March 19, 2016

Our Miracle (part three)

If you are just tuning in to Dash's story, you can catch up on part one here and part two here. Dash is now 8.5 months old and the roller coaster we have been on started when he was just 3 days old. We have no idea what the future holds, but for now here is part three. Just like part one and two, this post is incredibly long and detailed. I didn't leave anything out and I do this for more reasons than one. Also, I wish I could say that everything went as smooth as butter this time around due to his history and past experiences but unfortunately it didn't. We actually went through a lot more frustration this time and I have debated with myself whether or not to share the details of that frustration or just to leave it out. I didn't share any of it on social media. After much thinking I have decided to include it all because I think it's important. It's Dash's story. It's a part of our journey. I do hope you'll take the time to read it. 

Dash's last surgery and hospitalization took place in Aug 2015. Between then and Feb 20th of this year he had been perfectly fine. 5 solid months of joy, learning, growing, and love. 5 months of hoping that he never had another issue but also knowing that he could at any time for the rest of his life. After his last surgery we were told that his intestines were in the correct place and that the surgeon was 100% confident that he was going to be fine...with the exception of scar tissue randomly getting in the way and needing to be snipped back if an obstruction occurs. We were told that if Dash were to start vomiting and none of the rest of us were then we would have to treat it more serious than just assuming it's a flu bug. He would need to be closely monitored for dehydration, green vomit, tenderness when pushing on his abdomen, if he is pooping/eating, among other signs. So, we have always known there could be future issues but nothing that should be life threatening like the first time. 

Enter Saturday afternoon on Feb 20th. 
It was a normal day. Bodie was working. I had gone on a nice walk with the kids, we took a long nap and played around. We got ready to head to the grocery store in the late afternoon and I remember Dash seeming a little irritable. I remember thinking it was weird because he had just slept and drank a full bottle of frozen breast milk so he should have been happy as ever. He certainly wasn't bad at all, though, so I loaded the kids up and we left. I put his car seat in my shopping cart and waited for Dollie to grab her mini shopping cart. We started to walk into the store and Dash cried out pretty loud. I looked down to see vomit everywhere. Puddled up on him, on my pants and my shoes. 

***If you don't want to see a picture of it then scroll past the picture below!***

I stood there, frozen in my tracks, in complete shock. 
I was just really caught off guard. I immediately turned the cart around and told Dollie that Dash was sick and we were leaving. I quickly called Bodie and headed home. I told him I thought it could have been the breast milk he had eaten and that there was no way it was the flu because we had been home literally all week because he had had a fever Mon-Wed (but had been completely fine Thurs-Sat) and hadn't been around anyone, nor had anyone been to our house. I hung up the phone and Dash immediately projectile vomited again. It was the color (like the above pic) of the sweet potatoes he had eaten a few hours earlier. I called Bodie right back, freaking out, and he said to call the surgeon. This was the surgeon who did his last one. He kindly gave us his cell phone number and told us to text or call if we ever had any questions for concerns. I left him an urgent voicemail and placed Dash in the bathtub immediately after we arrived at home. For the next hour and half he was completely fine. Playing and super happy. I thought for sure it must have been the milk. I had taken it out of the freezer and placed it in the fridge and it had been in the fridge just a little longer than the 24 hr mark that's recommended. I felt stupid for leaving the surgeon such a scared message so I sent him a text saying sorry and that it was too soon to panic and that we would see how it goes. Bodie got home and Dollie and I hopped in the shower. Bodie began feeding Dash a little bit of pedialyte. He immediately started shouting. He came in with Dash and there was vomit all over both of them. It was now a bright yellow. That seemed weird to me because by this point I figured he had to have vomited out all the breast milk and sweet potatoes and should have just had some clear pedialyte left in him. Right at that moment the surgeon called back. He hadn't yet listened to my voicemail, just read my text. He asked if Dash was okay and I told him I wasn't sure because he had just vomited a 3rd time and I was scared because we hadn't been around anyone sick and we weren't sick. He asked the color (which is always a big deal to this particular surgeon) and then he told me to continue watching his wet diapers and color of vomit. If Dash reached 8-12 hours with no wet diaper then we were to go the ER for hydration and an upper gi test (surgeons words). An upper gi is the test where the contrast goes down and we watch to see if it travels through his intestine or stops due to an obstruction. We've done this test twice before and it has been critical for Dash's safety. By this time it was about 7 pm. Bodie took a shower with him to get all cleaned up and I remember Bodie pushing all over his abdomen checking to see if Dash winced in pain. He didn't. Abdominal pain is huge sign of intestinal issues...but is something Dash has never been know to show. I nursed him, he held it down and went to sleep. I nursed him again at 10:30 pm and he held it down. At 11:15, after five hours of no vomit, it all came back up, bright bright yellow. Projectile. He still hadn't had a wet diaper and we were approaching 8 hours. I remember looking at Bodie and simply asking,"Why are we here? Let's just go. He obviously isn't holding anything down and we know we're going to end up at the hospital no matter what due to dehydration. Let's just go." We packed a few things and our neighbor came to stay with Dollie. I called the pediatrics floor at UVRMC to see if by some chance they would allow us to come straight to the floor (I mean, we've been through this multiple times now and the ER waiting sucks) but no luck. No deal. So we arrive at about 1:30 am and, of course, it was busy. There was a wait for rooms and there were babies with whooping cough around us. I called back up to peds asking again but still nothing. Luckily, the ER nurses said they could get us in quickly and that we could wait in a separate waiting room. He vomited again and it was now a yellow-green. 
(Doing what we do best in the ER room....waiting)

Once we got into a room I asked the ER Doctor if we could get an upper gi test done as soon as possible. I explained to him Dash's history and how important that test is for us. He said we needed to do a kub (general) X-ray first. They then wanted to do an IV and blood tests so I requested peds nurses to come down to do it, they are super good at it. A while later I asked if we could please just skip the kub because we never see what we need to and we always end up doing to upper gi. Both times before, same story. Always a waste of time. He said the upper gi was ordered and we would for sure get it but we still had to do the other also. 
3 am preparing for kub X-ray: 

Basically from 1:30 am to 5:00 am we waited. 
Waited for the X-ray results, waited for the upper gi, waited to be admitted to peds, waited, waited, waited...
The radiologist who does the upper gi wasn't on the schedule to come in until 6:30 am so they were trying to decide if Dash was urgent enough to call him in early or wait. Apparently because Dash looked "good" and the kub X-ray looked "good" and all that other stuff, they didn't feel it was necessary to call him in. Also, the ER Doctor told us that someone spoke with the on call surgeon and she said she didn't think an upper gi was necessary because we do those to diagnose malrotations and we already knew he had that and he's had corrective surgery for it already. This is when the frustrating started. 
Finally around 5 am they decided to admit us to the pediatric floor. So Dash was questionable enough to admit but not to do the important test we so badly wanted. This was because the surgeon didn't think it was necessary. We went up and got a room and the nurses and resident came in to talk to us. I wanted to talk to a doctor about the upper gi test but he didn't seem to be available. The resident came back in and asked about Dash's pooping. He said the doctor noticed in the kub X-ray that it looked like Dash was really backed up. Dash wasn't in fact pooping well. He had gone a week without pooping a couple weeks prior but then he started to again but it was very small amounts every couple days. I just figured it was normal and that due to everything in his early months of life his bowel movements would be different. Nope. I was super wrong. They ordered an enema. That sure made me feel like a bad mom. You would not believe the poop that came out of him. Two full diapers. I had no idea! He never once displayed any discomfort. Suddenly we were feeling very hopeful. Maybe that kub wasn't a waste of time. I nursed Dash at 6:15 am and he just slept. He seemed so tired but he had been sleeping pretty much all night even while waiting in the ER. We really wanted the doctor to be right. I couldn't believe we may have went through all of what we had for some lousy constipation. I thought if this was all because of him being backed up then we would be out of there that day. 

Then, BAM. 8:15am this happens: 
Our worst freaking nightmare. 
The color that the last surgeon saw and immediately prepped for surgery. Everything about the constipation being the problem went out the window and I just knew in my heart there was something wrong inside him and we needed that test done! But here we were...still no actual pediatric doctor had been in to see us. And we were freaking out. I went out to the nurses desk and asked for him. They said he would be rounding from between 9 am-noon. I told them I was freaking out and that I couldn't wait until noon to see him while my son was in his room projectile vomiting bile. 9 am on the dot the doctor walks in. I'm not entirely sure why it took him so dang long. We arrived at 5:30 am and he didn't come in until 9am!!!  I'm freaking out (if you didn't gather that yet) and I asked him about the upper gi. I asked him about why the surgeon doesn't think we should do it and told him I completely disagreed with her and that we do upper gi's to detect obstructions, not just to diagnose malrotations. He disagreed with me and backed her up. He said he was highly doubtful that this had anything to do with his malrotation history. I started crying out of pure frustration and I basically lost it. By this point Dash looked awful. I mean, bad bad. It wasn't just tiredness. He was completely lethargic, couldn't even hardly open his eyes. Couldn't lift his head up, couldn't move his arms. Super pale, and very sick looking. This was actually the worst he's looked, even in past times. I told the doctor I wanted that upper gi test and he said we needed to wait for the surgeons approval. I yelled,"Where is she then? Where is she??!" I demanded that she come and he said he would go call her again. I could tell he was bugged by me and it was obvious that he thought I was overreacting. In the meantime I was blowing up the other surgeons phone. I text him the pictures of green vomit and told him no one here seemed to be concerned at all. I never heard from him. I remember telling Bodie,"We've done all we can do. We followed all the signs we were told to follow and we are here. The surgeon gives orders and they don't want to do the test so there's nothing left for us to do." Seriously, I can't tell you how angry, upset, sad, helpless and terrified we were. Moments later a nurse walked in with a phone in her hand. It was the on-call surgeon. She introduced herself and then I don't exactly recall what she said. I think she just kindly asked me what she could help me with. I immediately went into our frustration and how we had been waiting and that Dash was vomiting bile. She said something about getting an upper gi test done, like I hadn't been asking for it for the past 8 hours. Like I didn't know what it was. Extremely caught off guard, I told her that I was told it hadn't been done because she didn't think we needed to. She responded,"I never said that." Ummm...what? I couldn't believe my ears. She said that she agreed both during the night and also again that morning to do one. I told her that I was told by two doctors she wasn't okaying it and she simply denied it. She said she felt like the test should definitely be done... within the next few days! WHAT?! Few days?? I was doing every single thing I could to hold it together and not scream my head off. I told her that the first time we went through this we were sent home and by the time the upper gi was done and we went into surgery it was almost too late and our baby nearly died. She said,"Well, I don't think that your baby almost died..." *Breath Katie, breath...* I seriously could not believe the words coming out of her mouth. I just kept looking at Bodie in complete shock at what we were hearing. I told her,"If we keep waiting and it ends up being too late again, I swear..." She told me this time was different because we were admitted and not being sent home. She went on to explain the upper gi and how it works. She clearly did not understand that I knew EXACTLY how this all worked because we had been through it twice before and this time was proving to be an exact repeat. After 20 minutes of arguing, debating, her telling me I was putting words in her mouth (???) and going back and forth, she casually agreed that an upper gi should be done that day. Like it was her idea. Seriously our convo went from not thinking we needed one, to getting one in a few days, to getting one right then. I'm pretty sure I let her to agreeing to do it that day, but she did it in a way that made it seem like it was her idea. I then went on to tell her how awful Dash looked and explained in detail his presentation. She told me, "That's very concerning to me because I was told on the phone this morning that he looked great." OH MY GOSH!!! She said that the test definitely needed to be done stat if what I was telling her was true. THANK YOU. I apologized (because I am a nice, civilized human being and it seemed like the right thing to do) for being so upset but explained that we were just really worried and then thanked her for agreeing to do the test. I didn't want to fight. I didn't want to debate and argue. I didn't ask for ANY of that. I just asked for a test to be done and because of how everyone was acting I was having to fight. She didn't say anything. We got off the phone and the Doctor came in. He had already spoke with her and the radiologist. He told me that instead of going right in to do the upper gi we were going to wait  and do another kub X-ray to see if he was still backed up, which he strongly believed he would be. He then said we would do another enema. Confused, I asked him why we weren't immediately doing the upper gi because the surgeon just said we could. He replied, "I am going to go with what the radiologist says because he's the one that's going to be looking at the X-rays and unless the surgeon walks through these doors this is the plan we are going with." Wow, okay. FINE! Whatever. Do the stupid X-ray and give him another enema. Do whatever you want to do. I asked him why he told the surgeon that Dash looked "great". I pointed to Dash and asked him if he thought Dash looked great. I pointed out that he had now been on IV fluids for hours and he was visibly getting worse. I told him we were doing our part as parents and that someone was lying and giving us a runaround about what the surgeons saying. Either she was lying to me and covering her butt or someone else was. He told me that I shouldn't use the word "lie" because no one was intentionally trying to deceive me or harm Dash. I told him that I agreed it wasn't intentional, but that the communication between them as medical professionals was awful and it was at the expense of my son. I told him that I had a communications degree and that I knew how to communicate and that they were not doing a good job at it at all. Hahaha! Me throwing around my measly degree to someone who has a pHd. I later felt really stupid about that. Anyway, I told him that all we've wanted since we showed up was an upper gi and all we've been told is that the surgeon said no and then suddenly on the phone she says that she never said that. I had ever right to be pissed off and he, very reluctantly, agreed. He told me that under the circumstances Dash really did look better than most kids in his position. I reminded him what one of his own colleagues told us about Dash from day one: Dash does not present the way he should, he is the type of baby that burns them as doctors because of how "good" he looks and appears to be when he should show other symptoms. His words, not mine. The doctor left and I turned to Bodie and straight up asked him if I was being crazy and if I needed to back off. He's really good and telling me when I'm being crazy and full of drama and when to back off. He said that I was totally fine and that because I freaked out was the only reason we got the go ahead for the test we so badly wanted. A couple nurses came in along with the person to do the kub and just as they were about to shove a tube down dash's nose to begin suctioning out bile I left. I could not be in there watching it. I walked far down the hallway and heard his screams with every step. I broke down and just felt so, so helpless. It was awful. After maybe 5 minutes I went back in and the tube was down, suctioning a ridiculous amount of bile, and the X-ray was complete. The doctor came in and told us that it looked good and that Dash had been cleared out with the first enema. In other words, this had nothing to do with him being constipated like he so very strongly felt. I know the doctor expected to see something different. I know he thought we would just be giving him another enema. Yes, Dash was backed up. Yes, he was right about that. But no, he was so so wrong about this not having anything to do with his history. I knew it right after he had the first enema and he vomited all that green and he should have known, too. The doctor told us we would be heading down for an upper gi shortly. 
Finally, at 11:45am, we got the test. 
This was our third time doing this test. 
I always stand behind the window and make Bodie help hold Dash down because it's so, so heartbreaking. It's always a little nerve racking because you just don't know what you will see...where the contrast will travel, if at all. It took all but 2-3 minutes for the radiologist to point out the exact spot that the contrast wasn't getting through because of an obstruction. I mean we are talking nearly 12 hours of begging for this test and within minutes an obstruction is detected and Dash is heading into surgery. Well, a couple hours later he would be. We went back upstairs to our room and the surgeon came in person. As if our entire heated phone conversation never happened, she apologized that we were having to have another surgery. Like, "Another obstruction was detected and we are going to have to operate again, I'm so sorry". Yeah, I know. It bugged me so bad that she was treating this like I didn't have any experience or know what I was talking about. I think I knew all along that he was going to need surgery again. I was like,"Don't be sorry! I'm just glad we know the problem and it's going to get fixed so let's do this." It was truly the first time since we had arrived that I felt any kind of relief. It's not that we wanted to walk in and go right into surgery (pretty sure that's what they all thought). Of course we want to always avoid that. But in Dash's case surgery is what saves him and the dang test determines that! The surgeon said she thought it was probably scar tissue but she wouldn't know until she went in. Funny thing- earlier on the phone I had asked her if it could be scar tissue- just trying to come up with any reason to get an upper gi (as if green bile and everything else wasn't enough) and she specifically told me "NO, because if it was scar tissue we would be able to see it on the kub." But I guess now she thought it was scar tissue..?  We signed consent forms and waited. I wanted to hold Dash all the way down to surgery but they don't allow you to freely carry your baby so I hopped up in his crib with him as we made our way to surgery #4. Same route, same emotions, same everything. 

I always get really nervous right before surgery because you never know what can happen so I start snapping photos of my precious baby. And then I hand him over and watch them carry him through the operating doors and bawl my head off. And pray. 
(This was the most awake he was since we got to the hospital hours before. I really tried getting him to wake up and open his beautiful brown eyes before surgery)

He went into surgery at 1:45 pm and we waited in the same waiting room as the previous times and it was just as hard as the previous times, too. It never gets easy. It's always terrifying. We never know what's going on inside him or the condition his intestines are in. We don't know if they are still nice and pink or purple and dusky. We don't know if it's a simple kink or some crazy thing. We don't know if the surgeon is going to come out and tell us all is well, or tell us that we are probably going to hold our son for a couple hours and tell him goodbye (like the first time). It's so hard waiting. Hate, hate, hate the unknown. 
About two hours later a nurse came out to give us a report: It went well, they found the problem, and they were closing him up. Instant relief/joy/comfort/happiness/all good emotions. After another 30 minutes the surgeon came out and sat down to explain to us what happened. She started drawing us a picture of what a normal persons intestines look like and what someone with a malrotation looks like. She then drew a picture of the Ladds procedure that's routinely done to correct a malrotation. This procedure was done in Dash's second operation. She then drew us a picture of what he looked like when she went in. And it was completely backwards. She said she couldn't believe his intestines had moved so much and were so out of place. She said she was sure the previous surgeons who did the Ladds would not have left him like that. She said in 25 yrs she has had to go back in two times, never 3 times. (Technically Dash has been put under and cut open 4 times, but one of those times was not for any other reason than to look at the color of his intestine, no operation. So 4 times under anesthesia and opened up, but 3 times actual surgery.) She explained some more details about areas she worked on where the kink was. She said there was some scar tissue, but that wasn't the issue. The issue was that his intestines did not stay put from the last surgery and it was another malrotation issue. She explained to us the tubes he would have for the next 5-10 days. One was the ng tube (he's had both previous times) to suck out all the bile from his stomach. The other, a new tube, called the oj tube that would go in through his mouth and down into his intestine acting as a stent to hold it in place for 10 days as the intestine recovered and scar tissue began to form. Her picture really helped us understand what she was taking about and how to make sense of what was going on inside Dash. She told us she had to go in with a new incision because the previous one wasn't low enough for her. We asked more questions, thanked her over and over and I never saw or spoke to her again.

We went to see Dash in recovery and he was super out of it, but I held him close and made sure he knew we were there. Seeing him like that, hearing the little sounds trying to escape his mouth, smelling that awful surgical smell, it hurts. It all hurts so, so bad. 
We eventually made our way back up to his room and got settled in for what was sure to be a long 10 days. 

I never did see or hear from the pediatrics doctor for the rest of that day. Not after the upper gi, not before surgery, and not after surgery. And yes, he was there all day. But I did get a phone call from the surgeon who did the previous surgery who I had been texting and speaking too prior to this surgery. He called me to talk to me about what this surgeon had found and he too could not believe his intestines and moved around and done what they did. He then told me something I will never forget. He said,"Kudos to you. You did good. You knew something was wrong and you did good. I'm sorry I couldn't be there. I'm sorry about what happened this morning, it shouldn't have..." Among other things that made me feel pretty dang good.  

Dollie basically spent the entire 10 days with grandparents. No children under 14 years old were aloud on the floor due to flu season. I planned to stay at the hospital with Dash 24-7 and Bodie had to work so it just made sense for her to go to Grandmas a couple hours away. Not a day went by that we didn't FaceTime at least 3 times and every single time she begged for us to come home. She couldn't understand why it was okay for us to be there but not her. She had a few really bad meltdowns that broke my heart. 

Not only was this time around much harder for her, but it was for all of us. Dash being older made things way more sad and frustrating. And if I'm being honest, this time was much harder for me than previous times, too. I had a really hard time processing what we had to go through to get that test done. The debates, the let downs, the tears...just feeling like I really had to fight for Dash and not understanding why, given his history. Not hearing from the Doctor afterwards made it all worse. Yes, I was glad Dash was okay. Yes, he had to have another surgery and that was also okay. Yes, I needed to move on. But I struggled. I still do, if you couldn't depict my angry tone above. I couldn't understand why I had to fight. And the doctor not coming in to talk about it all afterwards when he was so sure that it had nothing to do with another malrotation and made me feel like I was being a psycho mom who needed to relax didn't help. Me and Bodie ended up being right. No, I didn't need to shove that in the doctor or surgeons face. But I was right. And no one apologized or came anywhere close to it. At least not until the end of our stay. 

For the next 10 days we lived the hospital life and counted down each day that we were closer to getting the oj tube out and going home. We ended up being in our exact same room as the last time. We went through the same motions- waiting for the ng tube to suck all the green out, waiting for a bowel movement, beginning feedings and tolerating them. It's a process we know all too well.
Once feedings started he vomited and we were confused as to why because he was being fed through the oj which was down in his intestine, not his stomach, so there shouldn't have been anything to throw up. They quickly ordered an X-ray to make sure the tube was actually in the intestine and not the stomach and it was in fact in the right place. 
(the white stuff is the contrast they had used for the upper gi still making its way around)

We still never really understood why that happened but we continued on. Each day Dash got better and better and eventually was able to start sitting up and playing with toys. It does not take long for babies to recover. Within 5-6 days he was completely weaned off of all his pain meds and was happy as can be. He didn't even bother with the tubes after a few days and would just play around with the tube in his mouth and suck on it. Once the surgeon cleared him to eat orally it was exciting but hard for him. He couldn't get a good latch on me or from a bottle but we needed to get milk into his belly to prove he could handle it so I started feeding him through a syringe. Whatever works! And it did. We had some fun times waiting around all day long, day after day. I loved catching up with some of the nurses from our previous stay and enjoyed getting to know new ones. We also had lots of visitors and favorites come down from the NICU. Always a special treat. After like 5 days and a couple less tubes we were able to take Dash out into the hallway in a wagon and he loved it! He also was able to have real baths once his incision started healing up good. Here's a bunch of photos of our time spent there. 
(Starting to turn less green!)

(Finally starting to sleep on his own and not only in our arms.)

(Dr Susan Morelli from NICU)

(How Dash received his milk through the oj tube)

(My breakfast every morning. It was so good!)

Toward the end of our 10 days another doctor and surgeon (separately) took the time to talk to me about how everything went down that first day. Between the two convo's it all kind of came together and made more sense. 
Basically, Dash's case is super rare. We were told that to have to go in for a malrotation issue 3 times is unheard of. So when we showed up that first day in a panic demanding an upper gi, no one was in a big hurry to do it because the likelihood of it showing any obstruction was like...crazy rare. Also, Dash wasn't showing any tenderness in his abdominal area, and other signs. No surprise there. There is radiation exposure with the upper gi, so that's another reason. But the thing is is that it wasn't explained to me this way that morning. Like, at all. I still probably would have begged for the test regardless, but I would have at least understood their point of view. I suppose it's a good thing it went the way it did or else Dash probably wouldn't have gotten the test done when he did and it really could have been too late. I asked what I could do in the future to prevent having to "fight" like I did. In their own ways, they both basically said that because of the rarity of Dash's situation and because he continues to not present the way he should I will probably always have to fight for him. Each of them told me they strongly believe in maternal instinct and that this was the case for Dash and will probably continue to be. There's just really nothing else we can do. We know what signs to look for, we know what he needs. They did say that moving forward, if something were to happen again, it would be even more crazy and rare, but they offered some suggestions on how to handle it, which was basically how we did this time, but things we could bring up about his history. One other doctor who we love told us that Dash's story is one that could definitely be written in a medical journal. It just is such a great learning experience for all doctors and surgeons I guess. All these conversations I had with these doctors made me feel lots better. Unfortunately, they weren't with either the doctor or surgeon we had that day. That was a real bummer. I told one doctor that I was so happy he sat down and went over everything with me but that I was confused why it was him and not the other doctor who I thought would have come to talk to me himself. There wasn't a single say out of all 10 that he wasn't there. I saw him every day, and yet he never rounded on us or came in to talk. Well, he rounded on us at nighttime a few times but by the time he got to our room it was like 10:30/11 pm so he would just peak in real quick. I heard that he felt like he had broken our trust and figured it couldn't be repaired. Not sure if that's true or not. Either way, that's not my style, to just not talk about it at all. I like to work things out, talk things through, get rid of contention and understand better. Apparently this message from me was relayed to him because on our very last day he came in and we talked. He really didn't say much, which led me to believe he was told that I wanted to talk to him. Which is fine, I did talk. I told him how I felt that day and asked him if he would do anything different. There were things he said he would change, but all in all we worked it out and I am letting go. Trying to at least.  It's still drives me mad when I think about that morning, but I'm working on letting it go. I mean, Dash IS okay. They took super great care of him. I love those incredible nurses and doctors. If we have to, we'll go there again no questions asked. Turns out communication is pretty important as so is motherly intuition. My mother in law said, "Your motherly intuition beat the phD degree." She's right. 
On the final day Dash's oj tube came out and he was required to drink a certain amount of milk by mouth and hold it down before we were discharged. He passed with flying colors. No issues. Here are some photos I snapped of him and our room. 
(Happy boy! Ready go home)

(I have mixed feelings about his new incision. I really wish she could have gone in the one they went into the other 3 times, but I guess she just couldn't.)

(my bed)
(bodie's bed)
(our view) 
I sure hope that this post- part three- is the end. I pray there isn't a part four. But the truth is that Dash is a huge question mark. Yes, this last surgery went well and his intestines were put back where they should be. But that's what they said the last time. We pray every day that they will stay put. Dash is doing really well. He is so happy and loud and fun. We are having to give him things get him to poop every couple days. We never know if something is wrong until that very moment when it's really bad and then it's terrifying. But we are hopeful and positive and have faith that he will be okay and move past this challenge. We know he is meant to do something incredible in this life. 

Honestly, if you are still reading, THANK YOU. 
It takes me hours and hours to get these posts done. I put all the details in that I can possibly remember. Dates, times, photos, quotes, and all the feelings. Because I know that in 20 years from now I will be so glad that I took the time to do it and so will Dash. These experiences are life changing. Also, if our experiences, in any way, can help someone else then that is a wonderful thing! Thanks and love you all! 


  1. I love that you wrote this all down. To be honest, I've always been the kind of mom that sort of brushes off the little things with my kids (health related) but since following along with your story from the beginning I have become so much more aware and intuitive. Thank you so much for sharing this and for being such an example and mouthpiece for so many other moms out there! What a blessing you are to that little miracle, Dash!

  2. Wow. You are so brave and strong. What a wonderful mother you are! So happy Dash is doing so well now!

  3. Hi! I came across your story when I was searching "malrotation w/volvulus". I just wanted to share that we went through the same surgery when my daughter was 10 days old. Scariest time of my life!! We, too, find ourselves VERY VERY blessed and thank God every day that she only needed one surgery and she has been perfect ever since! I can't imagine going through everything that you've gone through with Dash. My body couldnt' handle that stress! Its nice to read someone else went through the same thing as we did. We attribute it all to God- the way He pushed us to take her to the hospital (we didnt have health insurance so I kept putting it off, even though she was vomiting green and I, too, had read that was BAD.), the way He blessed her first surgery to be a success and all of her intestines to be pink still, and the way He blessed us with the financial ability to pay off the $215,000 bill we had accruing. Everything worked out so perfectly because of our many many prayers. God is good!!