 11 they had me do a lot of "teachings" that were required before he could go home.  There was a video on ostomy care and a CPR video, complete with creepy CPR dummy baby that we got to take home.  The wound care nurses also paid us a visit and talked about ordering supplies to take care of his ostomy.  Again, I wish I had asked more questions about what they were ordering for us and why because we wound up with things that we never used.

Day 12:  On our way up to the hospital Baby J's nurse called to ask if I could spend the night with him so they could evaluate how well he was nursing, I also feel like they wanted to check my competency (or something).  We were already half-way there and didn't want to turn around so I could gather supplies, so at lunch time we ran out and picked up a few things I would need for what we thought would be an overnight stay.  The wound care nurses came by again to give us a chance to change his ostomy bag and let us know where the supplies would be coming from, get insurance information, and our mailing address.  The first time changing his bag was nerve wracking, it's difficult to see part of your baby's insides on the outside and you want to be so gentle with them when all the nurse is telling you to do goes somewhat contrary to that.  J was also allowed to actually nurse by this point and he seemed anxious to do so, but was also a little lazy about it.  But he didn't like the bottle either...  Lawrence had to leave us since there wasn't room for us both in the family room and he had to work part of the next day.  I was stuck at the hospital, no car.  At some point during the night Baby J's monitors decided they didn't want to work properly and the computer started panicking and beeping every 5 minutes.  The sweet nurse fixed it, but it only lasted about 12 hours.  J's ostomy bag that I had just learned to replace also sprung a leak.  The night nurse didn't know how to apply a new bag so I got to try it by myself.  I was nervous and it took a couple tries, but I got one on, that promptly sprung a leak a few hours later...

Day 13:  What we thought was supposed to be an overnight stay was actually a 36-hour stay.  I was getting frustrated and anxious.  I didn't like being cooped up in the hospital without a car, I hadn't had a shower and didn't have clean clothes.  Lawrence brought me some clothes and a few other things for the second night.  Some time during the day the nurses got word that one of the former occupants of J's NICU room had tested positive for an antibiotic resistant bacteria and we had to take extra precautions to contain it.  This meant more hand washing and wearing a goofy gown until we were cleared.  This also made me even more anxious to go home.  Fortunately J's new bag stayed on all day.  I didn't sleep well this night because I started having flashbacks and dreams about my stay in the hospital after my car accident.

Day 14:  I was done.  Nurses and doctors had been telling me for days that he would eat better and gain weight better at home, but that he wasn't gaining enough weight yet to clear him to go home.  How contradictory!  I was on the verge of walking out with my baby whether they cleared him or not.  My mom talked some sense into me and told me to explain my frustrations to the doctors.  A lactation consultant and occupational therapist visited to make sure I was nursing properly and that J had a good latch and suck.  They both noted that everything looked great, just that he was a little lazy, and made the same comments about him doing better at home.  When the doctors came by for rounds I put my foot down.  I told them that I needed to take my baby home, that I was having flashbacks, and pointed out contradictory statements.  They made me promise to take him to the pediatrician to be weighed the next day (Friday) and the following Monday for weigh-ins and set up a home health nurse to check in on us too.  Then there was a car seat check to be sure he would breathe fine in the car seat and that the straps were adjusted properly.  We had to wait for Lawrence to get off work at 5, and we were free!

We were so happy to finally have our whole family together under the same roof.  We stopped to pick up Mr. E and my parents also supplied us with dinner.  Baby J was two weeks old and finally home!