Family Pictures

Gilmore Family 2012

Thanks to Leslie Garbanati for the wonderful job she did in taking our family pictures. What a gem to give of her talents and share them with us! Thanks, Leslie!!!

 One of my favorites and I didn't even know Leslie got this!

New Trick

Isaac getting another echo to check his heart valves. 

Since the last posting, we have had some big improvements and news. At our last visit with Dr. Cowely, Isaac lost his oxygen, he is now officially cordless. Since May 8, we have been able to walk around the house, yard, and anywhere else without fear of not having enough cord or wondering if we need to switch bottles or not. What freedom we have now. Something so seemingly insignificant can be so demanding. Not to mention the fact that he looks like a different kid. I didn't recognize him at first, you get so used to the tubes, it was crazy to see him without them.

On May 18, we also met with the geneticists. Since Isaac has been low on his calcium for so long and finding out that his parathyroid gland isn't working properly, our endocrinologist wanted us to talk with the geneticists to make sure nothing was missed. Isaac's heart defect and parathyroid problems  indicate a Q22 deletion syndrome, or DiGeorge Syndrome. Though his blood tests came back negative for that syndrome, the doctors wanted to make sure.

A big thanks to Leslie for the Baby Legs, sometimes there are cute things for baby boys.

Holding our breaths, not knowing what to expect, the geneticists told us exactly what we needed to hear. Other than the random heart defect, there is no category or label that Isaac needs to bear. The geneticist felt that the parathyroid and heart defect were essentially one problem, that they go hand in hand. So as long has he makes his milestones there will be no more gentic testing. Isaac is a special little guy. How lucky we are to have him with us and to be able to watch him grow and develop.

Speaking of milestones and new tricks. Isaac has one of his own to show you. Just see the video.

My favorite part is little Eli at the end. This was Isaac's fourth time, it took me that long to get my camera. But each and every time Eli was there at the end cheering his little brother along and so happy for him. I think we got a glimpse of the future, the relationship the two boys will have.

Just this morning, as we were getting ready for the day, Eli came right out and laid down next to Isaac, spending the next 5-6 minutes talking to him and rubbing his head. I know Eli is excited for a little playmate and realizes how special Isaac is. Eli is a brute to everybody, including mom and dad, except to Isaac.

Last Wednesday, at his latest check-up, he was a whopping 9.5 lbs. Still wearing newborn diapers at 3 months old but he is doing it, almost doubled his birth weight. The doctor says that heart kids just burn more calories than the average kido, so he may always be a bit skinnier than most. We have no complaints, he is growing, developing, and getting stronger. When we put him in the corner of the couch, he seems to do crunches as he tries to sit up and hold himself up. Good work Isaac, we love you!

The first week in June will be the first time since mid-December that we haven't had an appointment(s) during the week. It will be nice to not have to go to a doctor's office or hospital. How nice.

Emily's Preschool Graduation

Playing in the fountains at City Creek as we waited to meet cousin Julia!

Blessing Day

Today we had the great opportunity to bless Isaac. How far we have come. When this journey began, we got permission from our bishop to bless Isaac at the hospital. Before he came to us, we were not sure what to expect and wanted to bless him before we didn't have that opportunity. Ultimately we decided to wait, and I am glad we did. Daily he shows us how tough and capable he is.

Look at us now! He is 8 lbs. 6 oz. According to the medical charts he is below the 3rd percentile for weight. According to us, he is growing and getting bigger and stronger everyday. He is at least 2 weeks behind, due to surgery, but may be more being slightly premature. As his dad, I feel we need to compare him to other 7-8 week olds, not the 10 weeks olds, ... but what do I know?

We still haven't gotten a handle on his calcium yet. He is low and we haven't been able to pull it up. We have been to see an Endocrinologist, to check his hormone system. Dr. Murray concluded that his parathyroid gland, in his throat, wan't working properly. She changed his Vitamin D to the active form of Vitamin D, hoping to increase the blood calcium levels. 

We have only checked his calcium once since the appointment, but it was a positive check. His calcium levels were up. Dr. Murray felt confident enough that she even reduced his calcium carbonate supplement by a third. Come Tuesday, when we have our next appointment, will be the true test, to see if his calcium has stayed up. 

Overall he is a tough little boy. Isaac loves to be held, loves the attention, and loves to smile for his sister and mom. What a blessing he still is and how grateful we are to have him and see how well he is doing. I still don't feel like I am old enough to have multiple kids, then I see pictures like the one above. We are no longer "young parents", we are just "parents". Maybe I am not as young as I feel. Either way, I love being a dad, there's not better calling and opportunity.

Misc. Pictures from the last month:

Isaac in his blessing day outfit.

 Emily decided to walk a while in Isaac's shoes.

Catch-up!

I must apologize for my laziness on updating the blog. It started off with needing to keep up on March Madness and went downhill from there. Here is the update of the last 3 weeks.

We came home on March 2, that first week we visited our pediatrician and received home visits from speech therapy and home nursing. He left the hospital weighing 5 lbs. and 6 oz. By Monday, he was already 5 lbs. and 9 oz. He was still on 3 medications and had oxygen and a feeding tube, but he was growing and getting better, we could handle that.

It was a whole new world having to deal with all these new people, and home health care people that had to bring oxygen tanks, feeding tube bags, and everything else the hospital provided while we were there. I caught a glimpse of what my brother and sister-in-law having been dealing with for 10+ years now. Thank goodness for their advice and telling us what to do and what to avoid.

Isaac at home showing off his basketball fists.

Emily loves her little brother and has to hold him every chance she gets.

Emily is a great big sister. She is his second mom. She was holding Isaac and he began to cry and get pretty fussy. Being the good dad I am (hee hee), I thought I would swoop in and save the day, grab Isaac and calm him down. Instead she waved me off and told she had it, all the while shushing him and trying to give him his binkey saying "it's ok, it's ok." Maybe I need to sit, watch, and learn.

On March 14 we headed down to Primary's again for Isaac's appointment to check everything and get his stitches out. The night before the appointment he was crying pretty good because he was getting hungry. Lisa went to go make him a bottle; meanwhile, he just stopped crying. He had pulled his feeding tube and oxygen tube out of his nose! No wonder he stopped crying, he was finally comfortable. So we had to put it back in. I was the one getting all stressed and Lisa grabbed the tube and put it right back in, no sweat. Come to find out, at the appointment the next morning they pulled it back out. No longer needed.

Isaac's EKG- he's got more wires than in the CICU

 Look how red his poor cheeks are from the tape holding the tubes into place. He hates getting them pulled off, but I am sure he loves them off at the same time. Also, minus the stitches.

The cardiologist mentioned that his breathing seemed to be more labored than he liked, but the nurse practitioner agreed with us as parents that it didn't seem to be too far out of normal for him. He proceeded to give instruction on what to do if his breathing changed and if we felt we needed to talk to a doctor. Little did we know that in 2 days we would need his instructions.

Early, early (12 am or so) Friday morning (March 16) Lisa woke up to feed Isaac. She noticed he was really struggling to breath. She woke me up to get my opionion. It wasn't looking good at all. He was sucking in so hard you could see all of his ribs and more. He was laboring hard and not getting much air at all. Grandma and Grandpa came over in a moment's notice to stay with Emily and Eli, and we were on our way to the emergency room at Primary's.

By this time Isaac had very little air moving in and out of his lungs. He was very pale and lethargic. For how calm and deliberate the doctors and nurses acted, it was surreal to think about how blessed we were to make it there in the time we did. He nearly passed out on us and was just sweating drops on his head.  The first thing they did was suction out his nose and throat and change him to hi-flo oxygen. This oxygen is like holding your head out the window on the freeway, it forces air into your lungs. Within 5 minutes he perked right back up and was acting normal, fighting and kicking while they inserted an iv and took x-rays.

Isaac in the ER getting ready to go get an X-ray

The staff in the ER said he had symptoms of RSV and would get worse before it got better. We were transferred back upstairs to the PICU (Pediatric Intensive Care Unit). How scared, sad, depressed, emotional these few minutes were. Back to the place we just said goodbye to thinking we wouldn't see it again for years. The staff took blood samples to test for RSV and other respiratory infections, hoping to pinpoint the cause of his inability to breath. In the mean time, we were treated as a "dirty" patient, meaning that our child was sick with an infection, and probably would be in the PICU for at least a week for the virus to run its course. Horrible!

In the PICU he acted just fine! They inserted a feeding tube because they were not sure how he would take to a bottle being sick and having struggled with his breathing. He proceeded to pull it out along with his IV. His supplement oxygen steadily decreased and the staff couldn't figure it out. His first result back was the Rapid RSV- NEGATIVE. Good, but the other screen was still out.

 Mom and Isaac in and out of sleep. What else do you do in the ICU at 5 AM?

The nurses felt he might not be sick, so they kept him bundled to protect him from getting sick by the other kids in the ICU.

Isaac before we left the PICU Saturday

With the feeding tube being back in only 10 hours, oxygen down to the level it was before entering the ER and all the screens coming back negative, they decided to send Isaac upstairs to the CSU Saturday afternoon for one more day of observation. After no complications and just improvements, they sent us home early Sunday afternoon, wondering what had just happened and trying to catch our breath from a wild weekend.

Since then, he has only gotten bigger and stronger. He is sleeping 5-7 hours a night, which Lisa loves. He weighs in at a ginormous 7 lbs 2 oz. He gained a half pound in a week. More and more alert and active. He is even in the early stages of holding his head up. Other than Isaac's minor bump in the road, everything has been progressing better than we could ask. Those blessings are still coming in and we are still being protected and blessed. 

Our 3 little miracles!

COMING HOME!!!

I had to openly confess that since Wednesday morning I have asked every nurse when we they planned on sending us home. It was selfish, I know. Isaac may have been ready, he may not have, but I wanted to be home with everybody too.

Friday morning started off much the same. New nurse, same question, "Do you know when they plan to send us home?" Tracy surprised me by asking if we were ready to go home. I told her we were and she replied by saying she would go see what she could do.

By 10:20AM we had the word, Isaac was going home! Absolutely amazing. He was 10 days old, been through open heart surgery, closing of his chest the next day, and had proven to the staff he was capable of continuing his recovery and growth at home!

It wouldn't be till nearly 4 PM that we actually left the hospital with all the paperwork and organizing. We needed to get portable oxygen, feeding tubes, pump, and bags, and discharge orders from the hospital. We were leaving, but we would be seeing the doctors plenty in the next 2 weeks.

Isaac in his car seat for real this time, we are driving home.

Isaac did it, he really did it! We are going home with a strong and healthier baby boy!

Recovery

Isaac will get plenty of love with 2 moms to take care of him!

Thursday, March 1-

Since Tuesday when we got upstairs, Isaac has done nothing but get better and act better. He hasn't had any pain medication for 2 days now, he is more and more alert each time he wakes up, and looks healthier all the time.

Isaac came upstairs at aprrox. 5 lbs. Wednesday he was 5 lbs. 3 oz, Thursday 5 lbs 4 oz, and this morning he was 5 lbs. 8 oz! He is growing, it helps they have increased his feeds on a higher calorie formula, but he is doing great.

He still gets his daily poke to check his blood. They are keeping a very close eye on his calcium level, it has been low for 4-5 days now, and he even gets a ride on the elevator every morning to get his routine chest x-ray. The nurses come in every 4 hours or so to bug him, with random appearances from the cardiologists, nurse practitioners, and other specialists assisting in his care. It is humbling to realize how many people are watching closely and working together to make his stay as successful and positive as possible. It feels good as a parent to see the level of commitment every patient receives.

 Isaac got dressed for the first time.

 Here is his car seat test. They wanted to make sure Isaac could make it home with no troubles.

Upstairs was as busy for mom and dad as it was for Isaac. Mom and dad needed training. We needed to be trained in infant CPR. We even received our very own practice infant, so if you are interested, please let us know, we'll teach you too. Isaac was most likely coming home with a feeding tube, so we both had the opportunity of putting in an NG or a feeding tube through his nose into his stomach. We practiced giving medications, flushing, and feeding through his feeding tube. Oxygen training was easy. It is simply plug in and  change to the correct setting. We both passed this test.

Mom preparing to give Isaac his very own feeding tube, again.

Isaac was certainly busy too. He got 3 visits from the speech therapist, to help him to relearn to suck-and-swallow. He was getting stronger and better, but still needs plenty of practice. He also got visits by the Ear Nose and Throat doctor (ENT). Isaac's tongue is tied and the ENT came to evaluate whether this was inhibiting his ability to suck. We decided to let it go for now, knowing the some time in the future it will need to be addressed.

He had his hearing test and passed. The physical therapist came and checked out his range of motion and passed. He even has had the Wound Team come in to check his bottom. He is on a higher calorie diet which in turns leads to extra #2. We were rubbing his poor bum raw with all the diaper changes. Isaac is pretty tough, this barely even phased him either.

I must admit that these few days were tough. The days were long and monotonous. Looking back at them, they were absolutely wonderful. Isaac was growing, getting stronger, looking healthier, and the those in charge of his care were continually impressed by his continued and progressive recovery. Why or how can I complain? Heavenly Father has been most generous in His love and care of Isaac and his family over the past 9 days. In our best case scenario, we were looking at 2-3 weeks. Here at day 8 and 9 the doctors and nurses readily confessed they were loosing reasons to keep Isaac in the hospital. Prayers were being answered and miracles were happening. Isaac must have some important, unfinished business he needs to complete. I am starting to wonder if this experience is more for his parents than it is for him. Maybe we need some refining to help him get him where he needs to be.

Moving Day

This morning we were told that we were going to move to the 'floor'. To the nurses in the CICU, the 'floor' refers to the Children's Surgical Unit (CSU), or where the kids go to recover from surgery. The big momentum swing came with the removal of the ventilator. It was just a matter of time till he came upstairs. The CICU is on the 2nd floor and the CSU is on the 3rd.

Our nurse, Crystal, thought we would be upstairs by early afternoon. At 10:30 we got the transfer orders and we would be upstairs at 11:15! Again, the progress he was making is incredible. How sweet that was to know we shouldn't be back for years, maybe 4-5, but years! It was a good feeling to know that the countdown to come home was now rolling fast downhill.

We got to our new room, which has a window, Isaac just rolled right over and got comfortable. Nothing like snuggling up with a hospital blanket and taking a nap. My excitement grew because now Eli and Emily could come and meet him. That was going to be fun.

When the rest of the family got here, Isaac was getting his post-op echo. The cardiologists wanted to make sure his heart was working the way the repairs intended it to. We haven't heard how it went, but if there was something amiss, chances are we would have heard about it by now. Lisa and the kids got here during the echo, so the kids' first glimpse of their little brother was in dad's arms walking down the hall to take Isaac back to his room. Emily's first response was, "Oooo, he's cute." I believe she is correct.

We got to Isaac's room and both kids climbed into the chair as fast as they could to get a better view.

 Thanks to Aunt Marcie and Uncle Duane for helping him look good here in the hospital. Not to mention comfortable too, this blanket is amazingly soft.

Eli was very interested in Isaac. He got sad when he cried. Not real sure yet what to do, he came over occasionally to inspect, but blew kisses to him when he left.

Emily loved him too. She tried to hold him while mom help him, but with so many wires still attached, they decided they might wait for a better time. Plus, Lisa wants to hold him too. 

It was so great to have us all together again. It felt like months we were apart, with so much big stuff happening, but it hasn't even been an entire week. The real world is just a dream right now. Our windshield has been filled with hospital. How grateful we are for the many prayers that are now being answered and for a loving Heavenly Father that has helped us through this experience and strengthened us to be able to endure it. Thank you!

The Next Phase- Sat, Sun & Mon

Before I even begin this post, I need to say how incredibly comforting and happy we are to be together as a family again in Isaac's room.

These 3 days seem to all blend into one. His progress was steady and really good. Saturday seemed to be his rest day. He was still trying to bounce back from 2 surgeries in 2 days. Nothing really of note happened this day.

Sunday came and he was in for some good baby-steps towards moving out of the CICU. He still had his pacer wires in. These are in place, just in case, they needed to get his heart back up and moving again. He also had two arterial lines, like IV lines, that went directly into his heart. These were placed during his big by-pass surgery. Lastly, he had his chest tube, that helped to drain any fluid or blood that accumulated as a result of his surgery.

All these lines made their way out between Saturday night and Sunday evening. The pacer wires and arterial lines came out first. The chest tube was kept in place for a while longer, just in case of bleeding that was caused by pulling out the other pieces. No bleeding, no worries, which meant no chest tube, and it came out too.

Isaac a lot more comfortable with a few less "connections".

Sunday afternoon was also a very difficult time. Lisa had been discharged from the hospital and we were planning to go home to see Emily and Isaac. It was a tough trip, especially leaving the parking garage. So sad leaving Isaac, even though he would be getting excellent care, but also wanting to go home too. Being torn between two places is incredibly tough.

Once we got home, we were making calls to Isaac's bed every hour or two to check up on him. Our night got a bit easier and even exciting when at the 8:30 call we were told his ventilator came out. He was breathing on his own! Wow, the incredible progress he was making. It was sad we weren't there to hear his crying after it came out, but I will admit that I slept better knowing he was still making great progress even when we were gone.

Isaac's owie! 

Mom loving her son from a distance.

Will you take a bottle?

On Monday they wanted to see how Isaac would do taking a bottle. With everything that goes on, it is typical for these little ones to forget how to suck and swallow. Isaac was no different. He knew how to suck, but couldn't figure out the swallow thing. He was gagging himself with the formula and spitting it back out. He will have some help from the speech therapist and we can try again. He just needs to get a little bit stronger in his mouth and throat.

Isaac is the superstar of the CICU. As the doctors, nurses, fellows, or anybody came around, he was introduced as the superstar. I have to agree, he is pretty amazing.

RANDOM PICS

His very first photo after birth.

All dressed up, ready for Isaac to come.

The life-flight nurses taking Isaac to Primary Children's