He's Our Miracle . . . Right?

Evan’s journey started in the summer of 2009 when Ben and I found out that we were carrying not one or two, but three babies! It was presented to us as a very high risk and unusual pregnancy as they were all sharing one placenta. We were shocked, “how does this happen?” we asked so many times. We soon realized that it doesn’t happen to that many people at all and we embraced our 3 little miracle babies and had to believe that they were given to us for a reason and we wouldn’t want it any other way.

Evan, Payton, and Riley were born at 32 weeks on January 22^nd, 2011 after I was on hospital bed rest for 4 weeks. Evan was the biggest at 4lb 1oz and pretty much sailed through his 40 day NICU stay with only minor bumps along the way. Evan (Baby A, #1) was named “Easy Evan” as, for the most part, he just went along with the flow and liked to sleep through his brothers fussing while providing a shoulder for them to cozy up to.

After having all 3 boys home together for just over 2 weeks we had quite the routine going and were getting by on minimal sleep. We started to worry about Evan though when our “big boy” started to not be interested in his bottles and started a new cry that sounded like he was uncomfortable. After a long Saturday night we decided it was time to take him in to the ER on Sunday morning, March 27^th. They treated him for dehydration as he also started having diarrhea once we were being observed. I was concerned that his first BM was really large, specked with blood, and looked rusty orange, which was new, but the RN was more concerned about the wicked smell and the large volume. They were now treating him for a virus, possibly rotavirus they thought, and at this point they decided to keep us overnight in the ER for observation. Since it was just me and “Easy”, he reaped the benefits of 100% breast milk (not supplemented with formula) and I think this really masked how his bowel was growing increasingly sick, as the breast milk is much easier on the gut than formula. We were sent home Monday morning with instruction to follow up with our pediatrician on Tuesday. Evan was still not back to normal, still very sleepy and only eating about half his normal amount. We thought we just needed to encourage feeds so he didn’t end up dehydrated again.

We started getting worried about Evan again as Tuesday progressed. Our pediatrician even called to check on him, hoping to find out he was doing well and possibly save us a trip out of the house (so nice to have a pediatrician who understands the complexity of multiples!). I told her that we thought his abdomen looked a little distended, he was sleepy and refusing feeds again and his poop was turning a rusty orange color once again. She had us come in so she could check him out. I left Ben home with the other boys thinking I would be home soon after getting direction to wait out the “bug” that Evan had caught.

I have never seen a baby get so sick, so fast.

The next few hours in the Dr’s exam room was h.o.r.r.i.b.l.e. Evan was now having large bowel movements consisting of pure frank blood and many of them. He turned white as a ghost, felt like an icicle and was limp in my arms. Dr. MP arranged for a direct admit to the Peds ICU so that he could have tests done asap and get taken care of. The wait for the ambulance was excruciating and once they arrived they spent an hour trying to get IV access on him to no avail. I signed consent to have him transported without access knowing that if an emergency raised they would have to stick a needle directly into his bone to give fluids/meds since they didn’t have direct IV access. Thankfully this didn’t happen. They had me sit up front as we battled rain and traffic on highway 26 to get to Doernbecher Children's Hospital. I remember feeling like a bad mom because I didn’t turn around in my seat to look at him, I was too afraid of what I might see. I hadn’t heard him cry for hours, not even during the 7 or 8 failed needle sticks he endured. My baby was too sick to cry.

The next timeline of events is a blur. I remember calling Ben and telling him that I needed him there with me. We had never both been away from our boys at the same time before, no one else had ever even helped us with a feeding since they left the hospital, it was time to put trust in others…fast! When Ben arrived they were STILL trying to get access to give him the fluids he so desperately needed. Ben found me in tears in the hallway watching a very large team work on our baby. At some point it was confirmed that Evan had necrotizing enterocolitis (NEC), and a very extreme case. We knew this wasn’t good as we had heard a lot about it when they were in the NICU and we knew that surgery was a possibility. The plan was to watch and wait to determine if they could medically cure Evan or if surgical intervention needed to happen. We were confident in the care team watching over Evan, he won the hearts of many very quickly.

Eventually Ben needed to go home to relieve our friends and care for Payton and Riley over night and be there for Brody when he woke up in the morning. Neither of us got any sleep. I was living a nightmare as I watched Evan be “bagged” before being asked to leave the room at 3am so they could intubate him; he had just choked on his own vomit and aspirated bile into his lungs. Evan was in Critical Condition. The next afternoon the decision was made that surgical intervention needed to happen due to his decreasing labs and increasing redness on his distended belly, showing on the outside just how sick he was on the inside. I once again called on Ben and told him it was time for him to come back to the hospital. Luckily my mom had now arrived from ND to care for the other 3 boys at home. I finally got to hold Evan after countless hours of crying over his bedside. All I remember saying to Ben when they placed him in my arms was “He is one of our miracles, they are a package deal…they can’t take one away from us now, right?” I can’t even write this without the overwhelming gush of emotions and tears. We knew that there was a chance that he may not make it out of surgery or that it could be possible that his entire bowel was too sick for repair. We called on family and friends for prayers to get us through and boy did they come through for us! It was absolutely amazing to see our blog and facebook explode with prayers from our family, friends, the FHM multiples group, church groups, friends of friends of friends, etc. and hundreds more of people we didn’t even know. I remember Ben and I scrolling through facebook on our phones just sobbing, appreciating every post but finding them so hard to read at the same time. How did we get here, we kept asking ourselves?

Evan came out of surgery missing 17cm of his small bowel and 2 stomas of bowel sticking through his abdomen. The surgeon was thankful they made the decision to operate when they did as his entire bowel was very, very sick and they removed as much of the necrotic bowel as possible with plans to put him back together at a later date. We were overcome with joy just to see his precious face come through the doors and the smiling faces of the entire surgery team. They did good!

We are still living the long road to recovery which has of course come with highs and lows, progress and set backs. At this point he is doing well with his feeds, slowly but surely. They are increasing the amount by 5ml a day in order to make sure that he doesn’t have any scar tissue strictures that could cause an obstruction and possibly start this whole nightmare over again. The best case scenario will be for him to continue to improve with no problems and only have to have one more surgery to put his bowel back together and no more surgery to take out any scarred or necrotic bowel. Evan has a lifetime of concern ahead of him according to the doctors. Anytime he vomits, refuses food or gets distended we need to consider the possibility of obstructed bowel due to a stricture as a concern. If this was to happen the same decisions would have to be made- can it be treated medically and with bowel “rest” or does surgical intervention need to happen again. My hope for Evan’s future is for the best possible outcome involving only one more successful surgery and a full recovery. Hopefully someday we can look back on this as a distant memory and not a condition that continues to haunt him.

Holding Evan after getting initially stabilized, not knowing what to expect next.

Evan out of surgery. We never shared any of the few pictures we took during this time, it was hard enough for us to live through- we didn't want our families to see him like this as we thought the image they had of Evan while they were praying should be of the strong baby they all knew.

This is the extent of what we shared with our family, we tried to keep what parts of him we could looking like the cute baby he was ;)

Payton and Riley missing their brother.

Evan got even bigger the days after surgery.

Big day- the first time Evan opened his eyes in almost a week.

Progress! Looking so good off of his vent and losing some fluid weight.

Evan had a step-back and had to be put on CPAP, we brought in his brothers for healing and support!

Looking much better on his road to recovery with support from his brothers.

Sweet Evan 1 week prior

Ben and I are optimistic that this strong boy, along with the outpouring of love and support from so many, will be carried through and eventually get to the point of thriving along side his brothers, our 3 little miracles.

from FHM member Brooke Waind
Read more about Ben, Brooke, and their boys, and keep up with Evan's journey on her blog: www.journeyofatrio.blogspot.com

Volunteers from Full House Moms and Dads have been working hard to help the Waind family through this difficult time. A Care Calendar has been set up to facilitate meal delivery to the family every other day and has been almost completely covered since two days after Evan went into the hospital. In addition, ABC Doula Service has donated doula time to help the family care for the children still at home. They have also agreed to match any donations hour to hour so that the Wainds can receive more doula help while they are juggling their time between home and the hospital. If you are interested in helping with either effort, please contact Taira at support@fullhousemoms.com