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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. 

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Weren’t We Just Here?

Isabelle has decided that in spite of all of our efforts, she wants to have her accessory back. Ok, not really but after losing almost all of the weight she has gained we may have to have the NG tube put back in. Frustrating doesn’t come close to describe this experience. Mind boggling, that come close. I have spent most of the weekend in panic mode, some moments more silent than others, and am at a place of surrender. In other words, I am prepared to make the necessary phone calls to get it back in there. Some may be thinking “Of course, what else would you do?” When these setbacks do happen I find myself somewhat paralyzed with the need to control the situation. Let me just try one more time. Perhaps it was her medication, let’s try the Prilosec again with the rice cereal bottles and see what happens. Please let me try one more thing before I have to make that call.

I have learned that you run out of time very quickly with these kids. Each minute that goes by is another calorie lost. She is so small people keep assuming she is a preemie, which bothers me because then I have to go into what she has and get The Look. The Look that says “I am so glad I am not you.” The other negative side effect of discussing her with other people is The Comparisons. The Comparisons are people’s attempts at trying to make you feel better with anecdotes that have nothing in common with the topic at hand. Please don’t compare your healthy child with mine. It’s not the same thing. She won’t catch up like other babies and we have other factors involved. I know you are trying to make us feel better but it’s actually reminding us how different she is and what a struggle we will be having.

25 lbs has been lifted off my shoulders. I try to say these things nicely to people but because I am overtired and running in a higher stress level than normal, it comes out unbelievably wrong. This just sucks right now and no amount of anecdotes will make it any easier for us. Thanks anyway and we appreciate people trying to support us in their own ways but right now my tolerance is at an all time low.

It’s an hour past when she was supposed to eat. She is snoring, and making no efforts to wake up. This is what happens when she isn’t getting the nutrition she needs. I am cutting this short so I can wake her up and get my hopes up that she will take in more than 30 ccs this time. One can only hope!

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Tubin’

This morning I woke up to my husband telling me “It’s out, she took it out, let’s go!”

In spite of the little hand mitts that we have enclosed her grabby hands in, she managed to pull the NG tube right out. What does this mean? Either a trip to Jordan or to South Shore Emergency Room to have it put back in but lucky for us it was Visiting Nurse Day and she put it back in after a few tries. It’s not as easy as it looks. You have to make sure that you have lubricant, which we didn’t, so it goes down smoothly. Needless to say there was some screaming and a very unhappy baby who passed out after the last piece of tape secured the tube.

When she was tubeless, it felt great to kiss both sides of her cheeks and to see her start looking like a normal baby. I was hoping Dr. Levine would tell me that we didn’t need anymore because she has gained so much this far but that wasn’t what she said. What she said was that it was great that she was gaining and growing like a weed, but we will probably have the tube in even after she hits the 4 kilo mark because she may not take a full bottle orally. I do see potential on occasion throughout the day but I can see why they are concerned. It’s just another frustrating piece of having a congenital heart defect.

Tomorrow night on channel 5, a fellow HLHSer will have their story told. It’s amazing to see so much recently about HLHS considering prior to March 5th I never knew it existed. I know many moms whose children have HLHS and watch them go through challenges and small victories. One of my favorite people to watch is a 21 year old HLHS young lady named Megan. She is everything I want for Izzie. I try to keep her in mind as I see that the cap of the tube popped off and the bassinet needs to go into the washing machine.