On the 12th of September, Nathan and I made the trek up to Primary Children's again to have a "sleep" study. Kristin and Shawn were extremely sweet and let Elisabeth sleep over that night since I would be gone with Nathan and Jake had to get up extremely early the next morning and go to Utah Valley University and take the Praxis test to be able to teach 8th grade science in Utah.
Nathan and I got up to Primary's about an hour before our actual appointment and so we went to visit and friends Elaina and Hollie. Hollie was just on her way out the door, but she spent a couple of minutes talking with me about what the study would be like also a little about her sweet baby girl. Elaina is such a doll; she just needs to get out of that hospital! She has been hospitalized since April. Originally she was diagnosed with Tetralogy, like Nathan, but her heart has many more nuances and she was diagnosed with DiGeorge Syndrome. Nathan and Elaina have many of the same issues and so its been wonderful to have a good friend like Hollie to talk with. She says she's grateful by the support that has been given by others; little does she know what a support she has been to me!
After chatting with Hollie, I took Nathan down to the sleep study lab and got him dressed in his jammies and gave him his medicine. That is when the real fun began. Nathan was fairly mellow about having his head covered, until the cap went on. He began to fuss and the nurses commented that of all the babies that they've had to do this to that he was the most mild mannered about it. I was able to get Nathan to sleep by 9:30. It didn't take long for him to start crying in his sleep (like always). He also tried to pull off some of the leads. The nurse kept having to pop her head in every half and hour or so until about 11:00 p.m. That is when Nathan's oxygen levels kept decreasing and constantly stayed at or below 85. The nurse ended up sticking him on oxygen and then the adding an extra cannula in his mouth to read the CO2 levels better. Meanwhile, I had my own blanket and pillow on a pullout couch. I don't think I got more than 2-3 hours of sleep that night. I can honestly say though that Nathan's sleep wasn't too different from his sleep patterns at home.
As I write this post (2 weeks after the fact), I got the news back from the ENT that Nathan has severe constrictive sleep apnea. We are going to be seeing the ENT again soon and are now adding a sleep doctor to the circle of our closest friends at Primary's.
As this is going to be a journal of sorts at the end of the year, I'm writing down Nathan's doctors.
Cardiology - Dr. Collin Cowley Cardiothorathic Surgeon - John Hawkins Gastroenterologist - Dr. Molly O'Gorman Dietician - Sharlene Coombs G-tube/Missen doctor - Dr. Earl Downey ENT - Dr. Albert Park Plastic Surgeon - Dr. Faizi Siddiqi Orthopedic Speciality (helmet) - Shield's Orthotics (they have 2 doctors that see Nathan) Orthodontics - Dr. Dwane Yamishiro (cleft prothesis) Genetics Doctor: Dr. David Viskochil Speech Therapist (Primary Children's) - Helena Taylor Speech Therapist (Kids Who Count) - Mary Walker Primary Care Pediatrician - Dr. John Bennett Sleep Doctor: ???
Hmm... this circle of "friends" is growing a little bigger than I would like. No wonder we are up at Primary's an average of 4-5 times a month ever since Nathan was released from the NICU on March 22nd!
1 in every 120 babies are born with a heart defect. What if that ONE was YOURS?
Our Little Man
We unknowingly became elite members of a world no one wants to be a part of on January 22, 2008 with the birth of our little boy, Nathan, but looking back we can't imagine life any differently. Nathan has had to endure 21 surgeries in the first 25 months of his life including open heart surgery for Tetralogy of Fallot, jaw surgery at 3 days old, 5 cleft surgeries and many surgeries involving his airway, ears, and eyes. He has a g-tube which he uses as his sole source of nutrition. In February 2010 he underwent a second jaw distraction as he was showing signs of right heart failure.
Nathan is our little hero; our witness that prayers are answered individually and that we couldn't be blessed with better family and friends to support us.
One day my world came crashing down, I'll never be the same. They told me that my baby was sick. I thought, "Am I to blame"? I don't think I can handle this. I am really not that strong. It seemed my heart was breaking. I have loved him for so long. I will not give up on this child. I will listen to your advice. I will give my son any chance. No matter what the price. I will learn all that I need To help my baby thrive. I'll even use that feeding tube. My child must survive! Will he need a lot of therapy? Will he gain the needed weight? Please God, help me do this. As I accept our fate. When the monitors beep at night, it serves as my reminder. How many parents would love that sound. Tomorrow I will be kinder. As another Angel earns his wings, I run to my baby's bed. I watch him sleep for quite a while. I bend down and kiss his head. I cry for the parents whose hearts have been broken. I look to You wondering why? Oh Lord, I just can't know your ways.... no matter how I try. And yet, I trust you hold his life, and guide us through each day. My mind says savor each moment he's here, but my heart begs, "PLEASE let him stay"! From pacing the surgical waiting room, to sitting by his bed. From wishing for a good nights sleep, to learning every med. From wondering, "Will he be alright?", to watching him reach out his hands. With every smile my heart just melts, despite life's harsh demands. For all who see that faded line. I look to them and smile. You see my child is loved so much. I would face ANY trial. That scar I trace with my finger (It's the door to his beautiful heart). God must have known how much I'd love him (Just as He loved him from the start). A heart mom is always a heart mom. Now wise beyond her years. For those who have angels in heaven, Our hearts share in all of your tears. Every day I will try and remember, I was chosen for him (and no other). I will always embrace that beautiful day....... When I became a "Heart Mother".
~Stephanie HustedMommy to Braeden HLHS post FontanCarepage name: babyhusted
I "borrowed" this poem off of another blog. I'm not sure who the author is, but it truly touched my heart.(Original version found at http://garyandcamille.blogspot.com Thank you!) Heart Poem:
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday. And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."