After the Diagnosis

posted in: Apollo | 30

Why yes, that is my husband clearing snow off the driveway with his excavator…isn’t that how it’s done at your place?

Thank you all so very much for the kind words, prayers and support. I totally feel like we’re surrounded by friends who care and that helps immensely.

Chuck and I have been discussing the possibility of a vascular ring for months. We’ve done our research. We knew it would involve heart surgery to fix. We’ve had many discussions about it and I’ve shared about our suspicion of a vascular ring with friends and here on this blog.

But you know what? Talking about the possibility of a vascular ring and having your child be diagnosed with one are two entirely different things, as it turns out. I can’t imagine getting this diagnosis out of the blue, when all you were expecting was something related to breathing issues…At least we were prepared. I read my Facebook status updates and my blog entries and it’s like reading someone else’s. I mean, your kid, doesn’t get diagnosed with a congenital heart defect. That happens to other people. Maybe a friend, a relative or a blog you read…but not you.

Kind of like Apollo’s birth…none of it seemed quite real. And after the fact as I told friends and shared it here…Once again, those things don’t happen to you. It’s something you watch on Discovery Channel…then tell your friends about because it was so bizarre.

I’ve mentioned here before how I stared at Apollo’s face at I held him in my arms at the hospital, and I told myself I wouldn’t treat him any different from the other kids. He birth was crazy and traumatic, yes, but he came through with flying colors. His Apgar scores were 8 at birth despite all the drama! He was fine and I wouldn’t treat him like he was fragile or sickly just because of the circumstances of his birth. But as time went on it became very clear he wasn’t like any of my other ten babies…and we had to treat him differently.

There were times when I really thought I was crazy. Did I have some pathological need to view Apollo as a sick baby? On his good days I would wonder if I was exaggerating things. Should I leave well enough alone? Was it fair to put him through miserable tests just because I thought he was sick? Despite “knowing” that something was wrong, I would have days where I doubted myself. I wondered what my friends and people at church thought…I mean most people who see him wouldn’t know anything was wrong. If they saw him on a good day his breathing my even be inaudible. Did they all think I was crazy? Comments that were meant to be encouraging “he looks great!” “his breathing sounds good” made me feel more crazy.

It’s hard to not be angry with the occupational therapist who told me Apollo was just “afraid” to eat…Chuck said, “He is afraid to eat…he’s afraid he’ll choke to death”. It’s hard not to be angry at the ENT who said “His airway is fine. It looks completely normal to me.” And I suppose it’s fine to be angry at them, but I’m not focusing my energy there. I am going need all my energy for the upcoming appointments, tests and surgery.

We don’t know any specifics about Apollo’s heart and we won’t until he is thoroughly examined by a cardiologist (the one we talked to Wednesday was just the one who read the MRI). What we do know is he will have many more tests, he will have to have surgery which I know from my reading will mean at the very least 2-3 days in the hospital in Seattle and possibly a lot more than that.

It will mean keeping up with homeschooling, the house, meals and appointments with the other kids while making numerous trips to Seattle. Chuck will have to take time off work for many of those (obviously he needs to be there when we’re making decisions with the cardiologist). Our children at home will be left a lot, at home or with friends, worrying about their brother and missing their parents and their routine. It’s going to be a long road for everyone. Your continued prayers and support are welcome.

I’ll be making an ever popular “button” for Apollo that I would love to have you share on your blogs. Feel free to add Apollo to your church’s prayer chain, share with your small groups, etc. Heart surgery is never routine and without risk.

And tomorrow, I will blog about something other than Apollo. I think it will be therapeutic for me.

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30 Responses

  1. Sending prayers to you and all your family. When our daughter (who was born with a known birth defect- a cleft lip) refused to eat after her lip was repaired we also knew she was “afraid” to eat. And our surgical team didn’t seem to care. It didn’t matter to them that a baby who would nurse (albeit not very successfully) before her surgery would not anymore. That she was terrified of her bottle. She was starving and would not eat.

    And its hard not to think maybe it’s just you. That you’re expecting too much, too soon. I’m very glad we pushed back at the surgical team’s disinterest. While her fear of eating ended up being fixed by chiropractic care (she was suffering from neck pain–likely related to the position she was in for surgery).

    I wonder how much trouble we would be in if I had not pushed for a solution to her eating terrors. I’ve heard stories of babies like my Kestrel ending up with feeding tubes because of their post surgical distress. Not okay. Thankfully, our family doctor was an ally in our distress.

  2. You know, it never feels real. and people will say to you, “how do you cope?” … and you just DO. I remember watching the children’s cancer hospital shows before I had children, crying as I watched and thinking how horrible it was. And it is horrible, but it feels somehow softened when it’s on your plate. The strength will be there, and the family will pull through and work together. Good job keeping on those docs, btw. Same with the nurses. Not to villify them, they’re our heroes, but I think they do the job so long the forget that it’s OUR first time dealing with this kind of thing. Stick to your guns- they won’t do it for you, I found.

    • what you said is so true. When my first was a baby I would see Moms with special needs kids and think “how do they cope with that? How are you not curled in a ball crying when that was not expected

      Then I had a son with sp needs…and you just do…Someone at work said to me the other day “I don’t know how moms like you deal with that…but I bet you get used to it” My head about spun off. “used to it” uh…”no..never” You move fwd…you get up every day, or in my case maybe you never went to bed because DS kept you up all night.lol..You deal. You pray and you perservere.

  3. Ahh….the anger. I know it so well. Before I left Dr. U’s office the day Brenden was diagnosed, I made them promise they would fax them the results. I then went straight to the office and asked them if they had heard the news. His pediatrician came out of a room and said, “We just found out.” I said, “I knew there was something wrong and nobody would listen to me. Please remember Brenden when you’re dealing with future hard-to-treat patients….Their life may be at stake, just like my son’s has been for 11 and a half YEARS!” He not once apologized or tried to verbally (or through letter) make amends. I then walked down to the medical records office and requested all my children’s files be transferred to my General Prac. I was angry! So very bitter! I’ve wanted to write a letter to all of his doctors….even the NICU and tell them Brenden’s story. I don’t want ONE more child to fall through the cracks. Maybe that’s why I was so adamant that you look into the DAA thing. Nobody should have to suffer for as long a Brenden did….or as long as Apollo did. It’s unjustified and you do have a right to be angry.

    For all these months my soul has not been at peace. I felt the same urgency as I did all those years ago and it wasn’t even for my own son. Today, I don’t feel that urgency because I know Apollo will be okay. He’ll have a tough recovery, and you’ll spend a few days in the hospital and in the PICU, but one day he’ll come to you, after running around, and you won’t hear the noisy breathing and you’ll feel that same peace, too.

    XOXO

  4. Praying for you all.

    I cannot begin to imagine the emotions you must all be going through at the moment. But as coming from a childhood where I was sickly for the first five years, due to acute tonsillitus and adenoid issues, I can assure you that although Apollo may not be able to vocalize it after surgery, and despite the post-op pain, he will, to him feel well for the first time. Despite the fact that my condition was far milder than Apollo’s, after surgery when most children complain about having sore throats, the thing I told my mum was – that I feel well.

    Why am I telling you this? Because it is only with the hard work that you and chuck have endured over the past year that Apollo has had such a prompt diagnosis. And I can promise you that as a teenager, who may still have some health issues, he will be unbelievably grateful for the astuteness of his parents, just I am mine, for discovering his health issues so early in life.

    I hope this convey’s as an encouragement, and I apologise if it does not. You guys will be in my prayers over the following months, and I shall add you to my cell group prayers. Thank you as always for sharing you life with world.

    Best wishes,
    Emily

  5. Yeah. I’ve always thought you were a little nits too, but I didn’t think it had anything to do with Apollo. Lol.
    Awesome job following your instincts since he was born!!! I’m so glad you and chuck have been a team. Let me know how we can help in the coming times.

  6. And on a totally different note…the excavator is awesome. Shoveling the driveway would be so much more fun with one of those!

  7. Take care of yourself too. You have been through, and are going through a lot. Thanks for sharing and we hope you feel our love and prayers.

  8. Praying for you and your family as you go through this journey.
    Thanks for sharing with us. Now may the Lord of peace himself give you peace at all times and in every way. The Lord be with all of you.-2 Thessalonians 3:16

  9. This is all happening right before sanctity of life Sunday.

  10. Ah, the anger. My daughters doctors didn’t listen to me for more than 3 years. Her thing wasn’t life threatening, it was more cosmetic. She has a vascular growth in her cheek giving her an extreme lopsided appearance. Because for so long they told me I didn’t know what I was talking about and that I was wrong about what I’d seen since birth and my time lines and symptoms, she’s stuck with it. To fix it would create scar tissue and disfigurement, to leave it is to risk hearing or vision damage in the future. No one listened. It took years of me actively being a pain in the rear to doctors before they caved just to shut me up. By then, it was too late. Nothing to be done until she’s done growing. If they’d caught it early, they could have removed it before it grew. The anger I feel when a teacher asks if she was hit, has an abscess, or a kid makes fun of her… I know I should forgive but I can’t. Not yet. She’s now 10 1/2 and has accepted but we keep constant tabs to make sure her vision and hearing remain in tact. They’ve changed her life and caused undue hardships on her. Doctors think they know best because of a degree but often are too busy or self involved to listen to the parent who KNOWS when something isn’t right and pay attention during exams when you bring it up over and over. I’ve never again been the “good” patient. You have to advocate, otherwise they’ll sit back and let you die without noticing something was ever wrong. I had a life threatening thing diagnosed for me by being pushy. My “nothing exercise won’t fix” was something that required surgery and medication for life.

    Good for you mama. Apollo will feel so much better and thank you for pushing.

  11. I am praying and knowing God will be with you and provide all that is needed.

  12. I am praying for your whole family. I am happy for you to have a dx to work with yet I know you are in a ton of pain and were probably hoping maybe just maybe there was something very minor they could snip and help him.

    As an RN and DH a Dr we are always very cautious as the other poster said to remember this is your first time with this. I remember my first RN job and it was on an abdominal surgical floor. Some nurses would leave out the reason for surgery. they would just launch into their dressing change or staples and meds they were on. I always ask “why did they have their colon removed?” I think it does make a difference if it is cancer or polyps or Crohns or whatever. Then you have an idea of was this dropped in their lap…or perhaps a chronic illness and a long anticipated event. ..

    I can and can’t imagine what you are going through. Just from your blog I can see you are not alone and that brings me great comfort. I don’t know many people and am not sure what I would do in your place. You are so Blessed with the support you have. On the other hand I am not taking away this is a very serious thing for your baby to go through.

    It really resonated with me when we went to pick up Noah and he was only 5 lbs and change. He was in the NICU only because he had not had prenatal care. I remeber asking the nurse before we left if I should treat him like my “other kids” or did he need special precautions being so small. She said no just keep him inside for 3 months..I asked if this was with all babies and she said yes.

    DH being a DR said she was misinformed(to me not her)..needless to say I wore Noah to the Farmers market at 2 weeks old, Dairy Queen at 3, the cider mill at 6 weeks. BUT here he is super healthy albeit about Apollos age and size(3-5th percentile) and I am still weaning him from the bottle because I don’t think he drinks from a cup enough…I let him wake me at night for feeds because of his size…I didnt take him out in the cold today…So I related to that part of your births story..

    I am praying every day for you.

  13. A mother’s intuition is a very strong thing! I will pray pray pray for Apollo. I remember the “new normal” when we found out at age 3 that our son had kidney disease……it is a rough road, but the love of friends and family can really help you through!

  14. Our son started having seizures three years ago. He went from one mild seizure every day or two to having hundreds a day within weeks. It took three weeks of frantic phone calls, ER trips and multiple doctor visits before someone finally believed us and was able to catch one of his seizures. Those three weeks felt like forever. I didn’t know exactly what was happening with my son as his seizures did not present typically and would second guess myself, too. Finally I had done enough research and watched his symptoms enough that I would walk in to the next appointment and tell the dr that I thought my son was having partial complex seizures with a right side focus. They still! didn’t want to take my word for it. Apparently doctors do not appreciate google. When his seizures got so frequent that the neurologist could watch one we spent 6 weeks in and out of the hospital (mostly in) trying different medications and tests. Turns out his version of epilepsy was very serious and fairly rare and didn’t respond to medication. The doctor’s answer was, “Let’s remove his right frontal lobe, that should fix the problem, though he might have some weakness in his left arm.” I flipped out. Who cares about a weak arm if your child turns into a psychopath without a frontal lobe? That didn’t seem to phase the doctors.

    I took him for a second opinion to yet another doctor. Told him about all the medications we’d tried and how they make his behavior even worse and still didn’t stop the seizures. That man had the gall to tell me that the medication my son was on did not cause the side effect of hyperactivity at the same moment my son had finally stopped bouncing off the office walls to crawl under the doctor’s stool and lick his shoes. He may have been a very book smart man, but his observation skills, or at least the ability to apply what he was seeing to something that was different than the textbook, were lacking.

    We went the surgical route and it was very scary. We didn’t know how our son would come home. Being at the hospital was scary and inspiring and frustrating and humbling all at the same time. In the end, our first neurologist was right. Removing the seizure focus did stop his seizures and our son is OK now. He is no longer debilitated by his epilepsy. We are still in therapy working through speech and motor issues, but our beautiful sweet son has returned to us.

    We will be here believing and praying with you as you walk through this journey. Apollo will be well, and soon.

  15. Well it seems we have more than DAA in common. We also homeschool Owen’s sisters.

  16. I am thankful that the Lord is giving you direction- He is good. I know that it is unbelievably difficult and painful to see your beloved child suffer and will continue to pray for strength and courage. Our sixth child has XLMR- x linked mental retardation and we are trying to adopt two HIV+ boys with special needs which will give us ten children aged nine and under. I feel like our other children are learning compassion along with us, but it is frightening to even just think of leaving our seven or eight little ones for only two weeks to go to Russia (especially the XLMR one) and the strain that will be on them. I will pray that the Lord will strengthen your children and encourage them. That they will be blessed through adversity. Prayers with you.

  17. I am praying for you. I’ve had two of my kids have open heart surgery and one who had leukemia. I have some idea of how surreal this all feels. I’m sorry I know this is hard. You are not alone and believe it or not someday you will be able to see blessings in what you went through. You feel free to be angry and to keep right on being Apollo’s best toughest advocate. That is your stewardship. The doctors don’t know him, it’s their job to listen to you. If they are good doctors they know that and will. Don’t ever apologize for being pushing for your child. It could and may have save his life.

  18. I am praying for your whole family. A change in routine is always hard, but it also makes siblings even closer. my brother spent many long wks at Vanderbilt when he was 10. He was dying of Rocky Mountain Spotted fever. It was caught so late, it was a horrible sickness. He was dying, and no one could stop it. we spent wks and wks with friends, neighbors, being driven back and forth to my mama and brother in the hosp. We were homeschooled, and that made it easier. We didnt have to go to school and perform there daily. In the end, God brought a miracle to my brother, there is no medically sound reason that he lived. Science was wrong for him, he is a strong 26 yr old who is incredibly smart and happy. It was a long road, but it made us closer. It created a greater bond than we had before. your children are strong, this will be a hard time for you all of course but you will all do well.

  19. How do I add the button?

    • Anna- cut and paste the code from the box- put it as a text widget onto your blog. Let me know if it works for you… I want to spred the word about him 🙂

      Sent from my iPhone

  20. Was praying for a safe investigation and an answer – so pleased, although I know in some ways this is just the beginning. I will be praying for Apollo and you all on this journey, and especially you and Chuck for wisdom in all your choices for Apollo and everyone.
    much love Victoria

  21. My son who is now 20 was born with Cardiac Total Anomalous Pulmonary Venous Return , it was a rough two weeks in a NICU until they found the reason he was blue. I remember the feeing still when they finally found out what was wrong and that it could be fixed. Your son is lucky to have you as a parent who has kept on asking questions, until the right answers were found.

  22. Hi Renee. I’m thinking about you guys a ton! So, so glad you’ve gotten to the bottom of discovering the whys of Apollo’s health issues. Huge step forward. The days ahead look hard. I’m cheering you on and praying for you all.

  23. Here is a practical question, looking ahead to the time of Apollo’s surgery: what stores (groceries, household supplies) are near you? For those of us too far away to bring meals over while he is in the hospital, perhaps we could send gift cards instead.

  24. I am sorry for little Apollo’s difficulties, and I am thankful you are finding answers now. I can understand your frustration with some of the medical profession…..believe me….we lost a little one to “error”…..but on my own road to healing, I have found “forgiveness” toward those who honestly didn’t know better at the time…..I have learned to forgive their humanness. Human nature wants someone to blame…..and I am very human….but God is merciful, and He has given me the comfort I needed instead of the “justice” I thought I deserved. It didn’t happen overnight…..I will continue to pray for all of you.

Please share your thoughts!