It amazes me how emotional it is for me to have these follow up visits for the baby. I wasn’t anxious at all about my fetal echo (which is the routine now) leading up to Thursday. But as I pulled into the parking spot, I took a deep breath and realized I was indeed anxious. Not about anything specific, just about having to be there in the first place. Signing in and waiting for my name to be called was also difficult. I hate looking around at the other families waiting with their children. This will be me…should baby boy live, we will be visiting the cardiologist on a regular basis for check-ups and possibly procedures. The thought is overwhelming. However, the alternative is worse. I guess that’s how you feel sitting there with your child – happy there is place for you to go for excellent treatment. Dr. Donofrio is one of the best in pediatric cardiology and she has offered to follow baby boy through life should he get that far. This is a blessing. Henry and I love her – as much as you can love someone you’ve met four times. She is professional, yet personal; optimistic, yet realistic. I thank God for sending her to us.
During Thursday’s visit, she warned me that life will become overwhelming after baby boy’s birth. The visits to the hospital and the logistics of caring for my older children will be difficult. It is impossible for me to feel like I am doing a good job at both. This is something I am trying to come to grips with. I am already preparing to ‘let go’ of the house and other areas of my life, but caring for my children is something I’m still firmly grasping with a closed fist. Dr. Donofrio assured me the Children’s staff is the best babysitter I could want for baby boy, but honestly, I want to be the one loving him and nurturing him. I trust they will take good medical care for him, but I don’t really want to relinquish his emotional care. And how do I reconcile leaving my girls at home with babysitters while I sit and nurture my baby in the hospital. They need me too. I don’t want them to feel neglected and displaced. I don’t want them to feel less loved or less important. Dr. Donofrio said I will work out a routine, things will fall into place and it will all get done. I know she’s right, but routine doesn’t mean optimal. I’m realizing my life as optimal is over. We will be in survival mode as a family and I must open my fist and trust my two older children to God just as I have with baby boy’s life. I have to trust that my best isn’t good enough anyway – no matter if everyone is healthy. Ultimately, it is God who takes care of the sparrow and God who watches out for my children. He will give me grace and strength to get through each day – even if it is just enough, with no reserves. He has brought me this far and has promised to never leave me or forsake me. This is what I must cling to as I trudge back and forth from the hospital.
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Before I was married, I was a nanny for a family with a similar situation as yours. Not the same, as the mother thought she was carrying a healthy baby, and then an hour after birth discovered a problem and soon came to learn half of his heart was not functioning. He had HLHS, and had to have immediate surgery and not leave the hospital for 3 months. This news hit the family hard, as they had a 3 year old daughter who was not comprehending what was going on! So I took care of the little girl, while Mommy lived at the hospital, and Daddy ran around from work to home to hospital like a crazed man. It was a rough 3 months, and rough in the following months when sick baby had to go back for more surgery/recovery, sickness, check-ups, tests… But God remained in control. Baby William is now a thriving 7 year old, and all of that is just distant memory. And big sister doesn’t remember the separation at all! It is hard, and I do not envy the stress of all the coming and going you will be doing. But God will provide! I keep you in my prayers daily, and check in often to see what current struggles you are facing.
I can’t help but think of the song “Breath of Heaven” Have you have heard it? I am sure you have but incase you haven’t it is a song about Mary carrying Jesus, and how she may have felt she sings “Breath of Heaven Hold me Together, Pour over me your Holiness,” We will pray for peace for your soul, and He will reveal His plan soon..Sending (HUGS))
Hang in there!