Proud momma

Thursday Anya had her second appointment with the Newborn Medicine Clinic, and it went well. She is gaining about a pound every two weeks which is ahead of the goal they have set for her. She is about 12lb 10 oz. Even though she is tube fed babies can still have a hard time gaining due to all the extra energy they use to breathe. If my family’s tendency toward obesity has anything to do with this, I don’t know. She is on a very specific amount of formula that we have to give routinely. I don’t think I will ever look at weight the same again, or complain about not being able to lose weight. Gaining weight for Anya isn’t just about size. A healthy weight can help improve her endurance, and is another sign that she is doing well.

A difficult part of the appointment was seeing OT; for various aggravating reasons she has not been evaluated by ANY therapies yet, but we have an appointment next week for feeding. An OT came over briefly to give me some tips for strengthening. OT’s, by their nature, analyze every aspect of a babies movement, or lack thereof. It was difficult to hear the list of issues that we have to deal with. She needs to be worked up to 20 minutes of tummy time three times a day; she doesn’t even tolerate five minutes now. She has a tendency to look toward her left side, away from where her ECMO cannulas were. I honestly don’t think she does it that much, but apparently it can affect the spine, and Anya already shows some signs of scoliosis. Only time will tell if it gets worse, or needs treatment. I have never posted about it before, but Anya has really long, almost double jointed looking thumbs. More than once in the hospital a nurse would be concerned that they were dislocated. She may need splints to help strengthen the muscles so she can pick up things properly with her thumb and fingers. I could go on and on.

We left the appointment to go down to ultrasound, to check out her kidneys. She is on blood pressure meds and they wanted to make sure there weren’t any kidney related blood pressure issues (there aren’t). I was feeling a little discouraged after talking with the OT. I anticipated strengthening issues but some of these things sound like they are going to be more long term.

In the waiting room I saw a family with a girl about Arwen’s age. She was sitting in a wheelchair in a way that showed she was in it most of the time. It was obvious that she had Down’s syndrome. She was sporting oxygen, and her fingertips were blue. An alarm went off that belonged to the same oxygen monitor we have, and I saw an appallingly low number. Still, this spirited little girl was arguing with her mother, she wanted to push her wheelchair herself. Her mother and I had a brief conversation about how stubborn preschoolers are.

And I am worried about SPLINTS, for goodness sake. One of the hidden blessings of major children’s hospitals is seeing lots of sick kids; you feel like an oddity anywhere else but you can feel normal in this environment. It is a reminder that you aren’t alone in your struggles, and sometimes it puts your struggles in perspective. There are all kinds of families raising children with issues ranging from very severe to mild. Every family has different challenges, but a common thread I always find when talking to other parents is pride. We are all enormously proud of what our children have achieved, and this overcomes many feelings of self-pity.

Anya started staring at her hands last week and shortly after that started batting at things with them. When we first learned what ECMO was we were painted a dreadful picture of the damage it could cause. Some kids would not catch up until age eight, if they were ever able to at all. I believe I know the feelings and thoughts of the prodigal son’s father: I thought she would be lost to me, but she is not. Every small milestone she achieves is a joyous occasion. She may not be perfect by the definition of the world; many may look at our family and feel pity. Some people may wonder why we even allowed her to be born, with the issues she was sure to have. To me the truth is that all children are difficult in their own way, it is not for us to decide. No one can know the joy of watching a child grow against the odds unless they have done it themselves.