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!

Baby J update

I haven't updated about Baby J in a while...

When Baby J was born and when he was diagnosed with HD we were so scared.  Scared that his HD would be worse than it is, scared that he would have other problems, and scared that he would not gain weight and grow as he should.  Facing a rare disease, or really anything new is scary.

I am happy to report that we feel very blessed.  Over the last 11 months we have watched Baby J learn and grow.  He has hit his milestones within the prescribed time, though admittedly a little slower than his older siblings.  Since being released from the hospital after his surgeries he hasn't had problems gaining weight.  He is happy, he is healthy, he is a squishy chunk of baby.

We watch him grow and feel a mix of happy and sad.  We want him to stay the squishy baby he is, but we are happy that he is doing so well.  After he was diagnosed we started to look at stories from other kids with HD and found that many of them struggle with a myriad of issues including poor weight gain, lots of infections, lots of food allergies or intollerances, chronic constipation, and others.  We feel so blessed that we haven't had to deal with many of these.

Yes, there are foods we avoid or haven't even tried to feed him in an effort to steer clear of some of these issues, and we are always on alert for others-- but it really is a miracle that Baby J is doing so great.  He eats better than his brother, he sleeps well, he army crawls faster than some trained soldiers, and, of course, he poops well too.  We celebrate every blow-out diaper, we relish each chubby roll of baby fat, and work for his bright smiles and contagious giggle.  I have never met a child who loves the game Peek-a-Boo as much as he does and he hates "This Little Piggy," it makes him cry.  He has taught us patience, perseverance, and the power of prayer and priesthood blessings.  He is truly a gift to our family and we are grateful for him every day!

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.

HD FAQ's

Most people have never heard of Hirschprung's disease and that means that they often have lots of questions.  Here's a few of the questions we get asked most often (some of this may be a bit of a repeat from other posts).

1.  What is it?
Hirschprung's disease is a condition that a person is born with that effects the function of the intestines in that the ganglion cells that move food and waste through the body failed to completely develop.  I recently learned that it can be described as a disease or a birth defect-- when it happens randomly and cannot be connected to genetics in any way it is considered a disease, when it can be linked to genetics, i.e. it is hereditary or occurs because of another defect or disability such as Down's Syndrome, it is a birth defect.  Baby J's Hirschprung's could be either (there is a small family history).

2. How much intestine was effected in Baby J?
A lot of other parents I have talked to know how many centimeters or inches of their child's intestines were removed, I don't.  I do know that he lost his rectum, all of the sigmoid colon, and about an inch of his descending colon.

3.  Will he have to have more surgeries?
The hope is that he will not need surgery again, but there is always a chance that something could happen that could make more surgery necessary.  Among the possible scenarios in which he might need surgery are severe enterocolitis, severe constipation, or a build up of scar tissue that causes a stricture.  As of right now, though, things look really good.

4.  How is he doing?
He is doing really well.  We started solids a few months ago and have learned that we have to introduce new foods slower than we did with our older kids and there are a lot of foods we need to avoid so that he doesn't get constipated or sick (rice, pears, peaches...).  He is still nursing and seems to prefer nursing to solids, though he eats those well too.  Despite our best efforts Baby J does occasionally suffer from some tummy discomforts such as gas pains and occasional constipation, but we work through these as they come.  He has been a little delayed on some physical milestones, but when you spend a total of three weeks in the hospital basically immobilized that will happen.  With a little extra work he is catching up on these milestones.  He is overall very happy and healthy and has two, very sharp, teeth.

5. What about the diaper rash?
His diaper rash is under control as long as I don't run out of my magic diaper duty supplies.

6. Is he all better now, will this effect him the rest of his life?
The answer to this one is a little complicated in that he is better in many ways, but this will probably effect him in some way for the rest of his life.  When you lose a major organ (or part of one) there are always complications.  Many times there are scars, sometimes there are dietary restrictions, risks of infections, or other complications.  Baby J faces most of these.  He has the scars on his tummy from the surgeries, he has scar tissue where things were reconnected that could build up and cause issues, he will most likely have food allergies/intolerances that will stay with him his whole life, he may never have "normal" stools, and he is always at risk for enterocolitis.  When he is older, probably about 3.5 or 4, and ready to potty train we will work with a group of doctor's to help him learn muscle control and possibly put him on some special diets to help his digestion and pooping.  There's a good chance that he will have to be on some kind of fiber supplement or laxative for his whole life to avoid issues like constipation.  For now, he is doing very well and, as long as we are careful about what he eats, he has few problems doing his duty.  Occasionally he will get backed up and we have to give him an irrigation (enema), but that is the exception, not the rule.  So the simple answer is, no, he is not all better, and yes, this will effect him the rest of his life.

I hope this can help answer any questions you, our readers, may have.  If you ever have questions about Baby J and his HD please ask.  I may not have all the answers, but I am always learning more about HD and will find the answers as best I can.

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

Anything for a Friend +

We have had a pretty incredible weekend, it started on Thursday.  It started with Lawrence miraculously getting two WHOLE days off work, in a row!  He had some gigs at a couple state fairs with a band he has been playing with for a couple years now and needed some time off work for those, as well as to just have some time off with family and to relax.  It was so wonderful to have him home, to spend time with him, to relax, to be together.  Mr. E was so happy to have his "Gru" (each week we get new cartoon character names) home to play with, snuggle with, and otherwise terrorize. I was happy to have extra hands with the boys and Lawrence was just happy to not be at work.  Thursday we went bowling with my brothers and grocery shopping as a family, that night Lawrence headed to the Weber county fair to play with his band.  I stayed home with the boys so they could nap.  Friday we did some laundry, some cleaning, and some packing before heading off to the Salt Lake county fair for another gig.  We all went this time and had fun listening to the band's music and visiting some of the booths, Baby J even got his first (microscopic) taste of a snow cone.  Then it was home to unload musical instruments and load the stroller and bags before heading off to Ogden.  We spent the night in a hotel and had a lot of fun watching Mr. E try to jump from one bed to the other and run around the room.  Then Saturday morning we made our way to Weber State campus bright and not too early for a 5k.

About the 5k:  About two months ago an angel mommy that I'm Facebook friends with posted that she wanted to participate in the Anything for a Friend Fight to the Finish 5k.  She wanted to create a team in honor of her angel and needed at least 25 people to make a team.  We joined the team.  I had been toying with the idea of doing a 5k and getting to meet this angel mommy, Ashley, in person was the icing on the cake for me.  I have been following Ashley's blog for a few years, since before we lost Ethne, and have  admired how she and her husband have handled the tragic loss of their daughter with faith and enduring.  I was looking forward to the event and to meeting and connecting with another angel mom.













The event started with an explanation about how Anything for a Friend was started, what they do, and why we were there.  Then there was a balloon release and the "run" started.  Along the route they put up posters with pictures of the people each team was there in honor of.  Many were cancer patients or survivors, some were for other loved ones, and a few were teams that just wanted to help.  We loaded the boys in the stroller and set about the 3.2 mile walk with a very large group of people, with a team of people we really didn't know.  Ashley and her family were so nice and made us feel welcome, and the kids had a lot of fun running part of the route together.  As we walked I thought about Ethne and how we are fighting to our finish so we can be with here again, I thought about Ashley's angel and her fight, I thought about Baby J and his fight with HD, and I thought about little Ethan-- who is still fighting his leukemia.  They are all heroes in my book and I am grateful that my life has been touched by each of them in one way or another.

While we walked I also thought a lot about answered prayers and blessings, as we just had some big ones fall into our laps...

Earlier this week we received a hospital bill for Baby J's NICU stay.  I won't go into specifics, but let's just say that it was big.  Our insurance for the 4 days of last year Baby J spent in the NICU wasn't very good insurance.  They payed their max allowed amount, but this policy had no out of pocket max and their portion was only drops in the bucket of 4 days worth of NICU expenses.  I was panicking.  But we did apply for some help through the hospital group that runs Primary's and were waiting on a decision, I was told it would probably be made by Friday.  So Friday I called to find out what had been determined.  The man I spoke with on the phone was very nice and told me that a decision had been made that morning.  He asked if I was ready to hear our new balance, I looked for a pen.  He waited patiently while I hunted a pen down, when I said that I couldn't find one he said "I'll just tell you, it's a really easy number to remember."  He then informed me that our entire debt had been forgiven.  I couldn't believe it.  This huge bill, that we would have been paying off for years, had been taken care of.  A huge weight lifted off my shoulders, I was so happy and relieved that I was crying.  Our prayers were heard and answered, we had been immensely blessed.  I am so grateful for such charitable hospitals that took care of my baby, and for a loving Heavenly Father that gave me faith that everything would work out.

I am feeling so thankful that we were able to have this weekend to spend time together and to reflect on so many blessings.

The rash...

...and other side effects.

I think people assumed (me included, at least for a while) that the surgery would mean Baby J would be completely cured of his HD.  That he would magically be completely normal with normal bowel function, normal diet, etc.  But this is not the case.  Once an HD baby, always an HD baby.  See, even after the colostomy is closed and his bowels are reconnected to his bum he will still have issues with this.  He will likely never have completely "normal" bowel function and may not be able to eat a "normal" diet without restrictions.  Children (and even adults) with HD often struggle with issues of bowel incontinance-- be it constipation or diarrhea.  Their bowels are not "normal" so we shouldn't expect things to be.  Take away part (sometimes all) of a person's intestines and digestion just isn't going to work the same way.  There are lasting side effects

A minor side effect is his scars.  Baby J will live with several scars on his tummy.  A larger scar on his left side from where they closed his colostomy, and four smaller scars where the laproscopic camera went in.  These smaller scars may fade and become barely noticeable, but the larger scar from the colostomy will not.

Another side effect, that we were told to expect, is diaper rash.  Not your run-of-the-mill red baby bottom that can be easily fixed in a few days with some cream-- nasty, breaks the skin and makes it bleed diaper rash that just won't go away, no matter what you do.  It started a couple days after Baby J's first poo.  The nurses and I tried to stay on top of the messy diapers, but they were just happening so frequently (more on this in a minute) that it was impossible to do unless someone stood by him constantly, waiting to clean it up.  After he had been going for a day or so I got smart and asked for some diaper cream, I should have asked sooner.  Things were still pink, no skin breakdown had happened yet, so I thought we were in the clear.  The doctors told me that it wasn't necessary to wipe all the cream from his bum at every change since vigorous cleaning could also lead to skin breakdown and rash, so I tried my best to ignore my instincts and didn't wipe it all off.  But on day three after his first dirty diaper his bum started to turn red, despite my best efforts.  Now to explain...  (yes this may be a little gross)

The intestines' purpose in digestion is to suck moisture out of food and put this moisture and the nutrients it holds into the blood stream, then to move waste out of the body.  As moisture is removed from food it becomes less acidic and more solid in nature (remember this).  A normal bowel has a rectum that has a small pouch in it where waste is stored and compacted before it leaves the body.  Normal waste has a low moisture content and is fairly solid as it exits, even in babies, and is therefore non-acidic (or at least low in acid content).  Since persons with HD lose their rectum and this pouch for storing waste, along with part of their intestines that suck moisture from this waste their poo is more acidic, more runny, and happens more often than normal people and babies.  This means that, unless someone is there to change the diaper as soon as a bowel movement happens, and can essentially be there 24 hours a day to do so, skin breakdown and diaper rash are inevitable, even with this it is still likely what with constant wiping and cleaning of the area.

So I tried to prepare.  I looked up recipes for diaper rash creams and cures online along with homemade wipes recipes (many store-bought wipes have alcohol in them and this can cause pain and drying which just makes the rash worse).  I consulted with other HD parents.  I reflected on the nasty rashes Mr. E had as a baby.  I thought I had done good.  But after we came home I was smacked in the face with reality.  My baby cried every time I changed his diaper and screamed when I put the cream I had stocked up on on his bottom.  His poor little tush was getting redder and redder by the minute, and I was changing so many diapers it felt like I couldn't get anything else done all day.  So I mixed up some coconut oil, jojoba oil, and lavender essential oil (a recipe from the internet) to try as a rash cream.  It seemed to soothe the rash some and it soothed Baby J some too.  Unfortunately it didn't protect his skin from the waste as well as it should and things continued to get worse.  So then I tried layering.  I put the coconut oil stuff on then the diaper cream.  But this still made Baby J scream and the cream didn't stick well over the oil.  So I raided the rash cream aisle at the store and came home with several creams to try.  I started with a new cream immediately because I couldn't take the screams any more.  The first cream I tried didn't make him scream *hallelujah!*, but it also didn't stick well, with or without the coconut oil stuff on first.  So I tried something the doctor suggested and put stoma powder (a fine powder used to help clean around ostomies) on with and without the coconut oil.  This helped a little, but the second cream still didn't stick.  Baby J's little bottom kept getting redder.  When I ran out of cream #2 after 2 days I started with the next cream.  This one was thicker and stuck better, even over the coconut oil.  By this point I had also made my own wipes, which also seemed to help some.  So our diaper changes at this point went something like this...  Wipe, but not all the cream off his bum, just enough to clean; pat his bottom dry with a piece of tissue or gauze; coconut oil; stoma powder; cream; new diaper.  But we are still changing his diaper frequently, like every hour during the day, that's a lot of diapers and diaper cream.  I am pleased to say that I have found a quicker and highly effective routine after several different attempts.  That last cream has been miracle worker and it with the stoma powder is our best friend.  The biggest key to getting rid of diaper rash is ensuring that the diaper area is dry before applying any medicines or creams, that is where the stoma powder is so handy.  Something in that third cream helps neutralize acid and other rash causing elements, plus it is super thick so it sticks great and you don't have to use as much.  His bum still has some red spots, but it looks so much better than it did when we first came home and, so far, we have been able to avoid open and bleeding sores.  (In case you are wondering, I am not giving out brands and names of rash creams publicly since I haven't been paid to endorse them and I don't want to give others a bad name for not working for Baby J's rash.)

Longer lasting than the rash will be possible problems with constipation or diarrhea and diet issues and his risk for certain gut-related infections is higher.  Some people with HD never have food sensitivities and others have a lot.  Some overcome problems with incontinence and food sensitivities and others struggle with it their whole lives.  Some kids get these infections several times and others never get it.  Only time will tell how Baby J will handle all of this.  I also have learned that potty training can be an issue with HD kids, but Primary Children's has a bowel management program that we can participate in to help him learn how to train his muscles and deal with problems that may arise as he gets older.  I am grateful for such a great children's hospital so close and I never thought I would be grateful for poo!

Surgery

Things for Baby J's surgery really started last Friday afternoon when I got a call from the hospital to tell me what time his surgery was scheduled for and when he had to stop eating.  It really hit that this was really happening and there was an end in sight.

Monday:  4:00 am I woke up and fed Baby J his last meal.  Then Lawrence and I dragged ourselves out of bed, got ready and headed for the hospital.  We checked in at 7am and waited.  Baby J was fairly happy and smiley, and was patient, at least for a while.  We waited some more and waited some more while Baby J became more and more upset, and they finally called us back to finish checking in.  They weighed and measured Baby J then had us strip him and scrub him clean with some special wipes and put him in clean hospital jammies. And Baby J got really mad, he was starving!  Then we went to wait for the anesthesiologist to come get us.  And Baby J cried.  And we waited some more.  And they told us that it would be ten minutes, then a half hour, and another half hour.  Somewhere in there Baby J gave up and went to sleep.  His surgery got pushed back 2 hours because of an emergency.  Finally the anesthesiologist came and we signed some papers.  They took Baby J and told us to check in at the waiting room.  We checked in and my mom stayed and crocheted while Lawrence and I went for food, surgery was scheduled to take 4 hours.  After about 2 and a half hours we got a call from a nurse letting us know that everything was going well and they had about an hour left.  Surgery took just over 3 hours.  Then we went to recovery.  Baby J was crying and in pain.  They gave him medicine and settled him down before sending us upstairs to his room.  The rest of the day was just keeping him happy and giving him medicine for his pain.


Tuesday:  More pain management.  As long as he got medicine as scheduled life was good.  he was very sleepy and had a catheter so there weren't any diapers to change yet.

Wednesday:  Much like Tuesday.  We tried to cut back on his heavy pain meds and they gave him a different pain medicine to help.  We also tried to give him some Pedialyte.  He took some of it, but then screamed and had a lot of pain so we stopped.  At about 6pm I went out to pump some milk and when I came back the nurse informed me that we had poop!  I have never been so excited to see a poopy diaper!  He was still having a lot of pain, mostly from gas so we went back to the schedule for his heavy pain meds.  He continued to do his "duty" the rest of the night and slept well.

Thursday:  Since he pooped we were able to try feeding him more.  We gave Baby J some Pedialyte and he took it anxiously.  Later we tried some milk, which he also took very well... until he threw it up.  So we cut back.  We tried less milk, but he threw that up too.  This was discouraging since we were hoping to go home Friday.  They gave him some anti-nausea medicine and some zantac and he seemed better, but the doctors still said to hold off.

Friday:  He slept well Thursday night and his tummy seemed calmer.  I went and pumped for the morning since the doctors told us to start with the Pedialyte.  He refused the stuff and rooted for milk, so I nursed him.  He was the happiest baby in the world!  He ate for 20 minutes and was content.  They gave him more zantac and anti-nausea medicine and he kept it down.  After 2 hours he cried and acted hungry again, so I fed him more-- he was just so excited to be eating again.  But then there was more throwing up, lots of it.  So then there was a bath and fresh bedding and clothes.  At the tree hour mark I fed him again.  This time he seemed more cautious and didn't eat quite as quickly or as long and he kept it down!  This was a huge milestone for him to get to go home.  The rest of the day went well and he only had one other episode of throwing up.

Saturday:  Going home!  The surgery team stopped by and said that since he kept his feeds down for 12 hours and was taking his tylenol orally we could go home.  It was a long hour waiting for the discharge paperwork to come, but so exciting to go home.

Monday

This coming Monday is the day.  The day Baby J has his second surgery.  The day that will *hopefully* be the start of mont days to come with lots of messy diapers.  I have been doing my best to prepare myself for this day by talking with other HD parents, finding "recipes" for homemade diaper rash creams and wipes (apparently the diaper rash after pull-through is really bad), planning what to pack for myself, Baby J, and Mr. E (he will stay with Grandma and Grandpa), and trying not to think about how long my baby will be under anesthesia.

Lawrence will bless Baby J before surgery, with the help of my dad, maybe more.  And we will be praying for him to handle the surgery well and recover quickly.

Part of me feels that Monday can't come soon enough and another doesn't want it to come at all.  Wish us luck and wave goodbye to his stoma!

Paying it Forward

I love nursing.  I enjoy knowing that I am giving my baby the best I can and I enjoy the bonding time it gives me with my baby.  I nursed both Ethne and Mr. E (yes, even after the accident) for just over a year each.  Mr. E was more of a challenge to get to that year, but after the accident I pumped until I was cleared to nurse him again, and it was totally worth it to me.

While Baby J was in the NICU I pumped breast milk for him.  I spent about 20 minutes of every 3-ish hours with a pump trying to get as much milk as I could for the day they would allow my sweet boy to eat.  Primary's has a special pumping room and freezer just for this purpose.  I quickly discovered that I had a more than ample supply and was pumping more than many of the other moms, I kind of became famous.  When Baby J was finally allowed to eat I would freeze half the milk from a pumping session and give the nurse the rest for him.  He had to start off slowly so he wasn't using very much milk.  Then, a few days before discharge they asked me to stay with him so they could observe him nursing for 36 hours.  So when Baby J was discharged they sent me home with all my pumped milk, to add to the freezer-full I had at home from night pumpings.  I had all this milk and couldn't foresee myself using it before it would "expire" (frozen breast milk is good for 1 year).


I asked about donating milk to Primary's, but you have to do blood tests before the milk is pumped, so that wasn't going to work.  Then I thought about selling it (apparently there is a market for that on Craiglist).  But that didn't seem a right fit either, after all, the milk was free for me and the hospital provided the bottles I used to store it.  Then I found a Facebook page called Human Milk 4 Human Babies- Utah.  It is an exchange where women who pump more than they need offer their milk to other women who, for whatever reason, can't provide breast milk for their babies.  Many of the moms looking for milk have adopted, had mastectomies, lost their supply, or have gland disorders, but they still want to provide breast milk for their babies instead of formula.  This seemed right to me.  We have been so blessed through everything, why not help bless someone else?  So I posted that I had a bunch of milk and waited to hear from someone that needed it.

That mom just came and picked up most of my pumped milk.  She has a sweet baby girl that will benefit from that milk that otherwise would probably have gone to waste.  Now I have room in my freezer again and she has milk for her baby.  It felt really good to help someone else and pay it forward at least in a small way.

Let me Clarify

It has come to my attention that some of our readers are not clear on exactly what is going on with Baby J, so let me clarify a little…  Disclaimer:  There are pictures and medical type jargon used in this post.  I tried to keep it as simple as possible on the medical stuff.  If you are extremely squeamish, you may want to skip the pictures.

When a baby is developing in its mother's womb some of the first pieces to develop are the baby's internal organs and the nerves that run those organs.  When the nervous system develops it starts at the top with the brain, then works its way down the spinal cord and into the other parts of the body, always from the top down.  For babies with Hirschprung's disease, like baby J, for some unknown reason the nerves in their intestines stop developing early, so they never reach the bottom.  When this happens there are no nerves to tell the muscles in part (and sometimes all) of the child's colon, large intestine, to move digested food and gas down and eventually out.  This means stuff gets stuck inside the baby's colon from the point where the nerves stop and just builds up, never coming out.  If this isn't caught early enough the baby's belly can become distended and fat and can cause infection and even rupture if it is bad enough.  The only known way to fix this problem is with surgery.

stoma

There are two ways doctors perform this repair.  One is a direct pull through or take down, the other is a two step process with an ostomy and then a take down.  Now I will define some terms:  Ostomy: when a piece of intestine is pulled through the wall of the abdomen to allow stool to pass through, this is collected in a bag that attaches over the stoma.  There are two basic types of ostomies, colostomy, where part of the colon that is pulled out, and ileostomy, where the small intestine is pulled out.  Stoma:  The piece of intestine that sticks out of the abdominal wall.  Pull through: a surgery done to reconnect intestine to the anus, called a pull-through because the intestine is literally pulled through the pelvic floor muscles to be reattached.

colostomy bag

Baby J is having the two part surgery.  The reason for the two part surgery is to allow the healthy part if his intestines rest and return to a normal size before they are reattached (they were bloated with stool and gas before his first surgery) and to allow him to gain some weight.  January 3 Baby J went in for his first surgery.  For this surgery they used a laproscopic camera and took tissue samples from his colon every few centimeters until they found healthy nerve cells.  Once they found healthy nerve cells they created an ostomy on the lower left side of his abdomen.  In a few months he will go back for his pull through surgery during which they will reattach everything and close his ostomy.  After this second surgery Baby J should be able to function fairly normally.  For now we live with the ostomy, which really isn't all that bad.

I hope this clears up any confusion.  If you have questions feel free to ask and I will do my best to answer.

Our HD baby

After my shortest labor and easiest delivery Lawrence and I sat in the hospital adoring our newest addition.  He had the same red hair as his older siblings, and outweighed them both by over a pound.  He was also very mild and took right to nursing.  Doctors and nurses came in and out to do their jobs and make sure I was recovering properly and that our little man was doing the things he was supposed to.

Our wonderful pediatrician stopped by on Friday to have a look at baby J and to ask some questions about him.  This was a little later in the day and she asked the inevitable questions about wet and messy diapers.  When we told her he had yet to have a messy diaper she nodded and told me that we could not be discharged until he had pooped, just something they have to watch for.  Dr. N was off on Saturday, but left us in the capable hands of Dr. B (another pediatrician) who, after Baby J was 48 hours old and still had not had a messy diaper, ordered an x-ray of his tummy to see what the problem was.  What we saw was distended bowel loops full of gas that wasn't escaping.  So it was up to Primary Children's for us.

A transport team arrived and stuck my new baby what seemed like 100 times trying to get an IV into him, then we were off.  I rode in the ambulance, Lawrence drove.  Up in the NICU we met more doctors and nurses and were given a vague plan of action.  Before we had even been there an hour they were taking Baby J for a test called a barium enema, where they inject barium contrast into his bowels and then x-ray to try and see what the problem might be.  The hope was that this would just clean him out and he would start doing what normal babies do on his own, but this was not to be.  Lawrence accompanied him for this test and I was forced to eat.

When the enema didn't get things moving and the x-ray was somewhat inconclusive another test was ordered.  They came a few days later and took biopsies of cells in his lower intestines to look for specific nerve cells that make his colon and bowels do their job.  After two agonizing days the results came back negative for the cells, our baby was officially diagnosed with Hirschprung's Disease.

According to wikipedia:  "Hirschsprung's disease (HD) is a disorder of the abdomen that occurs when part or all of the large intestine or antecedent parts of the gastrointestinal tract have no nerves and therefore cannot function."  This occurs in about 1 in 5,000 babies born every year and is treatable, with surgery.

So the next day, at a week old, Baby J went in for surgery.  The way the surgery works is this: they go in laproscopically (with a camera and tiny knife) and take a biopsy of cells in his intestine every few centimeters then send them for testing for the nerve cells, moving up until they find the cells.  Once they find the nerve cells they make a hole in the side of Baby J's tummy and pulled a little bit of his colon out into what is called a colostomy so that he can do his duty (it empties into a bag).  In a few months, when he is a little bigger, they will perform another surgery where they will remove the non-functioning part of his colon and pull down the functioning part to attach it so he will be "normal."  People who have these surgeries often suffer no lingering effects from this disease and go on to live normal lives.

We spent another week in the NICU recovering from the surgery, relearning how to eat, and trying to gain weight.  Then we came home, on Baby J's 2 week birthday.

Baby J

As many have read, we have a new addition to our family.  We will call him Baby J.  He made his grand entrance as a late, but very welcome gift on Dec. 26.  He entered this world at a whopping 9 lbs 8 oz and was 21 in. long.  He is a very mild mannered baby and shares his siblings' red hair.  Unfortunately genetics struck and there have been complications.  Without getting into too much detail, he wasn't performing certain normal baby functions and his pediatrician wouldn't let us leave the hospital until he did.  When he never did we were sent to Primary Children's to figure out the problem.  After a very long weekend we have a diagnosis and a plan of action.

Tomorrow, our precious baby will be having surgery that will allow him to perform his baby duties.  Any thoughts and prayers you can send our way are greatly appreciated.  Please also remember his doctors as they will need guidance while performing his surgery.  Thank you all for your love and support.