I can’t pinpoint where the emotional lows are coming from right now, but the past couple of weeks have had some ups followed by some downs. There seems to be a lot on the horizon for us and for Bernadette but in an odd way it’s all starting to feel more normal. Not easy, but normal.
I have been thinking about upcoming appointments, a well-baby visit and a hearing screen and a heart check. And then closer to her first birthday there will be routine labs, another well-baby visit, and a sleep study. It seems like a lot, but I am not anticipating any bad news, or deep down inside am I?
I am not a glass half empty type of person in general. Most of my life I have looked for the positive in things. I try to see the good and focus on that. But after the pregnancy with Bernadette, I feel as if something in me has changed a little. Is it me being realistic or am I waiting for the other shoe to drop or am I just not trusting like I should be? Or all of the above.
When Bernadette’s heart defect was confirmed by the cardiologist around the half way mark in the pregnancy, I was told I was to deliver at the hospital in San Francisco, covered by our insurance. The hospital where we live was not set up for a baby who was in need of immediate medical attention. Her heart surgery that would be needed between 2-4 months of life was set to take place at UCSF, a completely different hospital than they one they wanted me to deliver at in SF. The perinatologists had brought up the possibility of delivering her at UCSF early on, but the cardiologist insisted that was unnecessary and we moved forward with plans to be induced at 39 weeks in SF.
In the weeks prior to her birth, I couldn’t help but feel deep down inside of me there was something the cardiologist had missed. I don’t know how else to explain it except now being on the other side and looking back at the way things transpired, I think it was the Lord preparing me for more than what was originally anticipated.
When she was a week old, it was discovered that Bernadette did in fact have another heart defect that was missed during the fetal echoes. I felt sick to my stomach as the cardiologist walked us briefly through her findings of that initial echo.
We were admitted to UCSF just a couple of weeks after her birth for immediate surgery. We shared a corner room in the NICU with another brand new baby girl and were separated by only a thin curtain. The day of Bernadette’s first heart surgery arrived quickly and that morning I had been getting in all of the last minute cuddles with her as I possibly could before handing her over to the anesthesiologists. I sat there with tears in my eyes listening to the soft cries of the baby next to us who just had her breathing tube removed. I rejoiced with her mom at the sound of her cries while at the same time experiencing the most gut wrenching pain thinking of Bernadette’s approaching intubation.
The doctors were just outside the door of our shared room discussing the baby’s progress upon extubation and moved on to Bernadette. They were discussing her surgery and whether or not it would in fact happen that day. I listened in as one neonatologists said that he could not believe Bernadette had been allowed to be home for 2 weeks before being admitted to UCSF. Her heart defect was serious and he explained how she should have never been off of the monitors.
The tears really began to flow. Her heart was a serious matter. I thought back to those feelings I couldn’t shake during the pregnancy about there being something more going on with her heart. It made my feelings I had been having seem validated. For a moment, I wanted to go back and push harder for more echoes, a second opinion from UCSF, or something, anything.
The Lord knows though and I completely trust Him, that the way things happened was how they were suppose to happen. Of course it was wonderful being able to have her close to home, to have some of my closest friends and family come visit us after her birth. Something we hadn’t ever experienced before with our other daughters when they were born. I was thankful to go home. I was thankful to be with our other girls every other day in between the drives to and from SF. But, it was hard, it was stressful, it was chaotic, it was scary. We were trying to care for a sick baby, trying to understand the severity of her heart condition, trying to get her to eat, and watching her breathing as closely as possible.
The guilt set in as I processed through the neonatologist’s words and could not believe that I hadn’t pushed harder, I didn’t listen to that feeling I had. In the end, everything that happened happened, and there wasn’t anything I could have done in that moment differently and I certainly could not go back. I still couldn’t help but wonder though what would have happened had I listened to those gut feelings.
Looking ahead, I don’t anticipate anything coming up, but I think there will always be a certain amount of underlying nerves heading into any testing or heart checks. While I am thinking positively about it, looking at how strong she is and how far she has come, I also know that no matter what, God has her. And whatever we walk through ahead is how it is suppose to be.
I trust the Lord. I trust His plan. But, I am human too. And my mind does run away with me on occasion. Thoughts swim around and keep me in a constant place of surrender. When I do find myself holding my breath as the anxiety starts to take root I try my hardest to stop and ask the Lord to walk the road with me. To take the anxiety and show me Himself through it all. Things may not have looked how I thought they were going to look in any of this, but I do know that God has known this from the beginning.
Hopefully it encourages you too, that no matter what you are facing, the emotions, the thoughts, the whatever. You are not alone in any of it. Another heart mama recently told me that she still gets anxious when they go in for her son’s heart checks and they have been doing it for a few years. It’s normal to feel that way. She also said you start to know more of what to expect and have a better understanding of things and while things can certainly come up, God knows and you absolutely have to trust Him with it all.