Be An Advocate

The words that have stuck with me over the past two and a half years are not "hypoplastic left heart", "omphalocele", "NICU", "very sick". No, the words that have truly stuck with me since Luke's birth were spoken by a very wise cardiologist named Dr. Mott at TCH. I remember standing with Tommy next to Luke's crib in the CVICU after his Norwood, just touching him, holding his little hand. Dr. Mott came in, a mild mannered, very kind doctor who had the bedside manner of a saint. We were asking all of our questions (ok, so I was asking the questions, but hey my husband is not much of a talker) and Dr. Mott was so eloquent in his answers. Toward the end of our conversation, Dr. Mott told us the following: "You are your child's best advocate. Doctors and nurses always seem very busy, but if you are concerned about something, then you need to be the one to ask a doctor or nurse." Of course I took these words to heart (and still do, with each of our children), but I never realized how true these words were until we lost Luke.

The reason I want to talk about this is because I know a lot of moms and dads reading this right now who may be dealing with a sick kiddo. I have talked about it before, and I still feel it: I will always feel as though I failed Luke in his last week with us. I knew something was wrong. I told the doctors that he wasn't right. BUT, I wasn't his advocate. I didn't push for an echo at his last clinic visit (on the day he died). No, I was being too selfish. I remember that Tommy was in Atlanta the last week that Luke was alive. I told him that day that I didn't think we would be coming home from the clinic visit, that the cardiologist would admit him to TCH because (again) I knew that something was wrong. So imagine my surprise when she told us that all of his tummy troubles were from reflux (which I still believe he never had) and that his cold hands didn't mean anything. We could go home...no hospital stay. I'm not sharing this so that you will write me notes telling me that I didn't fail him, that I didn't screw up in some way. I am just sharing to let others know how important it is to be your child's advocate. Luke couldn't tell us what was wrong, but as his mother, I knew that something wasn't right. That his heart was having issues. I should have been his advocate and demanded that the cardiologist perform the necessary tests. Instead, I failed. I took the easy way out and I will never forgive myself for that. The what-ifs drive me crazy, but I am confident that Luke is much better off in heaven than he would be here on earth.

Again, I am not writing this post looking for a pity party. No, I want to make sure that everyone reading this remembers our story when they are questioning whether or not to push something with a doctor or surgeon. Ask the questions. Demand the tests. Advocate for your child. If something doesn't feel right to you, let your child's doctor know that you are concerned. You know your child better than anyone. Please take care of them or no one else will.

If your child is a heart patient, I have spoken to a few heart professionals and they are beginning to believe that heart failure begins in the gut. Luke had exhibited "gut" issues the week before he passed (he had never had issues before then). He was vomiting after almost every feeding and he seemed to be in pain. My father and I let them know at the last clinic visit and the cardiologist dismissed his issues as reflux. I took this as the truth as doctors know a whole lot more than I do. Now I realize that Luke's little tummy was probably failing, and I didn't advocate for him.

I know this is yet another deep post, but this is another thing that has weighed on my mind for so long. Tommy and I learned a lot from our experience with Luke. We used this lesson to advocate for James during his NICU stay and continue to advocate for each of our kids. I just really want to encourage each and every one of you to listen to your instincts and to trust your gut. Advocate for your child, because, as Dr. Mott told us: "You are your child's best advocate."

Please continue to pray for all of the sick kiddos. A friend from my MOPS group is expecting a sweet baby girl in December and she just found out that she has a CHD. I believe that this precious child will be just fine, but it is so scary for Mommy and Daddy. Another blogger mommy is expecting a baby boy soon and he also has a CHD as well as hydrops. I am praying so hard that God performs a miracle for this family as they have already lost a baby girl and a baby boy who had HLHS. God bless you all!

Clinic-->ER-->Inpatient-->Baby with Asthma

The title pretty much sums up our weekend. James started getting a runny nose on Wednesday evening, but nothing out of the ordinary. He coughed a little through the night, but again, nothing too crazy. By Thursday night, he was wheezing a lot and didn't respond to his nebulizer treatments. Tommy and I knew that James would end up in the doctor's office on Friday, but we didn't realize how quickly his breathing would deteriorate. On Friday morning, Matthew and I took James to the clinic and he was evaluated right away. The doctor told the nurse to check his O2 sats, give a breathing treatment, and check his sats after that. Do you remember when I talked about triggers a few posts back? Well, checking his O2 sats is a huge trigger for me. I really became upset when James' sats were at 84%. Not good. We gave another treatment in the office, but his respiratory rate was still high (at one point, it was at 80 breaths/minute). Dr. Hayes decided that it would be best if I took James to the ER, so Tommy came to get Matthew and I took James to Methodist. We were in the ER for about 7 hours, where James received 2 one-hour breathing treatments and had an x-ray. James was still retracting while he breathed and his sats and breathing rate were not quite right. So they admitted us with bronchitis and asthma. We stayed overnight on Friday and since he was still breathing quickly and retracting, the doctors decided to keep him last night, too. Tommy took Emily and Matthew to visit us yesterday and today which really helped break up the breathing treatment/pulse ox/blood pressure cycle. I miss Em and Matt when they are not around. James did have some elevated blood pressure readings which set off my blood pressure trigger, but the doctor today was not concerned at all, citing the fact that he was crying and tense during the readings. It still set me off and cause some tears, but I feel better about it now. Mommy and James are glad to be home but boy are we tired!

So, James was officially diagnosed with asthma this weekend. It doesn't surprise us because when we think back about everything we recall how often he has been on steroids and has had breathing treatments. It all kind of makes sense now. Luckily, we have a very specific treatment plan, hoping that the meds will keep an asthma attack at bay throughout the winter months. There is a picture below of Emily and James having some fun in the hospital room cabinet while awaiting discharge (which explains James' street clothes--no more gown). I have also included a video of James trying to "break free" from the playroom on the peds. floor. Emily and Matthew loved playing in that room with James. Thanks for everyone's prayers on Facebook and e-mail. God bless you all!

A List of Firsts...

First off, I want to thank everyone for your support of my last blog entry. It really means a lot to me that people still care, let alone are still reading my *mostly* pointless drivel. So after such an emotional post, I thought I would share some firsts with you all:

First time I was able to get them all looking at the camera at the same time

First day of Second Grade

First day of Kindergarten

First time (in a long time) they have taken a sweet picture together

First time you can tell that he actually has hair in one of my blog entries

NOT the first time he has been a huge mess

First time he stuffed his little body into the cabinets and closed the door

Thank you all for sharing in our "firsts". God bless you all!

Acute

Acute. What does that mean to you? Before Luke was born, the word acute meant geometry. It reminded me of measuring triangles in high school. After Luke and James, acute has taken on an entirely different meaning.

Acute is no longer a memory of Mr. Davis' class in ninth grade. No, it is something much more profound, much more difficult to comprehend. Acute is not a word that a parent wants to hear or for that matter, feel. When I hear the word acute, I cringe.

Medically, I have heard acute many times. It is as if it is "the queen mother of dirty words" (to quote A Christmas Story) in the medical field. No parent ever wants to hear of their child having acute pain or that he is in acute distress. It's just not natural.

This post is not about the word acute in terms of medicine. It is actually about the acute emotional pain that I still feel at times. The pain that is so difficult at times, so unbearable, that only tears can make it go away. I understand why we lost Luke: he was very sick. I understand that he is much better off where he is than what he may have endured here on earth. Although I can comprehend the bigger plan of Luke's life, it doesn't make it easier to accept the fact that Tommy and I lost our child. He is no longer with us. The acute pain of losing him will always be there.

In the blog world, you can find a lot of people just like you: stay-at-home moms, bakers, political junkies, and yes, mothers who have lost a child. I have been fortunate enough to find some amazing moms online who share membership in the same club as I do: those who have lost a baby due to a CHD. I have been able to share my acute pain with them and vice-versa. I have cried with them, vented with them, and have shared my most precious memories of Luke with them. I have found camaraderie with these women and I thank God I have found them.

One thing that I admire about my fellow angel moms is their uncanny ability to be brutally honest on their blogs. I have tried to be as candid as possible on this blog, but many times I have failed. Am I always truthful? Yes. Are there things that I have wanted to say, but haven't had enough courage to do so? Definitely. So, here I am, trying to be Brutally Honest Bernie, praying that I do not offend anyone.

The truth? The truth is that much of this acute pain is due to hurt that I feel has hardened me over the past 2 1/2 years. Don't get me wrong, losing Luke changed me more than I could have ever imagined. But it is what happened after we lost Luke that I believe has hurt me even more. It was the person who would go out of her way not to talk to me so that she wouldn't have to talk about my baby boy. It was the one who told me that the reason she didn't come to his funeral was because it would have been too difficult for her. It was the woman who questioned why we had an open casket and if I saw him take his last breath. It was the priest who didn't call after we lost him, even though I was his employee. It was the person who told my dear friend that I would be alright because I had other children. It was the very pregnant woman smoking at the outlet mall. It was the teenage mother who stabbed her newborn to death so that no one would find out. It was the countless number of babies who are given a death sentence because they are not perfectly formed. It was and continues to be those closest to us who refuse to acknowledge the fact that he lived and died. He lived. He died. I pray that one day they understand that fact and show compassion to us. That they can put aside their self absorption and understand what we face each day: our baby is gone.

Whew! See? Acute emotional pain. I've got it and until I can release it, it will stick with me. I pray that all of you are braver than I am and that you are not holding onto to any acute pain, whether it be physical or emotional. May God bless you all and thank you for letting me vent!