Instinct

Over the past few days, I have been debating whether or not to write this post. I fear that some of my experiences may be misconstrued as feelings of resentment toward the team caring for my baby, so I am going to begin with a little justification for this post.

The message I want to communicate is that I, as a mother, am a vital part of my son's health care team. I know him better than anyone else, and my opinions are important. It took me a long time to learn to trust my gut, and I still struggle for confidence in my intuition.

I still believe that the doctors and nurses looking after my baby are competent. Tet is a rare and tricky beast, and G's case in particular fooled many folks. We are now in regular contact with a team who are experts in his condition.

The things that I write below have weighed heavily in my mind. I need to process my emotions so that I can move forward. The purpose of this blog is to help me to cope with what is happening to my family, so I am going to write about it. Please keep in mind that I received very devastating news only four days ago, and so there may be some anger creeping into the text. This is a normal part of my healing process, but it might bother some readers.

Ok, here we go.

When G was born, we successfully nursed the first night. I know this because the nurses kept checking his blood sugar levels. They were concerned, because G was so big, that I may have had gestational diabetes that didn't show up during screening. This could lead to blood sugar crashes in my newborn.

At some point, I was told that I was holding him incorrectly and was offered a set of "acceptable " nursing positions. We were terrible at it. I very quickly realized that my baby was not getting enough milk, and asked for more help. G was (A) aiming in all the wrong places,  (B) exceptionally strong for a newborn, and  (C) not opening his mouth very long or very wide when in the correct position. I asked for more help, but to be honest the help I received was not particularly useful, and sometimes I was just brushed off and told to keep practicing.

What I should have realized is that these positions would be great if they worked, but since we were getting nowhere we should have ditched them and gone back to what was successful.

Instead, I felt that the old way of feeding was no longer an option, and that I was a failure because I couldn't force my (insanely strong) baby to latch on properly. I continued futile attempts to practice and kept asking for help whenever I could. Judge if you must, but remember that I was sleep deprived, was falling off the hormone cliff, and had been a parent for a whole 12 hours. I hadn't built enough confidence in myself to trust those maternal instincts yet.

After about 5 hours at home, I was 100% convinced that my baby had no milk. As soon as the public health unit opened, we packed up our son and asked, yet again, for help. The nurse did an evaluation, told me babies cluster feed, my milk would come in that day, and my latch wasn't so bad. She said only worry if he doesn't poop for 24 hours. We explained that he hadn't pooped, and she said he probably would soon. When we asked about using formula, she scoffed at the idea and said only to use it as a last resort. Then she sent us on our way and suggested we come back the following day to check in.

My instincts told me that every piece of advice this woman told us was dead wrong. But I trusted her anyway. We did use a little formula though, because I didn't quite trust her enough.

The following day, a miracle occurred. We met a nurse who examined little G and told us that, yes, there was a problem. She encouraged me to listen to my intuition, and she put us on a detailed plan to build my milk supply and make sure that G was well nourished. This woman was the best person that we could have met, and I credit her with saving my son's life.

A few days later, I was holding G in the "incorrect" position when he turned his head, opened his mouth wide, and aimed directly for where his food supply was (although it was covered in a shirt.) He continued to try his hardest to get at the goods, so I tried feeding him lIke that. For the first time since we were in hospital, I heard swallows. We weren't bad at nursing; we were experts at our own particular style of feeding.

I had a lot of thoughts. We knew what we were doing. We were going to be OK. The parenting books were guidelines only. And I knew my son better than anyone, and I needed to be assertive when asking for help.

Unfortunately, I hadn't learned that lesson well enough when we tried to get a diagnosis for G's heart, which resulted in the news coming at almost 12 weeks postpartum - over six weeks later than it should have.

When G was about three weeks old, I did some research on congenital heart defects during a 2 AM feeding. When I came across Tetralogy of Fallot, I was quite confident that he had it based on the list of symptoms. However, my Google University medical degree wasn't worth much, so I left the diagnosis up to a doctor. I spent the next two days asking EVERYONE I knew if his lips looked blue, because they did to me. Everyone disagreed. At our next appointment, I asked the GP (as he checked the baby's heart murmur) if G's lips looked blue. He didn't think so. I even went to a pediatrician who, once again, said no. But she decided to refer us to a pediatric cardiologist to be sure.

Once again, I figured these people knew best and finally accepted that my son was probably not dying from a dangerous heart defect. Unfortunately, they were wrong. G in fact has Tetralogy of Fallot and will require life saving open heart surgury in the next couple of months.

I don't blame these doctors. OK, scratch that, I'm still in the "angry and blame-y" stage of coming to terms with this new reality, and I'm shocked that not one doctor - out of three GPs and two pediatricians - mentioned that my baby had visual signs of a deadly heart defect. But only four babies are born with ToF per year on Vancouver Island, so it's not something that they see often. Additionally, G was growing very well and was hitting all of his milestones on time, early, or exceptionally early. He fooled everyone. Most importantly, we didn't lose anything in the meantime. G didn't have any life - risking episodes. We lost six weeks of paranoia.  So while I blame many people for his late diagnosis  (including myself for not pressing the issue more), I am hoping to move past it.

The most important lesson that I have learned is that I am a part of G's health care team with an important role. The doctors, especially the specialist and surgeons, know a lot about ToF and surgical techniques. I know a lot about G. Together, we have the body of information needed to make a solid plan for my son's recovery.

The nurses and doctors who gave us the wrong advice weren't incompetent. I believe that we just fell into some small minority of families where the advice given to us wasn't useful. No one is perfect. The fact that we were told the same thing over and over suggests that we didn't just have the bad luck of stumbling across one bad doctor, but instead that the training to spot this disease is insufficient.

I have been told that I will need to be a strong advocate for my child while we are at Children's Hospital for the surgery. I feel fortune to have learned the lessons that I did when they did not harm my son.