Just one more thing HLHS has stolen from me

I knew she would have trouble feeding. I knew this because of the countless posts I have read over the past 5 months about the struggle CHD kids have with gaining weight. Moms worried about calories, supplementing formulas, stressing about weight goals for upcoming surgeries and posts reflecting their despair when those children just don’t budge. What made me think that my world would be any different? 

Let me just warn you that this post is about breastfeeding. If that makes you a tad squeamish, don’t read this. I’ll post something else soon.

I attempted to nurse today and on the first try, she latched on and swallowed. A few times, even! I can’t describe the excitement I felt as I watched her jaw move up and down and felt her trigger the letdown. What a champ! She defied the odds and latched on when I was told that oral feeds may not be successful. Everyone has been focusing on the bottle and no mention was made about how we could get her on the breast. Well, with the help of the lactation consultant, she was on and I was ecstatic. I couldn’t wait to try it again.

“We will let you try the breast twice a day.” the Nurse informed me after I was sharing my good fortune. “We need to get her on bottle feeds once she can tolerate the bolus feeds.” Hearing the ‘twice a day’ took the wind out of my sails. What did that mean? I thought we were going to try for both? 

The time for my second attempt came around and I could hardly wait for a number of reasons- my excitement at having her close to me again and the fact my boobs felt like they were going to explode. Let’s just say my supply came right back a hell of a lot sooner than I expected. I lifted Isabelle off the bed, unwrapped her and proceeded to get things started. Instantly, she began screaming. I should probably mention that the nurse who was going to help me sent someone else in I had never seen before, causing me to get a little anxious. Nothing like whipping your breasts out and trying to get a baby onto a nipple in front of someone who doesn’t know you or your baby. Anyway, the attempt was a failure and Isabelle succeeded in tiring herself out instead of making strides in breastfeeding like I had planned. 

Some of my happiest moments with my previous children have been nursing them. The connection I felt while holding them and nourishing them has been a priceless gift of motherhood. When Addie weaned herself at 18 months I have to admit I was kind of sad but I was grateful that I was able to have successfully nursed her for over a year. I had to wean Elizabeth at about 6 months because it was getting hard to nurse her and work full time. Those first few months were amazing and I am so happy I had the opportunity to experience what that was like. 

As I held a very agitated Isabelle to my breast, I knew I had a very limited amount of time to attempt this. Just 20 minutes. Any more than that can cause her to burn more calories than she would be taking in, making the attempt more costly than worth it. I tried to relax, not to stress about it and to keep telling myself that this is just an attempt, not to be upset about it. I gave up after she passed out on the pillow, exhausted from the effort. As I cleaned the parts from the pump, the nurse who was supposed to help me came in and I acknowledged the failure.

“Oh, she is showing her true colors.” she exclaimed. “What do you mean, true colors?” I asked, not sure what she was getting at. “She showing us that she is a hypoplast baby. Some feeds are successful, some are not. This is why we need to get her on the bottle, maybe tomorrow…” I am not sure what else she said because all I heard was “You silly girl, thinking you can breastfeed a hypo plastic baby.” I wiped each part with the crappy brown paper towels and as she kept rattling on the battle plan involving everything but my breast, tears began to spill out and down my face. I just kept nodding, hearing nothing but that I couldn’t do what I did with my other girls. But what else is new? HLHS robbed me of a joyful pregnancy, it robbed me of those first few moments moms get with their newborns, it has robbed me of having my baby in my arms with lots of people sharing our joy around us. And now, it has robbed me of having the joy in nourishing my baby. 

Instead, I have to become acquainted with the antiquated breast pump my insurance company has decided to give me. I have to continue my supply by waking up at 2 to an alarm, not a baby, walk downstairs and hook myself up to a painful contraption. I’m trying to stay positive, but you know- I will continue to mourn the losses as they become apparent. I know the nurse was trying to console me as the tears rolled down my face but knowing what she needs and knowing that I won’t be able to give it to her the way I had hoped is still a disappointment. Yes, I know she is a hypoplast baby, but I still had my hopes so let me cry and mourn another piece that I have lost. 

I’m exhausted trying to be in two places at once, and I hate leaving ehr every night. It’s been excruciating and I am hoping to stay with her tomorrow. I’m not going to lie, the more they push for her to have a bottle, it’s going to hurt me. Regardless of what is good for her, it’s going to hurt and I’d be really crazy if I keep pretending that it doesn’t.

2 thoughts on “Just one more thing HLHS has stolen from me

  1. Call on your inner strength, Lis, even when you feel as though you don’t have any left. It is still there and try to focus on the positives including the fact that this precious baby survived the first and most difficult surgery and will be getting your milk even though she won’t be nursing yet. I can only imagine the pain this must be bringing you and feel free to mourn the part of this that you didn’t get the opportunity to experience. I am sending my love, positive thoughts and prayers as always, Barb

  2. From someone who has just recently been through the same situation as you I struggled with feeding my baby girl with hlhs. She had the Norwood at 3 days old, was transferred to the ward at 11 days old. It was then that I was able to try and breast feed her. I also had done alot of research and new that establishing oral feeding would be hard. I went into it thinking any type of oral feeding would be a bonus. The few times she took to the breast she only took 10-20 mls. I would stop as soon as she looked to tired or became agitated. 20 min max 2-3 times a day is def enough. I also tried the haberman bottle and the same 10-20 mls is all she would take. Most of the time she wasn’t interested. Although a very happy alert baby she tired easily with feeds. My advise is only feed if she is happy to feed. Don’t pit to much pressure on yourself or her. Don’t have expectations of her. You can bond with your baby when she is having her ng feed with kangaroo care. Remember what she has been through and take any oral feeding as success. She is still getting your good breast milk with through the tube and being slow at oral feeding will not effect her Heath/ recovery negatively. Try not to become overwhelmed with things like feeding it will come with time, just enjoy every moment with her.

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