Adam's Heart - Part 5 (an aside from your mom)

This is mom (Katherine) again writing – your dad is doing a very nice job chronicling our time in the hospital – which is good, because already, just over a week since your discharge, the days are already starting to blur together.  Yesterday, we took you back to the hospital for your one-week post op appointment with the surgical team.  They took another x-ray of your chest, listened to your heart, and removed your stitches.  Your dad and I had different reactions to being back at the hospital: he felt comfortable, remembering all the many blessings we received while you were here.  I felt dread – while I too want to remember all the comfort and love we received through this process, I also want to forget a little --- to forget the pain and worry, and to move beyond this part of life and find our new “normal.” 

But there are a few things I want to remember in this process – so I am taking a few moments here to record them – so that I will remember them, and so that you will too.

First, I want to remember how resilient the human spirit is.  You could probably ask any mother what her greatest fear is, and she would likely state that it would be a tragedy occurring to one of her children.  That’s certainly true for me.  But I have also been plagued by anxiety since I became a mother at the thought of something bad happening to one of my kids --- a bit more than just the standard “fear” – but more along the lines of a belief that I would not survive a tragedy occurring to one my children.  So here we were – thrust into the ER not knowing what was wrong, and then facing a very serious emergency situation with our 6 day old son.  While we cried a LOT in those first few days, I was surprised by the calm that overtook me early on.  I knew it was a real possibility that you might not survive all of this, and while it made me very sad, I did not panic – which I would have previously thought would be my reaction.  I was sad and worried, but I also knew that I would be okay, whatever happened, and that we would find joy in our lives again.  I believe this was a gift from God in this process.  And as I watched the other parents with children in the CVICU or other newly post-partum moms making trips to pump their milk at the milk bank, I noticed that they too were not constantly sobbing.  They looked tired, and there was certainly an air of sadness, but not the constant despair I would have expected in this situation.

And one of the greatest blessings in all of this is how it brought me and your dad even closer.  We leaned on each other a lot during our stay at the hospital.  We took good care of each other, and I was again reminded of the “rock” he is during times of stress.

You could actually tell when a “new” family had arrived at the CVICU waiting area – as there were a lot of tears.  But once that family got settled in, they also got into their “routine” – whatever that was, and you did not witness a lot of meltdowns or despair.  People simply carry on with whatever their circumstances are.

We quickly fell into a routine – and it actually felt very busy, despite the fact that there was little that we could actually “do.”  I was pumping milk for you every 3 hours, which often required a trek across the hospital to the milk bank, as the pumping room on the 17^th floor was often occupied by another mother.  The whole process took about 45 minutes to set-up the equipment, pump, clean the parts and deliver the milk to either the milk bank of the CVICU freezer.  After the initial learning curve and frustration in pumping, I actually did not mind this process that much, as it made me feel like I was actually “doing” something that would make a difference.  In the end, I pumped over 100 bottles for you!  We took half of them home, and I am in the process now of donating the other half to the milk bank for other babies to have.  The one “frustration” of pumping, though, was that it seemed like something was “happening” every time I needed to go pump – we would be on schedule to consult with a doctor, a visitor would be arriving, or Ben & Katie would be visiting us.

Another aspect of this process that struck me is how people make that transition to accepting that such an emotionally intense experience is actually happening to YOU.  This is always the sort of thing that happens to someone else – and I think we need to inherently believe that these things won’t happen to us or we would always be plagued by worry and fear.  I remember seeing newly post-partum mothers with their big bellies thinking “wow, that woman is pregnant AND she has a child in the ICU” just to realize that she was no longer pregnant and she was just newly post-partum.  And it always made me sad for her that this is how she was spending her recovery – hobbling around the hospital, visiting her baby amidst all the wires and tubes.  And then I would catch a glimpse of myself in a mirror and realize that I was one of these moms too.  I think in the first few days in the ICU, I felt like the exception – like somehow I had the one healthy baby in the room, since you hadn’t had surgery yet, so besides the tubes and wires, you were just a normal baby.  I also felt very grateful for the 6 days we had at home – as most of the babies were diagnosed in utero or at the hospital after delivery, so came straight to the CVICU.  And fortunately, my body seemed to heal much more quickly than in the past, and I was able to endure all the running around the hospital and being limited to holding you upright in hard chairs.  And I am so grateful that you are my third baby, and that I knew already how to breastfeed and how to care for a baby – I can only imagine how hard all of this would be for a first time mother. 

But as it sank in that I was indeed not so very different from these other mothers with babies in the NICU or CVICU, I do remember a level of mourning that this was our experience.  I was so intending to savor these early newborn days with you, since you are our last baby.  I am glad that I did indeed take it slow with you in our early days home.  I spent a LOT of time holding you in the recliner and was not eager to try to get too much done around the house.  But once we were in the CVICU, I felt marginalized – I had to push to do the things that were important to me as your mom.  They took excellent care of you in the CVICU, but their priority was caring for babies who had heart surgery – which allows minimal handling by parents.  You were in the ICU for three days before your surgery, and you were stable but not allowed to eat.  I couldn’t bear having you lay there all by yourself, and I wanted you to feel held and loved.  So I asked to hold you “kangaroo style”, which is skin-to-skin.  So I wanted to unwrap you from your swaddling blanket and take off my shirt and hold you against my chest.  After all, you were only 6 days old!  The first time I requested this, we had a male nurse who was totally supportive, but it required (by law, I guess) that we be completely blockaded from view, so they had to pull around all these privacy screens.  Later nurses were less accommodating, and while they agreed to it (I think they had to, since the doctors said it was okay), they weren’t terribly helpful or encouraging, and made me feel badly for doing it.

Post-surgery, the other thing I had to push for was to be allowed to nurse you.  We actually went back and forth for two days before I got to nurse you, as one of the doctors would agree to it, once a certain condition was met (ie you were tolerating enough milk from your tube feeds or bottle feeds), but then the condition would be met, and the next shift would begin with a different doctor, who would want a different condition met.  Again, I am so glad that I was a “seasoned” mom in all of this, as I did not receive much support in transitioning to the breast feeding, and no one really asked how the pumping, etc. was going to make sure I was keeping up a supply for you.  I think this would have been a different situation in the NICU.  Once we started nursing, we were able to continue doing so exclusively.  I asked the night nurse to call me when you were hungry (we had our first nursing session in the early evening, about one week after your surgery), so I came every three hours during the night to feed you.  Again, they would have to pull the privacy curtain all the way around to do so, but the nurse didn’t seem to mind – and it was less work for her than giving you a bottle. J  Once you began nursing, we were in the CVICU for less than 24 hours before we were moved to the main cardiac floor, where we had a private room, so nursing was no longer an issue.  Although, again, we were “warned” by the nurse practitioner once we arrived that we were probably going to need to supplement with high calorie formula to make sure you gained weight --- but you showed them!  You were and are a fantastic nurser, and we never did need to do anything but let you eat when you wanted to!

One other thing that I remember “realizing” as we settled into the reality that this was our reality, is how much we need hope in these situations.  On the NICU floor hallways and in the milk lab  are many pictures and brief stories of children who have defied the odds and survived and thrived after leaving the hospital.  I remember scanning these wanting to see something that resembled our story in there – to give me hope that we too would have a beautiful story of recovery worthy of hanging on the wall.  And then I would catch myself searching for these nuggets of hope and become sad and a little angry that I was in the position of needing this kind of encouragement to just have a normal life with my son.

Much of this struggle was during the days leading up to your surgery.  We watched babies come and go out of the CVICU, and particularly, I think seeing babies fresh out of surgery and in the first few days of recovery was helpful to avoid the shock and despair that might have otherwise occurred when we first saw you come out of your surgery --- completely sedated and most of your tiny body covered in wires and tubes and bandages.  And besides the scary evening where we were informed that you might be having seizures, your recovery was smooth, so most of the fear was in the anticipating and waiting.

And now here you are, almost four weeks old!  And you are behaving like a normal newborn --- you are much more mellow than your brother or sister were at this age.  We ALL love snuggling with you – Ben and Katie included!  I don’t know if your temperament is just how you are, or if it is a result of all you have been through, but we just absolutely adore you, our sweet Adam.

And now, I will let your dad continue on with your story…