Intestinal Malrotation – Lenna’s diagnosis and surgery.

Saturday, August 29, 2015 0 Permalink 0

I have been meaning to talk about Lenna’s experience in the NICU. Why she was sent there, what happened those 15 days, basically everything that happened. I’ve been sort of avoiding it because it doesn’t bring back the fondest of memories, but I also need to remember it and I want others to be aware of what happened to her in case something like this were to happen to someone that they know. I know you can’t prepare for everything. Trust me, I tried. I was the crazy pregnant lady that googled, pinterested and read up on just about everything. If I had a weird tinge of pain in my stomach, I googled it. If I needed to know more about breast feeding or birth plans, I looked on pinterest. I read up on what to bring in my hospital and what to leave at home and even spent a day making postpartum ice pack pads. (Which are great, by the way.) I would say I felt pretty dang confident going into labor. I was ready to face birth, postpartum and a newborn. However, nothing in this whole world could have prepared me for what actually happened. I’m nervous to write our story down because I know that words can’t describe the horror that was felt the day she was diagnosed and transported for surgery. But here I go!
The days we spent in the hospital were pretty great. I watched my husband become a father to the most perfect baby in my eyes and we had good food and lots of visitors. I felt like our life was perfect. Lenna and I struggled with nursing from the get-go. She latched the very first time after delivery but since that first latch, we struggled. It took us a really long time to get her to latch on but once she did, she was a champ. It took a lot of literal blood sweat and tears. It was painful but so worth it once she got going. The day after Lenna was born the Pediatrician told us we could be discharged that day if we wanted to. I thought I would take advantage of the nurses taking care of my baby for another night and decided to stay another day. That second night our nurse brought in Lenna for her feeding. It was 1 in the morning and the nurse said she was acting hungry. She was knocked. out. I couldn’t wake her up. It literally took 3 hours for her to get up and act interested in eating and she finally latched and fed for 20 minutes. around 4-5 in the morning, I called the nurse to come get her so I could get some rest. I woke up the next morning at about 8:30 and thought it was odd that they hadn’t brought her in yet. The morning before they brought her in at 7 and woke me up to feed her. So I decided to jump in the shower. While I was drying off I heard the Pediatrician talking to Jake about “Spit up” So I came out after I was dressed and he said “Oh good, hi. Did the nurses tell you about the spit up?” I told him no and he went on “This morning Lenna had some green spit up. This can mean that she has a blockage in her intestines and we are doing an x ray to see if everything looks okay. Usually it’s okay and baby’s are fine, but we are just going to run a couple tests just to make sure. If the x ray is normal you guys should be good to go, but if not we will give her another x ray that watches her ingest a drink that will light up on the machine and watch it go through her intestines to make sure there isn’t a block.” We didn’t think anything of it and we both kind of went on with getting ready and waited for our baby to come back to our room.
The Pediatrician came back shortly after that and said the x ray looked fine but they wanted to monitor Lenna for just one more night. They offered to let us stay the night for $25 in the same room since it was really slow the only difference being that Lenna would be getting taken care of and I would be in charge of myself from then on. Another 20-30 minutes later after they brought Lenna back to us, the pediatrician came back again saying they wanted to do the more extensive x ray just to be sure. So they took her out and they ran the test and we waited. I can’t remember how long it was but when he came back in the room my nurse was already in there talking about discharge stuff and she was about to go over paper work. He told us that the x ray showed that she did in fact have a block in her intestines and would need surgery as soon as possible. He explained the procedure, which I wasn’t listening to and said that transportation was getting ready. He was waiting to hear from someone letting us know whether we would go to Primary Childrens hospital or Utah Valley Regional in Provo. He got the call that Doctor Meyers, who knew the procedure, was in Utah Valley Regional and that transportation was getting ready to be on it’s way. At this point I started looking at Jake and tearing up. There was so much going on and I didn’t know what to think anymore. The nurse was trying to get paperwork done, the Ped was talking about the procedure and all I could think was “My baby is hurting, she needs surgery, I don’t know how bad this is and it could be fatal.” I was literally preparing myself to say goodbye to my 2 day old baby girl and I thought this was going to kill her. The thing with malrotation is that you don’t know how bad it is until you go in for surgery. So they were saying part of her intestine could be blocked off, not getting blood supply, dying off which in turn could kill her. They all left the room to give us privacy and I lost it. I hugged Jake and let him hold me while I sobbed. I was crying so much that my nose started to run and I needed to get a tissue. When I came back out I went and sat by Jake and we just held each other and cried. His brother called him which brought us back. During his phone call a phlebotomist came in and drew my blood. We were both clearly swollen and red in the face from crying and I tried my hardest to not cry in front of her. I just remember dazing off and thinking about my baby. Jake’s mom came to the hospital and helped us pack our things since we were no longer staying in American Fork for the night. We walked to the nursery and saw our poor baby in only a diaper with wires hooked all over her, IV’s in her arm and breathing heavily while sleeping. She looked so peaceful. We cried. The nurses told us we were waiting on life flight to get there and take her to Utah Valley, this was new. We both thought she would be transferred via ambulance and I started silently freaking out a little. My baby that hasn’t even been outside yet was going to be life flighted in a helicopter. Jakes dad came to the hospital and they were both able to give Lenna a priesthood blessing before life flight started to get her ready. During the blessing one of the nurses took a phone call and loudly explained that life flight had arrived and that they were giving her a blessing. I didn’t hear anything and I almost yelled over them to tell her to shut it. But I cried instead. The people that were getting Lenna ready to leave said that one of us could go with them in the helicopter and Jake told me to go. I was so scared. I didn’t want to be alone and more than that, I didn’t want Jake driving to the hospital alone. I know he would see us flying over him (Which he did) and it broke my heart. But my baby needed me and she needed me to stay strong. When we walked out of the hospital Lenna was in an incubator type thing that was connected on top of a stretcher. A lady walking by asked “Is there a baby in there!?” and then saw me walking right behind them crying. At that point I hated her, I hated anyone who stared at us. But now I know that it was out of good intent. No one wants to see a baby in that state, they just want to know what’s going on. While we were getting in the helicopter and getting ready to leave one of the nurses or whatever she was started talking to little kids at the park right next to the heli pad and started waving asking if they wanted to see us fly and they all screamed in excitement. She told them it would be loud and that they would need to cover their ears. I felt so sick at this point. I was crying my eyes out with a sick baby that I didn’t get to sit next to and here they were getting a kick out of it. I know everyone on the helicopter was trying to be nice and uplifting but they were treating it like a freaking disneyland ride and I couldn’t handle everyone’s happiness. I was such a mess that first day. I cried over everything. When we took off I remember thinking that I hated the feeling more than anything. I thought about how magical all the helicopter rides are on the bachelor (Yes, that’s what I was thinking. Shh.) and how this ride on the helicopter over our beautiful county was the last thing from magical. When we landed the pilot asked if I wanted to take a picture. I literally almost punched the guy. I told him “No.” and he said “It will make for a really great show and tell story one day!” I kind of snapped back at him and said “I really don’t care! I just want to get her inside.” A nurse met us at the heli pad at Utah Valley with a wheel chair so I didn’t have to walk far and while I was getting on the wheel chair I heard my sister Chauncey yell my name. She was running to the fence surrounding the helicopter and I looked at her and just cried. It was seriously like a movie. She followed us up and they took Lenna to the NICU until they could start surgery. I honestly don’t remember too many details in the hospital while we were waiting for her to go in for surgery. I remember crying. All. Day. Long. I remember them showing us the X-rays and showing us the blockage in her little intestines. They let me hold Lenna and she needed to get her heel pricked for some tests and they had to keep doing it because her blood kept clotting super quick and didn’t bleed as much as they needed it to.  They shoved a tube down her throat right when we got there which was awful. She was gagging and crying and I was too weak to support her. I just sat in a chair, listening and crying. When they took her to get prepped for surgery we went down to the waiting room. Jake had gotten to the hospital not too long after I had and my siblings all heard about what was going on and were waiting in the waiting room for us. Every time I saw someone new that day I cried. My sister was already there from when I first got there, my two brothers and their wives came and one of my brother’s brought his little girl. My dad was on his way with my other brother and little step sister and all there was to do now was wait.
Doctor Meyers, The surgeon performing the procedure on Lenna came in to explain the procedure to us. This is when I truly understood what was going on with Lenna. At 11 weeks in the womb, babies intestines develop outside of their tummies. When they make their way inside, they rotate a certain way into place. Lenna’s hadn’t rotated correctly so basically her intestines were over correcting themselves and started turning themselves into a knot. Doctor Meyers, along with every other doctor, said that they wouldn’t know how bad her case would be until they got in for surgery. Because the intestines get into a knot they create a block and things stop passing through them, if the intestines rotate more than 350 degrees it usually starts to cut off blood supply of the intestines and it can kill part of the intestines. I think with most cases if it’s caught early, this isn’t hard to fix, but if too much bowel is lost then they can suffer from short bowel syndrom for the rest of their life. Best case scenario, the intestines would only rotate so much to create a block to show signs for surgery and still have all blood flow. Doctor Meyers explained that if part of her intestines started to die and if it was too much they may have to cut it out, revive it and then do a second procedure to put them back in. Thankfully Lenna’s intestines had only rotated about 275 degrees. So not enough to cut off blood supply but enough to show signs for surgery. The way they do the surgery, called the Ladds bands procedure, is they put the small intestines on the right side of the abdomen and the large on the left. They also take out he appendix because it is then usually found on the left side rather than the right side of the abdomen. This saves complications if a patient were to get appendicitis. It would be harder to diagnose and they would be confused to not find it in the correct spot once they go in for surgery. They basically burn the wall of the abdomen so that when it heals it will heal to the intestines so they stay in the correct spot and don’t continue to rotate. We waited for about an hour for the surgery to be done when Doctor Meyers came back in to say it was successful and explained recovery.
She said that it could be anywhere from 5 days to 2 weeks (She was the most optimistic person there about recovery time.) It just depended on how Lenna’s body handled everything. Because she had anesthesia that usually puts your bowels “to sleep” is what every one called it. Basically they get over tired and stop working for however long. So we had to wait until they started “waking up” and making noises to do anything but more than that, we had to wait for Lenna to have a bowel movement. You would never know how exciting a baby poop could be until it had been 7 days since they had one! Because Lenna’s bowels weren’t working (which is normal even after an adult surgery, especially a major abdominal one.) obviously nothing was passing through her system so she couldn’t eat. She was put on an IV for the first couple days then switched over to a PICC line which is a longer catheter that went in her left arm and it just went closer to her heart. This was more long term than an IV so they didn’t have to keep poking her every couple days. She had a thick tube down her throat into her stomach called an Anderson tube. This was to empty out everything from her stomach so her bowels didn’t have to do anything. It was cleaning out the bile from the block and any saliva that her stomach would naturally create. It was horrible. She would gag on it, try and pull it out and just cry. Once she had a bowel movement that meant that she was now digesting things and would be able to tolerate food because her intestines would start moving them through instead of just throwing it all up.
She was in the NICU for 15 days and counting the days we spent together in the hospital, she was brought home after 17 days. I would love to write about our NICU experience from what I still remember of it. But I will do that in another post.
There were so many tender mercies while Lenna stayed in the hospital. We saw so many miracles and were so blessed that everything worked out the way that it did.
Thank you to everyone who supported us at that time and I apologize to anyone I may have offended when you were only trying to help. I was extremely emotional and it was the hardest time of my life. So thank you for being patient and supporting our family!

NICU babyRight after surgery with all her wires and breathing tube still in.DSCN2031NICU baby

NICU babyNICU babyMy first time holding her after her surgery. It was insanely stressful!NICU babyThuggin’ since day one!
NICU babyRight after she got her tube out! Night and day difference in her happiness!NICU babyWe would take turns cuddling Lenna and Jake fell asleep like this a couple times.NICU baby  NICU babyI love sleeping pictures. She had a feeding tube put in to speed up going home.
NICU baby NICU babyAwake and alert!
NICU baby NICU babyThis was her going home outfit that was huge on her! She was so small.
NICU babyFinally going home.

No Comments Yet.

Leave a Reply

Your email address will not be published. Required fields are marked *