Big Adventure-Little Girl

Since Friday life has been a whirlwind of information and emotion.  We had the UGI Friday afternoon and found that Leone's duodenum has been blocked by what is called a web.  As we watched the UGI with the Radiologist we saw the barium move down her esophagus, into her stomach, pass the pylorus, fill the duodeum and then stop...nothing, not even a trickle was moving through.  The radiologist called our gastroenterologist who then informed us that this is considered a surgical emergency--however she has miraculously been thriving despite the blockage so they might not get her into surgery tonight but it couldn't wait until Sunday.  My mind was reeling....surgery?!?  Our gastroenterologist called the hospital and had us admitted immediately.  We were sent upstairs to the infant medical surgical unit and we've been here ever since.  We spoke with numerous residents and medical students (PCMC is an education hospital) who consulted with their attending physicians. Leone had been breastfeeding, passing bowel movements, no projectile vomit, everything checked out as it should.  Looking at her you wouldn't think she was anything less than a typical child with acid reflux.  But there was definitely a blockage and all the doctors are shocked that she has been able to thrive and hasn't been more uncomfortable...truly miraculous.  I am eternally grateful that our Father in heaven has been watching over her these past seven weeks.


Leone made it into surgery at 8:30 Saturday morning.  Handing her over to the anesthesiologist was the hardest thing I had done yet and that was when I really cried, before then I had teary moments but this was the first time I really cried.  The surgery lasted about 2 hours.  We learned quite a bit after the surgery:  Leone did have a web blocking her duodenum but the web also housed the main bile duct of the body (the liver and pancreas both empty into this duct), her intestines were malrotated, her appendix was on the wrong side of her body, there was a very tiny opening in the webbing which is how she was passing things through ...somehow.

This condition was congenital, meaning she was born with the blockage.  The malrotation of her intestines most likely took place in utero during the fifth or sixth week of pregnancy. This is when the bowels which originally form outside the fetus' body finally pull into the body cavity.  Normally the intestines fold in making the maze pattern we see in pictures.  When a malrotation occurs the intestines typically pull in like a corkscrew or spiral.  This can cause other organs to be misplaced, in Leone's case her appendix.They removed her appendix to eliminate any issues later in life (mainly if she were to have appendicitis she would complain of pain and they might rule out the appendix because it doesn't seem inflamed but they would be checking on the wrong side of the body--this could prolong treatment and increase risk of eruption).  They left her intestines as is because they are free floating anyway and nothing else had been displaced or disturbed.  The webbing is most likely something that formed while her small intestine was developing-it just didn't form completely.  Usually the webbing would look like a hammock or net stretched across the passage way but Leone's looked like a wind sock.  It was large at the opening and then progressively became smaller, like a funnel.  This shows that her body had somehow adapted to the webbing and was forcing things through the tiny opening, thus stretching the web into a funnel. They were able to remove the majority of the webbing but left the webbing that included the bile duct because there was more risk of interrupting the function of related organs and the duct hadn't been compromised by the web.  They snipped the bowel and then pulled it back together sort of folding it into itself and then sewing it back together.  This is the part that is still fuzzy to me but one of the surgeons compared it to sewing together a garden hose and a spaghetti noodle.  The duodenum had been stretched from holding so much for so long--however we suspect this is how she was able to thrive because the food remained in the intestines long enough to pull necessary nutrients--at the same time the back up is also what was causing her reflux because the food wasn't moving through fast enough to make room for more food.

Throughout all of this Leone has been a champ.  I am amazed at her pain tolerance--all of her nurses have commented on it as well.  She hasn't eaten since Friday at 11:30 a.m. (she had to fast for two hours before the UGI and once she was admitted they said nothing at all until after surgery).  From Friday to Tuesday she has had nothing but fluids through an IV to keep her body hydrated.  Now she can have 2 ml per hour of breast milk through her feeding tube (that's over a course of an hour...wouldn't want to over do it...)--the catch is the feeding tube bypasses the stomach and duodenum and goes straight to the jejunum (just after the duodenum in the small intestines) so she she won't have that full comfortable feeling in her stomach but her body won't send her "I'm starving" signals.  The child was practically starving and she didn't grow fussy until Monday.  I'm in awe, everyday, at  how resilient and strong she is turning out to be.  She has been so brave and cooperative and the nurses sweet and attentive.

How long will she be here?  We don't know for sure.  She can't leave until the feeding tube is removed.  A surgeon I spoke with last night says typical recovery for surgery like this lasts about 10-12 days, could be more could be less.  Until then we hang out in the hospital, I rock her like my life depends on it (because emotionally it does) and we enjoy seeing Spencer longer before and after classes since we're on campus. Spencer's family has been so generous is visiting and bringing us food, thank you just doesn't say enough. 

On Monday Leone had a particularly fussy time dealing with not being able to eat.  I had been holding her most of the day but at this particular time I needed to use the restroom.  I placed her in her crib expecting her to be really upset. She protested but while I was washing my hands she suddenly grew quiet.  When I came out I found her like this. She had grasped a hold of the mobile over her bed and I let her hold it for as long as she wanted (a good 10-15 minutes)!  She's never reached out for anything intentionally but since I didn't see it happen I don't know if it's the result of a reflex or on purpose but I didn't care, we celebrated!!

(The large tube on the left is her NG tube-it goes into her stomach and sucks out any fluids that build up--such as stomach acid since she's not eating anything yet--it also keeps her from spitting up. The tube on the right is her NJ tube-it sends the breast milk to her jejunum).