Hope Not Guilt – A Guest Blog Post by Preemie Mom, Linda Churchill

May 14, 2015 started out as any other day. Taylor (stepdaughter, 6 years old), Logan (stepson 3 years old) and I woke up at seven in the morning. Morning routines were underway soon followed by bringing Taylor to school. This day was Special Friends Day at Taylor’s school so I stayed at her school all morning to see her perform her Spring songs, meet her teachers, and see artwork and assignments she had learned throughout the school year.

I got to sign Taylor out early so we went home, got Logan, made some PB&J sandwiches and went to have a picnic near Daddy’s (Sean) work. We ate lunch and played tag and enjoyed nature for the afternoon. Early evening, Sean left for his second job, and the kids and I went to get a few groceries. We then came home, ate dinner, and we had a little while before bed time. The kids decided they wanted to play with the balloons they got me for Mother’s Day only a few days before. I was sitting on the couch videotaping their fun and laughter when all of our lives changed.

I hemorrhaged. Home alone with two children, scared. Not knowing if I would survive; not knowing if Rylee would survive.

 

Five hours later at 11:49pm weighing in at 5lb 7 oz and 19 inches long at 32w 3d our Princess arrived via C-section.

At 20 weeks I was diagnosed with placenta previa and was told that I most likely would not deliver vaginally. As the weeks went on, we started planning on a C-section. At 27 weeks I bled for the first time and bought myself a 7 day admission for monitoring. The day before discharge was also two days before Rylee’s baby shower and I bled again which bought me another 5 days in the hospital for more monitoring. I then was finally sent home on modified bed rest at 29 weeks and well at 32w 3d Rylee made her debut!

When I first bled at 27 weeks a Neonatologist came and told me what to expect if Rylee were to be delivered that early; consult again happened at 28 weeks, then 29 weeks. When I was rushed in on May 14, 2015 I declined the consult. I knew she was going to be born, and preparing for it – well there was no way to mentally prepare for a NICU stay. I learned over the three weeks I was home that there was no way to mentally prepare or know what was going to happen. It all depended on delivery and depended on how well Rylee was doing after delivery to what extent she would need treatment, etc.

I got to see Rylee for the first time a few minutes after delivery. Sean took pictures on his phone of the two of us… me in absolute awe that this little human being just came out of me. She was wrapped up in a blanket – not in an isolette – I got to kiss her forehead, then they took her away. Sean and my parents saw her that night and she was only on CPAP (Continuous Positive Air Pressure). The next morning I was able to go see her, and we brought Taylor and Logan in with us. I will never forget the look on their faces; scared, more accurately terrified. Sean lifted Logan up so he could see her better, Taylor could see her just fine. No one said a word. Taylor broke the silence when she asked if she could leave. It broke my heart. It felt like someone had ripped out my heart and stomped on it when she got whisked away the night before, but now our two older children were so terrified they wanted nothing to do with their baby sister after they were both so excited for her to come into the world before this. I felt like it was all my fault.

Guilt plays a horrible role in a NICU stay especially when there are siblings involved. The questions remained:

• What did I do wrong?
• Why should she have to go through all of this?
• Why is it fair that I get to go home and she doesn’t?
• It’s not fair other moms get the joy of bringing their baby outside three days after delivery and bring them home.
• It’s not fair I will miss the “Newborn” stage.
• What could we have done different so Taylor and Logan would have accepted Rylee that first day in the NICU?
• How can/could we make it so Taylor and Logan weren’t as scared seeing her for the first time?
• Mom guilt

• Not being able to hold Rylee
• Not being able to care for her
• Being jealous that the nurses seemed to be more like her Mom than I was.
• Not being able to have skin to skin; to feed her naturally.

I have learned that guilt will always play a role. The list of questions and feelings can go on and on. But going day by day helps more than one would know until you go through it. Taylor and Logan saw their sister as much as possible and over time it became easier. Over time, Taylor was asking the nurses how much she was breathing on her own, how much was eating, when can the feeding tube come out, when can she wear her own clothes, can I help with a bath. Over time, Logan became loving, caring and over protective of Rylee if they ever needed to do anything to her while he was there he would tell them no until we explained it to them.

While Rylee was in the NICU there were times I would shower and look down, realizing I wasn’t pregnant any longer. There were moments I would start talking to Rylee and then shortly realize I was just talking to myself. When Rylee came home, it started becoming easier. I would hold her – and still do – while she’s sleeping just to stare at her, make sure she’s breathing, talk to her. I talk to her about anything and everything. I guess I may be trying to make up for lost time.

What I have learned though in the short 9 weeks she has finally been home with us is:

• Time flies no matter what! You fall asleep on the couch for an hour nap and you’ll feel like you missed something! Especially if you are a working Mom like I am, you’ll always miss something. However, reminding myself that missing things is normal, and not worrying about what I’ve missed but all that I have seen and witnessed is more important.
• Time truly does heal. I now see mother’s leaving the hospital I work at with their newborns or coming in for appointments happy, glowing and pregnant and it doesn’t bother me as much. I am happy for them; I smile; I silently pray for them that they will not have to endure a NICU stay but for the mother and baby to be happy and healthy.
• I’ll never know if any of this was fair – her birth story, her pain and suffering in the beginning of her life. What I do know though is that she is doing much better now. One day at a time truly has worked in Rylee’s favor.
• Mom guilt will also always be there. We’ll feel guilty as Mom’s that we missed her first giggle, her first bath because the nurses did it without us, her first smile because we finally got some shut eye; the list can go on and on. What we need to make sure we do is be there for our children as much as possible, so some of these little moments we don’t dwell on missing in knowing we were there for the big ones.
• I learned to replace the word “Guilt” with that of “Hope”. I hope I get to see all of her firsts, her milestones, watch her grow up. I hope she continues to thrive throughout her life; and I am thankful for seeing everything I have been able to see of her life so far!
• The most important lesson to any Mom going through this – there is nothing you could have done different. There is nothing I could have done different. No matter how I keep trying to change the story and scenario in my head, nothing could have changed the outcome. Rylee’s birth story is just that; Rylee’s birth story. It may not be perfect, it may not be great, it may not be a nice story to tell. But it does have the best ending any story could have – a perfect little amazing Angel in Mommy, Daddy, Big Sister and Big Brother’s arms and hearts for a lifetime.