Part 2

Part 1


http://gracescdhjourney.blogspot.com/2016/11/from-beginning-part-1.html


Part 2

Holidays came and went and all was going well. But I just had an awful feeling the entire time I was pregnant with her. I couldn't put my finger on it and I never told my OB or midwives. A choice I regret. I figured I was just being a worry wort. I figured it was just my anxiety and I told myself that every visit, shes gotten bigger and her heartbeat was great, she didn't move a ton but she moved enough and I needed to stop worrying. Maybe if I had told someone, this story would be different. But maybe not. I wish I could accept that I don't have the power to change the course of her story, but its such a hard thing when in hindsight, you see exactly where things all went wrong, time and time again.

March came and it was baby time! She was due March 27, 2011. March 26 came with me being SO tired. Iain was 4 and he kept wanting me to get up, and I just wanted to sleep in, it was a Saturday and daddy was home, I kept telling him to let me sleep and go find daddy. I wish I'd just gotten up and snuggled him and hadn't been so crabby. It was the last normal day of his life.
All day I felt off and had some very minor cramps but they were accompanied by a need to use the restroom so I brushed it all off. It certainly was NOT the way labor had went the other 3 times. We put the boys to bed around 7:30/8 and I just rested. I was texting with my friend about maybe being in labor. I started timing my cramps which I wasn't sure were just cramps. They would look like they were getting into a pattern but then stop and have a large break with nothing. So I thought I was crazy. Adam called his mom around 9:30 amd asked if she would come just in case and she came around 10. Around 11 pm he came upstairs and told me I was in labor and to call my midwife. I told him no because I dont have babies at night and just needed to go to sleep. The boys all were born during the day with labor starting during the day so I was certain she would be the same. He insisted and I insisted I wasn't calling because I wasn't in labor and didn't want to bother anyone at night. He said "call them before I do, Im not delivering this baby in the bathroom"

I called and my favorite midwife was on call ( they all are amazing but I always felt a connection to Kim) and  told me to come in because she was there at the hospital anyway. Thank goodness. I went to the basement and unloaded the dryer and folded the clothes.. It was the last load and I didn't want it to sit in the dryer. ( I had worked really hard for weeks to get an amazing laundry routine down haha) Then we left. As we were driving, I started getting really strong contractions and I realized I really WAS in labor, thank goodness my husband had some sense. He sped along and I had to roll the window down because I was hot and nauseous. We got to the hospital and because it was around 11:40 pm we had to check into the ER. We had to wait, I was so aggravated because the lady was taking her time, even after I told her I was in labor. I could tell I was close. They made me ride in a wheelchair and I was very aggravated about that, I wanted to walk. We got back and they put me in triage where Kim (my amazing midwife) checked me and laughed saying "youre an 8, ready to have this baby soon?'. We started to walk to my room and I had to stop because I had a huge contraction.. Good thing the ER didn't let me walk.

We got into the room and within minutes I needed to push. I remember thinking it hurt SO badly, moreso than any of the babies before. I couldn't do it. Kim said "look you ARE doing it" and I looked down and saw my beautiful girls face and it gave me the strength I needed.At 12:07 am March 27,2011 I delivered my very first baby daughter.  Kim handed her to me, and her eyes were open, she looked right at me, right in my eyes and I panicked. I knew she was not ok, in that instant I knew my intuition had been right.Her mouth was wide open but there was absolute silence. Adam cut the cord and she made the most heartwrenching gurgle. A choking, drowning gurgle.  My nurse Ericka quickly grabbed her and within seconds the room was full of people. I heard her say she heard heart tones on the right and bowel sounds in her chest and I thought "all of that is impossible" quickly the room was emptied and I was left alone. I didn't know what was going on but I never imagined it was as bad as it was. I really thought at first that they would bring her right back to me and say "shes fine!" That obviously didn't happen.

I should mention, the hospital where she was delivered doesn't "do" sick babies, nobody under 37 weeks or with complications.After awhile Adam came back and said she was doing ok. He said that they said she would need surgery but he gave me very little details. I remembered being told that my oldest brother had had surgery as a baby and it had no negative effect so I wasn't super worried. It is interesting to me the way we actually deal with things when they happen to us, rather than the way we always would think we would. I would have assumed I would have been frantic, but I think I truly went into shock and became numb for those hours. It was a very surreal night and my breakdowns all came later. I remember he told me I should call his sister to come sit with me so I wasn't alone and I did. She came out at 3 am to sit with me.
 They had to call a neonatologist from a nearby hospital that does have a NICU and she came and talked to me. I remember she just looked grave, she looked tired and disheveled and I immediately questioned her credentials. It was all part of my ability to compartmentalize.

I couldn't even tell you her name, but if I were to see her again, I would recognize her in a heartbeat.
She started off by telling me that they had put a tube down her throat blah blah blah. That is what I heard for most of it, you know the Charlie Brown adults, that is what I heard. I just couldn't understand her words, for some reason. Until she said this which I remember clear as day. "with babies like her, we need to get her to the best place possible with the right equipment to care for her. Toledo does not have those capabilities, and the best place for her is Mott at University of Michigan. If we do NOT get her there, she WILL die" she didn't say, she *could* die, she said WILL. Then it was like a ton of bricks. I was being told that my brand new, just born, very very wanted and loved baby was going to die.

She was then tentatively diagnosed with Congenital Diaphragmatic Hernia. (CDH) CDH occurs in 1 in 1600 pregnancies in the U.S each year, 1/2,500 worldwide. During weeks 7-10 of pregnancy the diaphragam forms. In CDH, the diaphragm either does not form at all, or fails to form completely, leaving a hole. This can vary greatly by case. There is not yet a known cause for CDH, nor is there a way to prevent it or "cure" it. The organs that are typically housed in the abdomen, and kept down there because of the diaphragm are then able to migrate up into the chest cavity through the hole or lack of diaphragm. Again it varies which ones. Sometimes its just a small loop of  bowel, sometimes it is all. Intestines, stomach, liver, kidney, spleen. Surgically all of those can be put back down into the abdomen and the hole closed. The reason it is so severe however, is that because of the organs being up there, they crowd the space that the lungs need to develop. Lungs develop last and if there is no space for them, then they just don't grow. If they do grow, they are not developed correctly because of the crowding of the other organs. CDH babies have lungs smaller and sicker than preemie babies. I will get into Grace's specifics later but she was 7#4 oz which is an average size for a full term baby and her left lung was the size of a penny. At first they didn't know if she even had one.

And yet, I still thought she would go to U of M, have a surgery and be FINE.I knew U of M was amazing, they saved my cousins life when she had cancer with a slew of complications, and of course I was following along with Bowen Hammitts story and they saved him. They would save my baby girl and we'd be fine.
Adam said "it will be ok, we will be ok, this is just one of our trials and we will get through it" but that bad feeling was back again for me.

Later I would find out that my nurse suspected CDH right away, and they were able to get help quickly. She told me that a few years prior shed had a similar delivery and she knew when she saw Grace that it was the same thing. Because of her quick thinking and skill, we had time with our baby. I've always felt it was one of those "God things" that I didn't just "happen" to end up with her as a nurse (and later as a friend) but that she was "supposed" to be there.
In the CDH community, we often say and think that our babies who were lost, "watch out" for those who are here still. And medically, each baby lends something to the people caring for these babies, teaches them things that may help another baby. I always felt badly that another family before us had such a similar start but that baby blessed my family with his life and experience.

I couldn't even remember what the dr had said she had, so I asked and then I googled it. On my tiny phone. That I had forgotten the charger for, and that was rapidly running out of battery. The first thing that came up was that 50% of babies diagnosed with CDH die. I thought, "must be something else, because she will be totally fine as long as she has a surgery" and then I stopped reading. I think I just didn't want to believe anything.

Before too long the transport team brought her to me, she was going to be taken to Toledo Hospital by ambulance, and then when she was able, she would be flown to U of M. I still really wasn't grasping the severity of the situation. I truly believed she would be fine, which is amazing that we are able to put those coping mechanisms into place, rather than just break down and become a mess.
Adam went off with her, and I stayed. I waited for updates and remember he was texting that they were trying to get her CO2 levels under control and I wasn't really sure what exactly that meant or anything but figured she was fine. When you don't have experience with things, and aren't there to see, it is kind of hard to really grasp things I think.