Year 1!

 Isaac James Gilmore

Happy Birthday! Ike is destined to bring light, joy, and happiness to those around him. Not to mention stress, anxiety, and worry, but I guess that is no different than any other child. What a miracle his life has been and what a blessing he is and has been to our little family and extended loved ones.

Having the opportunity to look back, the blessings, the lessons, the love he has brought to our family is incredible. Lisa and I are closer and better because of Isaac. Eli and Emily are best friends because of Isaac. Those two little ones are more aware of others and concerned about others. Just last week Emily told Lisa that she wanted to have her birthday party at Ally's house, that way she could stay in her comfy bed. The lessons a 5 year can teach you, WOW!

Isaac is over 18 lbs. now. He is actually in the 2-3 percentile in weight for his age group. We are on the charts! Where he started, the hiccups he had to endure, we are excited to have a place on that chart! He is crawling every where, stands up to everything, and is in that search, explore, and destroy mode. It's awesome.

 It's Fun to Be One!!!

 

Exploring an Oreo cookie for the first time. I think he likes them.

 Every time he stands up to anything, a great big smile appears on his sweet little face.

 A family affair helping Eli learn to go potty.

Isaac is an assistant, as Lisa calls him, to Eli and Emily's games. He gets carried around, he becomes the bad guy and they run from him. Doesn't matter, Ike loves it and plays along. There are those times he gets carried out of another room, dropped in the middle of the floor, and left alone, he thinks this too is a game. The other kids on the other hand can't seem to figure out why he keeps returning.

Isaac loves life, to be with his siblings, to be held, and to play catch. He is a really good catch player. He is an inspiration to us all. Happy Birthday little buddy, we love you!!!

 Lucky for me, I have 2 kiddos that love to push snow with daddy!

Emily and Eli with cousins at the Christmas Dance

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.