The beginning

 **When I started this short blog almost two years ago, my mind was very foggy and full of mostly just feeling things in waves and barely being able to process anything. I was fiercely protective of any information I shared regarding Adah and was somewhat scared to share my story in great detail because the emotions were just too new.  But I needed some kind of outlet at that time so that I wasn't constantly reliving things in my mind and so I could just share something about what was going on. About a year ago, I decided to write out my experience in greater detail and decided recently that I'd like to share some of that experience on this blog.**

I have been given the strange and initially most unwanted gift of having a very different perspective on pregnancy and motherhood. There are a great deal of women to whom the process of pregnancy comes easily. They think and plan to get pregnant and then they do. They carry and grow their unborn child to 37 weeks or more and then birth their child. It is the way things are expected to go. It is the way things go for a good portion of women. It is the way I had thought things would go for me. 

       Things didn’t really go the expected route for me even from the very beginning. I had heard and known several women who had a difficult time getting pregnant but of course there was a little voice in my head that said that probably wouldn’t happen to me. While I am beyond grateful I did not begin the long journey of infertility that I have seen some very strong women embark on, it took almost a year for me to get pregnant and by that time I had been through enough months where what I had wanted was just not happening that when I finally saw that I was pregnant I had a much deeper understanding for what a gift pregnancy is. From the beginning, I loved being pregnant. Even the times when I was so nauseous I felt like I was sea sick all day long for weeks and weeks, I knew that my body felt that way because I was growing a baby and so all that nausea was a reminder of this amazing gift. (I promise I am sincere in saying that). Don’t get me wrong though, I did not love feeling nauseous and having weird food aversions. But I did love what it signified.

    During the first trimester, I worried about miscarriage. I had read so many things that made it sound like you basically had to sit still for 3 months in order to not have a miscarriage. I figured if I made it through my first trimester then it would be a given that all would be okay. I almost didn’t even mention to my doctor that I had been born with a congenital birth defect (a cleft palate as a result of Pierre Robin sequence). At my second ultrasound appointment I asked my doctor if I needed to have any special testing done to see if my baby was at risk for having a cleft palate (I had already known there was a pretty low chance of my baby being born with Pierre Robin). My doctor said to be on the safe side, she would recommend I see the high risk OBGYN where they would do some testing and some fancy ultrasounds to make sure everything was okay. So, I somewhat grudgingly went to the high risk doctor and continued to go for semi regular visits, always having a little anxiety but generally just being excited that I got extra ultrasounds of my baby.

     Everything was going well in pregnancy land as I entered my second trimester and I loved getting to feel Adah move around and loved that I was showing. I was becoming accustomed to the high risk doctor and I figured since everything had been great that by my 28 week visit I would get to stop going to her. I even told Dustin that I was excited for that visit to hopefully be my last visit with her. Then I went to get my ultrasound and I heard Adah’s heart beat and I thought ‘okay, things are good, there’s the heartbeat’ and I breathed a sigh of relief. Then the ultrasound technician told me Adah’s weight and something seemed a little off about it so I asked if that was a normal weight and she said “no that’s actually really small. Then, the technician just walked out of the room, leaving a gaping black hole of fear and uncertainty in her wake. I had never even remotely considered that my baby wouldn’t be growing well. I didn’t even actually know that could be an issue. When the high risk doctor came in, she was very serious and discussed why it was concerning that Adah was small. She also let me know that my due date had been off and that I was actually only 27 ½ weeks pregnant. She told me that I wasn’t at a high risk for preterm labor but was definitely at risk for a preterm delivery and that if I made it to 37 weeks that would be amazing. An ocean of helplessness and fear encompassed my body and I was slowly sinking to the bottom. I initially was very angry with the high risk doctor because I felt that there had to be something that I could do to help Adah grow but she said there was nothing. She did not use the term Intrauterine Growth Restriction (IUGR). It was not until I followed up with my regular OBGYN that I heard that term. My regular doctor was very comforting and said that it was still a possibility that Adah could just be small for gestational age and that since I was on the small side it could make sense that Adah would be measuring small. Then I went home and googled IUGR and then cried and then told Dustin not to let me google anything for a while. It was a frustrating time of trying to learn more about IUGR so I could know what questions to ask my doctor and not reading so much that I was in a constant state of panic. Then I went to another ultrasound with the high risk doctor and my blood pressure was high and they said, essentially, ‘oh you’re going to become preeclamptic and there’s nothing you can do.’ This is a horrible thing to say to a pregnant woman. (By the way I never did develop pre eclampsia).  Around 30 weeks they recommended I start doing twice weekly non stress tests and monitoring my blood pressure every day. I don’t know what woman would find a lot of peace in that situation. It was heart breaking and terrifying to suddenly be thrust into the unknown, where the worst case scenario was becoming one of several potential realities. I still treasured my pregnancy and I was fiercely holding on to it. I began to eat several meals a day in hopes that the added protein would help give Adah a boost to her growth. I sung to Adah, I read to her, I talked to her, I prayed over her repeatedly and I pleaded with God to 1.let her grow and 2.let her somehow know how deeply I loved her, let her know I was fighting for her with everything I had.  I had another appointment with my regular OBGYN at 31 weeks. For the first time, my regular doctor who was normally so casual and breezy, was very serious. That made me more scared than all the other visits with the high risk doctor. My regular doctor told me to be prepared to deliver Adah any time I went to see the high risk doctor. She told me to go ahead and pack my hospital bag. She said that 34 weeks was now our goal and that being born at 34 weeks while not an ideal scenario was better than being born any time earlier. I then began to mentally prepare for Adah to arrive at 34 weeks. I adjusted my mind set to envision my first weeks with my newborn to be held in the NICU rather than at home. My baby shower was scheduled for the weekend before I would be 33 weeks. So, I thought as long as I could have my baby shower, I would be okay. I had an ultrasound appointment with my high risk doctor when I was 32 ½ weeks. I very distinctly remember being excited to go eat a big breakfast with Dustin after the appointment.
      There were a few red flag things the doctor had told us about that would most likely mean I would have to deliver if they happened. All of the things she had told us about turned out unchanged at that ultrasound but when we asked about Adah’s weight, we were devastated. She had only gained a few ounces in 2 weeks.  I knew that was not good news as soon as they told us the weight. The high risk doctor came in, for the first time looking warm and compassionate, and told me “lets deliver your baby today!” I cried. She told me my placenta looked no good and that it was time to start growing Adah on the outside. I asked if Adah had any indicators for Down Syndrome or any other genetic markers for chromosomal defects. She said no but there was ‘always the possibility that she could have an infection or cerebral palsy.’
      And so with this information, with my heart about as busted as it could get and still be beating, I did what many women do when they are distressed. I went to Target. I had an eerie calm about me as I was buying things to pack in my hospital bag. Dustin was in high panic mode and I was essentially coasting through this nightmarish reality. I had zero control of the situation. I couldn’t call in sick to my C-section. I couldn’t say “oh hey can we reschedule to next week?” I had no options but to have my very tiny baby delivered into a world that I knew would be much too harsh for her.

Light

"Hope deferred makes the heart sick, but a desire fulfilled is a tree of life."Proverbs 13:12

Adah has been HOME now for 7 weeks! She spent 50 days (too long) in the NICU mostly just trying to gain weight. It was without a doubt the hardest season of my life and I am incredibly thankful to be on the other side of that suffering and waiting period. 

All the darkness that I felt, all the despair, all the crying I did, has now made every moment spent with my sweet girl richer and more joyful than I could ever have imagined. Where I once felt a crushing weight on my heart every single day for 50 days, I now feel light and more happiness than I have ever felt before.

I get to hold my daughter every day, every second of the day if I want. I don't hold her every second but I do hold her a lot and it is awesome. :) If my daughter cries, I get to comfort her. She no longer has to get blood drawn every week and we no longer have to drive 20 minutes to see her. She gets to sleep near us and if we drive somewhere, she goes with us. We definitely have our rough moments, especially when Adah cries and we have no idea why, but this feels normal. We actually feel like parents now. We get to be sleep deprived and clean dirty diapers and figure out ways to entertain our baby. It is wonderful. :-)

There are definitely still hard things that are part of our new normal. Adah is currently the size of a small newborn but to us she is a giant. Its been funny to have strangers comment on her size and know that they just have no idea how far she's come. We know that it will be a different experience for us to watch Adah meet various developmental milestones because some of the time she will meet them at her adjusted age and sometimes she may meet them at her actual age. So, don't expect us to do one of those posts where we say how old she is and all the developmentally appropriate stuff she's doing. She's a genius and she will do all those developmental things in her own time. :) It is still hard at times for me to see a pregnant woman or to see pictures of people with their beautiful, full term babies and to be reminded of what I lost out on. However, now I am able to see everything that I have gained from my experiences and I don't feel bitterness (most of the time). I feel thankfulness and strength. I am a much stronger person now and I know that I will be a better mom to Adah because of our experiences. I have a better understanding of how to empathize with people that are suffering and feel confident when I say that someday they will eventually feel better. Time is a wonderful healer.

I don't know if I will write in this blog again but I wanted to give it some closure in case I decided not to write another post. We are beyond grateful to everyone who reached out to us during Adah's NICU stay and were moved to tears many times by seeing how supportive and encouraging people were to us. If you said a kind word to us or prayed for or with us, or were just present with us, we can't ever adequately express how much that meant.

Thanks for reading!

Coping

In the wise words of Liz Lemon, "Sometimes, things are just the worst." That's a great description of how it feels to be going through a really difficult season of life. Sometimes, things just suck and its annoying when people try to tell you that your painful experience is actually a super positive thing because blah blah blah. I'm not saying difficult seasons don't have their awesome moments because they do, but I am saying, please don't oversimplify someones dark time by telling them to focus on all the positive things just because you feel uncomfortable with people suffering. If you are suffering, it is okay to feel not okay. It is okay to be sad and to not be able to think of something nice to say about your life. It is also okay to feel joyful amidst all the awfulness. Basically, whatever you feel, it is okay. I think people do more harm than good when they refuse to acknowledge their feelings of defeat or despair or whatever because they don't want to seem like a 'negative person.' Positive moments just don't seem to mean as much if you haven't also experienced some negative moments. God is good all the time, but life is not and that is okay.

  Anyways, now my rant is over. Here's a super awesome list of things that have helped me cope during this season:

1. Binge watching TV shows on netflix - (current favorites: Scrubs-the JD and Elliott love story never get old to me, Orange is the New Black-at least I'm not in prison, True Detective- the darkness of the character's lives make me feel better in some twisted way...) I mostly watch TV while I pump because pumping is really boring and can be sad when you don't have your baby at home with you so its nice to have a distraction.

2. Mini Frappuccinos from Starbucks- I like to call them Preemie-cinnos. :)

3. Dustin- He's essentially the best human on earth and I don't know how I could go through this experience without him. Oh, he is also the best dad to Adah and it will melt your heart to see them together some day.

4. Friends that make me laugh- Oh, Lord, I love being able to laugh right now. Its extremely healing. I love, love, love that I have some wonderfully hilarious friends in my life that I can talk to about serious stuff or I can talk to them about re-writing TLC's No Scrubs song to be about babies wearing scrubs. :), or talk about the wide variety of water bottles available, or make up awesome ethnic nicknames like Clover and Sauerkraut. Good friends are such a gift.

5. Family- Family is the best, man. I am fortunate to have a great family and in-law family. They are so precious to me.

6. Being an SLP- Knowing what I know about pediatric feeding disorders and the potential long-term effects of prematurity on development and communication is not always a positive. However, it is nice to know things that can combat those potential negative long term effects and its also nice to be familiar with how to not force feed your baby and things like that.

7. People watching at the hospital- The hospital is an amazing place to people watch. I am always wondering what people's stories are and sometimes people are just so outgoing that they go ahead and tell me some of their life story as we ride the elevator to our prospective destinations.

8. Low Expectations=High Joy- This is a saying that someone told me a long time ago and I have found it to be so helpful. If you go into a situation trying to not have high expectations, or just setting your expectations low, chances are you will find more joy from the situation because your expectations have been exceeded. I know that may sound really cynical and pessimistic but it has helped me 'stay positive!':)

Hope.

Hope has become this mysterious, almost mythical thing to me. I hoped and hoped and prayed and prayed that Adah would not come early and that she would grow while still inside me. Adam did come early, even earlier than we thought she would and she was very small because she had not grown much after they noticed she had IUGR. I hoped and prayed that when Adah did come early that she would not have a very long NICU stay. Adah has now been in the NICU 5 1/2 weeks. I hoped and prayed one weekend that Adah would get to 3 lbs when she was at 2 lbs 15oz and she ended up loosing an ounce and not making it to 3 lbs for another week. I hoped and prayed that Adah would get to 1500 grams (a milestone for NICU babies) and she stayed at 1499 grams for 3 days. I no longer know how or what to pray for. It literally feels as if every time I have hoped or prayed for anything during this season, the opposite has happened or the thing I have hoped for has been excruciatingly slow in arriving. I am scared to hope but I am left with no other good options. It is either hope completely blindly and with building cynicism or despair and let myself go into the dark and stay there.

This is not to say that good things haven't happened. Here is just a small sample of the good things that have happened:
-Adah was born healthy apart from her small size (IUGR babies have a higher risk of being born with a syndrome, or being growth restricted due to some kind of infection and that was not the case with Adah)
- Adah has had a relatively uneventful NICU stay, meaning she hasn't had to have any surgeries or big procedures. She literally has just been growing in the presence of doctors and nurses (and in large part thanks to them).
-Adah's IUGR may never have been noticed if I hadn't already been going to a high-risk dr for something else. If IUGR goes undetected and the baby goes to full term, it has a higher risk of being still-born.
- I had no complications from my C-section which made it slightly easier to visit Adah every day during the first couple of weeks after her birth.
- I have benefited greatly from the love and support of my friends and family. I have never had a season of life in which I felt so uplifted and cared for by friends and family. I am very, very thankful for this.
- The NICU that Adah is in is wonderful and I trust all of the doctors, nurse practitioners and most of the nurses.

So, see, there are good things...its just those good things are things I never even thought to hope for. They are things that have just happened for the most part and made it a bit easier for the times that I hope for something and it doesn't happen. 

Home...

Backstory: Dustin and I had a beautiful baby girl on June 4th. She was early, like almost 8 weeks early and quite small (like the size of a baby at 26 weeks gestation). Her smallness was due to Intrauterine Growth Restriction (IUGR). If IUGR were a person, I would easily murder it and cut it up into tiny pieces and go to prison forever and never feel guilty about it. That is how much I hate IUGR. Having a preterm baby is complicated and traumatic enough. Having a beautiful preterm baby with a brilliant baby brain (that is normally developing and on track with her actual gestational age) trapped in a tiny body is frustrating. Watching my beautiful baby fight for every ounce she's gained and hearing person after person comment on how incredibly tiny she is is annoying. Knowing that my baby is essentially healthy (NICU terms healthy, meaning isn't on oxygen, stable vital signs, regulating temp, etc) but 'just needs to get fat' and then is not getting fat and is gaining weight at what feels like a glacial pace is mind numbingly difficult.

So that is currently where we are at right now. We are in the mind-numbingly difficult land where you get to wait and wait and wait and wait for your baby to come home. So, why not start a blog while I wait?