2012 Christmas Card

<div style="text-align:center;"><div><a href="http://www.vistaprint.com/vp/gateway.aspx?s=5462298015&preurl=%2fshare-design.aspx%3fdoc_id%3d2437688443%26shopper_id%3d0ELD0LT3137X10ELFLEL4VG60FHPW54V%26xnav%3dsharesource_4%26share_key%3d0839efba-064a-44b4-9640-9b9baaeaebc7" target="blank"><img src="http://www.vistaprint.com/lp.aspx?alt_doc_id=M57FK-X1A91-4E7&width=250&shopper_id=0ELD0LT3137X10ELFLEL4VG60FHPW54V" /></a></div><div><a href="http://www.vistaprint.com/christmas-cards.aspx?pfid=243" target="_blank" />Holiday 4" x 8" Cards</a> by <a href="http://www.vistaprint.com" target="_blank">Vistaprint</a></div></div>

Tucker's one year cardiology checkup

Today Gary and I took Tucker to see Dr Porras at Children's Hospital for his 1 year checkup. Dr. Porras couldn't believe how well he looked. He was happy with his weight, just under 19 pounds. His EKG looked great and he even discontinued his Lasix. We couldn't be happier.

Happy 1st Birthday Tucker!

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Family Update.

We have been Busy, Busy this summer.

June
Spencer graduated from Preschool and I do not feel like we have stopped since. Spencer and Tucker are both doing great. And eveyday I thank God that we have both of our children under one roof.

July
This was the month that we deceided to take our first family of 4 vacation. We decided to go to Maine to visit, Aunt Amanda's family and my best friend Kelli and her family.

August
Tucker met with Dr. Rollins in Neurology to see how delayed he is compared to other children in his age range.

September
This month we met with Dr Roberts in Genetics to make sure that Tucker is developing normally and to find out if he has any underlying diagnosis. We will have our DNA pulled for the research as Tucker is not asymmetric with a few things. More to come...

October
Well it finally has arrived... our miracle has turned one! What an amazing event ! We celebrated in style at George Hill Farm in Lancaster, MA. Our family and friends went apple picking and brought donations for Tucker's friends at the hospital. We collected over 400 hats and over 100 blankets. Tucker also came down with his first cold of this winter season.

November
Pneumonia again. Unbelievable! Hoping for a better December.

Family Update

Well, where to begin....We have been very busy lately. House Update-We have have been in our new home for over 3 months now and we can't imagine living anywhere else. We have plenty of room for the buisness and for our growing family. we might only have about 5 more boxes to get through unpacking and we will be completely moved in. Then the house improvements start. Heaven Scent Soaps-The soap buisness has been picking up and now that summer is upon us, I am happy to inform everyone that we will be selling our soap at the Lancaster Farmers Market all this summer. Mother's Day-A week before Mother's day we had Tucker circumsied, this was a very complicated decision for us. Due to Tucker's medical history I can assure you that I did not want to initially have this elective procedure done. After consulting a pediatric surgeon about Tucker being toungue tied, and discussing having that corrected ASAP, due mainly to his feeding issues, we choose to have both procedure's done at the same time. They assured us that they would use the less invasive procedure and instead of cutting Tucker and stitching him, they would use the Bell system on him. There would be less risk of bleeding this way. We got a green light from our cardiologist, and Tucker did amazing the first few days. Don't get me wrong...He was cranky, but everything went according to plan until MOTHER"S DAY MORNING! Tucker hadn't been eating as much as he should have been, due to the pain and some teething issues. Overnight he must of retained fluid and his penis swelled up to a ridiculous size, when we changed him in the morning, we called our crdiologist and the Plastic surgeon and rushed him into Boston where they cut off the bell. I am happy to say that he was back to normal about 2 days later, but man did he gave us quite a scare. Tucker-We had Tucker's followup today with Dr. Porras. We are happy to report that he is doing amazing. He weighed in at a whopping 15lbs, 8oz. He checked him for fluid and couldn't believe how pink he is. We got to walk up to 8 east and visit with Tucker's Favorite NP, Ann Marie. She was a godsent to us when we were in-patient there. Spencer-Our little athlete...Spencer has been playing Spring soccer this year and is in his first ear of Tee-Ball. He hs excelled at al of them. He is certainly a little sport's nut! Mental note: Focus more on academics... Spencer has been having more good days in preschool and he is getting so excited for Kindergarten, he had a blast at his Kindergarten orientation, he liked his teacher and his classroom and he can't wait to start camp this summer. I can't believe our little boy is all grown up. (Sniff-Sniff) Gary's Dad-Last week very suddenly Gary's dad passed away. It is so hard to put my shock into words, as I was just saying the other day that we havent seen him in too long and that we would be calling him to set something up for his upcoming birthday. It is truly devistating to see the pain that Gary is experiencing with the loss of his dad. Although their relationship was a complicated one, I can truly say that his father made him the amazing dad that he is today...Spencer and Tucker will thank their grandfather for that for the rest of their lives. (Maybe their Grandmother had a hand in that too!) Gratitude-Gary and I talk frequently about how lucky we are to have such great friends and family around us, we truly feel blessed to have so much support from all of you and such an outpouring of unconditional love. We are the luckiest people in the world. That's all for now. XO

Day of Surgery

Today Tucker is having his tongue-tie removed. This will hopefully make it easier for him to take bottles and eat. It should also help him avoid the speech classes that tongue-tied children often have to take. Our morning started at 3:00am so that we could leave the house by 4:00am. We are scheduled for first case of the day which is 6:00am check-in and 7:30am surgery. The doctors came and took Tucker away for surgery right on schedule and at 8:00am he was in the operating room.

Update
Tucker came out of surgery at 9:00am and he promptly pulled out his IV. This took away the anesthesiologists ability to give the instantaneous pain medication. So he could only have Tylenol which took awhile to kick in. We are told he is doing great now that he has calmed down and we should be able to head for home around noon. He had very little bleeding an only received 75cc's of IV fluid.

Overdue Update

The last few weeks have been going really well for Tucker.  He has been eating much better and is on his way to eating as much as a healthy 6 month old. He still needs to work on getting a just a little more formula in him per day, but is doing really well with solid foods. Spencer's behavior has also been improving and we are no longer convinced he is going to end up in prison when hes older. He still has some problems listening and is occasionally stubbornly defiant. The soap buisness has been getting really busy and we can barely make the soap fast enough due to the curing time. Michelle has gotten a couple of stores to sell our handmade soap and we are going to try to do more craft shows this year. Everything at the house is still going pretty well, we just wish we had more time to get stuff done. Between the buisness, appointments, t-ball, soccer, and our jobs we can only get stuff done by sleeping less. We really hope Tucker is ready for a sleepover soon, because we could really use 8 hours of uninterrupted sleep.

Post Glenn - Four weeks later

The second half of last week did not go well at all. Gary really got the rough days last week because Tucker pulled out his NG tube twice and required two separate trips to the ER to get it replaced. This week we where going to both work a full week and send Tucker to daycare, but he ended up catching some chest cold and bad cough in one of his trips to the ER. So Gary had to stay home with him on Monday and Tuesday we had an appointment with Spencer's allergy specialist in Boston. Hopefully the rest of the week will go better.

Post Glenn - Three Weeks Later

Tucker is continuing to gaining weight and his scars are almost completely healed. He is still in some pain when he sneezes or coughs which is difficult for him because the feeding tube tickles his nose. Hopefully he can continue to have a healthy weight gain so we can get this tube removed again. He needs to take about 18 ounces a day, and he is only taking about 8 ounces by mouth, so the rest is pumped into his stomach overnight. He is loving the step 1 baby food and would eat as much as we will give him. Unfortunately we need to slowly add different foods and work the amount up slowly. The goal for Gary and I was to split up the work week, and each work a few days. This is the trial run to see if Tucker is ready to go to daycare without needing the constant attention.

We will let you know how it goes.

Post Glenn - Two weeks later

Tucker's recovery is progressing, but slowly. He is only now slowly getting off of the Tylenol and Advil rotation. Our poor little guy would cry out in pain every time he would cough or sneeze. He is also teething and sometimes this makes it difficult to figure out what hurts. We met with Tuckers pediatrician on Monday and he is back to gaining weight, and received the four month vaccinations he missed last time they rushed us to Children's. On Tuesday we met with Tucker's cardiologist Dr. Porras. Tuckers main incision is healing very well, and the doctor removed the stitch where the central line was attached to the heart. Tucker is eating solid foods now and was doing well, so the doctor pulled out the NG tube. We need to still keep him out of daycare for another couple of weeks to make sure he does not catch anything until he is completely healed. If we can keep him healthy we won't need to see the cardiologist for 3 months, which just blows our mind after the biweekly visits we previously had made. Our RN should be by the house today to just check Tucker out and make sure he is continuing to gain weight and progress developmentally.

Everything at the house is starting to come together. We had an army of friends and family over the day of the move and the weekend after to help get all the boxes unpacked and everything put into it's place. The only real problem we had was a cord for the new oven and a computer glitch with our package order with Verizon and Direct TV. Our confirmation said the phone and Internet would be installed between 12:00 and 4:00, but Verizon never showed up. It took about an hour on the phone and 4 different departments to figure out what happened. It also took a few visits to the house for Verizon to get the phone working, and we finally got Internet on Tuesday night. Without Internet we could not update the blog, we apologize to everyone who was starting to worry.

Day 7 and Day 8...We are Home!

Mommy talked to Dr. Porras on Monday and begged him to send us home. He knows how confident we are with the NG tube feeds and all of the medications, so we got the OK for Tucker to continue his recovery at home. Tucker is still taking his Lasix, Zantac and now 40 mg of Aspirin for his medications. The dietician thinks the polycose that was added to his formula to make it 30 calorie formula made it sweeter, and may explain why he is not eating. The plan was to slowly ramp him back up to 30 calories and then slowly bring him back to 20 calorie formula, hopefully this will solve his feeding issues. At home everything is hectic because almost everything was packed because we did not think we were returning to the apartment before the move to our new house. So everyone is pretty much down to two changes of clothing and all of our dishes, silverware and food were packed. Spencer has a couple of his action figures and his Legos for toys, and we had to find something to make Tuckers formula in. The next couple of days will be crazy and we may not be able to update the blog until Friday night or Saturday morning because Gary has to disconnect all of the cable boxes, TV's and the computer and wireless so the stuff is ready when the movers arrive on Friday.

Post Glenn - Night of Day 6

Tucker got his NG tube earlier today, so at least now we know he's is getting some calories to help with the healing. He has been getting 100 cc's by the NG tube every 4 hours. He still is not liking the Nutramagin by mouth, but we need to get him feeding at least partially by mouth so he does not forget how to eat. His echocardiogram is scheduled for 8:00 am, so he cannot get formula after 2:00 am and only clear liquids until 5:00 am. Tomorrow we will be meeting with the nutrition team to see if they may have a few tricks to maybe sweeten the formula to get him to take it by mouth and then slowly transition him back to strait formula. We also need to discuss whether he needs to stay on the 30 calorie formula and when we should start to introduce him to solid foods which is usually about 4-6 months. I will update tomorrow after we get the results from the echocardiogram. Hopefully we will have great night and thank you for keeping us in your prayers.

Post Glenn - Morning of Day 6

Tucker barely ate anything at all last night. They think that he really started to like the breast milk and now won't go back to the formula. Only problem is that all the breast milk was frozen from back when mommy was still pumping, and now mommy cannot make anymore. He will be getting the NG tube today, because they cannot let him get any further behind on calories and fluids. And because he has the echocardiogram which he needs to fast for tomorrow. We have a couple of friends coming over to help with the last of the painting and cleaning before we start moving stuff in. And Gary went to pick up some furniture from his mom for our dining room, then he will be on his way back to Chilren's so I can head home and get Spencer ready for preschool tomorrow.

Post Glenn - Night of Day 5

Tucker is back to not eating enough. He ate 70 cc's of formula at 1:00 pm, 14 cc's at 5:00 pm, and 20 cc's at 9:00 pm. Looks like he is going to get the NG feeding tube again unless he does better overnight. Gary is heading home tonite to do some painting at the new house and then spend the night with Spencer. Hopefully he will get a chance to do some of the laundry and other chores that are that we are falling behind on.

Post Glenn - Midday of Day 5

Tucker was due to eat at 9:00 am, so we tried to give him another 100 cc's since he did so well overnight. He unfortunately only took half, but that is ok for this early in the day. I can now pick him up and hold him as long as we do not pick him up under the arms. The wire that they use to hold the sternum back together is much stronger than his little bones. If we where to pick him up under the arms he could quite easily break a rib and it could puncture an organ. I was able to bring him down to his X-ray, and we can now bring him to all of his testing and appointments. Hopefully we can get a chance to take him for a walk later. We are supposed to have a few visitors today and that's great it really helps to break up our day.

Post Glenn - Morning of Day 5

Well the aerobed makes a huge difference in quality of sleep. It was probably the first time I slept for more than 4 hours at the hospital. Tucker had a really good night, I am sure the oxicodone helped. He was back to eating 100 cc's per feeding or a little more than 3 oz. Overnight Danielle was also able to give him a sponge bath, and he is now completely off of the oxygen. What a difference a new day can be.

Post Glenn - Night of Day 4

Tucker has not really eaten since 9:00 am this morning. He has been extremely unhappy and has been crying on and off for hours. He is now back on oxicodone, We have been told that day 3 after the Glenn is always the worst day. Tucker was finally starting to calm down just before midnight and Gary got some much needed rest. We brought the aerobed in this time, and I think I will sleep much better. Hopefully the overnight goes well and tomorrow is a better day.

Post Glenn - Midday of Day 4

Tucker had another nebulizer treatment at 10:30 am because he still has some fluid in his lungs. He also had another x-ray at noon, and it looks a bit better then yesterday. I just met with Dr. Samantha Butler from the cardiac neurodevelopmental program. Children with heart defects often have developmental delays, so now Children's has this program to catch these kids up an give them the best quality of life possible. The program will provide ongoing support as Tucker grows and develops. I think we would like to use this program more and drop our current early intervention provider if possible, because there have been instances where we take time off of work and they just never show up and don't bother to call. Everyone here at Children's seem so knowledgable, and we have heard horror stories from some other parents about out of state hospitals and misdiagnosis's. Tucker did not eat at noon because I made the mistake of giving him his meds first, so he in now fast asleep. His bottle is good for an hour, so we will try again at 1:00 pm. We have gotten word that if all continues to progress we may be able to take Tucker home on Monday or Tuesday to continue his recovery in his normal surroundings.

Post Glenn - Morning of Day 4

Tucker had a little bit of a rough night. He is still being weaned off of the oxygen and overnight they dropped him down to half a liter. His sedated echo that was scheduled for 10:30 am was canceled. He had 70 cc's of formula at 9:00 am and is not eating as much as we would like. They say most kids barely eat after surgery and that he is doing really well. Gary arrived at 10:00 am for his shift and I was on my way home to spend a night with Spencer, who again is not listening very well at preschool. Then tomorrow Spencer has soccer and I really want to take him. I cannot wait to spend a night in my own bed.

Post Glenn - Night of Day 3

Well we are on 8 east...yay! Not too much happened today, Spencer came in with nana to see mommy and daddy. Tucker also had a few other visitors, Pam, Kevin and Isabella. And Tracy drove out from Worcester and brought me dinner. Yum!

Tucker is still on oxygen but he is down to 1 liter. He has a sedated echo scheduled for tomorrow at 10:30am however he is not eating very well. He also threw up all of his evening meds. Let's hope tomorrow is a better day.

Post Glenn - Midday of Day 3

Good news! Tuckers central line and chest tube are out! Yay! Baby steps. He is doing well he just took 90ml of breast milk that I had frozen several months ago in advance for his big surgery. His pacing wires are still in directly to his heart, these are kept inside of the chest in the event that they need to restart his heart in an emergency. He has been up most of the morning and we will be able to transition out of the CICU and over to 8 east.

On a side note one of our fellow heart families who are here from New York and have been awaiting a heart transplant for one amazing sixteen year old boy, they "got the call" yesterday. Connor and his dad have been here for almost 110 days straight. Their family is wonderful, they hug us in the hall and always pop their heads in to see how we are doing. The amazing surgeons here worked on putting Connors heart in all night last night. I just saw him in the unit and he is stable and his new heart is beating. It's scary to think that someday this might be us, since Tuckers next surgery, the Fontan will only last approximately 20 years. I guess that we will cross that bridge when we come over it, however, it's always in the back of our minds.

Post Glenn - Morning of Day 3

Tucker had a good night. He was able to have more sugar water every 4 hours. At his next feeding around 8:00 am, we can start giving him some formula. Over the last couple days his chest drain has gone from thick blood, to watery blood and is now mostly clear with a little orange tinge to it. Hopefully they will be able to pull it and the pacing wires out of his chest today. If so we may be able to go to the cardiac floor and out of CICU later today. Spencer did not listen at preschool very well yesterday, so we need to make sure we call him in the morning before school and have the talk about listening to his teachers. We will try to get another post up after the doctors do rounds in the morning and see what there plans for Tucker are today.

The next day : part 4

Tucker is still doing well. Apparently after the Glenn, kids have so much more blood flowing into there heads that they get a massive headache that lasts a few days until the body gets used to the extra bloodflow. Tucker is now on just Tylenol for pain and the diuretic Lasix to keep lungs clear of fluid. He has also had his first clear liquids "sugar water", and he was very angry when they would only give him 3 oz. Hope it's a much better night for him, he seems so much more comfortable without the breathing tube.

The next day: part 3

Gary and I went to the cafe to grab some lunch and when we returned Tucker was off the ventilator however now he is struggling with pain and grasping for air. He has just received a nebulizer treatment and we are waiting to see if he can have some clear liquids around 5 pm. hopefully all will continue to go well and we can leave the CICU and move to 8 east tomorrow. The only issue is when he moves we will lose our onsite housing, but we would also hate to keep it from a family in need. We are now heading off to a parent support group meeting, more to come later.

The next day - part 2

Tucker is again sedated a bit because he keeps trying to pull out his breathing tube. The morphine does not seem to do anything, so they are giving him demerol. Tucker is doing well enough to have his - lines taken out. They have also started giving him steroids to reduce the swelling around the breathing tube and it sounds like the current plan is to pull the breathing tube around this afternoon. He is still on morphine to control his pain so he is not kicking and trailing his arms as much as yesterday, so we believe that he is quite comfortable and able to maintain his pain.

Our apologies for not being able to return any of the text messages and calls that we have been receiving for updates. We are not allowed to use our phones on the floor. And we have also been having issues with being kicked off of the hospitals server. Since they do procedures by the bedside in the CICU there are always folks in the room to do "something".

More to come...

The next day: part 1

Gary and I are emotionally and physically drained. We got a wonderful visit from AnnMarie Baldwin, our NP that would call us weekly. We adore her and will miss her so much. I asked for special treatment on 8 east and asked for a great room and all of my favorite RN's. I wouldn't be surprised if we got it too, she loves Tucker. Since we dropped off a bunch of donations, which they couldn't believe the quantity btw, we got a very special visit from child life and received Tucker's favorite mobile.

We got away for dinner and went out to Boloco. Love that place! Treated myself to Starbucks and grabbed our bags from the car. (Michelle finally got to try the Tiramisu cake pop from Starbucks-yum!)

Tucker is still struggling with waking up and pain, he is attempting to breathe on his own but not consistently enough to have the tube removed. we are hoping to be taking it out in the early am.

The big day, part 4

Gary and I got to go see our boy in the CICU. He has tons of tubes in, but he looks really good. Our version of "good" is different than others. We are so very grateful that we got to tour the unit so we knew what to expect before this. I will not be posting photos on here until after we are out of the ICU. They are way graphic to handle.

It looks like they did close his chest, but he has pacing wires attached to the heart and a tube coming out of his chest draining the excess blood from surgery. He is off the heart and lung machine but he is still not currently breathing on his own. They are going to try around 9pm tonight to take him off the ventilator. Fingers crossed. They keep giving him meds to calm down because he keeps waking up and struggling to pull things out. They had to put arm cuffs on his arms and a banded blanket over him to keep him down, he is quite a little fighter! :o)

We finally got approved for our housing. We are staying in the hospital.

More to come...

The big day: part 3

Donnie came and took us to lunch. My aunt bought Gary and I a gift certificate to a place that we saw on the phantom gourmet. The Squealing Pig.

During our lunch they called and updated us when they put him on ECMO and when they took him off. (ECMO, which stands for Extracorporeal Membrane Oxygenation, is an advanced technology that functions as a replacement for a critically ill child's heart and lungs. It’s used to support a child who is awaiting surgery, or to give a child's vital organs time to recover from heart surgery or disease.). They asked us to come back because the surgeon will talk to us when he is finished. We hurried back to Children's.

Dr Emani came and got us, he told us that everything went good, and escorted us into a private room. He told us that he cut Tucker's two stints and performed the Glenn and when they were in there they noticed that the flow from the atrial septum was pretty minimal, so they had to stop the heart to go inside and increase the bloodflow. This was an unexpected step but felt that it was necessary to repair it while he was already in there. We are waiting in the cardiac ICU now, they are performing a few tests, EKG, ECHO, and am x-ray then he will come to the floor and we can see him.

The Big Day - Part 2

We are still trying to keep ourselves busy, so we made the trip to the car to grab the blanket and hat donations from our non-profit "Warming Hearts" for delivery to 8 west on the cardiac floor. At about 9:45 we got our first update that Tucker has all of his lines in and was under full sedation and they where about to make the first incision.
Then we made lunch plans to go to "The Squealing Pig" with Donnie to take our mind off of things.
We brought all of our stuff back to the NP office on the floor. Since we were part of the home monitoring program we brought back our scale and daily log book and now Tucker will Graduate to the surgical program NP program. This is so sad because I have really developed a relationship with our home NP Ann Marie Baldwin. Glad to be rid of that scale and daily checks of all sorts...but bittersweet to say goodbye to AnnMarie. :o(
Then we went to meet with Lauren, 8 east's cardiac child life specialist. She was thrilled to see us and our enormous box of donations. It really warmed my heart because there was a little girl sitting in the playroom. Please know how much it means to everyone on the floor that these were donated. They were speechless when they saw some of the numbers. We donated: 201 hats, 38 blankets and 1 bib that is a reminder not to pick the baby up under their arms. Love this idea and I will pursue making these going forward.

More to come.

The big day: Part 1

Gary and I woke up around 4:15am to bolus the last of Tucker's clear liquids. We showered finished packing, gave Spencer plenty of extra kisses. (He woke up early to say goodbye to us before we left.). We drove and parked at Children's. We checked in at admitting and of course since he is now starving, he started to scream. We were called in for vitals and walked up by 2 nurses that are conducting study called thermoregulation head wrap on baby's heads to warm them after surgery. The device is made of Mylar like marathon runners use. It is not yet approved yet, but it can't hurt so we sign up. We enter the OR area and there are bunches of beds waiting for little kids it's just so sad. We get placed into the last room next to the OR doors. This is very important, if you are ever in my situation with your child, please ask them to move your room before you get comfortable. We had to witness countless kids crying and being taken away from their parents. It was awful! Then you could hear the parents hysterical through the curtains. Ugh! Just awful!

Anesthesia came and checked in with us, Tucker was given a red colored drug through his tube to make him relax a little bit. They went over the plan and made sure that we were all on the same page. We kissed him on his forehead, told them to take good care of him and he was wisked away screaming too. Which is heartbreaking to hear down those empty OR rooms. We were walked out to the surgical RN liaison and asked our contact information. (Gary and I have chosen to not wait in the surgical wait room, as a gift to the other family's, we will go stir crazy there.) They told us that they will call us when they start, when he is put on the heart and lung machine, when he is taken off, when they finish, and again when he is moved out of the OR.
Then we checked in at family affairs for housing for tonight. They have immediate housing for the cardiac ICU patients. They are 85 percent sure that they will have a room available. If not we will have other options and one parent can sleep by his bedside. So our car is packed, we will deal with our sleeping arraignments later. We have a fantastic breakfast at Au Bon Pan, realize that I left our gift card at home, so mad! Only because I purchased one just for this visit. Ugh!

Then we went to the car and got the warming hearts hat and blanket donations and the scale from the car and headed to the 8th floor.

More to come...

Tuckers Glenn Pre-Op

Our day started at 4:20am so we would have time to shower and pack Tucker's day bag. We set out Spencer's clothes and gave him a kiss and got out of the house about 6:00 am.

7:00 am - arrived at Children's and off to patient check-in.
8:00 am - off to radiology for Tucker's X-Ray.
8:30 am - met with the anesthesiologist.
9:30 am- Echocardiogram and vitals "oxygenation and heart-rate" Tucker has been screaming the last 30 minutes.
10:00 am - off for blood-work, Tucker is still really fussy. Can't wait until they try to get a vein. We asked for Mrs. needle again (AKA Nina). She is amazing, got him on her second try.
11:00 am - Quick break for lunch.
12:00 noon - Met Dr.Porras in the hall on our way back. Tucker is sleeping so we are on our way to meet with the nurse practitioner first to go over how to prep his chest for tomorrows surgery.
1:00 pm - We just met with Dr.Porras to discuss Tuckers progress, and make sure everything still looks good to have surgery tomorrow.
2:15 pm - Met with Dr.Amani who will be Tucker's surgeon for his Glenn procedure tomorrow.

Homeowners.

Gary and I are now officially homeowners. I imagine a future with my boys chasing each other around the house and up and down the stairs. The home more than doubles our current living space, but is an older house in need of some TLC. So we had only this weekend to get some stuff around the house done before Tuckers pre-op on Monday and his Glenn procedure on Tuesday. He will be in the cardiac ICU for about 3 days the we go back to the cardiac floor where it seem like we have a second family.

All of our friends and family really came through for us this weekend. All rooms needed to be cleaned and a few rooms painted. I would never have known the the upstairs toilet, sink and tub are white not beige. My fabulous coworker Marianne spent more than eight hours scrubbing our new bathroom and you can now see your reflection in it. My father, Rick and Gary built about 600 square feet of shelves for storage in the basement. The shelves look amazing! We painted the whole room for my soap business, put up all of the stainless steel shelving for curing the soap and storing my supplies, painted the mud room, painted all of the closets, my mom's bedroom, placed contact paper in the kitchen and bathrooms, hung 2 closet systems and installed carpet in all of the closets.

We want to send a special thank you to all of our friends and family who made the time to help us out.

Dad & Nancy
Rick Sullivan
Gary's mom Lorraine
Gary's sister Michelle
Marianne Birtwell
Theresa Kusumah-Atmadja
Tracey and Brandon Hicks
Tammy Barriere
Laura Baldwin
Kevin Yost
Jen and mom Demos

My mom, especially after she Took Tucker to the ER to get his new NG tube...TWICE!

...and not to be forgotten Katie Pavento, and Chris and Amanda Pelkey for watching the kids.

Bloodwork and Needles.

So many of you know by now that my biggest fear in life is a blood transfusion. I know that the blood supply is safe and it saves lives everyday however, I just can't get past the thought of someone elses blood running through my veins. I have even gone to the limit and told the OB that delivered Tucker that she was only allowed to give me blood if I would die without it. This proves important in the overall story because that is the same thing that kept me from seeing him after birth in recovery for 40 hours receiving multiple iron injections for my extreme blood loss.

On Wednesday I went to Childrens to donate blood for Tucker's upcoming surgery next week, I had just finished a course of antibiotics earlier that day so I was turned away until the following day. I repeated my visit on Thursday to Childrens and I was denied due to low iron. They had just checked my iron the day before and it was within all normal limits. I cannot even convey the extreme frustration about this. I was devastated. I can not even put into words how upsetting it is that I have saved countless others by donating yet, I could not save my own child. Luckily I posted on my FACEBOOK page looking for donors who were comparable. A and O negative and positive can donate to him. I got two friends to go and donate. Sometimes people are just amazing! So very grateful.

Change is good?

Tucker went to his four month check up yesterday. He had been fighting a cold for about a week now, he was at the pediatrician early in the week with conjuctivitis, but his cough is getting worse everyday. Needless to say we didn't get our vaccinations and he was retracting so back to Childrens we go. Tucker was inpatient at Childrens Friday through Sunday of the Presidents day weekend. Gary and I took turns sleeping over with him. Hospitals beds stink! One of aunts bought us an air mattress, its amazing!

I HATE changes! Its been a difficult transition for me into my 30's and as I get closer to my 40's I find myself not recognizing who is looking back at me in the mirror. I always thought that I would never get grey hair or wrinkles, call it being in denial, but the continued stress of the looming surgery and buying a house is almost to much to take. Gary and I signed the purchase and sale. There are a lot of changes for the good coming up in our lives, as difficult it is to see right now I know that we will get past them as a family.

What a night!

Tucker was up screaming for the entire night, it was extremely exhausting. The main problem was that after the cath they could not obtain a pulse in his left foot, they would get it around his groin, then very faintly behind his knee. Then at around 2am, his leg turned more blue and it was getting colder to the touch. They sent us for an emergency ultrasound to check the blood flow to the arteries and an X-ray to check for any blood clots. After many RN's and MD's they finally got a faint pulse in his foot around 8am. We met with Dr. Porras around 9am and he also felt the pulse in his foot, Yay! Sounds like they are planning on discharging us today.

Cardiac Catheterization Surgery

Today we started our day out at 4:30am. We had to make sure Tucker got his medications before 5:00 am and turn off his overnight Pedialyte. We arrived at Children's hospital at 7:00 am, because we were told to arrive two hours early for the catheterization. Tucker is just getting over the stomach bug and has had diarrhea, so he needed to be changed. It was everywhere. While changing his outfit Michelle accidentally pulled out his NG tube while she was changing his outfit. So now we have one more thing to add to the list of things the surgeons have to do today. Updates to follow as we get them throughout the day.

10:00 am - They just brought Tucker in to prep him for his surgery.

12:00 noon - Tucker is prepped and they will begin shortly.

2:00 pm - NG tube is back in and the surgery is completed. They are finishing up and applying pressure until the entry wound clots. This takes a few minutes because he is on Plavix an Aspirin for medications.

4:00 pm - Tucker came out of surgery with a temperature of 101' . We are told that this is a normal body response to an invasion of the blood vessels and also maybe because he had to receive a blood transfusion. He has screamed for the last hour and a half and he finally got some Tylenol for his temperature "will also help with the pain". They had some problems getting access to his arteries, so he is a bloody mess on both sides of his groin and the right side of his neck. Besides that everything inside looks good, and the systemic pressure is right where it should be to proceed with then Glenn at the end of the month. They are still having some problems finding his pulse in the left foot, but they assure us as long as it stays warm and pink it is fine.

6:00 pm - Tucker started choking and dry heaving. We found out that they forced him out of anesthesia instead of letting him come out on his own. This causes a lot more nausea so they had to order some anti-nausea medication. Hopefully that will help, because listening to your child choke is horrible.

Wow, have we been busy !!!

The last month has been filled with many things. Tucker is doing well, however his oxygen saturation levels continue to go down to the lower 80's and even into the high 70's. They did tell us that this would happen and would be an indicator of when we needed to schedule his Glenn surgery. It's comforting to know that our Glenn surgery is finally scheduled for later this month on February 28th.

Spencer got a good progress report from Mrs. Kat that said he is continuing to be less aggressive and a better friend to his peers in preschool. He is also very smart, and has a complete understanding of everything required to graduate kindergarden "next year". He has also been doing alot better at home. He still has some tantrums, but not for as long or as severe.

We decided that we did not have enough going on in our life with Tuckers medical issues, Spencer's behavior issues, and starting a new soap business, so Michelle came up the idea to start a non-profit called "Warming Hearts" to provide hats and blankets to children at Children's Hospital with various cardiac issues.

And lastly, because we have nothing else going on, we have also finally found a great house after years of searching, so Gary and I have decided to purchase our first home. We will be signing the purchase and sale on it this week. It is a great looking older home with a lot of character on the Nashua River. It has some issues with the electrical (which will be fixed before we move in) and the deck, but its nothing that we cannot fix. The house will more than double our living space and give us a dedicated area for our thriving soap business.

Day 3 at Childrens

Tucker had a good day today, the nurses love all the big smiles. He ate his goal of 300 cc/ml of 30 calorie formula during the day and they are going to feed him another 200 cc/ml of formula overnight through the feeding tube. This should start to put weight on him quickly because he will not have to burn the 120-180 calories to suck the nightly formula down. Gary learned how to set up and use the medication pump that we will be using to feed Tucker the nightly formula. The early word is that we will be discharged on Saturday, maybe Friday if everything goes well overnight.

Tucker and his new NG tube.

Spencer had another difficult day at preschool. He has started to be very defiant and disruptive. He is so loud and disruptive that the other children cannot nap. We were told that he was so bad they almost had to call us to go pick him up. We don't know if his actions are because he is feeling neglected or not getting enough attention. We really don't know what else to do.

Thanks again to everyone for keeping us in your thoughts and prayers.

Scary night!

When I took Tucker down to make sure that the NG tube was in the appropriate location in his stomach. I was standing in the hall with him and he started to choke and turned blue. I completely froze! A RN just came and grabbed him from my arms flipped him over and Tucker threw up everywhere. Then he just screamed, I must of looked faint because they asked me if I needed to sit down. Worst night ever, I checked on him every 15 minutes all night long. I am pretty sure that my night RN thinks I am crazy. Our nurse Amy had taken him over to the RN station at one point in the early morning hours and I was a lunatic, I went roaring out there to see if something was wrong. So upset!

Tucker&apos;s not eating again.

Yesterday we called Dr. Audrey Marshall, she is covering for Sr. Porras while he is on vacation, Dr. Marshall was the surgeon why did Tuckers cath and placed his stints after birth. She told us that he wasn't eating enough and that we should come back into Children's for the NG tube. So Gary left work and picked Tucker up at Meredith's house, and brought him directly to the 8th floor for admission. We were moved all over the floor before we settled into room 834. This room is right next to two very large ICU mechanical doors, enough noise to just make you insane.

The plan for day one was to just see how much he is taking PO and seethe really needed the tube. Our fantastic NP from the cardiology program AnnMarie stopped by for a visit, she told me that it was crazy for us to waste all this time here, we came in for the tube, so she will talk to a few folks and get it's placement expedited since I just went back to work this week. She is amazing, because it was placed within the hour.

While it was being placed I introduced myself to the other mom Herron the floor with the same last name as us. I told her that I was checking in to see how a member of our family was. We swapped stories and told her to swing by if she wanted to meet Tucker. It was nice to swap stories, her son Hunter, just had the Glenn, which is what Tucker will have next month. I wish that I had someone to talk to that has been through this before. I filled out a patient match card to get in touch with a family that has already gone through this before.
This visit hasn't been without drama! We are in a shared room with a sick little girl from New York who cries ALL DAY LONG! I do not have any Advil either, ugh! It was her older brothers birthday and he was completely ignored by his fighting parents that should be divorced if they fight like that in public. Thank god that I have the amazing husband that I have. Tonight I go to sleep and I am very thankful. Lonely since I have not seen Gary in two days, but I know that our marriage can handle anything.

One fabulous Christmas.

I remember when a great Christmas was defined by getting all of the presents on your wish list. My how times have changed for us. This year we were hoping to just be together and at home this Christmas. Luckily we were home and our holiday was wonderful. It was spent with many friends and wonderful family. We couldnt have been more happy to not have been at the hospital. Spencer even slept in.

Before New Years Tucker had his cardiologist appointment, his weight continues to be an issue. He is only taking enough calories in to maintain his weight, not to gain. They have increased his formula so much that he is sweating while he eats. Dr. Porras said that for an infant to eat (with his diagnosis) it would be the equivilent of an adult to finish a 26 mile marathon. This is why he starts and doesnt finish very often. He tires too quickly. Dr. Porras told us to call next week and give Dr. Marshall an update. (Dr Porras is on vacation)

Sadly....today my maternity leave ended and I returned to work. As much as I liked my time home with Tucker it was emotionally and physically exhausting. It's a lot easier to get up at 4am and drive 75 mins into Boston. I called and spoke with Dr. Marshall this morning, she told us to bring him in and that she would admit him directly to the floor so we didnt have to waste 6+ hours in the ER. Gary took a half day and had an overnight bag packed in his car. (Sadly we have started keeping a bag packed at all times in case of an emergency visit to Children's Hospital) Gary will do the first overnight and then we will switch half way through the day tomorrow. So Gary and I can at least get a few hours in at our jobs.

These next few weeks before his Glenn will not be easy. It certainly feels like more than anyone can handle. Luckily I have a wonderful marriage and an amazing group of friends willing to help at a moments notice. So it will be tough but I know that Gary and I will get through this together as a team.

More to come...