I Can Be Mean

This is a place meant for children– sick children. The sickest children. There aren’t colds and sniffles and chicken pox in these rooms, there are diseases and cancer and babies in need of surgery. There is no priority level, because they are ALL top priority, as every parent will tell you.

And, as doctors in a hospital meant only for the sickest of children, their level of care should be second to none. They should be on top of things. They should be seeing around corners the parents haven’t even thought of, obviously, because the doctors are the ones with the medical degrees.

It should not fall to the parents to ask for their child, who has been diagnosed with a large hole in their heart, for the cardiologist to come back, after not seeing them for a week. It should not fall to the parents, who have been mentioning the infection in their child’s eye for the 10 days, to finally call for the on-call doctor to examine it, who orders moisturizing drops and an MRI to look for nerve damage.

It should NOT. FALL. TO. US.

It’s a running joke in my family that I’m the “nice” one, and once, in a conversation about this attribute of mine, I apparently said, very pitifully, “I can be mean!” I’ve smiled sheepishly every time this is brought up, but now, I’m ashamed.

I have to be mean. Niceness gets you nowhere.

Assertive is probably the word I’m looking for, but the sentiment is the same. I can’t lay down and assume that because they went to school a lot longer than I did, that they know everything and they are doing the right things. If I feel my son is being brushed off, I need to tell them.

Kindly, but firmly.

After learning Jack had fallen through the cracks, and the cardiac team didn’t realize he still needed to be looked at for the massive hole in his heart that is still causing him to breathe fast, regardless of how much they up his meds, the on-call cardiologist finally looked at him. They’re giving him until the beginning of next week for the meds to work, and if not, it’s time for surgery.

Yes. YES. I want surgery! That’s wrong to be rooting for open heart surgery on a 3.5 week old baby, but dammit, my kid can’t even eat without puffing away like he’s running a marathon. He’s going to forget HOW to eat without a tube injecting it right into his belly. His poor heart is working too hard; it needs to be patched, and NOW.

After we were forgotten about by the geneticist last week (insert blinding rage), she finally came today. She confirmed the parental diagnosis I made last week: Jackson has something called VACTERL Association.

The letters stand for:

Vertebrae Anomalies
Anal Atresia
Cardiac Defects
Tracheoesophageal Fistula
Esophageal Atresia
Renal Anomalies
Limb Defects

These seven types of defects are commonly seen together, and when 3/7 are seen in patients with no other chromosome or genetic problems, then a diagnosis of VACTERL Association can be made. It is associated with normal development and normal intelligence (TEARS OF JOY AND RELIEF), and it wasn’t preventable– it has to do with blood flow at certain parts of early development of the fetus.

Jackson has three letters: CRL. He has a hole in his heart for the cardio, a cystic left kidney for the renal, and his sweet lucky fin for the limb defect. And, honestly, reading about all the things associated with this, and the other anomalies that he could have been born with… he’s got it pretty good. His right kidney is totally on top of things and doing the load of two, and once we patch his heart, he’ll be good to go. They say it’s a fairly common heart condition for kids.

His hand? Yeah, it sucks. We’re not thrilled, and he won’t be either, when he realizes it. But, after the last three weeks, I CAN’T WAIT to only be concerned about his hand, rather than his heart or his chromosomes. A hand? Small potatoes.

Me? Oh, I go from being Positive Polly, to wanting to jump off a building. Can’t help it. This roller coaster isn’t fun, and the incompetence in his care hasn’t helped. Neither does the fact that I only get to see my daughter in very limited quantities, or only get to see my husband for 20 minutes as we switch off duties from one kid to the other. Makes for a very stressful time, and a very short fuse for me.

I’m trying to take it one day at a time, and know that we will eventually take him home, and be a family again. It’s just hard. Sydney does not remember she even has a brother.

End of ranting. This started out so purposeful, and dissolved into a general outpouring of thoughts.

What can I say? I’m laying on a plastic couch, listening to a number of different and random beeping noises, as well as a poor crack baby cry in the next room (the walls are thin, I hear things).

Again, I’d so rather be laying in my own bed, super pissed at Justin for snoring, and getting up for a midnight feeding with my newborn.

We’ll get there… won’t we?

9 thoughts on “I Can Be Mean

  1. zerosixty4D says:

    Rachel I am so sorry that you have having to deal with these things, your little man is going to be so strong for all he is enduring. You are also very strong, much more than you realize. I saw your status that Justin is the strong one, the fact that you cry doesn’t make you weak. You are there, seeing to it that Jackson is being taken care of, you are strong.


    PS – Sorry for abusing the word 'strong'. I am not a writer. haha


  2. Hannah @Supermommy!...Or Not says:

    We couldn’t get the doctors to listen to us or be proactive about our baby’s care. I kept telling them over and over again that he wasn’t eating and I KNEW there was something wrong with him. They were determined it was GI so spent 5 weeks switching formulas and running blood tests while I kept telling them they were wrong and I wanted them to look at other things too. Finally, when he was down to only 7-9 ounces of formula in a 24 hour period, he was hospitalized for 9 days. We spent the first 2 days trying to get them to do something before they put in an Ng tube. Even then, things didn’t really start moving along until my sister-in-law, a doctor, showed up at the hospital and told them what to do. It shouldn’t have to come to that for action to be taken though!


  3. growinggabe says:

    My son was born with a rare syndrome(CHARGE syndrome) that causes many medical problems. He had surgery for tracheoesophageal fistula and esophageal atresia the day after he was born. He’s been diagnosed with many other medical issues, all associated with CHARGE. We were in the NICU for 7 months and were finally discharged the end of February. Since then we’ve admitted back to the hospital multiple times for infections and sicknesses. It’s been a long hard road. I feel your pain and know what you are going through. Yes, it’s so painful watching your child suffer but nothing compares to the joy they bring. I wouldn’t trade my Gabe for any healthy kid in the world.

    I roam the internet looking for special needs kids’ parents blogs. Tonight, I’m so glad that I found yours. You can help so many people along this journey just by sharing your thoughts and feelings. If no one else, you’ve helped me. Thank you for sharing your family’s story. Your family is in my thoughts.


    • Rachel Engel says:

      Oh my goodness, Jackson has VACTERL Association, and they were also considering CHARGE for him as well! He has tracheomalacia, a cystic kidney, a heart defect, a limb deformity, and an immature cranial nerve, along with a g-button for aspirating his feeds. I completely understand what you went through. We are working on nearly three months in the NICU, and it’s not getting any easier.


      • growinggabe says:

        I’ve heard that VACTERL association and CHARGE syndrome have some similarities. Have they done the specific CHARGE genetic test or has it been ruled out completely? Gabe has laryngomalacia along with possible tracheomalacia. He also has other airway anomalies that make for a very unstable airway. Gabe ended up having a tracheostomy because we live so far from adequate medical facilities. He has a j-button which goes into the jejunum instead of the stomach. Sorry I can’t say the NICU stay gets any easier. But enjoy the comfort and safety of the hospital while you can. Being able to talk to doctors and get answers gets a lot harder once you leave the NICU.


      • Rachel Engel says:

        They have ruled out CHARGE, he’s pretty classic VACTERL. There’s a geneticist that came to see him that is apparently a wizard at diagnosing kids, and she was confident that’s what he has. They are very close, though, I researched both of them carefully.

        His tracheomalacia is slight; he doesn’t even need oxygen, so we’re really grateful for that. His heart and lung conditions are what we’re most concerned about right now.

        We will hopefully know what their decision is on heart surgery later this week.


      • growinggabe says:

        Glad CHARGE has been ruled out. Although I have to say CHARGE kids are pretty awesome (I’m a little biased). That’s great that his tracheomalacia isn’t a problem. Well, I’m hoping that y’all get a good answer about the heart surgery soon. He’s a cutie!


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