17 weeks, 6 days

It’s been a while. Things have been pretty normal, growing kids, Lawrence working, and me staying home and doing the mom thing. But at the beginning of July we got a big surprise.  Baby number 5 would be joining our family in February. It wasn’t exactly our timing, but we were excited. I didn’t really waste any time sharing the news, at least not with family. Mr. E was excited, J was excited because E told him to be, and Princess A was clueless that her time as the youngest was coming to a close.  A few weeks later was the first appointment. An ultrasound was done to confirm the due date and I got to hear the beautiful sound of a tiny heart beating away. Everything looked good.  Aunt Kathryn took a fun picture for us to announce the pregnancy, and at the end of August we shared the news with everyone.

"That face you make when you realize there's 6 of us in this picture."

I had some morning sickness, but it was pretty mild. A second appointment found baby’s heart quickly beating away, and another ultrasound was scheduled for mid September. I felt some tiny baby flutters around this time, which is always exciting. However, a couple weeks before the ultrasound I had a nightmare about the baby that really shook me up. I borrowed a Doppler machine from a friend and was reassured to find the baby’s heartbeat, if only for a second or two. As the ultrasound drew closer I just couldn’t shake the feeling of unease the dream had left me with and it finally came to a head the Friday before the ultrasound when I realized that I hadn’t felt the baby move in over a week, possibly longer.  So a call was made and the doctors office squeezed me in for a quick check that afternoon.

What was supposed to be a quick check quickly became a living nightmare. The doctor started by explaining that my fears were probably unfounded and lots of things could make it difficult to feel baby movement. He started listening for the heartbeat with his Doppler, but became discouraged after a couple minutes and grabbed a hand-held ultrasound. He quickly found the baby but couldn’t see the flicker of a heart beating, so he tried with the Doppler again.  It went back and forth like this for a good 20 minutes before he finally admitted that I needed a real ultrasound. My worst fear was being realized. I was sent out to the waiting room to wait for the ultrasound tech, me and my three kids. She finally called me back and started looking at my baby. I anxiously watched for the tiny flicker of a heart, I couldn’t see it.  I listened closely, and couldn’t hear it. Then the tech said the words I had been dreading, “I’m so sorry.” The tears I had been holding back wouldn’t be ignored any more. The doctor came back in and explained that I had a couple options, but wasn’t very helpful or informative, then I was led to another room to wait for my mom and Lawrence. The boys played on tablets, Princess hugged me, and sat on my lap. Mom got there first, followed by my grandpa, and Lawrence. I was given a priesthood blessing, then we left. Decisions had to be made.

When a baby dies before 20 weeks gestation it is called a miscarriage. Most miscarriages happen before week 13, only about 1% of miscarriages happen after that. I was nearly 18 weeks when we found that the baby had passed. Most of the time the mother’s body realizes what has happened and takes care of business, but often in second trimester miscarriages this doesn’t happen, such was the case with me. When the body doesn’t do it’s job medical intervention is required. In first trimester losses the most common intervention is a d&c or dilation and curretage, a surgery where mom is usually put to sleep and the contents of her womb are scraped out to prevent infection. Another option is induction of labor and delivery, where drugs are given to the mother to cause contractions and the baby is born whole.  In second trimester losses most babies are developed enough that they can perform tests to determine what went wrong and/or the body can be buried or cremated, so whichever option is chosen, it is done in a hospital. We chose the induction.  The hospital asked me to come in around 8 Saturday night, since induction can take a long time.

We left the kids in the capable hands of Lawrence’s parents and I sobbed my way reluctantly to labor and delivery.  I didn’t bother packing a bag, all I took was a stuffed elephant I had purchased earlier Friday afternoon.  They put us in a room at the end of the hall, away from the mothers who would be delivering healthy babies and I had a very kind nurse.  I hadn’t been able to eat anything since lunch on Friday and I was a bit dehydrated from crying, so they had a difficult time finding a vein for an iv, it hurt going in, and they did an ultrasound to confirm that baby was gone.  Around 9:30 I was given four little white pills called cytotec to get my labor started.  I didn’t want any pain medication or anything that would make me sleep, I wasn’t going to miss any of this. I slept on and off through the night as the contractions weren’t very painful, though I did get a minor headache and upset stomach. I received more cytotec about 1am and again around 4. After the third dose things got more uncomfortable, they offered me an epidural, but I refused. Around 6:30 I couldn’t get comfortable, I tried to sit upright, but it was too painful, so after trying a few other things I decided to lay completely flat. As I laid down I felt the urge to push, so we called the nurse. She checked and told me that I could push and be done or wait for the doctor who was about 30 minutes away. I was not ready to be done, to put this final stamp on the loss of my sweet baby, so I tried to wait. Lawrence held my hand and my sweet nurse sat quietly by my side, now an hour and a half past the time she had told me she would be ending her shift.  After a while I could feel that I couldn’t wait any more, so with one gentle push my baby came. Baby came out with my bag of waters in tact. We held the baby that way until the doctor came.  When the doctor arrived he opened the bag of waters, looked over baby, and informed us it was a boy. Then we got to hold him. He weighed about an ounce, and was maybe 8 inches long, head to foot. He had ten perfect fingers, ten tiny toes, itty bitty ears, nose, mouth, and eyes. By all appearances our sweet boy was perfect.  It was a little after 7am. We were able to hold our sweet baby and give him a name.  He is our little Thomas.

Lawrence wanted to take the kids for breakfast, as he did with the births of J and Princess. So they met him in the cafeteria. I was able to sleep for a few hours and the nurses took Thomas to the fridge to help preserve his body. A few hours later our dear friend Valery came and took pictures for us. Just as she was about to leave some women from a group for families who have lost babies, called Share, came. They gave us some more picture ideas and took molds of Thomas’s tiny hands and feet. Grandparents came to visit and Lawrence, along with his dad and mine, blessed our tiny boy’s body.  We kissed our sweet boy goodbye and I was discharged.

We decided to have our dear friend, Shawn Warenski, take care of our boy for us. He did such a beautiful job for Ethne and it was comforting to know that Thomas was being taken care of by someone we know and love. Calls were made to Herriman cemetery to try and get a waiver to their one per plot policy. The kids seemed confused and E wanted to see the baby. We made arrangements to see him on Thursday. The boys picked out a transformer toy and each got matching ones and A chose a car to give to baby Thomas. At the funeral home they each held their baby brother. Then we placed him and their gifts into a tiny casket.  On Friday we held a small graveside where Thomas was laid to rest on top of his oldest sister.

We'd like to thank all our family and friends that have been praying, helping, and supporting us this last week.  We would also like to give a special thank you to Shawn Warenski and Warenski mortuary for taking such good care of our babies, Miae's floral for the beautiful flowers, Valery Bunnell for taking pictures for us, Share Parents of Utah for being our new friends and making molds of Thomas's hands and feet, and to Herriman City and Cemetery for allowing us to keep our children together.

The Birth

My first labor started in the wee small hours of the morning with my water breaking and lasted 20+ hours.  With Mr. E it started fairly early, and lasted about 11 hours.  Baby J's was a rather exciting start and it went about 6.  Baby girl's labor really started at about 3:30 in the morning, but We didn't get to the hospital for 5 more hours, she came less than 3 hours later.

On May 23 I woke up at 3:30 am to do that thing that pregnant women do often.  On my way I felt a trickle run down my leg and suspected my water had broken.  They tell you that if you aren't sure it's your water that you should lay down for a while, at least 20 minutes, and if you have more when you get back up then it's definitely your water, so that's what I did, and by all appearances it wasn't my water.  At this point I couldn't sleep any more, I tried, but I just kept tossing and turning.  About two hours later I started having pretty intense contractions, they were tough to breathe and talk through, but not super regular or close enough together.  Lawrence woke up and asked if he should get the boys up, I told him not to.  About 6:30 I started packing my hospital bag, it was on the to-do list and I wasn't sleeping, so why not?  Lawrence watched me stop every 8 or so minutes for a contraction.  I still didn't want him to get the boys since I didn't really think this was it, I was NOT about to get sent home for false labor.  The boys woke up at their usual time, 8am and as they did so I raced to the bathroom, this time I was sure it was my water.  I called my mom, finished packing, loaded the kids in the car, and we were off to the hospital.  When we got there the nurses got me into triage, checked me out and informed me that I was much further along than I thought I was.  They rushed me to a delivery room and called anesthesia as quickly as they could.  My epidural went in at about 9:30.  I was able to rest a little, have an Italian ice, and soon it was time to push.  My doctor was still out of town, so the on-call doctor had to deliver Baby Girl.  After my first push it became apparent to me that the epidural wasn't quite working right, I could feel everything except the contractions.  Two pushes (and a lot of encouraging talk from Lawrence and the nurses) later Baby Girl came out screaming.  I held her on my chest and cried.

She was perfect, ten fingers, ten toes, a face just like her siblings, 8 lbs. 1oz (my smallest), 20.5 inches long, and dark hair.  That's right, dark, like my natural color, no real hint of red.  To say we were surprised would be an understatement.  It was certainly not a bad surprise, and she is beautiful. She nursed great and slept well, and just begged to be snuggled.

Then came the wait.  Before J was born I never thought I would pray for something like a stinky diaper, but here I was, praying hard for that very thing.  After about 12 hours I started to get really nervous.  Then, at about 18 hours old it happened, and we had a little party.  Yep, I said it, we had a celebration for a poopy diaper.

After that we were allowed to go home, we stayed in the hospital just over 24 hours.

Mr. E and Baby J (He needs a new nickname) are head over heels in love with their baby sister, they think she is "SOOO cute!" and we tend to agree.

The Pregnancy

Baby girl made her arrival at the end of May, but considering I've been MIA since April I thought I'd back track a little before sharing about her arrival and name.

I always wanted to have a big family.  I had plans for 3-5 kids, while Lawrence always said 3-5 boys and however many girls it took to get there.  After the accident I struggled with the decision to have more children.  I was terrified of losing another baby.  After talking it over with Lawrence and lots of prayer we decided to move ahead and get pregnant with J.  Then there were complications with J.  We were so happy to have him, and he has been a great (strong-willed and often frustrating, but sweet and fun) addition to our family.  I was really content.  My two boys were active and kept me on my toes, and I love them very much.  I felt like I could be done and be really happy, and I probably could have.  We had been discussing having another baby, but I was just unsure.  My pregnancy with J wasn't the easiest and I was concerned about having another HD baby, plus I was really happy with just my two boys.  Lawrence told me that it was my decision, that he would support me in whatever I decided, but he wanted me to be really sure.  He encouraged me to fast and pray about it.  So I did.  Soon I had my answer, there was a little girl waiting to join our family (more another time).  Soon thereafter we found out I was expecting again.

I've never really struggled with the morning sickness that plagues so many women while pregnant, and I count myself very lucky, but I have had other pregnancy issues.  When I was pregnant with Baby J I struggled physically with some very unpleasant pelvic/hip pain.  When I asked my doctor about it he said it was a normal pregnancy symptom and gave me a pain killer for the days it got bad.  After J's complications I was concerned with taking pain medication again, so I was pretty determined to find an alternative, should I face this problem again.  It showed up pretty early this time around, and there were days when I couldn't walk or move much because it hurt so bad and over-the-counter medicines didn't come close to helping.  I researched possible causes and methods to help relieve the pain and asked for help from some friends.  My doctor offered me pain killers, but I was pretty determined not to use them. So I started physical therapy just as I was entering my third trimester.  As much as I'd like to say it made the pain go completely away, it didn't, but it did improve some.  The therapist knew me from after the accident and I think it helped that he was familiar with my previous injuries.  I still had some pain, but the pt helped strengthen my muscles and ligaments enough that it was more bearable, it also helped keep my pelvic bones properly aligned (which was part of the problem).

Emotionally I was more prepared for the struggles I might face and they really weren't as bad as they were with Baby J.  I did have a few minor breakdowns, that mostly revolved around feeling overwhelmed by housework.  It also helped that Lawrence had a new job and was home more through this pregnancy than he was with J's.  He loves this new job and it only has him working 40-45 hours/week rather than the 50-60+ he was working most weeks before.  Having that support at home was really crucial to my emotional well-being.


I tried harder this pregnancy than I have before to keep my weight under control and I managed to only gain about 35-40 pounds.  I didn't have a big problem with swelling, until the last month or so.  Then in the last month and a half I started to notice my blood pressure gradually increasing.  About three weeks before my due date it crossed into the danger zone.  This was also the time that my doctor informed me that he was leaving for a two week vacation.  He offered to schedule an induction for me for his first day back.  I discussed it with Lawrence and decided that it was a good plan.  At my next appointment my blood pressure was even higher and I was showing other symptoms of pre-eclampsia, the NP (that I saw in my doctor's absence) told me to watch for swelling, drink more water, and rest as much as possible.  The induction was scheduled for the following Friday.

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!

Rainbow Baby

A rainbow baby, as defined by Urban Dictionary is a baby born after miscarriage or stillbirth, but most angel mommies define this as any baby born following a loss.  It is a reference to rainbows that form after a storm that bear the promise of brighter days ahead.

Baby J is our rainbow baby.

And what a rainbow he has been.




Sometimes there's a storm and then there's some calm when the sun shines and everything seems good, a rainbow even forms, but then the storm rears its ugly head again.  Baby J's arrival was much like that.

During my pregnancy I struggled both physically and emotionally.  My body was still in recovery mode and I hadn't gotten into as good of shape as I should have.  I had pain in my hips, especially my left hip, that made it difficult to sleep, bend, and even walk sometimes.  But worse than the physical pain was the emotional pain.  I struggled to allow this baby into my heart.  I tried, but it was much, much more difficult than I anticipated.  I knew that this baby was meant for us, that he could help at least put a bandage on my broken heart, but it was still so hard to let him do that.  Until he was born.

I remember the first words I said to/about Ethne, I think I even remember what I said to Mr. E.  I am most certain of the first words I said to Baby J, I sang "Bushel and a Peck" to him.  And in that moment I felt Ethne in the room with us.  I knew that she had escorted her brother into the world, and that she was there to help me open myself up to him.  For that moment the constant ache that started when Ethne passed away abated and was replaced with incredible love and joy.  For that moment all three of by babies were, at least in spirit, on this earth and very present, safe, and happy.  It was far to short-lived, but for a few days it was very easy to reflect on that feeling and to allow my sweet new baby into my heart.  This was the eye of our storm and that sacred, special moment was the biggest, brightest rainbow I have ever experienced.





Then they whisked him away.  Ok, it wasn't so much of a whisking as much as a slow process in which the nurses made me feel like an over-protective, clueless, first-time-mom and the doctors made me worry excessively before they finally determined something was very wrong and that my baby needed more specialized care.  The storm had returned.  Now I was left with an aching for my baby that was sick along with the permanent ache of grief for Ethne.  He was blessed, tested, poked, and monitored more times than I can remember.  When he was finally diagnosed a small weight was lifted from my shoulders, the storm lightened a little.  But my baby still had to endure surgery and recover.  Two very long weeks after his birth my Baby J was able to come home.  The storm was over and the rainbow was cast, nearly as bright as the rainbow at his birth.

I am so very much in love with my sweet, happy, and gentle baby boy.  I am so grateful for the experiences we have had with him, the bad and the good.  He is such a special and brave boy that has blessed our family in so many ways.  He is a miracle, in more ways than one, just like a rainbow after a storm.  His smile lights up a room.  His beautiful red hair and blue eyes, just like his sister's, draw everyone he meets in.  I am so very, very thankful for my rainbow baby, not only once, but twice!

Happy birthday, sweet Baby J.  Thank you for being our rainbow!

Surgery Prep

Before Baby J's pull through surgery I tried to prepare myself for the surgery and for life after the surgery.  I read about others' experiences, learned about the diaper rash and found some things to try to help with it, and got in touch with other HD parents.  But there are some things I wish I had checked up on and others that I'm glad I did.

In preparation for Baby J's surgery and subsequent hospital stay I packed a bag for myself, since I was the one that would be staying at the hospital with him.  I also packed a bag for Mr. E since he stayed with his grandparents most of the week.  I asked some other HD parents what they recommended I take with me.  I felt pretty well prepared for the hospital stay.  I found that the accommodations at the hospital were better than they were in the NICU.  There were shared showers for each wing of the unit, we had a shared room with a television in each half of the room, and a shared toilet and sink in the room, a pull-out chair bed, and every day a courtesy cart came up to the unit with free breakfast.  There was also a Ronald McDonald house a floor down that I was able to utilize a few times.

I wish I had called the hospital and asked about accommodations available to parents in the infant unit.  I also wish I had asked other parents what to expect during recovery from surgery.  Calling the hospital would have given me better insight as to what to pack and what they would provide for me and Baby J.  Had I asked other parents about recovery I would have been more prepared for some of the side effects of surgery I could expect, some of the stresses for me, and some of the requirements the doctors' would have for release.  I also would have been able to stock up better on supplies to combat the diaper rash immediately upon release, rather than having to take a trip to the store as soon as I got Baby J home.


In my bag for the hospital I packed:  enough clothes for the longest estimated stay, toiletries, lotion, hand sanitizer, towel, wash cloth, makeup, charger cables, my laptop, phone, pen and paper, some pre-packaged food, a few movies, pillow, blanket, slippers, my wallet, a water bottle, and my breast pump parts.

I was happy to have my own toiletries (the hospital had some, but nothing great), and my own pillow and blanket that made sleeping in the hospital chair/bed a little more comfortable.  My laptop and my own movies were really nice to have to keep me from getting stir crazy while staying in the same room for 5 days.  With the food I was able to avoid eating out too many times during our stay, avoid vending machine junk, and to also help out a few others with babies in the hospital.  I was also again able to pump breast milk for Baby J to have when he was allowed to eat, which I then donated to another mom who could use it when I probably wouldn't.

I wish that I had been aware that Baby J wouldn't get to eat until after his bowels began to function post-op.  I was quite worried about him being hungry and was frustrated that I wound up pumping longer than I had planned.  I wish that I had been warned about the potential for tummy upset once he was allowed to eat and the lovely vomit that ensued, I was scared for Baby J (there was a lot of it), and scared that the surgery hadn't really fixed things.  I also wish I had been told to stay on top of his pain meds and to not push weaning him off of them, I feel like I pushed weaning him off them too quickly in my haste to get him home and might have caused him some unnecessary pain.  I also wish that I had taken the advice of a friend who had spent much more than her fair share of time sleeping on a hospital chair/bed and taken an extra mattress pad to sleep on, I could have spared myself some sore muscles/neck/back.

I share this so I can remember in case we have a hospital stay in the future and also so that others in the same or similar situation can learn from my experience.

My Nemesis

The stairs...

Anyone who knows me knows that I have a bit of a clumsy streak.  I blame this on genetics.  Stairs and I have never been the best of friends.  I fall down them, trip up them, and otherwise don't always get along with them.  Why this didn't cross my mind when we were looking at (and purchasing) a house I'm not sure, because things might have gone a little differently had I thought about my never ending conflict with stairs.  But it didn't really cross my mind and we purchased a house with a lot of stairs.  Don't get me wrong, I love our house, and I love our ward and neighbors even more-- I just have a love/hate relationship with stairs... all of them.

About a month ago I was carrying a pack and play down the stairs and took a wrong step, on the second step down.  I took a not so nice bouncy ride down the stairs and found myself bruised and walking funny for a few days.  To be honest, I feel lucky that it took me so long, while living in our house, to take such a tumble down the stairs.  I was also feeling lucky that I wasn't carrying Baby J at the time.

Last Friday (Aug. 15) I had another encounter with the stairs that did not end quite as well.  I was doing something that wasn't so smart.  I was trying to get some things cleaned and organized and in the process I had found several items that needed to go to the basement.  I didn't want to make a whole bunch of trips up and down the stairs so I was stacking stuff on the top step to the basement.  As I did so I leaned over the baby gate at the top of the stairs.  I thought to myself that I shouldn't be leaning over the gate like I was.  Just as that thought left my mind, said baby gate gave way and I went with it, head first, down the stairs.  Baby J and Mr. E were playing contentedly in the family room, so neither of them were in danger of getting hurt or coming along for the ride.  About half-way down I heard a lovely snap and before I knew it I was in a painful heap at the bottom of the stairs.  A quick self assessment told me that my head and neck were both fine and that the snap had come from my right arm.  I sat myself up, let loose a scream or two and gingerly placed my obviously broken right arm on my lap.  I found my phone a few steps up as Mr. E made his way down the debris littered stairs to me.  "Mommy, you fell.  Mommy, are you ok?  Mommy, you're crying..."  Yes, yes, yes...  My possessed phone was refusing to make an outgoing call.  I shut it off, "Mommy, your phone died."  Turned my phone back on and hefted myself to my feet with another scream.  Got to the top of the stairs and on the floor near Baby J, phone finally rebooted.  Try to call Mom, no answer, great.  Dad, no answer, shoot.  Try to call Lawrence at work, call is interrupted by Dad returning my call, possessed phone freaks out, hang up.  Dad calls back, "I fell down the stairs and broke my arm come take me to the ER."  Hang up, call Lawrence.  He feels helpless, tells me to call Sarah.  Call Sarah, she comes right over.  Meanwhile Baby J is upset because I'm upset so I somehow finagled him onto my lap.  Sarah made it over with another neighbor hot on her heels.  Sarah took J and started getting him food, second neighbor got E's swim trunks and took him to Sarah's house where there was a party going on, complete with a water slide.  Then the husbands showed up, and they gave me a blessing.  This helped calm me some.  Finally Mom and Dad showed up.  Mom took me to the ER, dad stayed with the kids.  Then it got boring.

We waited for an X-ray to tell us how bad the break was and if it would need surgery or could just be set.  Then we waited for the orthopedic doctor to come set it.  Some time during the waiting Lawrence got an employee to come in so he could leave work and be with me.  Then Mom got a call asking where my baking soda was, my youngest brother had been stung by a wasp, three times...  Mom left to attend to swelling post stings.  The orthopedist finally came with a team of doctors to put me out while he set my arm.  According to Lawrence I kept telling Mr. E to get off me, that he was hurting me, during the procedure.  They set the bone, splinted my arm and we waited some more, this time for the sleepy drugs to wear off and for the doctor to discharge me.  We didn't get home until 1 am...

On Monday I went back for more X-rays to see if the bone had shifted and to cast my arm.  Fortunately it was a clean break, it set well, and didn't shift, so I didn't need surgery!

Lesson learned, don't lean over baby gates.  I can laugh at it all now, so you can too.

Life With a Stoma

This is going to be a slightly boring post for anyone who doesn't want to know about stoma care, so if you don't feel free to skip it, but I feel like it needs to be made.

I meant to make this post while Baby J still had his stoma.  I was going to make a whole video and it was going to be awesome.  But I'm not that good, so it didn't get done.  April came around faster than I thought it would and I didn't have hands to help me make the video (Lawrence was working crazy hours earlier this year).  So I'll make the post now and include lots of pictures.

When a person has as stoma they have to wear an ostomy pouch to collect the output from their stoma.  There are many different types of stomas and they can be just about anywhere on a person's belly.  Baby J's stoma was called a double barrel loop stoma because both the functioning stoma and the mucus fistula (the non-working part) were in the same place, attached on one side and looped together.  This was easier to take care of than some other types of stomas because the two pieces were together.  Some people have two separate stomas, the working one and a mucus fistula, that are sometimes close together and sometimes not-- occasionally these require two ostomy bags.  But I'm not here to talk about stomas etc. just to talk about Baby J's stoma and how we took care of it.

Before we left the hospital the nurses showed us how to take care of the stoma, there was also a video we had to watch.  Then the nurses placed an order for ostomy supplies with a medical supply company for us.  I wish I had asked more questions about what they were ordering and why because when our first order came it had supplies in it that I didn't know how/want to use and I was confused about how much of everything we had received.  I wish I had taken more time to talk to the nurse, asked her what she was ordering, how much, and why she was ordering the things she was.  This would have saved us some money and some confusion in the first few days home with Baby J.

The first few days (maybe even week) after we brought Baby J home from the hospital we were going through a lot of ostomy pouches, like 2 or three a day.  It seemed like nothing we did worked to keep them from leaking.  The hospital sent us home with a whole box of pouches and supplies to get us through until our order of supplies was delivered.  It turned out that the pouches we were using were too small for our chunker baby.  I went to the internet for some help and reached out to other parents of children with HD.  They were super nice and gave lots of suggestions to try.  We tried some of their suggestions and finally found a combination of tricks that worked well for us.

Here is a step by step of what we did to keep pouches on Baby J and the products we used that worked well for us:

Prep:
You may need to restrain the child:  the easiest way to do this is to have another adult to help hold down arms and legs, but you can also use a blanket or two to swaddle arms and legs.  You do this by getting a larger blanket (or two small blankets) and laying the child on them as if you are going to swaddle them with a corner on each side, then pin one arm next to the child's side, wrap blanket over it, then tuck the blanket corner under the child, do the same on the other side.
Cut a hole in the wafer that will fit around the stoma.  We were lucky in that Baby J's stoma didn't change size much so I made a template from an old wafer's paper backing that I was able to use over and over.  Then warm the wafer so the adhesive will form to the skin well-- if you are using a one piece system be careful that your heat source isn't too hot or it will melt the bag, this isn't a problem for two piece systems-- I put the one piece system in my bra or sat on it to warm it.



1.  Remove the old bag and wafer, if you use a one piece system they come off together, sometimes on a two piece system the bag and wafer will come off separately.  Unfortunately this often makes kids/babies cry because it's like pulling off a big bandage.

2.  Clean the area around the stoma with a gentle, lotion and scent free soap, water, and a lint free cloth.  We used Johnson and Johnson's baby wash.  You have to scrub a little to make sure things get really clean and be sure to rinse well and then get it thoroughly dry.  This was easiest for me to do in a bath.

3.  Spread stoma powder on the area that will be covered by the wafer/bag.  The stoma powder will collect on any remaining adhesive residue, this will appear slightly raised and the stoma powder won't easily blow away.  Rub these areas vigorously with your finger (I wore gloves for this part) to get all the residue off his skin.  This ensures a good seal between the new wafer and the skin.  Rinse with clean water and dry.

4.  Warm the skin by placing a warm pack or hand over the stoma and surrounding skin or using a blow dryer.  This makes the adhesive on the wafer mold to the skin better.

5.  Apply cavilon skin protectant to the area that will be covered by the wafer, I used the wipes, but there is also a spray available.  Do this in at least 3 layers as this will cause "crusting" and make the wafer stick well-- allow each layer time to dry before applying the next.

enjoying the warm pack

6.  Apply stoma paste around the base of the stoma like a caulk.  We used a syringe to make sure the paste went on in a thin ribbon and was easy to manage.  Also put paste around the hole on the wafer that will go around the stoma, after peeling off the paper backing.

7.  Place the wafer and/or bag over the stoma making sure there are no wrinkles in the wafer.  I used a q-tip around the stoma to press the wafer down and make sure I got a good seal.  Then warm the bag/skin and put gently pressure on the wafer to ensure a good stick.

This system kept bags on for up to three days for us.

The only other trick to keeping bags on, that we found, is emptying it often.  I emptied it at every diaper change-- more often if it filled with gas between.

My list of stoma care essentials:

Hollister one piece bag and wafer system
Stoma powder
Stoma paste
Syringe
Nitrile gloves
Johnson's baby wash
Lint free gauze
Blow dryer
Wash cloth
Water
Cavilon wipes
Q-tips
Scissors
Marker (to trace the template onto the new wafer)
Changing table
Blankets
Another adult

In His time

Apparently I have to keep learning this lesson, that things I want/need happen in the Lord's time and not necessarily in my time.

After high school and upon starting college I was anxious to get married and start a family of my own.  I dated quite a bit and was even engaged at one time, but that didn't work out and I was incredibly disappointed at the time.  But had that worked out I wouldn't have met Lawrence and we wouldn't have the beautiful family we have now.  Marriage didn't work out exactly when I wanted it to, but when I needed it to, and with the person that I need(ed) in my life.  The Lord knew this even though I didn't.  I am beyond grateful for Lawrence and our temple marriage.  He is a hard working provider, a wonderful father, and my best friend.

G and I wrestling

Growing up I was happy with my one brother, but I always thought it would have been fun to have more siblings.  My parents considered adoption when I was younger, but it never felt right to them.  It was finally right when I was a junior in high school and about 18 months later our family was blessed with my brother G.  He is such a great example to my kids and a really proud uncle.  Then they did foster care and went through a handful of children who were eventually reunited with their biological families until I came into our lives.  He is a happy, busy (super, extra busy) boy who fits right in and loves my babies too.  I is also a little younger than Ethne and I'm sure my parents had always thought that their kids would be older than their grandkids, but both Ethne and I joined our family when they were meant to.

When I was pregnant with Ethne my mom found out that she had a tumor on her pituitary gland and would have to have it removed.  Travel was difficult, she was sick, and I was scared and a little helpless to do anything for her.  Ethne was born four days before her due date.  This allowed my parents to come see her and us to visit my parents for Thanksgiving, before my mom had to have her surgery.  It was such a blessing to me to be able to see my mom and for my baby to meet her Grandma.  My mom is fine now and the tumor was benign, but that was a scary time for all of us.  Ethne's birth allowed us time together and gave us something else to think about when we were all consumed with worry about my mom.

Through my entire pregnancy with Baby J I was certain he would come early.  Both my other two were early, so this boded well for me.  I was determined that he would be born before Christmas.  The last month or so I was done.  I was tired, sore, big, and beyond ready to have this baby.  It had been the most difficult of my three pregnancies with some morning sickness, soreness that I hadn't had before, and I was also battling with emotions that I hadn't experienced before.  I prayed that he would come so I could be more comfortable and have less pain.  So when contractions started coming pretty regularly on Dec. 21 I was thrilled.  But it wasn't to be.  After going to the hospital twice in 24 hours only to make very little progress and have the contractions stop, my hopes were dashed all over the floor.  Little did I know that this was a blessing in disguise.  Five days later, on the 26, my water broke and the contractions were unmistakable, Baby J made his entrance.  I was excited to spend as little time in the hospital as possible and take my late Christmas present home to his brother.  But you know how well that worked out.  Again, I was beyond disappointed that my baby was sick and wouldn't be coming home on my schedule.  It was also frustrating to sit around the hospital and wait for the holiday lag to pass so we could get tests done and find out results so we could know what was wrong with our baby.  Had Baby J been born much earlier we would be paying a lot more for his surgeries and hospital stays, also if he had been diagnosed sooner.  Our insurance last year wasn't the best, but it covered enough for the last 4 days of last year that we weren't left with too many out of pocket expenses.  Our insurance that kicked in on January 1 had a reasonable deductible and not too bad of an out of pocket max (both of which we have met).  Had Baby J been diagnosed sooner the other insurance had a higher deductible and no OOPM.  While it meant that I was uncomfortable a few days longer than I really wanted to be Baby J came just when the Lord needed him to come.  Even though there have been a lot of bumps along the way, I'm glad he came when he did and thankful that someone who can see the grand scheme of things knew when his arrival would be best for our family.

I'm sure that I will continue to be taught this lesson, and I will continue to look for the blessings that come from things happening in the Lord's time and not always in mine.

The E Word

Enterocolitis.  From the time Baby J was diagnosed with Hirschprungs Disease doctors and nurses started mentioning this word.  They said we had to be on constant watch for it because it could be deadly.  As if I wasn't worried about enough, having just had a baby and having that baby be diagnosed with a condition that I had never heard of.  Now I had to watch for an infection that could potentially kill my baby.  No one really told me what it was or what caused it, just signs and symptoms to look out for.

We were pretty lucky while Baby J had his colostomy.  We were extremely cautious too.  He didn't go to church, I didn't take him shopping (except in an emergency), and we avoided sick people at all costs.  He never got this dreaded infection.

I finally figured out what this dreaded word means.  Enterocolitis is an infection caused by a build up of bacteria in the intestines and is very common in people with HD, especially babies and young children.  See, your intestines house a lot of bacteria.  Much of this bacteria is good and helps with the digestion process, it is supposed to be there (think probiotics).  But if you get too much of the bacteria, or if bad bacteria doesn't get expelled, it makes you sick.  Enterocolitis can kill the appetite with nausea, cause swelling which can block things up, releases toxins into the blood, and often lands the person in the hospital.  It can be caused by any kind of infection such as flu, colds, ear infections, and common antibiotics (which can cause a build up of yeast in the gut).  The best way to cure it is to clean everything out, which often means other antibiotics, specifically one called Flagyl.  This particular antibiotic basically kills everything, even the good bacteria.  It is hard on the body and apparently tastes awful.  Another way to cure it is to clean things out in a different way, a rather unpleasant way, with washouts or enemas.  If caught early enough this can clean things out without using antibiotics and without a hospital stay.

Baby J has had some follow-up appointments with his surgeon to make sure everything is healing how it should.  At each appointment I have been admonished to watch out for this unpleasant infection.  At his most recent appointment I was given equipment to perform the washouts.  She instructed me that, should Baby J get so much as a cold or should have to take antibiotics for anything (including flagyl) that we would have to do washouts to prevent enterocolitis.

The weekend before this appointment Baby J had been having a small fever, diarrhea, and vomitting.  I was getting worried as these are signs of the E word.  But he was acting pretty much normally, the fever was low and didn't last long and the other tummy problems were inconsistent.  After the appointment his appetite started to diminish and he became increasingly fussy.  I prayed about how to help my baby, Lawrence blessed him that he would get better, and soon I decided to try the washouts and see if that helped.  Immediately after the first washout his appetite was back and he became his happy self again.  After a few days Baby J is feeling much better and his symptoms are quickly disappearing.  He most certainly had this nasty infection and we caught it early enough that the washouts have cleaned it out without a hospital stay or the nasty flagyl.  I am so very thankful for answers to prayers and Priesthood blessings that helped my baby get better without having to go to the hospital.  I am also grateful for doctors that have studied and know how to help with things like this.

Sleep(less)

For the last few months Lawrence has been working graveyards.  the shift offered a little extra income and was also less busy, so he had time to do his homework and studying while at work.  But it had its disadvantages too.  Like Lawrence slept during the day and he wasn't home at night.  The LM just wanted to play with his daddy when he was home so LM would "sneak" into our bedroom and wake Lawrence up.  And I don't sleep well without Lawrence (not that I'm really sleeping well at this point anyways...) so I would stay up late and then toss and turn most the night.

But happier days are on the horizon!  Lawrence got a new job!  He will be working more "normal" hours and be able to play with LM when he's home and sleep at night.  We are so excited for this new job and the experience it will bring and the opportunities that come with it.  And to have Lawrence around more during the day and night.

I remember after the accident trying to sleep in the hospital.  Those bed just aren't made with comfort in mind.  Yeah, they can sit up and put your feet up and do some cool stuff, but the mattresses really suck, the pillows tend to be flat, and it just isn't the same as being in your own bed.  Not to mention the tubes and wires and the beeping monitors, and the nosy nurses (who I know are just doing their jobs) who wake you up every few hours, sleep just isn't something you come by easily.  Plus, when you are sore and hurting all over and you can't turn your head because of a neck brace getting comfy just ain't happening.

It was such a relief to go "home" and be in a real bed where I wasn't being poked and prodded and checked at all hours of the night.  I still didn't sleep the best, what with the neck brace and soreness and all, but it was better.  And over time it got even more better (if that makes any sense at all) and eventually I was sleeping without any issues.


But now I am back to having a difficult time getting comfy.  Can't sleep on my tummy, can't sleep on my back; sleep on one side and my arm goes numb, sleep on the other and my hip hurts, use a pillow
between my knees and to cradle my belly and I can't snuggle with Lawrence... Grr...  And then once I do finally get comfortable and find sleep my body wakes my up because I need to use the bathroom, or because I itch, or because i'm too warm, or baby is wriggling and throwing a dance party...  I can honestly say I don't remember having so many problems sleeping so early with my other two pregnancies.  I'm only at 20 weeks, or crying out loud!  Most days I can't make it through without a nap in the afternoon, so when LM is down and out for his nap (which, thank goodness, is usually at least 2 hours, sometimes more) I lay down too.  Not for very long, usually, but long enough that I can make it through the rest of the day without pulling my hair out.

So I am pleading with you, my loverly readers, do you have any tricks to sleeping while pregnant?  Any magic potions, that are safe for baby?  Or really just about anything that you've done that helps, because I am one tired momma and I would like to not rely on an afternoon nap if possible (it's a lot easier to get cleaning and work done when he's asleep, but I don't accomplish as much when I have to take a nap too!).  Thanks in advance for your tips!