Our New ‘Normal’

Thursday was to be my first official work from home day. Chris also decided to stay home, and had planned on taking the day off. He ended up working of course, which is what usually happens when he takes a day off. Our daily routine when we are home together is as follows: wake up between 6/ 6:30, head downstairs, turn gas burner on to boil water in preparation to heat Isabelle’s bottle. Once it is warmed to a satisfactory temperature, one attempts to feed her by getting the nipple in her mouth  and encouraging her to suck without triggering her gag reflex. Tricky stuff, because it inevitably happens causing moment of panic that the feed will end up on our shirts instead of where it belongs. What doesn’t get finished in the bottle gets put into the pouch attached to her feeding pump and it gets pushed through. While she is getting fed, I prepare her meds for the morning. Ideally, we like to give her the meds before she eats for best outcome. Some days she gets fed first, depending on the time. 

Thursday, she spent most of the day awake and uncomfortable. There were random episodes of vomiting and we both took turns holding her throughout the afternoon. We went to the pediatrician’s and saw someone we don’t normally see who told us that perhaps we need to switch formulas instead of giving medication for reflux. Ummmm…yeah. 

After speaking with Dr. Levine, we packed up and went off to Children’s after visiting with both our girls prior. The ER experience wasn’t the greatest but it could have been worse. I get into Mama Bear mode when I feel that the desire for tests override what is best for Isabelle at that moment. Let’s just say everyone within 10 feet of our room knew that I had had enough of the blood pressure cuff torture, that she hadn’t eaten in over 4 hours and we were getting a room come hell or high water. 

While we were waiting, when we got up to her room on 8 East, and whenever someone new came in to examine her we heard over and over again how normal this was. It’s normal for these babies to throw up. It’s normal for them to end up at the hospital multiple times. It’s normal that she is having such a hard time. It was also at this time when the words “A dry (dehydrated) hypoplast baby, is a dead hypoplast baby” were said to us. In other words, we can never be too cautious. And this is normal. It’s all part of being a hypoplastic family and par for the course.

The other day I was browsing on facebook and saw a friend’s photo of her infant son lying on his tummy pushing himself up. His head was up firmly on his shoulders and he looked very strong. I smiled and was about to hit ‘like’ when it hit me. He is only a week older than Isabelle. I cannot imagine her holding herself up that way right now. She is barely getting control of her head. I couldn’t bring myself to click anything and continued to scroll down trying to get that image out of my head. Our normal is feeding tubes and barely fitting into 0-3 month outfits. Our normal is waiting for the vomiting to start after the last of the water is flushed through the tube. The tears well up and I go through the list of the positives so I don’t completely lose my mind. But there are days, and today is one of them, where I stay mad. I’m angry that hospital stays are our normal, and that we miss out on a lot because we can’t take her out. We were at a wake last week and some people actually wanted to know where she was- as if we were supposed to bring her out. I even heard a “Oh, I was hoping you had the baby.” 

I had planned on attending a baby shower for my cousin’s wife this weekend. I miss that side of my family tremendously and had been looking forward to going all month. We may be discharged the day of the shower so going isn’t an option. I even considered taking her earlier in the month but then changed my mind as I became more aware of sneezes and coughs of other people around me. There was a possibility that her symptoms were from a virus but her blood tests came back normal (for a hypoplast) so that was a relief. The World of Infection is overwhelming and we really do need to be more vigilant about isolating her from that possibility. It means we have to say no to a lot of invitations. 

All of these are part of our new normal, and my negativity right now could be my exhaustion speaking. But I need to be honest and when I see pictures of other peoples’ babies doing things I know Isabelle won’t be doing for a while, it hurts. It reminds me how different our normal really is. Yes we are lucky she is alive and doing considerably well. I get that. But I also get sad when I get a clear picture on how different our normalcy is from where we would love it to be. 

2 thoughts on “Our New ‘Normal’

  1. I am a heart mom and don’t really know how I found your blog, but anyway please contact me if you would like I know how your feeling and its hard to find people out there that understand.. Hang in there, things will get better!!

  2. Elissa, please dont get discouraged. I know your feeling or anger, although its not for the same reason. When I was pregnant with Mackenzie my cousin was 4 months further along in her second pregnancy (who I am the god mother of) and it was SOOOOO hard not to resent her for having ANOTHER “healthy” baby and I was finally having my first one who was only going to have 1/2 a heart. I thought it was so unfair and didn’t understand what i did to deserve this. It was so hard to go visit her in the hospital after she delivered because I knew in just a few short months I would be there beginning our journey, not knowing the outcome, or even really what to expect. I was terrified, angry, sad, resentful…you name it I was that person. Mackenzie was not always up where she needed to be developementally, She didn’t crawl until she was 11 months old and didn’t walk until she was almost 18 months. She was 9 months before she even sat alone. Now at 4 years old you would never know she had any trouble in the beginning. She went for her preschool eval a few weeks ago and the administrators of the exam could not believe how much she comprehended and how well she could verbalize. She is still slightly behind in gross motor, but nothing that is major (she has trouble jumping with her feet together) and she can’t climb stairs like she should, she still kinda “crawls” up them.
    Isabelle will do it all, even if she does it a little later than some her own age, and you are going to look back on this time and say I dont know how I made it through but we did! Every baby is different…I have two HH babies that came along after Mackenzie and they were SOOO different from each other. Averie didnt crawl until she was 9 months and started walking the weekend after her first birthday. Ryleigh started crawling at 6 months and is walking all around the house (with the help of a chair or toy) at 10 months.
    Now that Mackenzie is 4 and we have gone through all 3 surgeries as well as 5 heart caths I have to say out of my cousin and I, I definitely feel that I was dealt a great hand. Mackenzie is and AMAZING little girl,who has given me an entirely new outlook on life that I KNOW I would never have seen without her being born the way she was. I would do it all over again if I had to no question, Mackenzie is an AMAZING little spit fire, who really touches anyone she meets. Isabelle will be the same I guarentee it.
    Please if you need to talk dont hesitate to send me a message or even give me a call. It definitely helps to have someone to talk to, or just listen when you need to vent, someone who has been through a very similar situation.
    Sending prayers to you and your family ❤

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