Wednesday, April 27, 2011

there and back again, a hospital tale

(i think dave would be proud of me for my tolkien nod in the title)
note: this is LONG and full of details. i don't blame anyone if they just want to skip it.

we were discharged on wednesday, april 13 from the hospital and while i enjoyed my hospital stay (honestly, i think the hospital after having a baby is great), i was so excited to get home to dave and logan. dave had taken the rest of the week off from work and i imagined us hanging out, watching movies, building forts, snuggling, reading books, going for walks and just enjoying our time as a new family of 4. unfortunately that's not the way things happened.

while at the hospital emma had been spitting up a lot. actually, spitting up doesn't do justice to what she was doing. throwing up seems a better way to describe it. the first night after she was born i guess she threw up a couple of times in the nursery and so the nurses lavage (suctioned out) her stomach. apparently she had a bunch of mucus in her stomach and the nurse said she must have swallowed some amniotic fluid while being born. the next day she continued to throw up a lot and later in the evening the nurses did another lavage and got more mucus out.

our first evening home she continued to spit up and it seemed to get worse. as we were going to bed emma seemed to be throwing up larger amounts and much more frequently (every couple of minutes). we decided to move her bed into our room for the night because we were worried she was going to choke on all her spit up. we laid in bed, listening to her spit up (projectile vomit) and we couldn't sleep. something didn't seem right. on top of all the spit up, a big red flag that something could be wrong was that emma hadn't had a wet diaper since we had gotten home (at least 12 hours. those familiar with newborns know they normally pee A LOT). even though we had an appointment with our pediatrician the next morning, we decided to call just to be on the safe side. after talking to a RN and a nurse practitioner we were told to take her into the emergency room. so just over 12 hours after we were discharged we were headed back to the hospital.

i'm a pretty independent person and not afraid to do most things on my own, but i did not want to go back to the hospital by myself. but we decided it was best for dave to stay at home with logan and so i had to suck it up. with that said, i think i alternated between crying and praying on the way to the hospital. i arrived at the er at about 1:00 am and i must admit that i felt a little silly explaining to the er doctor that i was there because my baby was spitting up. suddenly i felt like i should have just stayed at home and waited until our appointment with the pediatrician the next day (or technically that day). after hours and hours of waiting (and sitting in a really uncomfortable chair) the doctor said her electrolytes looked fine and he was about to send us home. until he called my pediatrician's office to update them and they told him to admit us. suddenly things seemed more serious. i sat in the room while 2 rn's and a doctor tried to place an iv on emma because she was dehydrated. she shrieked while they tried for at least 30 minutes without success. i couldn't watch and as much as i wanted to leave because i could hardly stand to hear her cry in so much pain, i also couldn't leave my 2 day old baby. so i sat in the chair and sobbed. finally they called down 2 nurses from the nicu and they were able to place the iv. at 6:00 am we were finally checked into a room in the pediatric ward. by this time i had been up for 24 hours without sleeping and i was a mess.

dave and logan arrived a few hours later, thanks to my friend mindy, since i had taken the car with logan's carseat to the hospital. the day was a blur. pretty much i remember having frequent breakdowns, the doctors doing lots of tests on emma and nobody knowing what was wrong with her. they did an ultrasound to check her pylorus and a barium swallow to check her upper gi (basically they were trying to make sure anatomically that she was put together right). luckily they were able to rule out those more serious possibilities. the barium swallow confirmed what we already knew/suspected; that she has really bad reflux. due to some compounds found in her urine (ketones and enzymes) they began testing her for metabolic diseases and they wouldn't let me feed her (in case she couldn't breakdown a protein or something in the breastmilk). the day was full of a lot of waiting, checking emma's diapers to make sure she was peeing again (since they were pumping her full of fluids from the iv) and some more waiting. dave also began 3 days of running in between our house and the hospital; trying to take care of logan, me and emma. i cried every time he left on thursday, but we knew it was more important for him to be with logan and try and maintain some sort of normalcy for him.
i remember going on a walk around the hospital with dave and seeing a husband and wife leaving with their newborn. i broke down because that had been us, 24 hours earlier happily going home without the slightest inclination we would be back, worried and wondering what was wrong with our daughter. i was also so worried about logan and how this would all affect him; especially our family being split up.

friday was a day full of more urine and blood tests, waiting for results and lots of sitting around (it's amazing how exhausting sitting around doing nothing can be). our daily routine for the next few days went like this: logan and dave would come and visit in the morning, we would meet with the pediatrician, dave would leave to go put logan down for a nap, my father-in-law would come stay at our house while logan slept so dave could come back to the hospital and be with me and then later my in-laws would bring logan back to the hospital. after getting some sleep thursday night i felt better about things and was able to make it through the day without having any major breakdowns, even though there was still a lot of unknowns. that morning as we spoke with the pediatrician he told us that if he was a betting man in vegas he would put his money on reflux alone and not a metabolic disease, but until we could get a good urine sample to run more tests on he couldn't know for sure (and we still couldn't feed her). early that afternoon we were able to get a good urine sample and were told that we should have the results back by that night or first thing saturday morning. at 5:30 pm we found out the test results looked good and i was finally able to feed emma for 5 minutes. it was so exciting and felt like huge progress! i don't think it was any coincidence that friday was the day things began to fall into place and we could see some progress. in addition to all the people praying for emma and our family, my best friend mindy had arranged for about 30 people to fast and pray for us that day. i cry (literally i am crying as i type this) just thinking about the love and collective faith that was exercised on behalf of our family. it strengthened us beyond our own power and wrought miracles.

dave stayed with emma that night so i could have some time with logan. he fed her small amounts throughout the night and i think he barely slept at all. but he loved his time with her. he sent me a picture of the 2 of them with a text that said, "our first daddy daughter date and i'm lovin' it." the next day the nurse commented to me on what a fantastic dad dave is (which of course i already knew ;). saturday could be summed in one word: waiting. i continued to feed her and they turned down her iv so that she was barely receiving any fluids from it. we watched and waited to make sure she didn't throw up her food and kept peeing (even without the iv fluids). we began to feel hopeful that we would be able to go home soon.

sunday morning the pediatrician came and told us everything looked good and we could go home! both he and the metabolic specialist (from another hospital that he had been working closely with and is one of the top in the country for metabolic diseases) are still baffled as to what was really wrong with emma. after her initial urine sample, the compounds never showed up in her urine again and they're not sure why there were so many problems with her initially that just seemed to "go away." we have to give her medicine for her reflux and i am constantly playing around with how long i feed her so that she doesn't spit up a ton (although no matter what she spits up a lot. we always have to keep a burp cloth handy).

as we look back on those 4 days in the hospital it seems like a dream, almost like it didn't happen. even as i was writing this, the story didn't seem like a big deal (for lack of a better phrase). but in the moment it was emotional, stressful, scary and a very big deal. yet we were able to see the hand of the lord and know that he was watching over us. i was reminded of the quote from spencer w. kimball,
"god does watch over us and does notice us, but it usually through someone else that he meets our needs." we experienced that. we felt so blessed and grateful for wonderful family and friends who visited us in the hospital, called to check on us, brought meals, watched logan, fasted and prayed for us and just loved us. it made a really hard week bearable.
emma with her splint that kept her from pulling her iv out. it was so sad to see her all hooked up.
logan was such a trooper. i know the hospital wasn't the most fun place for him to come multiple times a day. i included the fuzzy picture because we were kept on toes making sure he didn't pull any cords out or knock anything over.


Carla said...

She is so beautiful! I'm glad that everything is better now. What a wonderful miracle.

Cole and Mindy Smith said...

OH how we all love that little Emma Leigh. We would have done ANYTHING for her! Fasting just seemed like the best option- and BOY did it ever work! YEAH for Emma! So glad she's home- can't wait until I can FINALLY hang out with her...sheesh! By the way...crying and crying during the post. Knew the story- didn't matter. Still cried. Love you!

Sean and Katelin Bringhurst said...

OH Stephanie that is so sad. I am glad to hear she is doing better. Nixon still throws up a lot and he is 1. good thing you guys are great parents and can handle anything! Keep us updated on how sweet Emma is doing