Journey to Parenthood

I want to be purposeful about journaling during this time in our lives as we watch our miracle micro preemie, Asher, continue to grow and thrive. I began this blog during my month of bed rest at the hospital while I was pregnant with Asher and his brother Titus. We continue to hope and trust the Lord for Asher's future. This blog begins with the story of how both of our boys came to be. They came about after many tears, many prayers, and many months of crushed hopes. On February 2, 2012, our boys Titus Bauer and Asher Mark were born at just 23 weeks and 2 days gestation. My water around Titus broke at 19 weeks, so his lungs were very underdeveloped. Titus lived 45 minutes and is now living a perfect life in heaven as he watches over his little brother Asher. Two and a half years later God redeemed our story of hurt with a precious full term baby brother for Asher. We are humbled by how the Lord has loved on us in our journey through parenthood.

Wednesday, November 7, 2012

Prematurity Awareness Month: What I Want You to Know







November is Prematurity Awareness Month. Last year in November I didn't know that about this month. I didn't know much at all about preemies, especially micro-preemies. Now, I know quite a bit, and I am passionate about these little miracles...mainly because the Lord blessed my husband and I with the privilege of raising one.

1 in 8 babies are born prematurely. The March of Dimes website says in 40% of those pregnancies, the cause is unknown. And I find this to be true among other preemie mom friends I have. Many have not gotten clear explanations from their doctors as to why this happened. And if they are like me...they may not dwell on that too much because it's hard to think about that. It's hard to think about what could have been done to make things different- if anything. For me, I was told I have an incompetent cervix. So, the pressure of 2 babies was too much for my cervix. And that's not something anyone could tell me until I got pregnant and tried to have a baby. I asked my doctor if this would have happened if I had had just one baby. She said yes, but later in the pregnancy. So, in the future, I would get a cerclage  (stitch to hold the cervix closed) and progesterone shots to prevent preterm labor. My cervix started thinning and that triggered contractions and labor. I was dilated to a 2 when I checked into the hospital at 19 weeks, and the doctor could see Titus' sack! (He was lower than Asher.) But then labor and contractions also are what change the cervix. Confusing. I'm just thankful they were able to stop contractions and labor for 4 more weeks. That in itself was a blessing from God considering protocol is not to admit a mom until the baby has reached viability (23 weeks). Had they not admitted me, monitored me, and administered meds calm my uterus, I would probably not have a son here on Earth to talk about.  God had His hand in it from the beginning. So I don't spend a lot of time on thinking about why this happened- at least, not as much as I used to. But I do wish an incompetent cervix was something that could be diagnosed before hand, and prevented. I'm sure many premature births happen due to the mother doing something that is not healthy for her body or the baby's. However, many mothers do unhealthy things and are blessed with a healthy baby regardless. And then there are many moms (most of the ones I know) who did everything they were supposed to do in pregnancy and still, they had a premature baby. There can be scientific explanations for some, and that does play a role. But, I believe that a healthy birth of any baby happens only by God's mercy and grace - alone. He determines when babies are born. We have a perceived control over this by thinking if we just do all the right things when we are pregnant, then we will get an uneventful pregnancy and healthy, full term babies. I also think there's just this perception of "that won't happen to me" because it seems fairly rare.  I knew probably one person that had had a micro- preemie (baby born under 1lb 12 oz, or 26 weeks gestation) before I had Asher and Titus. But now, because it's where I am in life...I know many many mothers with preemies and micro-preemies. In Psalms it says "But You are He who took me out of the womb...from my mother's womb, You have been my God." (Psalm 22: 9-10) So,  I believe God ultimately makes the decision over when babies are born, if they are born healthy, and if they live or not.

So, what do I want you to know about premature babies and their moms?  They often look and act like full term babies, and many "catch up" after 2 years old, developmentally. For some preemies, by the time they are toddlers, it is often hard to tell they had such a traumatic beginning. For others, they will have life long diseases or struggles from being born premature.  Preemies don't need to "build up their immune systems" as people often say about babies. I once agreed with that, but I've learned that when preemies get sick, it damages their already fragile lungs further. And sometimes a sickness can be life threatning.  So, they need to be protected, not exposed. They began life with a fragile immune system that needs time to be built up. So, when a preemie mom is super careful about who touches her baby, who's around her baby, and who has washed their hands it's not just because she is very cautious. It's not only because it may be her first and "everyone is super protective with their first baby". It's probably more so because she knows how fragile her baby's immune system is. And she's seen her baby in a very fragile state, and she wants more than anything to never see her baby like that again.

For the first months of her baby's life, she had to watch him or her from afar. The one person in the world who was supposed to have a front seat in taking care of her baby, had a back seat behind nurses, doctors, nurse practitioners, and respiratory therapists. She had to watch her baby fight and struggle, and she could do nothing to help. She watched her baby get iv after iv, some in her baby's head.  (Asher has a scar on his forehead from an IV burn he got when he was still under 2lbs. He had to get shots in his head to prevent it from causing more serious damage to the tissue there...all while we watched.) She watched breathing tubes and feeding tubes be put down her baby's throat while her baby gagged and struggled, and she's watched tape being torn off and replaced over and over again on her baby's delicate skin. Maybe she even saw her baby go down to surgery and come up afterwards in pain, and still...she watched from afar because her baby was too fragile to be comforted by her. She may have pumped milk for her baby, and while that feels good, it's nothing compared to the joy and bond that breastfeeding brings. If she wanted to bathe or hold her baby, she had to ask a nurse if that was ok. And then, she'd need help moving the baby with all the wires at tubes.  She most likely couldn't feed her baby either - at least, not at first. And even then, she had to ask. Everything her baby did was out of her control. And this is how she started her life with her new baby. It was the complete opposite of what she hoped for or imagined. And so with all she's been through, she is very committed to protecting her baby- as any mother is. She just is coming from a different perspective. Another mother might be protective in fear of what could happen if her baby got sick or hurt, this mother has seen what can happen when her baby is sick or hurt. She's seen her baby in pain and sick more than a mother ever should. So, it's just a different perspective.

And once a preemie mom and her baby are home together, out in the "real" world, she is probably trying to figure out how to come out of the trauma and "fog" of NICU life, into a more calm life with a baby at home. She wants more than anything to be "normal" but might be learning that may never come, at least in the way she might have thought or as quickly as she might have thought. And she may really want to blend in with other mommies and babies, but at the same time she may want people to recognize that she and her baby are different, unique and special. It's a confusing place to be sometimes...life post nicu, and her feelings may change moment to moment. She may want to forget the NICU days in some moments, and other moments she may want to remember. And I can't say this is true for all preemie moms, but I can say on some days, it is very true for me. But, I am incredibly BLESSED to be walking through this with an amazing husband, and we are surrounded by very supportive friends and family- though none have had a micro-preemie experience. So, we are all learning together. I am thankful they are so supportive and understanding, and are full of grace for me and all my emotions as my husband and I figure out how to nurture, love, advocate for and support our micro preemie miracle.

So for Prematurity Awareness Month, I just ask you do just that, be aware.  It's not always caused by something the mother did or didn't do. Preemie babies in the NICU don't always just need 'time to grow'. Most are fighting to breathe. They need their lungs to grow. They need to get off oxygen because every day on oxygen is another day they risk damaging their eyes.  They need to learn to eat and breathe at the same time- one of the hardest tasks for preemies. Parents are told very often some of the life saving measures that need to be taken could mean that deafness, blindness, cerebral palsy, or learning disabilities may come. They are faced with impossible decisions, and there are weeks they are doing that daily. These parents are operating daily in an extreme level of stress. Once their baby fights their way to the "feeder/grower" stage, only then can mom and dad take a deep breath and begin to think that maybe things will calm down. And driving to the NICU everyday is exhausting. It doesn't matter if it is 5 min from home or an hour. It's emotionally and physically exhausting to live your life between two places, never really feeling "at home".  Know that every single thing a preemie baby achieves is something to be celebrated because they didn't come by that milestone easily. There was difficult road before that milestone...there were probably many days of waiting. Waiting for a baby to grow into "a real baby"...the kind we are all used to seeing- the ones you could hold, play with, feed, and give baths to.  To any NICU parents reading this: it will get better, you will go home one day with your baby, and that day will come faster than you think. Hang in there. You are doing the best you can, don't feel bad for leaving...take breaks, spend time together, take care of yourselves! Your baby is in the best care possible! To any NICU doctors or nurses reading this: you are an incredible blessing to the babies and parents you take care of! The way in which you do your job, and love on babies and parents blesses them more than they can tell you. I wish I could have expressed this more to the wonderful doctors and nurses who took care of us and Asher.

Also, know that the preemie baby's battle often does not end when their NICU stay does, it just looks a little different. It may look like wearing oxygen at home, being tube fed and struggling with eating, going to multiple therapy and doctor appointments a month, or having outpatient surgeries and procedures. All those things are blessings compared to NICU life, but they are still hard things sometimes. It's hard to continually see your baby struggle with things that are supposed to come naturally and be easy. Just knowing and being aware of this blesses preemie moms out there, especially ones you don't know yet that you might meet. Knowing and being familiar with what having a preemie can mean could instantly make a preemie mom 100x more comfortable talking to you, and could help her feel not so isolated, alone, or different.

All babies are gifts and miracles from God. Preemies and micro preemies are some of His most beautiful creations He gives us to teach us many many things about life, and about ourselves. I'm thankful for my son and all the depth he's already given me. I'm thankful for his brother and all he's taught me and continues to teach me. I hate the pain Asher's been through, and the pain he continues to experience. But, I know the Lord loves him deeply as he loves me. And I know He has a plan for his life, and what we are experiencing is just refining us, giving us depth, and helping us to remember that our lives here are temporary, and there's nothing here we should hold too tightly to.



"Before I formed you in the womb, I knew you. Before you were born, I set you apart." Jeremiah 1:5 

Only God can take this....


                                                                ....and turn it into this.

We are SO blessed to have witnessed this miracle of His! 


I want to end with a portion of a blog I wrote not long after the boys were born about 9 months ago. 


"As we were singing a song at church last night...I had future images flash through my mind. Here's the chorus :

You take my mourning
And turn it into dancing
You take my weeping
And turn it into laughing

You bring restoration
You bring restoration.. To my soul

I had a vision of Asher dancing one day and laughing- what a sweet moment that will be!

" You have turned for me my mourning into dancing; you have loosed my sackcloth and clothed me with gladness, (Psalm 30:11 ESV) "





And here is our sweet boy laughing. One of the first things that popped in my head when he started laughing was this song. Oh how the Lord is taking my mourning and turning it into dancing, and He's taking my weeping and turning it into laughing. He is bringing restoration to my soul. 

video

Sorry it is sideways! I turned the camera while I was recording. It's a lot to hold the camera, and the baby, and make him laugh! :)  






7 comments:

  1. Blog lurker here, and fellow two time preemie mama. This is a wonderful post- sums up so many feelings that I could never put so well! I love seeing your precious boy's progress and I pray he stays so healthy in his "bubble" this season. I know well that isolation, but health is worth it! Thank you for sharing your words with us all!

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  2. Thank you for sharing this. I do believe God gave us micro preemies for a reason and they need to be protected.

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    1. Yes, He did! I hope you are enjoying being at home!! I love seeing pictures of Thein!

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  3. Robyn - I love this post! My husband, Ryan, and I have been following you all since Asher was born. We are friends on the Aars and have a two year old former preemie. Your post is so very perfect and I love it. It's amazing how I've felt so many of the exact same feelings and continue to thank the Lord for my miracle baby girl. You are such an amazing women and I am so blessed to have "meet" you.

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    1. Thank you so much for reading, following, and commenting. It's truly humbling and blessing to get a message like this!

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  4. Robyn, reading your posts makes me feel a breath of fresh air just knowing that there are other people who have gone through what i'm going through and have survived it! I'm currently at Children's Dallas now. I received your very sweet blanket and card. I emailed you a thank you as well. I found your email on your blog main page. Anyways, y'all are such an inspiration and your little guy such a fighter! I feel like i'm reading my own posts while reading yours. Chance, my son, was born on 11-19-12 at 25 weeks. We were transferred to Children's from Lewisville when he got NEC and then had his PDA surgery. We're still in the midst of the rollarcoaster but God has gotten us through this far. I love reading all your bible verses and comparisons to what you went through. Thank you! We live in Coppell, so we're not too far away! Here's a blog I started as well. Love, Ashley www.babychancecappelli.blogspot.com

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