Preemie Mamas, You Aren't Alone

This morning on Facebook I came across an article called
When Birthdays bring Fear: Birth Trauma and PTSD. I shared this article on my feed because lately there have been several women in my life who have shared with me that they too, relate to this experience. For the longest time I thought it was just me and I felt very alone in this. After reading the article and hearing feedback from friends who also identify with it, I have decided to share a journal entry I wrote last summer, right before the twins' birthday. I share this in hopes that others will realize they aren't alone, that this is a real thing and it's not something silly you can just "get over."

Saturday, July 11, 2015

On Tuesday our sweet miracle babies will be 11 years old. I don’t know where the time has gone. As the day approaches each year I have so many mixed emotions. Of course I am looking forward to celebrating the lives of these two incredible little people. They are indeed miracles and have grown from the tiny 3 pounders that seemed so fragile into smart, strong, fun people that I truly enjoy being around. I am so privileged that God chose me to be their mommy. Every year Wes and I give them a huge birthday extravaganza. This year they don’t want that. They want a simple party at home with family. That’s it.

The other part of their birthday isn’t something I like to talk about a lot. The circumstances surrounding their birth were traumatic  for Wes and me. Let’s be honest…the big birthday celebration is more for us than it is for them. It’s a distraction from all of the grief and sad memories associated with the trauma of their birth. I thought that through the years the flashbacks, anxiety and nightmares would go away. It’s been 11 years and they haven’t. What I have learned is that I have PTSD. It has taken me a while to come to terms with this, to admit it to myself and it is extremely difficult for me to tell other people about it. I’m not sure why I find it so difficult to talk about. Perhaps I feel like using a term like PTSD makes me sound overly dramatic or perhaps because it feels like there is something wrong with me…like I’m damaged. What I have come to understand is that their birth was traumatic. I almost died, they could have died, and the weeks and months after they were born we were literally fighting for our lives. This isn’t something I can just “get over.” Well-meaning people have said to me, “But everyone is alright now. You are all 3 healthy and you should think about how incredibly blessed you are and how good God is.” Yes, perhaps I should concentrate on the goodness of God and how He blessed our family. In fact, I do thank Him every single day for how He has worked in our lives and for the privilege of raising Sarah Grace and Jonah.

 Here’s the thing I didn’t understand until recently...PTSD is the result of trauma and we have wounds that haven’t healed. So often I think of PTSD as associated with soldiers coming back from battle, but we did fight a very real battle. A life and death battle. I don’t always know what is going to trigger a flashback. I can be walking along minding my own business and happy as I can be and then suddenly I smell something that takes me back to the hospital and I am there all over again, reliving the trauma all over again. Sometimes it is the sight of adorable baby shoes, a maternity top on a mannequin in a store, it comes right up and punches me in the gut and I’m stunned, trying to recover. It’s a dark place to go and I don’t want to be there, but I can’t always avoid those sights, sounds, smells, memories because I don’t always know what is going to be a trigger. Yesterday I was home minding my own business when I started smelling this smell like the NICU. I hadn’t been anywhere near a hospital and I wasn’t cleaning with chemicals so I’m not sure where it came from, but I had to light a candle to try to smell something different so that I wouldn’t go into a full on flashback. I am learning strategies to deal with this and sometimes I can keep myself in the present.

I hope that someday I can look at their baby pictures and not feel panic as fresh as if it had just happened. I hope that someday I can eat at Chick-fil-a and not feel nauseous as I remember that I ate at the one in the lobby of the hospital almost every day when they were in the NICU. I hope that someday I can complete their baby books and photo albums and not have a panic attack just from looking at ultrasound and baby pictures. I do have a lot of mommy guilt that these kids don’t have completed baby books. I have faith that someday all of these things will happen. I am not there YET, but someday I will be.

These are the things I know to be true:

1.             I can’t do this alone. The Holy Spirit will empower me, strengthen me, walk this out with me every step of the way and on the days that I can’t walk on my own, He will uphold me.
2.     .       I need my network of family and friends to support me. They may not understand completely and that’s ok. I just need to know they will be there for me, hold me and encourage me on the days when I feel stuck.
3.     .      My children don’t remember any of the trauma surrounding their birth and I thank God for that. They aren’t affected by these circumstances except for what they have been told. They know that they were born early and were fragile and we were very afraid. They know they are miracles and that we are so thankful God gave them to us. They know they were very sick and God grew them up to be strong, smart, big kids. They know they are loved – by us and most especially by God and that He has a purpose for their lives.
4.             Healing for me isn’t going to come overnight. I am making progress and some days are better than others. I am learning to put our time in the NICU into perspective. My week in ICU and their month in the NICU were certainly scary and traumatic – HOWEVER – it’s really only a one month period of time in the span of 11 years. Yes, there were other scary times and health challenges I faced, but in terms of the birth of the babies, we are talking about one month and then a couple of months that followed as Wes and I were scared that something would happen after we brought them home. Anyway, that’s a whole lot of good days compared to the 30+ really scary ones.
5.             I am not alone in how I feel. For one thing, my very best friend, partner, advocate and true love lived this with me. We have both been changed by this experience. You know that talk you have with your spouse where you say “If anything happens to me I want for you to get married again?” Yeah, that one. We had that talk right after they told me my body was shutting down and they weren’t sure they could fix me - just before they wheeled me to ICU. If I close my eyes, I can instantly be transported back to that room, him holding my hands and sitting on the edge of my bed. I meant every word of it. My point is, you don’t go through something like this and not come out changed. We grew closer to God and each other in those moments and learned not to take one moment for granted. In some ways I think Wes had it worse than me because there were points in time that I was so sick that I didn’t realize how bad things were. It was during those days that he held it together for both of us, driving back and forth between Americus and Columbus to make sure the babies and I were looked after.
6.             I am much stronger today because of what I have been through. I had lived with such fear my entire life. I was afraid to die. In those moments in my hospital room, when the doctors told me that they weren’t sure of anything but that there was a chance I could die, I wasn’t afraid. The one time I should have been afraid, I knew I was safe in Jesus and either he would heal me or he would take me to live with him. Either way, it was all going to be OK.
7.             God uses every experience for His glory. I know that all things work together for good for them that love God who are called according to His purpose. Some days I can’t see what that good is, but I do trust that God knows and He wastes nothing.
8.             My thoughts and plans are not His thoughts and plans. I am coming to terms with this and I know that not only do I not get to choose Plans A, B, C…I don’t even get to know what those plans are until God is ready to reveal it to me and chances are, He isn’t going to show me the plan anyway. I only get to see the next step, then the next, then the next. I am becoming OK with this although the control freak in me still freaks out a little bit with fear of the unknown.

I guess that’s all for now. I could go on and on about what I have learned and what I know to be true. I just needed to get some of these thoughts out of my head and into some sort of journal so I can process them…or maybe not. Maybe I just need them out of my head and to leave them alone without processing them. I just need for them not to be so much at the forefront of my mind. The counselor is helping me to see that I have unrealistic expectations of myself when it comes to healing from all of this. I spent years thinking that if I relived it enough I would be desensitized to it and it would go away. Instead, I sunk deeper and deeper into a dark place that I didn’t know how to get out of. It’s going to take some time to figure out how to deal with this and what to do with all of it. In some ways, that dark place is comfortable because I know what that feels like. I no longer remember my life before that. It will happen though, and those moments of grief will be like one snapshot in an entire book of photographs. I am clinging to that hope and praying that it happens sooner rather than later.

Long Time No Blog

It's been so long since I have written and posted.  I have started many entries, mostly to sort through my thoughts and feelings.  However, it has been way too long since I have written anything that is worth publishing.  Where does the time go?

We just finished celebrating the twins' 9th birthday.  I can't believe my sweet Prince and Princess are 9 years old!!  If you have read my blog much, you know this is a difficult time for me. I want to celebrate the blessings God has given with two healthy children, but I also struggle with remembering the circumstances of their birth and all we went through to get to this point.  This year was no different.  Hubby and I both struggled as we thought about the life and death stuff we have come through. 

You can read about their birth story Here and the follow up Here. 

We've come a long way, Baby!

 

Earlier this week I was talking to a friend who has had a difficult time lately with some health issues he has been facing.  He said that he has been struggling and asking God why and then he feels guilty because of the long life and the blessings God has already given Him.  This resonated with me because I have felt the same way.  I know I should be thankful for what I have.  I know that God has worked things out for His good and His greater purpose.  I know that I must sound like the spoiled little kid who wants things her way and wants them to come without a price.  I still struggle, but I would like to think that as I wrestle with the questions, I am growing through it.  God is big enough to handle my questions and I may never understand why, but when I ask those questions I like to think that God is drawing me closer to Him and asking me to just trust Him.   

 



I look forward to the day that July 14th comes and I am fully in the present and the promise that the future holds, not dwelling on hurts from the past.  However, it is from the past that I have learned what it truly means to trust in God's perfect plan. 

These miracles are truly a gift from God and they teach me so much about my relationship with God and who I want to be when I grow up

My Hope is Built

As I mentioned yesterday, this week my precious Prince and Princess are having a birthday.  This is a big week for them and they are so excited about all of the festivities.  Hubby and I on the otherhand, have mixed feelings about this week.  We are so blessed to have these precious miracles in our lives but the circumstances of their birth were not what we would have chosen.  The day they were born and the month that followed was the hardest thing I have ever been through and those memories are not so pleasant.  You can read what happened HERE.

 I usually work really hard to make their birthday and party such a huge deal that I don't have time to stop and deal with my emotions until the night after their party and then I collapse into an emotional meltdown.  It is exhausting to say the least and every year I think it will be different, that I will be able to deal differently, to be thankful instead of sorrowful and having my own little pity party.  This year feels different.  This year I feel as if God has been preparing my heart for weeks.  God has been sending scriptures across my path dealing with hope.  I thought it odd at first, why do I need words about hope?  I'm fine.  Aren't I?

The past few days I have had Jeremiah 29:11 rolling around in my head:
"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."

Then yesterday in worship, our new pastor preached about finding hope in despair.  When I read the title of his sermon I thought, "This isn't going to pertain to me.  I'm not in despar.  I'm fine."  He read from Hebrews about our hope being an anchor for the soul.  He then went on to tell a story about when his son was born and the complications his wife had with eclampsia...a story that was different yet very similar to my own.  Odd that he would tell this story this week.  God reminded me of the hope we had for our babies that were so tiny and sick and of the hope that I had that I would live through my illness to see my babies grow up. 

Our closing hymn, "My Hope is Built," just about did me in.  "On Christ the solid rock I stand, all other ground is sinking sand, all other ground is sinking sand, all other ground is sinking sand."  I was reminded of a story I read of a young seminarian who had been through a lot and was having a faith crisis.  He told his mentor that he felt like he was standing on the shore at the beach and the sand was washing out from underneath him.  I'll never forget his mentor's response.  The mentor said, "When you feel as if the sand underneath you is washing away, stand firm because under that sand there is a solid rock." 
I really wish I could remember the title and author of that book.  I just happened to pick it up at a book store and read that one excerpt before putting it back on the shelf.  At the time I read it, I wasn't ready to receive the message it offered, yet somehow it stayed with me.

All of this to say that I am listening to God's voice and relying on His Holy Spirit to get me through  guide me through this week.  "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."  Romans 15:13

A to Z, Sing With Me

Joyce, my blog friend and supplier of all things hodgepodge, has joined a challenge to do an A to Z blog, where your daily blog theme is based on that day's letter.  You can read what Joyce is doing here.  This reminded me of a story from when the twins were in the NICU.  We spent a month in the neo-natal intensive care unit (NICU) and there was not much we could do with the babies.  They needed to grow and to rest, but they also needed to hear our voices. 

Hubby told the babies stories, he told them about the Bermuda Triangle and other sci-fi stuff.  He also told them about all of the things he wanted to take them to do when they got older...trips to the zoo, the aquarium, the park, and all of the fun we would have together as a family.  I did a lot of praying, reading stories, and then there was the singing.  One of the ways God has talked to me through the years has been through song.  I love to sing and it was a great way to pass those hours of sitting there, waiting for feeding time when I could hold my babies.  Of course there were certain songs that were favorites, but I developed a routine, if you will, for how I sang to my babies.  I started with the letter A and went through the alphabet, singing all of the hymns and praise songs I could think of.  It went something like this:
A - Amazing Grace, As the Deer, Are Ye Able
B - Blessed Assurance, Because He Lives
C - Come Christians Join to Sing, Christ the Lord is Risen Today, Crown Him with Many Crowns
D - Do Lord
E - Every Time I Feel the Spirit
F - Fairest Lord Jesus
G - God Will Take Care of You, God is so Good, Great is Thy Faithfulness
H - His Eye is on the Sparrow, He Lives
I - In the Garden
J - Jesus Loves Me, Jesus Wants Me for a Sunbeam
K - Kumbaya
L - Love Lifted Me, Leaning on the Everlasting Arms
M - My Faith Looks Up to Thee
N - Nothing But the Blood
O - Old Rugged Cross, O For a Thousand Tongues to Sing, On Jordan's Stormy Banks
P - Pass It On
Q - (I'd skip it.  Never could figure out a Q song)
R - Rock of Ages
S - Seek Ye First, Spirit of the Living God, Sweet Sweet Spirit
T - Trust and Obey, There's Something About That Name
U - Up From the Grave He Arose
V - Victory in Jesus
W - What a Friend We Have in Jesus, Wonderful Words of Life
X - (another one I'd skip)
Y - Your Love O Lord, Reaches to the Heavens
Z - Marching to Zion (I fudged this one a little)

There were probably others, but these are the ones that came to mind.  It's amazing what you can think of when you have all of that time.

The other day I was rocking my nephew, Sweet Cheeks, to sleep for his nap.  It brought back memories of my sweet babies and I once again pulled the A to Z song list from my memory and began to sing.

The NICU Experience Part 2

I. am. exhausted! Words just can't describe, but after all of the birthday celebrations and parties, I feel like I've been hit by a truck. This is why I haven't been on here for a few days. I haven't been able to hold a cohesive thought. I still have my doubts, but as promised, I want to tell you about the tiny miracles God gave us and their start in this world.

These are two of the babies' nurses in the NICU.

I first held our babies when they were 8 days old. It was quite an overwhelming experience, as you can imagine, but no one can prepare you for what to expect in the NICU. There are all of these tiny babies in isolettes with tubes and wires coming from them and it is quite loud. There is a lot of beeping and machinery making noise. I was still in a wheelchair, not strong enough yet to walk on my own, so Hubby wheeled me up to the neo-natal floor and showed me the procedures he had been following the past week...signing in, washing up to our elbows, being buzzed through the doors...and then once we were in, I got such a warm welcome. The nurses all asked how I was feeling and said they had heard so much about me. On this day, the twins had different nurses. The first baby I met was Prince. His nurse was a man named Robert, who had a very strong Alabama accent. He handed me my baby and said, "Mama's here." He then proceeded to tell me about the nickname he had given my sweet prince in this deep twang and said, "Mama, he likes it when you rub his head like this. He's got all this loose skin like an old hound dog. See? He looks like an ol' hound dog and he likes it." After holding Prince for a few minutes and being totally overwhelmed by all of the tubes and how tiny he was, I was taken to the next bed to meet Princess. Princess' nurse handed me this tiny sweet girl and said, "We weren't sure if you were just going to call her by her first name or use her first and middle together, but I just have to tell you that we nurses have decided that her name is too pretty not to use the whole thing. So you have to use both names, we decided it for you." It is quite common in the south to use first and middle names for little girls, I had not decided yet what we'd call her. She was named after her great-great granny, who only used her middle name. Well, that settled it and she has been using both names ever since.

The NICU was a roller coaster ride. Things would seem to go great and we felt we could see progress and then Prince would have a set back and have to go back on oxygen. There was no manual to tell us how the NICU was supposed to work or how to talk to the docs when we had a question, it was just kind of a figure it out as you go. Before I had even arrived, Prince had an IV infiltration that burned his hand pretty badly. He had to have wound care in addition to being on oxygen and both of them were born without the sucking reflex and had feeding tubes. I had never been around any of this before.

That first day, I remember Hubby and I talking about how out of control we felt. How could two such in control people be so out of control? That was the question rolling around in my mind over and over.

Hubby and I lived at the Ronald McDonald House across the street from the hospital so we could come and go easily. As we entered the hospital each morning the receptionist downstairs would ask how I was doing and tell me she had been praying for our little family. As we left each night, she would ask how the babies were doing. We spent hours sitting with our babies, telling them stories, praying over them, I sang to them. To make the time go by, I would start with the letter A and go through the alphabet singing a hymn or praise song for every letter of the alphabet. Sometimes I'd have to get creative with it, but I did it. Prince's favorite song was "His Eye Is On The Sparrow." Princess liked "Jesus Wants Me for A Sunbeam." I called each night after the 3 a.m. feeding to see how they were doing. I remember once being put on hold and the hold music was "Only the Good Die Young." I was so exhausted and jumpy that I started laughing out loud...that was all I could do. I think the hardest thing was the not being in control. They were our children, but we had no control over anything in their little lives. The nurses told us if and when we could hold them, when to change their diapers, when we couldn't hold them to just let them rest...it was so hard. Then there was the bigger picture of not being in control. We didn't know what was going to happen, when we would be able to go home, what would life be like? Would our babies have any long-lasting effects? Would they even make it home? We were able to take the twins home on their one-month birthday. That month seemed like an eternity.

This is Hubby holding our babies on their first day home from the NICU.

Through all of this, God was there. My strength came because of the prayers other people were lifting on my behalf. I knew that God hadn't brought us through that far, not to bring us the rest of the way to bring our family home. Those days were the hardest of my life and I don't know why things happened the way they did. Each year as their birthday comes around, all of these feelings come back and it is difficult, but Hubby and I hold them a little tighter and think of how truly blessed we are.

In the last few weeks I have heard several pastors preach about how God allows things to happen in our lives and we don't always know why they happen. We go through those pits and come out of them just knowing that God uses it all for His purpose. I am so thankful that God gave us these miracle babies. I know that He was truly in charge and that He never left us while we went through this time. God truly does perform miracles in ordinary people still today.

My Miracle Babies ~ Part 1

Today my miracle babies turned 6. Happy birthday to my dear Prince and Princess. It is amazing to think of how far they have come...how far we all have come. I will admit that their birthday is not necessarily a happy time for me. I try so hard to make their day special and as long as I am busy and not thinking about the tough time we had when they were born, I do well. It usually hits me at the end of the day after they have gone to bed and all is quiet. Don't get me wrong, I am so thankful for the blessings God has given me and I know that it all ends happily, it's just that I have a lot of scars that haven't yet healed.

We all deal differently. Hubby and I hug our children a little tighter and tear up easier as we remember the struggles and thank God for our little family. My mom has a tradition she started when the twins were 2. She has always made it a point to spend time with them on their actual birthday, even though their party is usually not on the real day. This afternoon was no different. She came over with a small gift and a cupcake for each of them. She also brought her little Grandma's Brag Books from when they were born. Every year on their birthday, she sits with my children individually and tells them all about the day they were born and how she first met them. She shows them pictures from their first days and of her and my dad holding them that first day they were able in the NICU. It is so precious to see this interaction between my mom and my children.

Six years ago today, we were quite surprised when our twins decided to make their appearance into this world 7 weeks early. Nothing about their arrival was how we'd planned and it all went really quickly. Princess was born after about 30 minutes of labor. Prince, however, was not especially cooperative. He was transverse and the doctors couldn't turn him. His heart rate began to drop so I had an emergency c-section with him. Yes, I gave birth both ways with them. I don't do anything the easy way. The twins were sent to a Neo-natal Intensive Care Unit (NICU) just over an hour away. Due to the circumstances of their birth, I was not able to hold the babies before they were transported. The transport team brought the babies in their isolettes into my room, and I was able to touch them but I was in such a fog from the drugs that I don't remember much of it.

The days that followed were pure hell. Hubby, my parents, and his parents were travelling back and forth from my hospital to the twins in the NICU. My parents and sister were the first family members able to hold my babies and they took pictures to bring to me. The day after the twins were born, my body began to shut down. I had HELLP syndrome and my liver and kidneys were losing function. I was diagnosed with acute renal failure and was told that I would be moved to ICU. Let me stop and say at this point that I had always been a very fearful person. I struggled for many years with anxiety and unfounded fears. I tell you this because it is an important part of my testimony. I was dying, my organs were shutting down. I was aware of this, but I am not sure if I knew really how serious it was, I think I was too sick to be fully aware. However, I knew I might die. The thing was, I wasn't afraid. I suddenly realized that all of those years of fear were unnecessary. All of those years the root of my fear was that I might die and now here I was so close to death and I wasn't afraid. I knew where I would go, and I was at peace with it. I was sad that I might not see my children grow up, sad that I wouldn't experience all of those firsts, but I wasn't afraid. This was a turning point for me. I realized that I have nothing to be afraid of. Those days I was in ICU and we were waiting for my kidney levels to come down and normalize, I felt the prayers people were sending up. I could feel the love of all of those who were praying for me and I felt lifted up. It's really hard to explain if you have never experienced this, but I was aware that there were people praying for me that I didn't even know. As Hubby would enter and leave the hospital, both where I was and where the twins were, hospital staff would say, "Aren't you the dad of the new twins? We are praying for your new family. We are praying for your wife." God used the encouragement of these people we didn't even know to give us hope. After 8 days in the hospital, I was finally discharged. I was going to meet my babies and get to hold them.

Stay tuned for Part 2 of this story, The NICU Experience.

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