I know I've mentioned more than once that life has been busy for us lately. If I'm not taking Samuel to therapy, then I'm running errands, calling insurance companies, filing paperwork, or doing housework. There is not enough time in the day and I couldn't be happier about it. For the first time since Samuel was born, I'm back to being productive. I'm consistently making something other than Hamburger Helper (yuck!) for dinner every night. My house is clean. The laundry is done. The beds are made.
Several months ago, I took a moment to reflect and was surprised to find that the 'cloud' had been lifted from my head. I could fully appreciate that the skies were blue, the sun was shining, and that there WAS life outside of our three bedroom house.
I didn't recognize the cloud for what it was until it was gone.
Looking back, I realize that I felt a significant difference in myself around our tenth week in the NICU. It was noticeable enough for my mom to ask me if I was dealing with postpartum depression. I was extremely stressed and worried...but depressed? No, not me. I've always thought of myself as the strong, happy type of person. I thought depression was a sign of someone not relying enough on God. And I felt like relying on God was the ONLY thing I was doing.
I never assumed that life would become easy or normal once we came home. I was prepared for the long road of therapies, doctors appointments, eating issues, and disabilities that micropreemies often face their first years. What I wasn't prepared for was the constant stress, worry, lack of sleep, and isolation that came with it.
Several months after we were home, I took myself to the doctor for a routine appointment. She asked me if I was anxious (yes), tired (yes), stressed (yes.) I described what we were dealing with....everything from a noisy monitor and oxygen concentrator, to worries about his future, to feeding every three hours around the clock, to RSV isolation, and so on. She told me that because of those very issues, over 55 percent of NICU parents experience depression. She offered to prescribe something to help.
"That's not me. I'm not depressed. Just sooooooo tired." I certainly wasn't going to take medicine.
But it didn't get better. Michael and I struggled....really struggled those first few months. It seemed to take us ages to get into a routine. We really had to get to know one another again after spending so many months living apart. It was hard.
Then, many of our friends became pregnant...each announcement doing serious damage to my already crumbling world. I remember rocking Samuel one night after a couple in our community group announced their pregnancy. I was angry at Michael for not warning me (he already knew) and angry at myself for not feeling happy for our friends. I sat in the dark room holding Samuel, bawling my eyes out. I remember how he woke up and looked at me and began crying too. It was sweet, but his perceptiveness startled me into getting my act together.
It took some time, but things did improve. By January, I felt happy again...but I still didn't feel like myself. A few months later, I dyed and cut my hair because it seemed ridiculous that I didn't LOOK as changed as I felt.
I took another step forward in April, when I decided to give up all the worrying and let God take care of Samuel's future (as if He wasn't in control of it already, right?)
Then, when Samuel took his first steps, my world turned around completely. A huge weight was taken from me. I knew he would walk. I didn't realize that I had been holding my breath for 15 months waiting for that very moment.
And when I recently reflected on how good life is, how far we have come, and how blessed we are - I was overwhelmed. We were standing in church singing the song that I wrote for my Thanksgiving post, and just couldn't stem the flow of tears. How great our God is to have brought us so far! How great this life is! How beautiful my family is!
It's hard to admit that it's taken me such a long time to get back to normal. It's hard to not feel that those months were wasted months. But I have to believe that some good has come from it. Through our experience with Samuel, I have developed a heart for parents of special needs children...and if such a great percentage of NICU parents do deal with depression, I have gained precious insight by experiencing it myself.
And now I wonder, what can be done to help? I was never approached by a counselor, social worker, or chaplain who offered to talk through things with me during our NICU stay. Not that I blame the hospital for that...their job was to take care of Samuel (and they did that remarkably well!) I just wonder if there is something more that can be done for the parents. For those other micropreemie parents out there who follow this blog: were you approached or 'checked on' during your NICU stay?
I hope that one day I can find a way to put these experiences to use.
I love this post! And I also appreciate your honesty. I, foolishly, thought that things will finally start feeling “normal” after Christiaan was home. But, as you know, that was the toughest part. When Christiaan was home for about a month I realised that the sadness I felt was not just sadness, it was depression. I cried far too much and the sadness would feel like a physical pain. I remember thinking that even if I can get to the point to accept what happened I will never be able to feel really happy again. Like you, I always believed that if you trust God enough, you will never develop depression. But I did. I also wished that I could talk to a counsellor during that time.
ReplyDeleteNow I also feel happy again. I still have my off days when I feel anxious about what the future may bring, but I guess that is something that never changes for a micro-preemie mom.
I can just hope and pray.
Ps - I love your blog!
What a heartfelt post - thank you for sharing your experiences and feelings. I am a social worker myself and was completely surprised that our NICU didn't have a social worker assigned to it. It is such a traumatic experience for families that I do think that there should be someone "checking in" with the parents to make sure they are ok. After all, the state of mind of the parents can have a direct impact on their babies. I had one nurse who suggested I look online for support groups which was helpful but I do think I was looking for more. But I didn't expect the nurses to be doing that since i wanted them to focus on Veronica.
ReplyDeleteThanks again for sharing. You are a gifted writer.
I cried reading this post because I can relate to so much of it. I've read that up to 76% of NICU parents suffer from PTSD and/or some form of depression. No one came to talk to me either. Also, so many friends ask how the babies were doing, but very few asked how I was doing. I feel "normal" again finally too. It has taken a long time. How can you possibly feel "normal" when you are on an around the clock every 3 hour feeding schedule? Isn't it amazing to look back and reflect on how far our micro-preemies have come?
ReplyDeleteThank you for sharing your feelings. I can relate to many of your heartfelt words. My daughter Natalie was born at 24w 4d on April 6, 2011. Our world came crashing down. During our NICU stay, we were repeatedly approached by our social worker, a psychologist, nurses, and a nurse manager. We met with the psychologist weekly, sometimes daily. It was difficult for my husband and me but it was much needed to express our emotions. My OBGYN followed up with me several times and wanted to prescribe me medication for depression. I was resistant because I don't find myself to be "that person" on meds. However, over time I realized I could not control it all by myself and followed her suggestion. We have been incredibly blessed with Natalie's outcome. She is 8 months actual and 4.5 corrected. She amazes us everyday. We still have a long way to go but I am not as scared. Well, maybe a little still. I am currently dealing with different emotions...lots of pregnancy announcements from close friends at the moment. I can relate to how you felt because I feel surrounded and trapped by everyone's bliss. I am just trying to remind myself that we have so much to be blessed with and look forward to in life. Hopefully one day I can carry another child to full-term.
ReplyDeleteI still don't feel back to "normal"... but I know that I'll survive (which is half the battle!).
ReplyDeleteThanks for the post! I was checked on by someone from the support family network...but didn't have a great experience. She wanted to scrapbook with me all the time and acted like we were on a Disney vacation. I needed someone to acknowlege the gravity of the situation while being there to listen and provide support. We did have some truly amazing nurses who allowed me to cry on there soldiers. I am not sure what normal is anymore, but I am loving my sweet boys and realize that our life is a gift.
ReplyDeleteHi! I stumbled onto your blog tonight and have loved reading about your journey with Samuel. Our son was born at 32 weeks and though our journey in the NICU was 4 weeks, I had the same cloud you did. My doc gave me the same stats when she came to see me in my son's room and saw me crying for the third time that morning over a hole I had made in my breast pump tubing. I took the medicine and I think it eventually evened me out emotionally but I think the cloud remained for sometime. My husband and I rarely talked about our experience in the NICU (even though it was full of amazing doctors and nurses who provided the greatest care we could imagine). I ran into one of our NICU nurses about a month ago. We were talking about all of it and I had said we still really don't talk about it. She said "Oh you have to talk about it. You have to tell M he was the bravest baby in the NICU and how tough he was." I think it hit me like a ton of bricks: I had been looking at it all wrong, only thinking about the RSV scares, the inability to hold your baby when you want, watching other mommas take their babies home, etc. I came home and noticed all pictures of M were after we got home, not one pic from the day he was born or at any point in the NICU. I quickly printed some and got them in frames. We talk about it a lot more and I think it has been healing. I too wonder about support for parents while in the NICU, I have reached out to anyone I know that has had a premie this year. It is amazing how similar the feelings are. I hope Samuel continues with his amazing progress. What a tough and brave boy he is!!
ReplyDeleteYour You Tube video of Samuel's first year led me to your blog. It was almost identical to my journey as a new mom of a micro-preemie and my son's battle to be in our arms. Ryker was born at 24 weeks, weighing 1 pound 2 ounces and 11 inches long. As I watched, tears streamed as I was recalling the milestones and photographs of Ryker at each stage documented in the video. Some of the pictures were incredibly identical. Your bright smile and motherly glow touched me as I remember so vividly the radiant joy that filled me in those treasured moments of Ryker's firsts! The moments that gave me the strength to press on. He spent 229 days in the NICU, My husband had a nervous break down after we brought Ryker home, and I was facing rsv isolation, therapies, and court appearances to negotiate our divorce as my husband lost himself and mental capacity through it all. A NICU stay of any length takes it toll on everyone. I had been impressively courageous and positive even as Ryker clung to the sharpest, finest edge of life countless times in the 7.5 months of hospitalization. It wasn't until Ryker's bowel perforation at 3 months old that I got any personal support from a hospital counselor who's office was just 20 feet from the NICU doors. Doctors were expecting Ryker to come home in about 6 weeks, then boom... A life threatening condition (NEC), and a guaranteed three more months in the NICU. At my first session, the counselor described me as having distinct similarities to a prisoner of war. As I reflected, I was dumbfounded that I was not made aware of this support upon giving birth at 24 weeks. Every doc and every nurse is well aware of the battle to come. I asked, "Why wait until captured by the war?". I went on meds after four months in the NICU. Ryker is now 8! Since leaving the NICU he only had one 4 day hospitalization for a lung infection at age 2. The isolation works! I've always said the only thing missing from the amazing hospital care was "parent care."I've always wanted to "do something" yet my time was so filled and remained stressful. And now I was a single mom. Now, remarried to an amazing man that loves Ryker so much, expecting a baby in September, and living God's blessings! If you ever want to talk, here is my info! Thanks for sharing your story!!!! Tana Reneau. 360-961-5984. Email: msperk98@aol.com
ReplyDeleteI have been catching up on your blog tonight. This post brought me to tears, still crying. So many people don't know what happens next, after the NICU. I have been really struggling lately to be "happy". Our normal is never coming back. What we thought would be for Owen, will never be. Its a hard reality. Knowing that your life will never be free from doctors, hospitals, and worry is extremely difficult. Im not even sure how to change my definition of "normal" but it has to be done to survive and be the best parents we can for our micro-preemies. Thank you so much for sharing you feelings :)
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