Happy Reformation Day/Happy Halloween

Happy Reformation Day/Halloween Everyone!

As you can tell, Tristan is Superman for Halloween this year.  We attempted to take him down to a neighbor's house to see them and to test the whole "Trick or Treating" process. It was a NO-GO. My afraid of everyone little guy wanted nothing to do with it.  Oh well, we tried. Maybe next year.

I added some pictures from our pumpkin carving and our Disney World trip. We went to Orlando with Gene's parents and sister for the weekend. It was wonderful time and Tristan loved Disney World. We went at the perfect time. Crowds were down and the weather was perfect. We were able to enjoy it without any meltdowns or fits; not too many people can say that with a 2 year old at Disney World.

Have a safe and fun Halloween!

Breaking A Parenting Rule...and Well Worth It.

Today I broke a parenting rule. You know...the ones that every mother quickly pulls out of their book shelf and declares it the best book ever written on sleep training: Becoming Baby Wise by Gary Ezzo and Robert Bucknam, The No-cry Sleep Solution by Elizabeth Pantley, or Sleeping Through the Night by Jodi Mindell. Yes, I too have all of those books and have read them cover to cover. But this morning I broke The Rule. You know, the one that they say never, ever do. Do not under any circumstance give your wide wake baby/child attention in the middle of the night---no eye contact, no talking except to say "Night Night softly", simply pat them on the back, and walk away.

This morning I woke up to the sounds of the pitter- patter of my son's feet running to our king size bed. I sat up just in time to see him head for Gene's side to pull on his arm. If I didn't know any better, I'd think it was Christmas morning with an over anxious, excited child. Truthfully, it sounded like he had a stuffy nose and was having issues breathing. Gene made one attempt to get Tristan back to bed. We thought he was back down. No sir. This time it was my turn. Laying him in his bed, I tried to get him go back down. I even laid down next to him, hoping he would snuggle up and go back to sleep. My little boy sat up and with a big grin started his happy babbling sounds. WE'RE UP! It's Sunday morning at 3 a.m. Gene has to be at church to do teaching and preaching, which means he needs his sleep. I boldly broke the Golden Rule, took Tristan downstairs to his playroom, made myself some coffee, and then I remembered....

It was almost a year ago when Tristan did this same behavior at an ungodly hour in the morning. At 16 months old, Dad headed off to church while Tristan and I went for a wagon morning ride. Together, Tristan and I experienced our first sunrise. The sun coming up over the horizon reminded me how grateful I was that Tristan made it out of the ICU. He didn't have tubes, cords, or machines to worry about. I could pick my son up and walk around the neighborhood---something I had only dreamt about for the first 6 months of his life. 

And the birth of this blog.

Down in his playroom we played together. We knocked Melissa& Doug blocks down, attempted to work on wooden puzzles and practiced our new matching game. With my hot mug of coffee in hand and partial opened eyes, I smiled. Tristan was exceptionally "verbal" at 3 a.m. His babbling and sounds were almost non-stop and LOUD. I was surprised he didn't wake up Daddy. Apparently everything is pretty darn hilarious at 4 a.m. Tristan had a lot on his mind and was happily sharing it with me. 

It's 10:20 a.m. and you're finally sound asleep. Tristan, Some day you'll read this blog. As your mom I want you to remember something....Whether you are 2,  or 17 coming home from prom, or 21 in college worried about a big exam, or 35 up feeding a newborn son of your own---I will always be happy to sit and listen to you; even at 3 in the morning. These moments are special to me. They remind me how God continues to walk with us --not just in the storm. And. I. Am. So. Thankful.

So never be afraid to smile at me, call me on the phone, or Facetime me at 3 in the morning. I promise those moments will mean the world to me and I will ponder each of them deeply in my heart.

I love you, Tristan Noah Earl Johnson. Always and forever.  

(yawning) Can we just agree not to do this every single morning, okay?

St. Louis, ST, OT, and GI... Oh My!

Happy Autumn! Where did the time go? Hard to believe October is just a few days away. I am sure most of you are enjoying the changing leaves and the cool crisps evenings that come with the season of Fall. 

Tropical Storm Isaac (later Hurricane Isaac) cooperated and allowed us to attend the family reunion in St. Louis for Ann's maternal side of the family. It was a whirlwind trip over Labor Weekend but well worth it. We were able to introduce Tristan to his great aunts and uncle and also to some cousins too. Ninety percent of the family members were able to make it and those who couldn't were missed and thoughts of often throughout the weekend. Unfortunately Tropical Storm Isaac followed us to the midwest, so many of the outdoor plans were canceled. No matter! It was a great weekend anyway. We plan to make a trip back to St. Louis July 2013. The Lutheran Church's Synodical Convention will be held there next near, so we hope to be back for that.

I've had several people ask me about how Speech Therapy is going. In a word, "fair". Could it be better? Yes. Could it be worse? Yes. The key is Tristan, himself. And yes, I'll admit that we could work a little harder too. Tristan has developed such a fear of any kind of healthcare provider that his defense mechanisms are extremely heightened. He distrusts almost everyone to the point that quickly spirals into a "fight or flight" response. Just driving to the doctor's office or therapy office causes Tristan to get anxious. He looks out the car window and watches the route we are taking. If it appears to be the same route, he starts to breathe quickly, starts to whimper. Next thing you know he is gagging and vomiting in the car. The other day we were driving to the store. It was the same route. Before we could even get to the store, he threw up. We had to turn around, returned back home to change his clothing and then went back to the store. That's how crazy his anxiety is. No matter how many times we said, "We are going to the store", he could not calm himself down. Don't get me wrong....it is getting better. The last two times he went to OT, he cried less than 90 seconds and went to play. Truthfully, we laughed  (crying was not an option) because Tristan got himself all worked up, but within 20 seconds was happily playing with the therapist! All that drama in the car for nothing! 

I am learning that language is going to come slowly for Tristan. He is just not that interested; no matter the reward. For example, yesterday I brought out a laundry basket. We hide them in our house because Tristan LOVES getting a ride in a basket. He squeals with laughter and throws a huge fit when you put it away. My back starts to hurt from carrying a 25 lbs child in it, but he doesn't care; he wants another ride. Anyway, I brought out and knew immediately he would want more and more and MORE rides. So I put him in it and gave him a quick ride. Placed the basket down and asked, "More" or "All done"? Giving him a sign for each word. I asked him 3 times and then took his hands to form the sign more when he fused because I wasn't picking up the basket. I forced his hands to make the sign and said, "Okay! I'll give you more!" and gave him a ride. Gene and I did this for over 45 minutes. Do you think he ever made the sign for us without us having to do it hand over hand? NOPE. When we just sat there waiting for him to give us a sign, he would just look at us blankly or start playing with the sides of the basket. That is how stubborn my son is. Later, we moved to the water hose outside. As some of you saw from the video on Facebook, he LOVES feeling the water on his hands. Once again, we did the same routine...."More or All done"?.  We did this again for 30 minutes. Never got him to sign it once.  We stopped spraying the water for him, so what did he do? He walked away to explore something else instead! Patience....he is teaching us patience. 

Today we went to see his GI specialist. The last visit was 3 months prior so weight gain and height increase was to be expected. During the 45 minute car ride down to West Palm Beach, Tristan got anxious and whimpered. Thankfully, he never threw up. Got into the office and started to cry. He really didn't like to be weighed but did not get to the point of vomiting. While we waited for Dr Stephens to come into examining room, we played with Tristan on the floor with some toys we brought and feed him some cheese and crackers. Here is the irony....When Dr. Stephens walked into the room, he started to cry. It lasted maybe 30 seconds. Dr. Stephens has a son about 9 months younger than Tristan. He is really great about not touching Tristan for the first 15 minutes of any exam. He always asks us his questions first and gets all the info he needs. So here, Tristan was anxious all the way down to the medical office, he cried when he got to the office and for 30 seconds when Dr. Stephens walked into the room....then what? He started playing with Dr. Stephens. Tristan would walk up to Dr. Stephens, look at him, squeeze his knee, and run across the room laughing. Over and over again Tristan did this. It was hilarious. Tristan works himself in anticipation of something but once he's there, he's fine.  We are hoping this is a short lived phase and it will get better.

His weight today was 25 lbs and 3 oz. Height 34 and 1/4 inches. Dr. Stephens was happy with his wt and ht ratio. He would like to see Tristan eating more solids by mouth but okay with how Tristan looks. G-tube continues to be out of the question and we won't return until January for another visit unless we see weight loss or anything of concern.

Tomorrow, Amy (Ann's sister) comes into town for a quick visit. I know Ann is looking forward to it and it will be another chance for Tristan to get to know his Aunt.

As always, we thank everyone who asks how Tristan is doing and we appreciate all the love you show us and him.

Visit to Miami Children's Hospital

                           (Hanging out in the waiting room)


We just got back from Miami Children's Hospital about an hour ago. Two out of three members of the Johnson Family are napping from the lack of sleep last night. We drove down on Thursday evening and stayed in a hotel because of the early morning appointment. Tristan never does well sleeping away from his own bed, so his parents not either. Thankfully, that is the worst thing I can say about the Cardiology and Dietician visit.

Just so we are clear, we went to Miami Children's to get their thoughts on Tristan's cardiac function. There is nothing that had us extremely alarmed or worried. As parents, we were getting conflicting impressions of Tristan's weight gain and need for intervention. Our local Cardiology office has 5 Cardiologists that rotate seeing the patients. One cardiologist was concerned about the slow weight gain and suggested a G-tube be placed. Another cardiologist in the office thought quick weight gain would be too hard on Tristan's heart and wanted us to slow it down. The GI doc wants to avoid the G- tube at all cost and felt Tristan was in a good place. We went to Miami to see their cardiologist because in the end, they will make the final decision when the Fontan (3rd surgery) will be done. They will be the ones performing the surgery, so their input is important. And finally, they had not seen Tristan since he was 6 months old. We decided it might be good for them to be updated and have a current medical status.

After a long day of sitting at the hospital, we came home knowing that Tristan is stable. In some ways it feels like the trip was not necessary because no recommendations were given, but at the same time we have validation that and an "estimated" timeline. With clothes on and no shoes, Tristan's weight was 25.4 lbs. He is in the 10th percentile on the growth chart.  Looking at the weight and height ratio, Tristan is at the 99% mark. That means he is perfectly proportional. The dietician (the same one he had while inpatient), basically said to keep doing exactly what we've been doing. Keep encouraging the po (by mouth) intake and supplementing with the Pediasure 1.5. She thinks the G-tube is completely unnecessary and way over the top. She would only suggest the G-tube if Tristan dropped below the 3rd percentile for weight and height. Ann also asked about the Pre-Albumin from July. It was low despite the high protein from the Pediasure 1.5. Melissa (dietician) basically laughed it off. Said that the half life is so fast that without a series, the lab is worthless in regards to his nutrition status.

Tristan was completely uncooperative to get an accurate O2 sat, blood pressure or EKG, but our local Cardiologist had sent down the films from the Sedated ECHO we had in July. The films were re-read by the cardiologist at Miami Children's Hospital (MCH) and the impression is that the heart is stable for an HLHS child. There was nothing they saw that was alarming. Right now, they are in no rush to do the Fontan. Unless Tristan shows signs that he needs it, the 3rd open heart surgery won't happen until closer to 4 or 5 years of age. Something drastically would have to change for the surgery to come sooner.

So in the end, Dr. Dobrolet said to keep doing exactly what we are doing. She had no recommendation of changes.

We did get the chance to see some of Tristan's nurses on the cardiac unit. Tristan wasn't happy to be surrounded by nurses, but everyone remark on how good Tristan looked: his coloring, his size, his weight. I wanted to take some pictures of Tristan with them, but that was not going to happen. I was only able to get one picture of Tristan and his primary nurse Dafenie, but Tristan is crying and it's not very pretty. 

Now onto better things.....we're all going to St. Louis next week for a family reunion on Ann's maternal side of the family. We look forward to seeing everyone and I am sure pictures and another updated blog to follow. 

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. 

Singing Happy Birthday to Tristan

For those who wanted to see this.....

Ann's Mom and Step-Dad are in town. Will be posting pictures and another blog soon.

Happy 2nd Birthday My Son

Someone woke up to a room full of balloons

Dear Tristan,


Happy Birthday my son. Two years ago my life was changed forever.....for the better.  You gave me the title of "mother" and the honor has been all mine.


Thumbing through the pages of your photo albums and I am flooded with emotions.  I remember the morning you were born like it was yesterday: seeing your face for the first time, hearing you cry, crying uncontrollably as I watched the video of your baptism, holding you for the first time. Your short life has brought me so many highs and lows and everything in between. When I look at you Tristan, I see myself.  Your physical growth matches my personal growth. You have changed me for the better a thousand- fold.


I have a unique position that most will never have. I have seen the hospital bed from every single angle. First as patient when I was a child with surgeries, body casts, wheelchair, crutches. Then as a staff nurse caring for children with cancer, battling for their life. Next I entered the world of utilization review and case management with the eyes of medical necessity and health care dollar spending....But you my son, have completed me. The final and most important part missing was the experience as a mother with a chronic condition child.


People tell me all the time that God blessed you with parents that are a pastor and a nurse. I do believe that God is omniscience, but I think they got it backwards. Tristan you are so good for me.  I am now slow to judge and quick to give understanding. Less likely to give criticism and more likely to give praise. You've taught me that caring and compassion are two very different words---- not just semantics. Before you came a long I would see a special needs child in a grocery store or shopping center and give an encouraging smile to the child and mother. I cared, so I smiled. The parents had my admiration and respect, but deep down (if I were to be really honest) it was mixed with pity. I felt sorry for that mother and child; thinking to myself, "That poor mother". Tristan, you taught me the real meaning of the word, compassion. Now when I see a special needs child, I no longer have pity. I have compassion So many people showed compassion to us during your first year of life and continue to support us today. Our lives were forever impacted by strangers sending up cards, money and prayers. You helped me believe there are still kind people in this world. Now when I come upon a special child and her parents,
I see the hundred of hours spent in doctor offices, therapy visits and schools. I know the frustration of advocating for your child to get treatment, medications, and services. I feel the heartache of stares, questions and hurtful comments. I no longer just smile. The compassion both taught and experienced now drives me to walk over and give a word of encouragement, offer to be of assistance, and ask if there is anything I do to help.


Tristan, you taught me patience. Not everything is going to be on my time table, but yours.  (I realize this is an ongoing lesson and I've got to be retaught often). Whether it was rolling over, sitting up, crawling or walking---everything was accomplished on your own time. And now comes talking and eating..... I know you'll do it when you are ready. I promise Tristan, we'll make it through this stage together too.


I love you Tristan Noah with every inch of my being. You make my soul smile and my heart leap with your laugh. Some day I will hear you call out my name but for now, your lit up face when I walk into the room is all the "Mommy" I need to hear.


Thank you my son for being you and for all the things you've taught me. I've got so much to learn....and I can't wait.


Love always,


Mommy

 

Doctors Visits

Hello! As promised, an update post doctors visits. 


First of all, on April 13 Tristan had his GI appointment. He last saw Dr. John Stephen 7 weeks prior with the weight of 20 lbs 2 oz. On this visit, Tristan's weight was 22 lbs and 4 oz. So a 2 lbs and 2 oz gain in 7 weeks! That's a lot of weight! Dr. Stephens was delighted with the weight gain, but concerned how Cardiology would feel about it. Worried the rapid weight gain might be too taxing on the heart. There are no signs of edema or swelling. Tristan has a nice round face and even carries a little pot belly. Dr. Stephen's recommendation was to drop down to 16 oz of Pediasure 1.5 and 8 oz of normal Pediasure per day (total 24 oz). Plus, start pushing the solid food intake. He requested we come back for another follow up visit in 12 weeks. Due to his vacation and such, we are returning at the end of June (28th). As Ann was leaving, he complimented us on how well we've done with Tristan both with the feeding and also with the parenting of a cardiac child. He talked about how many of his chronic condition kids seem to rule the roost. When they come for a visit, he said the child destroys the examining room and pounds on his computer while the parents sit there and say nothing. He appreciated the fact we use the word, "No" and were engaged with Tristan. As parents, we feel under the microscope all the time. It was nice to hear some encouragement and positive comments.


Today, we had the cardiology appointment and saw Dr. Marshall Lewis. Tristan had not been to the cardiologist since late December 2011. The good news is that Tristan appears fairly stable. His oxygen saturation was 82% for his foot. His blood pressure was good. The echo cardiogram from January was read by colleague of Dr. Lewis and she noted that there was moderate Tricuspid Valve Regurgitation (TR), but Dr. Lewis said by listening to Tristan via stethoscope, he could not hear it. Of course the echocardiogram would be more accurate, but the good news is that it can't be all that bad if it is not heard. Dr. Lewis is concerned about the rapid weight gain. We told him about Dr. Stephen (GI) plan to decrease the amount of Pediasure 1.5 to 16 oz per day. Dr. Lewis suggested we completely go back to regular Pediasure. A phone call has been made to Dr. Stephen's office informing him that his concern was accurate. We are awaiting to see what he wants to do now. Plan: Another sedated echo in July with a follow up appointment with Dr. Chandrasekhar (the cardiologist that has seen Tristan the most lately) within a week. If Tristan is stable, the plan is to then stop the Digoxin, increase the Aspirin and follow up every 3 months. The third surgery (Fontan) won't happen for another year or so.


As you can imagine the slowing down of weight gain is a complete 180 degrees from what we've been working on. For the past 22 months all we've done is focus heavily on getting weight on Tristan. First it was enough weight for the second surgery and then he was diagnosed with failure to thrive. Mentally, the concern about gaining too much now is understandable. We don't want to make is cardiac load too much for Tristan's weak heart, but at the same time it is hard to change one's thinking. For so long it was EAT, EAT, EAT....WEIGHT, WEIGHT, WEIGHT....


Truthfully, in some ways it is relief. The stress of getting him to drink the Pediasure 1.5 has been weighing so heavily on us. The pressure at times can be overwhelming. The thought of perhaps backing off on some of the Pediasure 1.5 to perhaps 18-20 oz per day and maybe really focusing on getting him to eat regular table food would be a good goal. But we await to hear from GI before we change anything.


Yes, there are many ups and downs with having a cardiac child. We're learning to roll with the punches and do what is best for Tristan. One big grin like the one in the picture, makes it all worth it!


On another note, Gene's parents are in town for the week to help out while Gene is in Orlando for a conference/seminar. Life is always better when Granny and Paw are here....Tristan had not seen them in a couple of months, but he picked up where they left off. All smiles and laughter....Can you hear the giggling from here?

Happy Easter

He is risen indeed, Alleluia!


The season of Lent and Easter was a busy one for this Johnson family! Nothing too out of the ordinary for a pastor, his and wife and child. We are happy to report since the last post Tristan has been steadily gaining weight. He is still dealing with the solid oral feeding issue, but we know this is not going resolve quickly. We see the GI doctor this coming Friday and then have a Cardiology appointment the following Monday. We'll be sure to give an update after those two visits. 


Below I've added some pictures from this morning. We had a visitor this morning who dropped off some gifts in celebration of Easter. What a surprise! Then we headed off to church for the second service. Tristan is now sound asleep, taking  a nap.





And finally, we added a festive tune. If you know Ann well, you won't even have to guess which song it is. Click on the play arrow and enjoy!

Busy January Month/ Heart Awareness Month

 



  Wow! This has been a crazy month.  At the beginning of the month we went on a seven day cruise with Gene's parents and sister. We had a wonderful time visiting St. Maarten, Puerto Rico and Haiti. It was nice to get away and just relax....okay relax as much as you can with a one year old. Still, Tristan did much better than we anticipated and we look forward to going on another one soon (?). 


Next Ann's Dad and Step-Mom came to visit. Tristan had not seen the Schroeder grandparents since May 2011. We were not sure how long it would take him to warm up to them, but it seemed almost instant. We had a wonderful time spending time together. The weather was perfect for a day at the beach and checking out the manatees. Time flew by quickly and before we knew it, it was time to say goodbye. Ann's Mom and Step-Dad were supposed to visit a day later, but with battling sinus infections they decided to post pone their visit.


We look forward to the return of Gene's sister and Mom in about 2 weeks. We truly enjoy friends and family making trips down to see us and we appreciate all the time and effort everyone has made to make it happen.


Tristan is battling his third cold of the season. It's been a week already and it has only gotten slightly better. His nose is like a faucet. His demeanor and energy level is normal and his lungs sound clear so we think this is just a typical childhood cold. His solid food intake has dropped, but he is at least still taking the Pediasure...with some encouragement and convincing. He had another GI appointment last Friday (1/27/12). In three weeks, Tristan had only gained one ounce. One lousy ounce. The MD decided to chalk it up to the cold and we will revisit him in a month. We were instructed to weigh him weekly. If we did not see an increase or if he loses weight, we are supposed to call the MD to get him in sooner. Here's hoping to be above the 20 lb mark by Feb 24th!


When we got back from the cruise, Tristan also had his sedated ECHO. The results are good. His heart looks stable and no real changes to worry about. We go back in three months for another check up.


Soap box Alert....


Okay, the dreaded awareness talk. I promise, I only say this once at this time of the year. February is Heart Awareness Month. February 7th-14th is specifically Congenital Heart Defect Awareness Week. A small reminder that 1 in 100 babies are born with a heart defect. More children die of a Congenital Heart Defect (CHD) each year than all pediatric cancers combined. Yet research for pediatric oncology gets 5 times more money. But wait!!......what about The American Heart Association, don't they do a lot of good? Yes! They do a lot to promote public awareness, but The American Heart Association directs only $.30 of every dollar donated for research. The rest of it goes for administration costs, education, and fundraising. Of that $.30 only $.01 goes toward CHD research. (http://www.itsmyheart.org/chd-information/chd-facts/). No, I don't want money taken away from pediatric oncology research.  I just want more research money being used for CHD. 
  
We all hope and pray Tristan will live a long and happy life. The sad statistic is 50% of children with HLHS have a life span of about 10 years.  If Tristan lives to be the same age as I am , he will be considered ancient in the HLHS world. I am asking everyone to spread awareness so that maybe....some day...... we will know what exactly causes HLHS and can prevent it....and maybe....some day....no child will have to fight for his/her life from the moment they are born.

Below are some pictures from the last month

GI Appointment

Tristan has his second GI appointment in 2 weeks. The good new? He gained 11 oz in the two weeks! The G-tube talk has been officially tabled....for at least 3 more weeks. We'll return to the GI office the last week of January to do another weight check. We are so happy with this progress! Tristan's oral feeding is getting better with more practice. It's still at the beginning phase but the volume of food is getting higher. Instead of getting about 5-6 macaroni noodles down in one sitting, we are seeing 12-16! That is more than double from 3 weeks ago. 


His lack of talking is still an issue. He was tested a couple weeks ago and it was determined he has a true delay. We will start Speech Therapy for talking soon (not just for eating). 


Pray the positive progress continues. 


We will update about the sedated ECHO on January 17th.


(BTW--the nice bruise you see on the head is from him running into our living room end table).