My little sister Janice was super sweet and dropped everything to come and help me while Nathan was in the hospital. She's a very go-getter kind of person and she helped get my house back in order along with doing some badly needed projects.
Here is what we did:
Finish putting together Nathan's room with the BYU banner, pictures, and a growth chart.
She also helped me redo the bar stools to add a better fabric and a protective cover to them. I loved the way they turned out!
We scrubbed the whole house, got all of the laundry done (the amount of laundry I had to do could have sent anyone into a serious depression), the bathrooms truly scrubbed like they should be, labeled my food storage, and installed a new dishwasher. Yeah, our junky cheap dishwasher quit working a couple of months ago and so Janice took me to get a new one and Tammy's sweet husband Ben installed it for us. Its amazing what a working dishwasher can do to help keep a kitchen clean.
I have the best little sister in the world. Thanks Janice for all of your help!
One of the best parts of Primary's is the Forever Young Zone. On Wednesday, Janice & I took Nathan for a little trip in a wagon over there to play. He loved the Thomas the Train and also loved just riding around in the wagon. When Nathan first got up to walk he looked as if he had never taken a step before. Shaky as he was he got right back up and tried again. That is very symoblic of Nathan's attitude/approach to life thus far. I realize he doesn't know life any differently, but I could never have endured what this little guy has had to suffer through.
If I had to sit in my bed all day long being poked and prodded, I'd try to find something that I liked to pass the time too. Thankfully I'm past my thumb sucking stage, but from this picture I'm guessing that Nathan will keep this up until at least 4th grade. These pictures were taken the day after his surgery last week. He's such a cutie!
If you look closely you'll see that Nathan had his IV in his right thumb. The IV went bad later that evening and they had to stick it in his left thumb instead. It was hard to see him screaming for an hour signing "ALL DONE" frantically with his free left hand. He was pretty upset that they took his favorite thumb to suck on too!
What a crazy couple of days in the hospital! Nathan has done really well this time, and the best part is that the doctor DID NOT have to redo his nissen! He told me that this has happened only a couple of times (2) in the past 5 years with patients like Nathan and that he has had do a couple of hundred of them.
Anyway, Nathan is home and doing well. We got home yesterday afternoon and as soon as Ellie got home from preschool, Nathan was SO EXCITED to see her. He was happy to see Dad, but Ellie is the main focus in his little world. He kissed her several times and giggled as he tried to chase her. I don't know if we'll have more children or not, but there is a pretty special bond between Ellie & Nathan. Nathan just adores his sister.
As far as the echo went, it did get done and the results were read to me yesterday. Nathan's heart has gotten a little bit bigger than last time in the right ventricle, the pulmonary valve is pretty leaky, and now his tricuspid valve is also leaking. The tricsupid valve is likely leaking with the change in pressures from the right ventricle. The tricupsid valve issue is not an original defect in his heart and has been added to the Tetralogy of Fallot issue. The echo report stated that Nathan has severe pulmonary insufficiency.
Cardiology said that I have to remember that Nathan's heart is "fixed" to the extend that they are able. This does not mean that problems don't exist anymore. Its just going to be a life long issue that is not going to magically go away (as much as I would like to). Still, its hard to read those words: SEVERE PULMONARY INSUFFICIENCY.
I need to make a call to the sleep doctor's department (Dr. Daftery) to see if there is anything in addition to the oxygen that should be done for Nathan. I'm a little nervous to make the call because the doctor's always seem to find just ONE MORE THING.
We appreciate the thoughts and prayers for Nathan this week. This has been one of his best surgeries to recover from. In the next day or two I'll have to download the pictures showing Nathan's coping mechanisms in the PICU and the cute puppy that came to visit him again the in the hospital.
Kath & I decided to go get some lunch at the University Cafeteria instead of the good ol' Rainbow Cafe. While we were gone, I got a call from the cardiology receptionist saying that they hadn't received the orders for Nathan's echo and so they wouldn't be doing it today.
WHAT THE !*%@#$
Kath & I ditched our lunches and raced back to Primary's to go talk to the right department. I called the ENT first whose nurse said it was the sleep doctor who was supposed to send the order. I went to them and then they said they couldn't find that he ever needed one. I told them our plight and that Nathan was almost done in the OR. They called the charge nurse for the hospital and she then went with me to talk to the underpaid and under appreciated receptionist in cardiology. The receptionist was very MATTER OF FACT. That's when the charge nurse went and paged Dr. Park in the ER. Dr. Park came right down to talk to the nurse and gave the verbal go ahead for Nathan's echo.
The sleep doctor's department said it was cardiology's fault, ENT's nurse said it was the sleep doc's fault. Dr. Downey's office set up the echo, but said it was the ENT's job to send the echo order.
Do you see a pattern of pointing fingers and not taking responsibility?
I can't believe that someone in the chain dropped the ball and that Nathan almost got a separate trip to the OR just for a sedated echo. Everyone at Primary's works as a team, but no one wants to fill out the right paperwork. Good grief.
And the thing that made me the most upset? While I was downstairs chasing down the right people to get the echo done, Dr. Downey came searching for me in the surgical waiting area and I wasn't there. The receptionist assured me that Dr. Downey would come and look for me, but I want to know what happened now instead of in 3-4 hours when the doctor is done with a different surgery.
I have never been so infuriated at this hospital in the last 21 months as I have been today.
This morning Nathan went in for his hernia repair and to have his nissen redone. He's always such a happy baby when he goes in for surgery which I've decided makes it almost harder to hand him over. A dose of versed in the nose made him extremely happy go lucky and loopy. He only cried a little when he was handed over to the anesthesiologist. I was VERY impressed with the anesthesiologist who took time to go over Nathan's very lengthy history and to tell me her plan of helping Nathan get the breathing tube out easier. Nathan's sleep study was rushed for this surgery and the results showed that Nathan's severe obstructive sleep apnea was worse than at this time last year. That was very disturbing to Jake and I, especially as the ENT and sleep doctor were concerned that Nathan may have possibly developed pulmonary hypertension. After a lot of phone calls on Friday, it was decided that while Nathan was already in surgery a sedated echo would be performed to check on his heart. One thing that I appreciate about Nathan's doctors at Primary's is that they are open about speaking with us (Dr. Park called my cell phone twice last week to speak with me concerning Nathan's apnea instead of Nathan going in for the doctor visit) and that they work well with each other in determining what is best for Nathan. It is a team approach and no one does anything to Nathan without consulting cardiology and the ENT. Did I mention that I Dr. Park is my favorite doctor of Nathan's?
Since Jake had very little sick leave after his tumor surgery, Kathleen, Jake's older sister, took time off to come and sit with me in the waiting area. She's such a great sister in law and Nathan loves her. Every child needs an Aunt Kath.
I'll post more as the surgery progresses. Nathan is an extremely hard poke and even though he went into surgery at 9:45 a.m., the surgery didn't start until 10:40 a.m. I'm glad that they wait to put the IV in after he's asleep! Poor little guy!
I shouldn't have given Elisabeth the middle name of Louise. Mischief or even Messy would have had more application to her personality. Don't get me wrong. I love her dearly, but sometimes she tries Jake and my patience to the core. Yesterday was one of those days.
I came home with the kids yesterday afternoon after spending the morning at Primary's to get Nathan's necessary lab work done. I was tired and so I put Nathan in his crib to eat and have a nap (a few plush benefits to a G-tube) and then I went downstairs to sit and rest on the couch. Nathan was quiet and I thought Elisabeth was working on a coloring project or playing Barbies. I think it was only about a half an hour before I went to check on the kids. Ellie was laughing hysterically and Nathan was screeching at his sister. I walked in and Nathan's hair was covered with Aquaphor and baby lotion. Ellie was no where to be found. She had ran and hid in the bathroom closet. She knew she was in trouble. She had covered herself from head to toe with baby powder. The bathroom was COVERED in baby powder too. I don't get why she feels the need to do this kind of stuff. Ugh.
I put both kids in the bath and had to use adult clarifying shampoo to get it out. I bought a bottle of the salon strength kind last year after Ellie aquaphored herself. Are you noticing a trend?
Nathan wasn't terribly happy about what his sister had done and Ellie got to spend 45 minutes on her bed thinking about what she had done. It would have been longer if I hadn't needed to go to choir and conduct.
If she's pulling these kind of stunts at 4, what is she going to do at 16? The thought makes me shutter.
We had the Ellinger Family Halloween party on the 17th and had such a great time! The costumes were awesome (leave it to Dan & Calli to come up with such fun costumes year after year!), and the kids loved the different activities. The kids decorated some Halloween masks, had a cake walk that Nathan won, and played Bingo. The adults had a competition of trying to eat the donuts off the string the fastest. I won with Kath coming in a VERY CLOSE second. We look forward to this party every year.
Grandma also took a "teaching moment" and talked with the kids about washing their hands. Now I have an OCD child who thinks that she has to wash her hands every couple of minutes. Poor Mallory was afraid of the germs after Grandma told her that children were dying from the H1N1 flu for not washing their hands! There are certainly worse things that a child could be OCD over than washing hands:).
Elisabeth and Libby both dressed as Snow White, Nathan as Nemo, Mallory as Cinderella, Keaton was Luke Skywalker, Kierra as Princess Leah, and Kylan as Yoda. Nathan didn't like the head of his costume, but he was VERY PROUD of being Nemo!
On Tuesday I took Nathan to see Dr. Downey, a surgeon in the General Pediatric Surgery Department, to have another look at his paresphogeal hernia. The doctor talked with me about Nathan's symptoms and about what my thoughts were on having this operation done. We sat down together and reviewed the upper GI test on the computer. Dr. Downey thought very carefully about it for a couple of minutes, found the upper GI down in January last year, and then said, "I don't like it, but this has got to be fixed. The hernia is much to large and the opening is too tight." A complication of this surgery is that he has to have his nissen redone because that is where the hernia is. I was sick about this because the nissen was one of Nathan's harder surgeries for him. I trust Dr. Downey though. When I had talked to Nathan's pediatrician who had done his residency at Primary's, he commented that Dr. Downey was one of the most conservative surgeons at Primary's and that he would tell me what would need to be done with Nathan's hernia and I should trust him. Both Jake and I really like Dr. Downey and his team of nurses, but this is going to be Nathan's 17th surgery and he'll be a couple of days shy of 21 months when he has this done.
Due to the doctor's schedule, Nathan is going to be having surgery again on Monday. After this last "incident" in the hospital Nathan will again get to spend some quality time in the intensive care unit. Knock on wood, but for being a heart baby, that seems to be the least of Nathan's problems. The surgery will be done laproscopically, but because of old scar tissue from both his heart surgery and nissen/g-tube surgery its going to be harder to recover from than last time.
Monday, the 19th, is the "Big Day" so to speak. It will be just 3 weeks shy of Jake having his bone tumor removed from his femur. The tumor was benign, but he is still on crutches and had his 27 staples removed from his leg last Tuesday. I'll be caring for two invalids which is why I am grateful that Janice is being extremely sweet and coming from Nashville to help me for a couple of days next week. I couldn't have been given a better little sister!
I hope that this will be Nathan's last surgery for a while and that life can resume to being somewhat normal, whatever that may be.
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."