Nathan post operation at 2:00 p.m. He came back very stable and with good vital signs.
Nathan has never liked having a breathing tube! Today was no exception. The nurses put sock on his hands and then pinned the socks to a blanket so he wouldn't be grabbing to take out the tube.
Jake and I feel very blessed that Nathan's surgery had a good outcome. Dr. Hawkins was able to patch Nathan's ventricular septal defect without any complications. However, when he began to work on Nathan's pulmonary valve, the valve only measured at 5 -6 mm instead of the 8 mm that the echo cardiogram has shown. Due to this, Dr. Hawkins had to cut into the valve to open it up and allow for adequate blood flow. We were told by Dr. Hawkins that Nathan will now need the pulmonary valve replaced sometime in his life. He was hoping that Nathan would make it to be a teenager before this had to be done so that his heart could grow into almost an adult size and that the replacement would be permanent. Jake was given the patch as a "souvenir" of the day. We were able to see how large the patch was that was used in Nathan's heart. I'm so grateful that everything went so well.
Nathan was taken to the PICU and placed in bed 9. The surgeon, PICU Attending, Cardiologist, Cardiologist Fellow, Resident, Nurse Practitioner, and Anesthesiologist all explained to Jake and I that they were going to be very cautious about taken Nathan off of the ventilator. We explained to all of them that Nathan had been on a breathing machine several times before and that because of his narrowed airway we were in no hurry to have him taken off of the machine. We requested that he not be taken off of the ventilator until the next day so that he wouldn't struggle so much. All of these people kept apologizing about the fact that they were uncomfortable about taking him off of the machine a couple of hours after surgery as was normal protocol. The nurse, Heather Pederson, kept laughing that we had the same conversation with 6 different people who kept apologizing to us over and over when in fact they were doing exactly what we wanted them to!
I made a very interesting connection with Heather, Nathan's first nurse. We were casually talking about babysitting and daycare when she asked what my job was. I told her I was a tax auditor for the state. She told me that her mother in law had recently been audited and asked if I knew who the auditor might have been. I had to laugh; I had completed the audit last summer. I knew her mother in law very well and we swapped stories about our encounters with her. She took such good care of Nathan. He couldn't have been in better hands.
Jake and I were so tired that we got a room at the University Guest House and left a 7:00 p.m. during the nursing change to check into our room. I had thought about going back later to check on Nathan. I was so tired that I fell asleep on the bed at 7:30 and didn't wake up until almost 7:30 the next morning. It was the best thing I could have done. When we got to the hospital this morning we were very alert and asking for specific doctors, dietitians, and occupational therapists to come and evaluate Nathan. We were excited that Dr. Downey, the surgeon who placed Nathan's button, came down himself to say hi and to check on his "little buddy". The dietitian gave us goals that Nathan needed for feeding and getting him off of pump feedings at night. She was SO HELPFUL! Everything was written down and a pamphlet was given to us about when and how to introduce new foods to him. The OT/PT also came and talked to us about Nathan's oral aversion. She asked for his history of attempts at feeding him. I told her EVERYTHING which took about 20 minutes or so. When I was finished I asked what she thought and what she might be able to add. "There's not much I have to add", she said. She wrote down some information and said that she'd come on Monday to work with him. After she left Jake said to me, "If you'd gone on a couple of more minutes I think she would have offered you a job!"
Nathan woke up for a couple of minutes this afternoon. He wanted more than anything to suck on his thumb. I took his fingers out of his sock and let him suck to his hearts content. He also held onto our hands and coo for a couple of minutes. Nathan started having the hiccups and his face suddenly dropped. It was easy to tell he was in a great deal of pain and so the nurse gave him another dose of morphine. He quickly drifted off to sleep. We covered his little body with a warm blanket and then left for the afternoon. It is difficult to be torn between your children. Elisabeth wanted us to come and get her which was understandable since we hadn't seen her in two days. We left the PICU at about 3:15 p.m. and headed home to pick up Elisabeth from Kathleen, Jake's sister.
During all of this Nathan has been having adequate blood draining from the site. He is quite swollen and the lasik hasn't kick in as well as the doctors would like. He was given a different drug this morning to help him pee off the extra fluid he is retaining in his body. His vital signs are excellent and he had no problem coming off of the ventilator this morning.
We are so appreciative of every one's thoughts and prayers in Nathan's behalf. We know his name was submitted in several temples and that many people fasted for him this past Sunday. Jake and I have felt very peaceful these last couple of days. Elisabeth, even at the young age of 3, has felt this peace. After Jake and his dad gave Nathan a priesthood blessing on Wednesday evening Jake's mom became a little emotional. Elisabeth commented, "Don't worry. Nathan is going to be just fine." She has shown such simple faith and has become such a source of strength to Jake and myself.
I am so grateful for our set of problems instead of some of the other children's I have seen in the PICU. It is a very humbling experience to see your child in such a state. I cannot imagine how our Heavenly Father felt watching Christ suffer in every one's behalf. I have come to understand that we all need to be more compassionate to one another to help ease each other's burdens. That is what Nathan's birth has taught me.
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."