Anya Mae Eaton, born 6-16-2012, 6lbs, 5oz, 18.9 in!!

Friday evening I was admitted to be induced, Dr. Kays was hoping I would deliver no earlier than Saturday morning, so they were not very aggressive in adjusting my Pitocin. I came in at 2, and was still at 2 the next morning. My contractions were pretty inconsistent. They waited a while to see what I would do on my own, figured out pretty soon that nothing would happen, so in one hours time I had in my epidural, my Pitocin increased, and they ruptured my membranes. Sometime around 5 pm they told me I was about a 6 and they would check me in another few hours, but I was to call if I had any additional pressure. I was having a hard time figuring out if anything was all that different, so around 5:40 I called for them to check me again, apologizing for probably jumping the gun.

Good thing I called, because Anya was ready to go, they had me out of there and into the surgical suite in minutes. Dr. Kays came by my bed, asking, “Well, how are you doing?’

“What is she supposed to say to that?” said a random medical team member.

“What am I supposed to ask, ‘Do ya want a beer?’” he replied. He discussed ECMO with me again, getting my permission to put her on ECMO immediately if needed. I told him about Pastor Schade waiting in the hall to baptize her, he assured me that that was fine.

In three rounds of pushing she was here, at 6:01. I tried to sit up as much as I could to get a good look; she was too critical for me to hold her for any length of time. She looked so much better than I expected; I thought I would see a limp, unresponsive baby; Anya had good muscle tone and blinked, then gasped a few times managing a few soft cries; it was more than I could have asked for!

I could see Dr. Kays and the rest of his team working on her across the room while they worked on me, he appeared really relaxed, joking about CDH ‘cheesiness’ and quipped that ‘if we were at the University of Wisconsin we could have put up a cheese sign for her.’ I called across that I was ready for that beer when he could get to it. At some point he determined that ECMO wasn’t needed immediately, he brought her by me in the NICU bed before they left, holding her up so I could see her; blinking and responsive!

I waited in my previous L and D room while they got her straightened out. Pastor Schade was very impressed with how smoothly everything had gone with the baptism: he said that there were religious institutions that had not had been as accommodating. A few hours later Dr. Kays came back to report that she was doing well, we did have lung to work with. That being said she was a sick baby, and he planned surgery for 8am the next day. He anticipated that ECMO would be needed the next day and wanted to get surgery done before.

Sunday morning he discussed the surgery a little more. Anya was a little sicker than he would have liked, but he still wanted to proceed. Most places would not go ahead with it, but he felt confident that he could be successful. They would do the surgery in the NICU. The rest of the day was tense. He had said that he would have someone updating us, but we never got a call or saw anyone. I called at 10 am, and surgery had not started yet, she was still being prepped. At 12 I considered calling again but Adam reasoned that bad news does not wait and we trusted them to keep us updated on what they could. Finally at around 2:30 pm  we were told he was ready to speak with us and we booked it down to the NICU; however we were told that Dr. Kays did not want to leave her and to wait for a while longer. After about an hour or so he came out, he was delayed because Anya needed ECMO. He essentially had been one on one with her all day, and changes occurred so quickly it was difficult to update us.

 He had hoped that ECMO could be avoided for at least 4 hours after surgery, they managed somewhere around 2 hours. The surgery had went well, but he had to proceed very carefully due to her condition; he had been walking on thin ice to keep all of the numbers where they needed to be, but nothing had gone into the danger zone. He showed us her x-rays, a picture of the inside of her chest, and gave us a piece of Gore-tex that he had used to fix the hole in her diaphragm and keep the organs down. He said that the majority of babies who can make it to this point will survive, but did warn us that many things could still go wrong.

So now I am going to try to explain ECMO in CDH babies. Anya’s biggest problem is that her lungs are smaller than normal, since all her stomach organs were crowding them during development. The lungs take in oxygen of course, but they also need to get rid of carbon dioxide. If you can’t get rid of the carbon dioxide it causes a lot of problems and eventually you die. In order for a CDH baby to improve, their lung size needs to improve so they can get oxygen and get rid of carbon dioxide normally. That is why the surgery needs to happen; until the stomach is out of the way there is no room for the lungs to grow.

It takes a long time for lungs to grow, many weeks. Small lungs put a lot of pressure on the heart, the heart tries to make up for what the lungs cannot do and it gets exhausted, and the babies develop heart failure, and they die. The ventilator is supposed to help, but normal vent settings can be so hard on small lungs that the lungs end up scarred, they cannot work, and the baby dies.

Enter ECMO. ECMO takes blood out of the body and puts oxygen in it, takes carbon dioxide out, and runs it back in the body. The heart beats, but it does not have to accommodate for small lungs. The small lungs don’t have to do a job that is too big for them; they can just grow. The problem with ECMO is blood clots. Any time you mess with blood that much, taking it out and running it through a machine, it wants to clot. Clots turn in to strokes and all kinds of nasty things; so they give the babies blood thinners to prevent this. Blood thinners right after surgery is not ideal, the incision and everything that was messed with can bleed easier. Even without a surgery there is always a risk of bleeding, especially in the brain, the entire time a baby is on ECMO. This can cause a lot of complications, but without ECMO Anya would not have a chance. Dr. Kays has a good track record with ECMO, and few of his patients have complications.

Doing the surgery early was the best Dr. Kays could do for Anya. He took a chance that many other doctors would not have taken, and she has been doing very well so far. The largest risk of bleeding is in the first 48 hrs, as I write this she has been on ECMO around 30 hours and she has had no problems yet. Her vent settings are relatively low. Her urine output is good. He expects she will need ECMO for around three weeks, but there are no absolutes here, ECMO is a day by day experience.

We are feeling very optimistic! So many things continue to go well! It would have been great if Anya had not needed ECMO or surgery so early  but we anticipated she would, so I am not disappointed. I feel like I should be anxious but am not, I look forward to seeing Anya move forward. For the first time since all of this was discovered, I am allowing myself to think in terms of ‘when’ and not ‘if’: when I get to hold her for this first time, when Arwen comes to visit, when we go home.

It is a precious thought!