Happy 10th Anniversary

Dear Gene                                                August 4,2017

           Ten years ago today I said, "I do". Ten years ago I couldn't fathom what today would be for us. Ten years ago at our reception I remember dancing our first dance to "Remember When" by Alan Jackson with the entire wedding party. As we danced I dreamed of what our remember whens would look like....just in the past 5 years since our 5th anniversary so much has happened.

Remember when...sending Tristan to school and the intense anxiety of letting him go.

Remember when...Tristan said his first complete sentence of "Hi , Mom!". 

Remember when..driving to Walt Disney World on a whim was easy and effortless.

Remember when...we ran a half marathon in the pouring rain at midnight.

Remember when...our days were spent driving to therapy and doctor appointments.

Remember when...we sold our house--just thinking change was coming soon.

Remember when...we moved into the rental I despised. 

Remember when...we packed our entire house for a move to Texas. Scrambling because the movers showed up a day early.

Remember when..The Fontan Surgery caused sleepless nights and worry.

Remember when...bird sitting end in disaster. 

All these remember whens and more...not a single one of them I would want to take back. They were all spent with you and couldn't imagine my life without you. Thank you for the best 10 years of my life.  I look forward to the many years of "remember whens" to come.

Happy 10th Anniversary Gene.

I love you always and forever,

ME




Dear Gene                                               August 4, 2012

         I can hardly believe 5 years has gone by already. Little did I know on August 4, 2007 what an adventure it would be and I dare say there is plenty of adventure left. We dated for 2 years before we got married and I knew you very well before making the life long commitment, but I truly believe marriage is a leap of faith. We dip our feet to test the waters but then dive in head first with marriage. God was on my side when he planned our paths to meet ---and I am forever grateful.
          I knew you would be a wonderful husband and companion. I am astounded at what a fantastic father you are. Tristan is one lucky boy to call you, "Dad". These past three years have been particularly adventurous and stressful with the pregnancy and birth of our son. If I didn't have you, I truly would have a mental breakdown. No one else in my life understands how overwhelming HLHS can be. No one else goes to every single pediatrician, cardiology, GI, and therapy visit with me. No else knows the defeated and complete failure feeling you get when one of the doctors or therapists does not see the progress they wanted; giving a scolding look and asks that you try harder.  Nor do they understand the frustration when one contradicts what another specialist says. Any goal that was set and achieved takes hours and hours of work, sweat and tears, but no one allows us to celebrate for even a second because there is a new goal to meet. Our victory laps are short lived. Very few people know how hard it is to keep going; to keep trying. No one else in my life understands how it feels to be told you can't allow your baby to cry or he will die. No one else in my life understands what it is like to watch your child cry so hard that he arrests right before your very own eyes and you stay up until 2 am planning his funeral just in case. No one else knows the anxiety you feel about exposing your child to day cares, play groups and public places because a common virus or stomach bug could land your son in the ICU. But at the same time you know we want our child to live a normal life as possible. Without you Gene, I'd be insane. You are a 100% partner and husband. It never enters my mind to question whether you'll be here for me. When I feel like a failure as a pastor's wife and parent from all of the pressure, I know you have my back. Without having to say a word, I know you truly understand. And that means the world to me.

I've said it before and I'll say it again...

I am amazed how much you love me. When I say the words, "I love you", I really do mean it. Our journey is young but has been adventurous. I cannot imagine enduring these past five years with anyone but you. I truly look forward to spending decades of beautiful scenery with you. Filled with hills, valleys, road detours, blinking yellow lights to caution us to slow down, and bumps in the road to remind us how smooth our ride had been. If we ever get turned around and it seems like we've lost our way, don't be afraid. I promise I will sit by the roadside with you. I will take your hand and retrace every step we made until we figure out where we went wrong. Together we will plot out a new adventure and forgive each other for all the wrong turns we've made. At our journey's end our bodies may fail and our minds might betray us, but when I look into the rear view mirror your reflection in my heart will be the man I pledged my life and love to on August 4, 2007.

I love you always and forever.
Happy Anniversary, Gene.

Love,
ME






I will Be here - Steven Curtis Chapman

ECHO Results

Seriously was not happy. He just woke up from sedation in this picture.

As some of you read on our Facebook posts, Friday's ECHO was a bit of a disaster. We had pre-registered and paid our coinsurance prior to Friday morning with St. Mary's in West Palm Beach thinking it would speed the admission along. Not so much. Tristan had been NPO (nothing by mouth --food or drink) since the evening prior around 8:30 pm. Of all mornings, Tristan decided to wake up at 4:30 am. He spent the next 5 hours crying for water or something to drink. We arrived at 9:30 as ordered with the hopes it would happen quickly. We sat in the outpatient waiting room for 30 minutes before being called back into the examining area. Just as we were about to get the pulse ox on him, the lights went out. Fifteen seconds later the generators kicked in, but then the anesthesiologist refused to give Tristan sedation while the outpatient hospital building was working on generators. Long story short, he finally got sedated (took 4 of us to force the medicine down his throat and prevent him from vomiting it up) and had the hour long ECHO at 11:45 am. He got a very rude awakening with a needle being stuck in his arm as we were trying to get some lab work on him too. He finally got to drink water shortly after 1 pm and we were on the road home around 1:30 pm.

I got the result this afternoon. The ECHO looked fine. The Tricuspid Valve Regurgitation (TR) remains mild to moderate. No change. They had a hard time getting a clear picture of the "connections " (Superior Vena Cava to the Pulmonary Artery), but felt there were no issues. We were hoping they would stop the Digoxin, but the decision was to keep Tristan on it based on the TR. Blood work came back okay. Tristan's electrolytes were all within normal limits, but his liver enzymes were elevated. The cardiologist said this is a "normal" side effect from the heart condition. The liver is not getting enough blood flow so certain levels show elevated (liver enzymes). For the medical people out there, the AST was 75 and the ALT was 87. They also did a pre-albumin (looking at nutrition status) and it was 15 (normal is 22-40). The pro-BNP (Brain Natriuretic Peptide) came back at 223. The pro-BNP is not something to get too excited about. There really is not a lot of literature out there that says how this number correlates to children vs adults.

Next step? Ann called Miami Children's Hospital and is awaiting to hear back from them. We've been playing a sort of phone tag with the cardiology department. There was some question whether Miami would want to do their own sedated ECHO, but Dr. Debrolet said she would accept the latest ECHO and asked we have them send it down. We think we will have an appointment either August 17th or 24th. Remember, this is just so they can get a feel for Tristan. We have not seen the cardiologist there in close to 2 years. We want their thoughts on Tristan weight, heart status, and what they believe will be the timeline for the 3rd opem heart surgery. So don't think Tristan is in a crisis mode or that we are seriously worried about something. We are not worried ---but always concerned nonetheless. 

Between now and the visit to Miami Children's, we are eagerly awaiting a visit from G&P Johnson and Aunt Kathleen. I am sure it will be a fun week for Tristan to see his grandparents and aunt.

Thanks for reading and as always, we are truly grateful for your prayers.


Updated at 10:58 EST: 


Appointment at Miami Children's will be August 24th at 9:45 a.m. Will see cardiologist and then see the nutritionist there also afterwards. 

The Happenings and doctor visits

WARNING: THIS IS A LONG POST

It's been an exciting couple of months. And the end of May Ann's Mom and Step-Dad came into town for a long weekend. It was great to see Tristan take to them so quickly and loved to be around them. I am fairly certain the feeling was mutual and both parties look forward to seeing one another again in September. 

Next, Tristan had a "big boy" milestone of getting his first real hair cut (outside of mom and dad cutting it when he was sleeping). The woman/hair dresser was so kind and understanding. Tristan sat on Gene's lap while Ann tried to keep him distracted. Distraction was a HUGE fail. Tristan is VERY defensive to anyone touching him that he does not know. The hair cut took all of about 15 minutes but he managed cry himself into hysterics and vomit all over Gene, himself, the chair and the floor.....3 times. The lovely ladies tried to make Tristan happy by offering stickers and lollipops, but Tristan wasn't having any of it. The end result was the revealing of a little boy under all that shaggy hair, which was nice to see. Although we will be more than happy if we don't have to do that again for another 2-3 months.  

Father's Day was a nice quiet Sunday. While Tristan slept we got our annual Gene and Tristan hand picture. Tristan is not so cooperative so we had to resort to doing during nap time. Makes me look forward to our annual Thanksgiving card--NOT. Oh well, maybe by the time he is 2.5 years old, he'll be more cooperative. (Yes, I am snickering too).

A week ago we were in Lake Mary, FL for the FL/GA District Convention. It was a very rainy weekend thanks to Tropical Storm Debby so there was little sight seeing by Ann and Tristan. The weekend went by so fast that Ann was not able to see many of the Pastor Wives (PWs) that she wanted to. Perhaps in October when we go back for another conference there will be more visiting. On a positive note, Ann got to share how she and Amy came to the US and give a cheer for Lutheran Family and Children Services. If it made one person realize the importance of Lutheran Services and Outreach, it was worth it!

And finally...the dreaded doctor visits. We had a cardiology visit this past Friday. Tristan had a couple of days of 4+ vomiting, poor urine output, and not even wanting water (which he loves). His energy level was good and his mood was not poor so we kept an eye on him. After a couple of days of this, we got a little nervous and called the cardiologist. We already had the schedule appointment for Friday, so the decision was to keep an eye on him and bring him in for the appointment. To say that Tristan was a mad man is putting it nicely. He started screaming from the moment we walked into the examining room. We could barely get his weight and height. Getting a 12 lead EKG was out of the question. They started putting on the leads and stopped because Tristan started vomiting from screaming so hard. Bottom line, the cardiologist was happy with his heart function from what he could tell. His O2 sats in his hands were 83-84% on room air. The cardiologist was happy with the way he looked but once again talked about Tristan's slow weight gain. The third open heart surgery is always looming and we know we need to get Tristan to the 30-35 lbs mark. Dr. S talked about perhaps putting in the G-Tube. It is completely backwards from the norm and he admitted it. Most babies are given G-tubes and then it is removed around 2-2.5 years of age. Putting in a G-tube in a 2.5 year old is almost unheard of. He even admitted he could not remember the last time they suggested it with a patient at Tristan's age. Dr. S knows we see a GI doctor down the hall from his office but suggested we get a second opinion from Miami Children's. Our current GI doctor wants us to avoid the G-tube as long as Tristan is gaining weight, no matter how small. Dr. S wants to see if another GI doctor agrees.

On another note, our Speech Therapist quit working for Early Interventions, so we are awaiting to hear about a new Speech Therapist. There is a woman who is known for working with children that have oral feeding and speech delays and working wonders. The bad news is that she is out of net work for Blue Cross Blue Shield. So the process of getting Tristan in to see her is going to take some time with all of the paper work involved between insurance and the state. UGH.

Today, Tristan had his scheduled GI appointment. Truthfully we were nervous. Our hope was for Tristan to be around 25 lbs. Weight today was 23 lbs and 2 oz. Height was 33 and a quarter inches. He gained 1 lbs and 1/2 inch in height for the 10 weeks. I was sure Dr. Stephens was going to ream us. The complete opposite happened. He felt Tristan was gaining and looked proportional. He felt the slow down of weight gain is normal for a 2+ year old and was happy with it. We talked about trying to use Benecalorie to add more calories and working on getting Tristan to eat more by mouth (solid food wise). Dr. Stephen's did not bring up the G-tube. We had an open dialogue about expectations of weight gain with two parents that are no giants by any stretch of the imagination. Wanting Tristan to be 30 lbs right now might not be realistic and Tristan could be fighting genetics. Dr. Stephen's agreed.

So what's next?? 

This coming Friday, Tristan has a sedated ECHO scheduled. If the ECHO looks good, we foresee him coming off of the Digoxin until after the 3rd open heart surgery. It would be nice to have one less medication to force down him.

After thinking long and hard about it, we think we are going to make an appointment with a cardiologist at Miami Children's.  Why? Just so that someone down there has a look at Tristan and is up to date on everything. They will be doing the 3rd surgery so it might be nice to see what they have to say. How do they feel about Tristan's weight? What time table do they see for the Fontan? If they are not happy with the weight gain, then we will move forward to seeing a GI doc for a second opinion in Miami. Ann is going to wait until after the ECHO on Friday to make the appointment. The hope is that the ECHO films can be sent down to Miami Children's prior to the appointment so Tristan won't have to go through another one and they can have all the info needed to give us a good impression of Tristan's heart function.

We'll be sure to update again once the ECHO is done and when we have the results.