Brother & Sister

Ok. Ok. I know I haven't blogged lately. Honestly, these past couple weeks, I have just been soaking it in. Loving the time with both my miracle babies. I am so thankful for the good days.

I remember when we were in the NICU, thanking God for Beckett's good days...so I could have the energy to help and be there for other parents in the NICU with us. And now...it just makes my heart so heavy to see so many others still have to endure the "storms" that come with the NICU journey...and even after coming home. But I am so thankful that God gives us hope. Hope for the good days...which are so hard to see when we are in the storm.


Beckett is so expressive. He smiles showing his two teeth after every nap! He is so happy when he wakes up! Thanking God DAILY for this joy.

I have had so much fun with my kids lately. It's hard not to get bogged down by the hard times...to dwell on the hard times....to wish I wouldn't have had to go through the hard times. Month of May when Beckett was eating/not eating every 2 hours...that was exhausting. But the past two weeks, Ellie has tried to mimic every Olympic sport on TV, Beckett watched every move so intently. I finally feel like this "dare I say normal" to what I thought having two kids would be like. It looks different than what I expected, but I'm ok with that. Today I'm ok with that, and I'm choosing joy.


And my Beckett loves to be held by his mama. I LOVE that my Beckett loves to be held by his mama. I'm holding him right now actually. And he's reaching for every paper on the desk. I love that he can do that!

I feel like we are "over" the feeding woes hump (I almost hesitate to say that cause you other preemie mamas can relate with the worry that...well, he's doing good now...is it going to stay that way?), now that his reflux is managed, and we got him to like the bottle again, and I know my stress has lessened because he's eating better. He still only takes 3-5 oz. at a setting. And maybe I've just gotten more chill with the idea of adjusting my expectations. I have come to terms with the fact that he is just going to be a slow grower. And probably will never take large volumes. He is doing well with the pureed foods. He doesn't like squash so far. He makes the funniest face when we feed him that!

Beckett is getting so much more interactive! He likes to play! He is mobile via army crawling. :) We are still working on PT/OT. He is working on sitting up. He likes to shift his pelvis to lean forward which makes him not want to use his tummy muscles like he should. He has always been an "extender" so this is not a surprise. He has however, a few times, gone from sitting (to hand propping) to tummy. He does really well sitting up when he has a toy that he can prop on infront of him. Again, not wanting to use his tummy muscles. So this week's PT homework involves a lot of "ab workouts" which he hates. But just like the neck control...we do exercises to strengthen...now it's the core. Once he has mastered his ab workouts, then we'll work on standing (He does stand on your lap, but is sure wobbly).

Ok...out of time now...will update on how the ECI 6 month screening went for his developmental areas next blog post...

But here are some at least cute pictures to leave you with! :)

Preemie Parenthood: Unmet Expectations (2 of 2)

Preemie Parenthood: Unmet Expectations
Part 2 of 2: Preemie #2 Beckett
(read previous post for beginning of story HERE)

Fast forward two more years when we finally built up enough courage to try to have another baby. Ben was ready before I was. After all, I was the one who carried the last baby to only 27 weeks 6 days, remember? And the reason for my preterm labor: unknown. I was the one who was going to have to deal with all the anxiety during the pregnancy wondering if preemiehood would repeat itself for our family. We were told that the biggest indicator for us having another premature infant was because we already had one. We also were advised and reminded of ALL the successful women who had carried to full-term after their preemie. And some of them were even my mama friends from Ellie’s NICU journey. We expected we could have full-term baby. We expected we would have full-term baby.

God blessed us with news in July that a baby boy would be joining our family. At the 20 week sonogram, everything looked good. I got a second opinion from a maternal-fetal medicine doctor because I had anxiety about the doctors decision not to put me on progesterone injections, and he too said everything looked normal. That day....

On September 23, 2011, Beckett arrived too soon: 25 weeks gestation, 2 lbs 2.6 oz. Once again the medical team could not stop the labor.

Unmet expectation.

We did not want to go down this NICU journey … again. We did not want the stress of the ups and downs in the NICU … again. We did not want to acknowledge what we knew about having a preemie three weeks earlier than our first. This time between Ben and me heightened.

Our lives were different. Ben worked full-time. He wouldn’t be able to be at the NICU as much as he was with Ellie. Fortunately, I had just quit my job. Otherwise I would have been in the same boat. We lived in the same town as the hospital this time, so we didn’t get the built-in community that we had by staying at Ronnie’s in Kansas. We had Ellie, our 3-year-old at home. She needed attention too. We were farther away from our immediate family now that we were in Texas rather than Kansas. I was not able to pump breastmilk as often as I did for Ellie. I struggled to find enough time. I felt like exhausted all the time. Ben felt exhausted all the time.

There were days that I just didn’t want to get out of bed. I just didn’t want to face the day, face the reality. It’s not that I didn’t want to go to the NICU, it just felt better to stay at home, and not wonder if today I was going to get good news about Beckett, or bad news. I had an awful time recovering after my VBAC, and found myself visiting my OB/GYN frequently. During one of the visits I spoke with both my OB and the doctor who was on-call the night Beckett was born As I asked about Beckett I fought through the tears telling them he was a fighter. They asked if we had support from family and friends. I said, yes, absolutely we do. We did with Ellie, and we have been blessed again with an amazing church community that has already helped us out a lot. But there is something that I will never forget Dr. Carrington telling me.

He said, “Beckett is a fighter, but you know what … his mama is a fighter too. And you can have all the support in the world, but no one can ever feel the burden that you have as mom.” 

It was overwhelming. A lot of feelings had already had come to the forefront: guilty feelings of my body failing again, my body taking forever to heal after the delivery, having Ellie at home, having an even earlier premature baby. I started taking a prescribed anti-depressant/anxiety mediation to help cope. I of course had some guilty feelings with this too … I didn’t go on medication with Ellie, so why this time? 

But I noticed. I noticed a difference. It wasn’t a cure all by ANY means, but it at least helped me get out of bed to face the day. And sure I had my bad days, usually correlating with Beckett’s bad days, but the bad days seemed a little more manageable. I could actually talk through things instead of mumbling every word in-between crying. I needed to take care of my mental health, otherwise I wasn’t going to be of any service to my husband, Ellie or Beckett. 

A lot was different. But this NICU Journey repeat was still filled with unmet expectations. Ben and I didn’t do as well this time around. At times we both didn’t know how to manage. Everything felt so much more out of control this time. With Ellie we were there all the time and we had the routine down, so it felt like we had control. This time, every day was different. We were forced to deal with the realization that we were not in control. Beckett had different preemie issues than Ellie. We kept trying to cling to “comparing with Ellie,” but our neonatologist, faithful Dr.Grubbs aka "The DRG" frequently reminded us that Beckett was born earlier, and he is a male, and he is a different kid. 

Our stress level and exhaustion maxed to the point where we would come home, and get Ellie to bed, and then choose to “escape.” Ben would investigate things pertaining to his new camera, and I usually got on facebook to see how everyone ELSE’s lives were doing. We at times didn’t want to deal with the reality of what was going on in our lives, at THAT moment. Choosing to ignore did not help us grow closer.

I remember speaking on the phone with the on-call neonatologist during church that said Beckett had taken a turn for the worse. Neither Ben nor I knew how to deal. We said a lot of irrational things to each other. Things we didn’t mean. Thing we knew we didn’t mean, but we still said. Hurtful things. Yelling. Crying. All on the way to the NICU. Days of delayed forgiveness followed. Ben is usually the one to forgive first, and I am the stubborn one who needs more time. Sometimes our roles reverse. We just did not know how to deal. The stress was too much for us to handle. 

We both knew we could not continue on this way in our marriage, so we decided we should go to counseling. We needed an outsider to listen, a trained counselor to help us cope with the grief of another NICU Journey, the stress of the day to day and unknown. We went more than once. We received tools to help us process with each other at home. We gained perspective on the fact that a healthy escape is not a bad escape in managing stress as long as we are not completely ignoring the issues we face. We were encouraged that the communicating we were already doing was helpful. We both gave permission to each other to talk to our close friends about our frustrations with each other, friends that will still love us no matter what. 

We were reminded that we handle stress differently, we cope with stress differently, and that’s ok. As long as we are open with each other about how this NICU journey is affecting both of us. 

We committed to be open with our unmet expectations. We are still working on processing our unmet expectations, even the one about how many kids to have. Maybe we will adopt. Maybe we'll just be content with our little family of four. We know we have SO much to be thankful for. We know this is a season, but we both know at the end of the day, even if it is again … we are in this … together. 

We aren’t perfect. We learned a lot. We changed. We grew. We are still learning things we maybe should have done better. And that’s ok.

 

All in all … we tried our best, and you can too. It’s worth it. 

Every unmet expectation.

Suggestions for those of you in the NICU:

1. Go to counseling. Even if you think you are coping GREAT, go to counseling. Peel yourself away from the NICU, and go to counseling. (If I ever get really rich and famous, I’m going to start a program to put licensed counselors in NICUs that parents can go to free of charge. Okay maybe down the hallway so you still have to leave the NICU.). Go to counseling by yourself, go together. Go to counseling.
2. Get involved in the family support groups offered at the NICU or at a nearby NICU. Go together. Make things for your baby together.
3.  Schedule a weekly date night to the NICU. If you have other kids at home, get a babysitter. See if people will volunteer to help you out.
4. Try to go out on a date away from the NICU. Get couples massage. It’s so relaxing! And I’m not going to say a frequency, because we all know that doing this once is probably the most realistic, even though it should be more.
5. Ask people to help. (I KNOW...this is so hard, but just give in!) Most of the time, people want to help, but don’t know how. Ask them to provide meals, so you don’t have to worry about your basic needs, and can focus on your baby and your marriage.

Preemie Parenthood: Unmet Expectations (1 of 2)

Preemie Parenthood: Unmet Expectations
Part 1 of 2: Preemie #1 Ellie

(I wrote this back in May, initially for the upcoming blog for NICU Helping Hands. So promise me you will go to their site to read it too, when it's posted there too!) But this preemie mama world is so genuine and connected...and I so wish we were the last parents to have to go through the NICU dance...but we're not. It's an issue that has been pressing on my heart lately...and I just felt the need to post our story....now. So, if you are parents with a little one in the NICU right now...or even family and friends...my prayer is that this will give you some real life perspective...now...amidst the "storm."

I remember talking to Ben before we were even dating about how many children we envisioned each of us having. Naturally, as we both are the youngest of four … we both said four. We fell in love; we got married. We simply expected we would have four.

Fast forward through finishing our undergrad degrees and the starting of our graduate degrees to September 3, 2008. This day we agreed that the decision of how many kids to have would be made one child at a time. This day changed our lives forever  as we met our 2 lb. 7.5 miracle. Our baby girl was born at 27 weeks, 6 days gestation. After a whirlwind helicopter ride to the hospital, and a few short hours of trying to stop labor, our expectations of a beautiful full-term pregnancy and delivery were blown out of the water.

Unmet expectation.

So now what? We were thrust into a foreign world of parenting of a premature infant where we were somehow supposed to be “ok” with having a baby in an isolette hooked up to breathing support, IV fluids, and feeding tubes. Your first hours and days at becoming a parent shouldn’t be wondering and praying if you’re baby is going to live to the next day. It should be filled with joy of figuring out how to feed them and get as much sleep in between as possible. I’m sure there is a little bit of scared to it. But we didn’t expect it to be this scared.

Unmet expectation.

My husband and I were able to stay by our Sweet Ellie’s side every day because our university professors and my part-time job allowed me to work from a distance. We lived at the Ronald McDonald House, which we nicknamed “Ronnie’s.” We were at the NICU as often as possible. We completed our school work as best as we could, but did have to take incompletes for the semester. 

Unmet expectation.

So as you can imagine, it was a bit hard on our marriage. But for the most part, we were able to be together most of the time, with our little girl. We clung to each other. We grieved that so many of our expectations were unmet. However the scary ups and downs drew us together. When I had my really bad days, Ben was strong. When I would wake up at night with nightmares of Ellie dying, Ben would hold me. (That may or may not have been in a twin sized bed. J) When Ben was stressed about managing classes and finding a job, I gave him the encouragement and support he needed. We were so blessed by the support of our family, friends and church the entire 71 days of Ellie’s NICU stay … and even after. Our basic needs were met by those who love us, and that allowed us to focus on our tiny growing baby together.

We took our princess home on November 13, 2008. We were in survival mode. Taking care of Ellie ourselves, catching up on coursework, Ben finding a job after graduation. It was difficult to make time for each other. We were in survival mode.

We moved to Texas in July, and there is when it really hit me. Whoa. What just happened? Life finally slowed down enough for me to really grieve all of the unmet expectations we had of growing our family. This was frustrating for me because although I was dealing with this so delayed, Ben seemed as if he had already moved on. No problem.

I had days of uncontrollable crying. I felt like something was wrong, and I didn’t know why … after all, Ellie had lived. We now had a growing baby girl who was pretty much on track for her adjusted age. I was supposed to be happy about this. I was happy, but I was sad. I started going to counseling to try and sort out my emotions and feelings. I found out that I had never really “dealt” with the emotions because of such a long survival mode. Even though it went officially undiagnosed I’m almost certain I was was suffering from post-partum depression along with post-traumatic stress syndrome. My counselor told me that it is similar to people battling cancer. They go through the treatments pretty strong, and then after it’s done, is when the emotions and feelings come to the forefront. 

But I was jealous. Jealous that Ben had somehow gotten over things sooner than I. We had to have some long heart to heart conversations about how we were handling things. We had to communicate. It would have been very easy to just grow apart because dealing individually was already exhausting.

But each day got easier. We both said we were going to get through this together. We were both in it for the long haul. We had to come to terms that both of us just handle stress differently. Our coping is different, our stress triggers are different, and that’s ok … as long as we were open with each other about it.

***Read the next post for Preemie Parenthood: Unmet Expectations (Part 2 of 2) ***