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.

From the beginning Part 1.

In the past I've participated in different things like Octobers "capture your grief" or Novembers "30 days of thanks" and have just blogged when I felt the need or desire to. None of it has ever given me so much of what I was looking for though.. Back in January I had the opportunity to tell some parts of Grace's story out loud. It proved to be much more emotional than I had imagined and I realized that in 5 years, I hadnt spoken much of her story out loud at all. Once she died, either most people already knew what had happened or didn't really much care to hear much after "our daughter died" and Im never really sure how many details people want or can handle. .. I realized so much of her story just stays in MY heart. Sometimes people say theyd like to hear it, but then there isn't time or opportunity. Other times I am sure people are curious but do not want to be rude, or whatever. I have decided that I want to write it all out. For anyone who is interested but also for me.


People often ask "did you always want a lot of kids? Did you plan on having a big family?" and for Adam the answer would be absolutely not, and for me its more open. Ive never really known how many kids I wanted and always sort of figured it wasn't my decision. But that being said, we were pretty sure our 3 boys were going to be "it". We were transitioning out of the Navy and things were going to be VERY different and we were pretty happy with our 3 boys who were getting older. We didn't have a job or house or anything lined up for when he got out of the Navy, but were working on it, its a whole process because youre basically just starting a totally new life. Not the time to have a baby honestly.

So of course a week before we were supposed to have the movers come and pack out the house, I felt a little funny. Adam had went out with a good friend for a farewell dinner and I went to Target, came home and took a pregnancy test. I still remember that one of the boys needed me so I left it on the tub and went and helped them and momentarily forgot about the test. I eventually went back and checked it out and the line was SO faint ( I was 6 days before my period was due) and I swore my eyes were playing tricks on me so I called my neighbor and had her meet me on the hill between our houses and she confirmed I wasn't crazy but that I was pregnant. What a total wrench in our plans but I was so happy!


We moved and things were a bit rough with trying to get all of our ducks in a row, and my being pregnant did complicate things but we were SO excited for this baby. I knew in my heart we were having a girl but I also had so many ominous feelings. I just felt like something was wrong, at first I was certain I was going to miscarry and then that something was wrong. I was SO sick. I had never felt so bad during pregnancy before.

We had an ultrasound at 8 weeks 5 days and I was so scared that there would be no baby. This baby was so unexpected and the timing was awful. Our lives had never been so unstable. I remember my cousin telling me "hopefully this new baby brings you the grace you need in this time"
We had the ultrasound and we both cried watching this new unexpected life wiggle around on the screen. So beautiful and so full of hope and grace.. We were going to be ok. The office we were at had very good machines, the tech was very skilled at what she did. She was just chattting and mentioned that she had not been able to locate the entire diaphragm but that it was not a problem. I asked "its ok? not a big deal?' and she assured me that it was fine because she said I was still in the weeks when it is developing, she said "it develops until 11 weeks, youre fine and it will develop!' I said OK sounds good to me because she wasn't worried at all and how importatant is a diaphragm anyway? I promptly forgot about that conversation with her until many months later.

The pregnancy went along as normal. Adam did find a job, and it was going well until one day he still wasnt home after an hour past when he was supposed to be. I worry, when someone is late I worry immensely. I texted a few times with no response and then called his cell and it went straight to voicemail. Panic. Called his work but it was closed by then. He called a few minutes later. He was in a car accident. He had been rear ended by a semi truck on the turnpike. His car flippped numerous times and he ended up upside down in a ditch. He was driving a small nissan sentra and had been hit by an 18 wheeler...
He had no injuries other than a broken thumb and a shoulder injury. He did not have anything that was to be expected out of that sort of accident and he was alive. The trooper told me that he shouldn't be alive and should be in very bad shape, that someone knew he was needed here. We had no idea how much so.

We went for our ultrasound at 19w 5 days. The provider I saw at this point was different than the provider I had seen at 8 weeks. This new provider had you go to an ultrasound imaging office for your ultrasounds, who would then send a report to the dr/midwives. They had one Saturday a month that they offered and I was so excited they had an opening because that meant Adam could go! We took our 3 boys and the tech was not talkative or friendly and we were the last appt for her day. She was pretty quickly able to tell us we were having a GIRL. We were so happy. She didn't point a lot out but at one point she had me turn onto my side, lift my hips, she shook my belly..she said she was having trouble vewing all chambers of the heart.BUt then she said "oh there they all are and she showed me. then we were finished. I had never had to do so much moving and I just had a bad feeling. I asked "is our baby ok?" and she said "I can't tell you anything, your dr will talk to you about that". I felt uneasy. But then at my next appt they said the report said everything was great. So we continued on with a normal course of pregnancy. We bought a house and we started preparing for her arrival and we started to feel as though despite a rocky beginning, this civilian life was starting to settle down and wasn't so bad....

Remembering

My memory has always been interesting to me. I was joking one day that I am like the Keeper of  the memories in "The Giver" I feel the memories, the emotions of my memories are always there. It is very difficult for me to remember a painful memory without actually feeling the emotions that I felt at the time. Its both a blessing and a curse I suppose. I am constantly told that I am too sensitive. That I let too much affect me. That I take everything too personally. I don't know if any of that is really true, all I know is that I can't help any of it. I feel the way I feel and I can't change it.
So with memories comes remembering dates. Knowing June 8 was coming has been gnawing at me for awhile, every single year it does. I would venture to guess that not one other person knew the significance of today. And I guess that is ok. But I have to get it out, maybe it will feel less heavy.

5 years ago on June 8, 2011 it was extubation day. After 9 incredibly long and difficult weeks Grace was breathing on her own, with the assistance of some oxygen via nasal cannula. She rocked it. It was an entirely different ballgame then. She spent the first 18 days of her life on a heart and lung bypass machine, mostly always paralyzed by medication so that her body could not try to do any work at all and finally after 9 whole weeks with a tube down her throat and tape all over her face she was free of it all. It was amazing.

I remember it all. Adam and I both went to the hospital together, and our friend Sandra came to visit and meet Grace. It was the first time we had gotten to see her since we moved from WA in 2007. Amy was her nurse that day, which made us so happy since she was her primary. It was going to be a very hot day so we had filled up the pool for the kids before we left, my mom was babysitting.
They extubated her in the afternoon and they warned us that sometimes it really doesn't last and they have to put them back on the vent. For me it was very intense. It was scary. She did awesome. Her blood gasses were perfect and she was happy and calm. We stayed for awhile and then ran out to grab some food. I remember that I felt better than I had felt in a long time. With the removal of that tube, a weight was lifted.

She was extubated and handled it amazingly and for the first time since she was born I believed she was staying. With that simple procedure, I let myself believe she was coming home with me one day. She rocked it and never needed reintubation except for when she had surgery to place her shunt and she was extubated pretty quickly.

I wholeheartedly believed 5 years ago that she was coming home and I got to keep her. I had no idea how wrong I was. I had no idea how many more obstacles and heartbreaks her life held and I was so naive to think she was going to be ok. My heart has been hurting so badly. How did she make it so long, when nobody thought she would but then she didn't get to stay? I miss her so much, I wish I knew what she would be like now.

That is how grief works, things that just sit beneath the surface and then come to a head and have to be dealt with. I love that I can remember her, and one of my fears is forgetting. But the memories hurt sometimes. It is just so bittersweet.

It was a day filled with so much hope. And I know that there is still so much hope. No not hope that shes going to be ok and come home, but hope that we have a place waiting for us with her. Hope that this life can still be beautiful even through all of this immense pain. Pain that hasn't subsided after all of these years, but rather that we have just gotten so much better at carrying with us.

oh pretty baby, I could look at you all day. First picture without tubes and tape.