Friday, September 16, 2016

It's Not Your Fault

Mira came four days after my water broke prematurely (ironically, it was late night on July 4th, Independence Day). And, to date, we're still not sure why it broke or what caused it. There are a number of reasons that a mom goes into early labor - from infections to stress and overexertion. Heck, I was even told that something as random and abstract as changes in atmospheric pressure can lead to pre-term birth.

From the beginning, Mira has always been determined to be here. She somehow found her way into my uterus when I'd always been told that it would be difficult, if not impossible, for that to happen. And around my 18th week, I had surgery to "sew her in" (it's called a cerclage) because my cervix was too short to hold to term. By the time I had the surgery, she was damn near on her way out and after I was put on a light form of bed rest and told to take it easy (read: sit your ass down somewhere Kim!) All that coupled with the fact that on every sonogram, except one, Mira was always face down, head down toward the exit. Seems like she was always ready for her debut. I thank God that she waited until after 24 weeks when babies are typically considered viable.

But, all of this didn't stop me from racking my brain during the days leading up to her birth about what I could have done to cause her to come early. Did I not rest enough? Did I work too much? Not get enough sleep? Stress about home life too much? Should I not have taken that shopping trip to the San Marcos outlets? Was it too hot in my friend's house where I'd spent the 4th? Or did I let that infection go on too long before I called my doctor? It broke my heart to think I'd done something to put my baby in harm's way.

Fast forward to today. At the place where I take the puppies for their haircuts, there's a young man who cuts Coco's hair. He loves her, she loves him and he loves us both. He'd been asking the front desk ladies about me and the baby for the past few weeks. So I saw him today. He gave me a hug and the first words out of his mouth were "It's not your fault!" I was so stunned. He went on to tell me that he has a friend with three kids, two of which were preemies. And her doctors were so clear that there's nothing she did to cause her babies to come early. That sometimes, it just happens. And, in that moment, I was freed from something that I didn't even know I still held on to. It would have been nice to have those doctors and not the hot mess parade of characters at my hospital who, everyday, were trying to pin everything from diabetes to hypertension on me as an explanation for how I got there.

Truth is, no matter all the tests I'm sure I was charged for while in the hospital, we'll never know. And I'm actually ok with that. At this point, it's moot. She's here, however she got here, and I wouldn't have it any other way. To every mom out there who might be beating herself up about the "why's" and "what-ifs" of having a baby before time, it's not your fault. Everyone has a story and a start. And that's all ultimately determined by God. So embrace it and be present so you can tell your baby the awesome and unique story of how their lives began.

Thanks for your support and prayers.

Our first time doing "Kangaroo Care" - skin-to-skin interaction between parents and baby. I cried...DUH! I think here she was a little over 2 pounds. 

Mira shouting "Hallelujah" when she was finally able to get that CPAP off (see above picture for what the CPAP looks like).



Sunday, September 11, 2016

The Choice to Parent

Today I was told by one of the nurses that I get an "A+ for attendance" and thumbs up for being so involved with Mira's care. I could pat myself on the back about what a great mom I am that I have seen Mira every single day since she's been born (minus three days when I went back in the hospital). And give parents who haven't an F. Or I could credit my smarts for my ability to engage with the doctors and nurses when it comes to decisions about my baby's health.

But then that would be giving myself all the credit and God none. And for taking my blessings for granted. I am blessed that at the beginning of the year God led me to quit my job to freelance - Mira unforeseen. And that's caused me to have a more flexible schedule than most people. Or that I have a car to get back and forth. Or gas money. Or I live 20 minutes away. Or a great support system who also visit Mira. Or that I don't have other small children at home. Or have been taught to ask questions until I understand. Or that I have no problem questioning authority. These might seem simple but are real issues. I got a reality check when I overheard a mom say that she would have to come back to visit her twins preemies in a couple weeks when she got money to ride the bus to the hospital. It broke my heart.

Pile all these things on and parenting a baby in the NICU can really be a challenge. Through this experience, I've learned that half the battle with parenting is just showing up. Being present. That it really is a choice. And not always an easy one. While I'm lucky enough to show up everyday, I also admire the mom who's baby is next to Mira who calls at least once every couple hours to check in on her baby during each of my visits. It seems like she's moving and generally has life happening caring for her other children. But her concern shows and she's making her presence known to the care team. Even if you have no clue what to say to the doctors, nurses or your baby, be present and proactive.

It's easy to feel disconnected from your baby when it's in an incubator and you feel like the nurses have a better handle on caring for them than you. It's also easy to assume your baby needs more from the medical staff than you. That couldn't be further from the truth. Just showing up, talking, touching, checking in, calling, caring can make a difference. And if there are times where you have to choose what's going on outside the NICU over parenting your preemie, don't let the guilt consume you.

I think I visit Mira so much because, the truth is, I don't want to miss anything. I want to be the one to tell the story of her when she gets old enough to want to hear it. I want her to know when she started wearing clothes or when she started drinking from a bottle or about her growth and some of the ups and downs she had at the beginning of her life. I want to paint a full picture for her, from the time she was conceived and how she came into this world. I want to be able to fill in all the gaps for her until she has memories of her own.

Each day I make it to see Mira is a day that I'm making a choice. And if there is a time that I am not able to see her, my call to check in or sending her love from wherever I am will be no worse a choice. But just as long as I'm present, then I'm doing my best. And I thank God for all the small obstacles he's cleared out of the way of me being able to parent Mira and develop a beautiful bond with her from the beginning.

Thanks for your prayers and support.

One of my favorite pictures. We both looked pretty smitten with each other. 

Caption this: "I was counting sheep on my fingers and accidentally dozed off!"

Mira is pretty much the most stylish baby in the NICU! #PreemieGoals



Wednesday, September 7, 2016

Pressing the Reset Button

The last couple days have been a bit rollercoaster-y. From on the inside and the outside of the NICU. As you might recall, I asked God for some movement for Mira. And almost as soon as I hit publish on the blog, I called and was told that she had been moved to the "B" side. WOO HOO, right? Well...as soon as I thanked God for the movement, my mom-stincts told me that she's not ready yet. Earlier that day, I'd had a conversation with the doctor that the hole in Mira's heart is giving her some breathing and weight gain issues. The fluid in her lungs I'd discovered the other day is actually a by-product of the hole and has caused her little heart to enlarge because it's working too hard. That she might have to have surgery to fix the hole. She also has a very common hernia in her groin which will have to be remedied with a minor surgery before she leaves.

So, I walked away from the visit feeling a little deflated. Mostly because it feels like we had taken three steps forward then two steps back. So you can imagine that I was surprised at the fact that they'd moved her, with her heart and breathing issues, over to the side where babies need a little less attention. Immediately, I said "Be careful what you ask for Kim." When I visited her, I was having some trepidation because her oxygen levels were still not staying stable and she was breathing very quickly. Like all the other times, I asked God to handle it, spent time with her and went home.

Later that night, my mama visited Mira after work and just so happened to be there when the doctor came in around 4 a.m. to check on her. He had been reviewing her chart and x-rays and was concerned about her heart. He made some tweaks to her meds, ordered her to be moved back over the "A" side in the morning and vowed to talk to her care team to come up with a plan for moving forward. It all was the perfect lesson from God, a smack down if you will. I could hear his voice saying, "Do you want her to move or do you want her to move when she's ready?"

Since then, we've had constant conversations, millions of questions and daily check-ins with the doctors on her condition, their approach to treating her with the hope of avoiding surgery and the goal of resetting her back to where she was before this issue cropped up.

Meanwhile, outside of the NICU, I continue to struggle with constantly swelling ankles and blood pressure issues - both that developed after Mira's birth. Although I have a family history of blood pressure, I've never had it or taken medicine for it. So to accept an actual diagnosis and medicine has been hard for me. But after today's doctor's appointment, I just need to shut up, take the meds and get on with it. Plus, when you have a baby in the NICU, it's hard to actually let your body rest after having a baby because of the constant need to shuttle back and forth to the NICU from day one. So I'm trying to remember that my body is still recovering from giving birth.

Overall, it looks like both Mira and I are hitting the reset button. She's trying to get back to the point where she has dry lungs and can try bottle feeding and weening off oxygen again. And mommy is getting her head back in the game and (reluctantly) continuing on those blood press meds. With my need to advocate for Mira's care around this new issue, I got my steam back. There's nothing like needing to fight for your baby that puts the wind back in your sails. Perhaps I just needed a few minutes to regroup and prepare for the last leg of our time in the NICU. And I also understand that sometimes when we're going too fast and things are a little out of control, God pulls us back to square one in order for us to be able to move forward the right way.

Today, my little baby sweetness is 35 weeks and Friday she turns two months old (side note: I have no damn clue how to count her age. She turned eight weeks last Friday but was born on July 8 so September 8 seems to be officially when she turns two months. At this point, I'll just celebrate both since she deserves all the celebration she can get).

Thanks for your prayers and support.

The day that Mira was completely off her oxygen (she only has a feeding tube in her nose)

Oh happy day! Mira was thrilled to be off her oxygen. We are praying for her to get back here and go even further until she's home. 

Monday, September 5, 2016

The NICU Shuffle

Since her birth, Mira has been in the same bed space. On the "A" side, in the middle of the room on the left. Meanwhile, she's had at least 10 little "friends" come and go during her eight weeks there. And each time one of them leaves, it makes me feel some kinda way. Truth is, it makes me jealous. Granted, I don't know why or for how long those other babies need to be in the NICU, whether they are going home or just to the "B" side or how well or not they are. All I know is they are making moves and we are still in bed space 22.

We probably have about six more weeks to go because Mira's recent setback means she needs to pace herself a bit. And, truth is, I'm starting to lose my steam. I can drive to the hospital, park and walk to the NICU with my eyes closed. I can count three minutes in my head without using the timer as I scrub my arms from fingertip to elbow. Everybody knows my name and I know theirs. I know their schedules and half of their stories. My arms are starting to get intolerant of the scrub soap. And I've even stopped pumping as much now that she's on all formula. Feels like there's no use stressing myself out for a few drops when I could be at the hospital caring for her instead.

Don't get me wrong, I love seeing Mira everyday (lately, it's been twice a day). Once I'm there, it's heaven. Holding her in my arms is the best thing on earth and she really is the sweetest baby. But getting up the energy to go through the process of getting there is wearing me down. Add that on top of the fact that I haven't worked in two months and money is getting lower than I'd like, and the anxiety of wanting her to come home hits me hard. I'm having to say double the prayers these days to keep things together, so this blog has really helped.

I'm keeping things in perspective these days by trying to look at all the ups and downs as a part of the journey. From the minute I knew she'd be a preemie, I viewed this as the longest car ride home ever with a pit stop in the NICU. And for the most part, I've taken a hands off approach in terms of trying to do anything more than just be there for her and be her mom-vocate. I don't rush her nor expect her to go faster than she can and just try to roll with the punches. And we've had a million important milestones to celebrate which keeps me feeling like we're moving in the right direction. So when I see other babies rolling out of her room, I try to remind myself that we are all there for different reasons and seasons and it's just their time to move on.

I know these are not things I can control. And I'm not even trying to as is my nature. Rather they are things that I need to endure. So that's what I'm asking God for these days - the strength and energy to endure and to keep the pace of the situation. And I'd appreciate you praying the same for me. Because now that I'm a mom, I know that slowing down isn't an option. It could mean the difference between picking up on a problem with Mira and not.

So, this week, Mira's room is full again. And no matter how things shuffle around, I am trusting God for favor that we will one day soon leave bed space 22 for our next adventure. And that he will give me the grace and strength for whatever challenges and triumphs await us there.

Thanks for your prayers and support.

Meet me at bedspace 22...it's going DOWN! I just love this little Strawberry Shortcake blanket. 

This is Mira's drawer full of books. I can be found beside her bed every night, reading her any one of these jewels. Thanks to everyone who has contributed to her little library.

Sunday, September 4, 2016

Child Support

An old friend visited Mira the other day. And I was touched. But, these days, that's actually not such a rare feeling. And THAT'S touching. When most people hear the words "child support," I'm sure it brings up visions of division, mandates and general negativity. But, for me, I wouldn't be eight weeks in and of sound mind if not for "child support." That is, the love, prayers and help from everyone (literally EVERYONE) I've come in contact with.

As a woman who's lived most of my life for myself and by myself, asking for and accepting help has been a challenge. It has always humbled me when someone steps up and does something for me unsolicited and unexpected. So it goes without saying that all the love God has heaped upon me through other people feels overwhelming and surreal.

I have dozens of "child support" stories from the very beginning. Here are just a few of the most touching ones:
  • I have family members who work in the NICU (one's a nurse and one is a respiratory therapist). The support and information they provided in the days before I had Mira proved to be calming, perspective changing and gave me a peace of mind. 
  • A couple days after I was discharged from the hospital, I visited Mira. I walked into her room where I met a nurse I hadn't seen before. She told me that she helped deliver Mira and that "your baby chose me and I knew I had to take care of her." She told me that she had requested to be Mira's primary nurse and, whenever she worked, would be taking care of Mira until she goes home. 
  • I read to Mira every night. And, whenever possible, I insert her name into the stories. My mama heard me doing this one night and took it upon herself to get books made that included Mira as part of the story. So now I get to read books where Mira is the main character and it's just beautiful. 
  • A woman at the hospital delivered an edible arrangement to my room in the days before I had Mira. From that point, every time I see her, she gives me encouragement, hugs and assistance with navigating the financial components of my situation. 
  • I ended up back in the hospital a few days after Mira was born. During that time, I wasn't able to see Mira. When I returned after being discharged, everyone in the NICU knew I was sick and welcomed me back, asked how I was doing and told me they took care of my baby while I was away. Her main nurse even read books to her every night I was gone because she knew I'd want her to have a bedtime story. And to this day, every nurse who's ever cared for her, somehow drops by her bed on their shift to see how she's doing. 
  • All the testimonies - from strangers to people I know. From the woman on the phone at the insurance company to people close to me that I'd never known had NICU stories. Every single one of them has made me feel encouraged, calm and not alone.
  • I have a beautiful group of friends and a great family. Every single person has stepped up with prayers, gifts, food, texts, calls and the list of humbling acts of kindness goes on. The thing that has touched me most are the prayers. We can feel them all.
I pray that you have a support system as strong and wonderful as I have discovered mine to be. And if you find yourself alone, know that everyone in the NICU is cheering for you. Partner with them in the care of your child because their first priority is to see your baby healthy and heading home.

Another thing - don't keep your situation to yourself. The amount of care and the call for prayers that people put out when they know you have a baby in the NICU is unreal, touching and very much needed to get you through the tough times.

Thanks for your prayers and support.


My biggest support. Couldn't do any of this without my mama!

Cool books that mama had made for Mira and such a fun story. She got them from lostmy.name (that's the name of the website). 


Helpless

The night after Mira was born, I couldn't sleep. I had so many things going through my mind and I was reeling a little from how my life had changed overnight. As I lay awake, I decided to go down to visit her in the NICU. Plus, I needed to get up and walk around to help begin the healing process for my C-section.

As I walked very slowly to the NICU around midnight, I saw a mom being wheeled out of labor and delivery with her baby in her arms. I turned to congratulate her and as I turned back to continue on my journey, I nearly collapsed into tears. I gripped the hand rail and sobbed all the way to the NICU door, as I cried out to God "I can't hold my baby, I can't care for her, I can't do anything for her." I just felt helpless. And, as I've now learned, helpless is the worst feeling in the world for a mother.

By the time I made it to the door of the NICU, I had gotten myself together but still felt sad. What I didn't know is that God had a surprise in store for me behind those doors. When I walked in, Mira's nurse informed me that she was monitoring her vitals and if all still looked good in a couple hours that she would be feeding her milk for the first time. She then went on to say, "If you're still here, do you want to feed her?" My mind was blown at the thought of feeding my baby. I mean how serendipitous that I was in the NICU at the exact time that she would be eating for the first time. A couple hours passed and I was actually able to get some sleep next to her bedside. When it was time to feed Mira, the nurse blew my mind again by asking, "Do you want to change her diaper first?" Of course, the tears came. I cried as I changed her diaper and then fed her 1mL of milk through her tube via a syringe.

For every mother or father out there who is feeling helpless, believe me when I say that you can still parent your baby through the holes of their incubator. I know it might seem like an impossibility but, as God taught me one late night in the NICU, every little bit counts. Over these past eight weeks, I've learned parenting through presence is more than enough. Just because they are not physically with you, they still need all the things a baby needs. My advice is to get into a routine - I found out when the nurse typically changes her diaper or does her "cares" (the assessment done at each shift change) and made that my typical visiting time. That way, I can create a routine for Mira and also make sure that I am able to do some of the things for her that I'd be doing if she was home with me. Don't let the feelings of helplessness keep you from doing what comes natural. Every touch and encounter makes a difference.

Thanks for your prayers and support.


Mira before being fed for the first time.

Me holding Mira for the first time.