It’s the little things

This is certainly a journey, and over the last few days we have been really focusing on the little things that are huge accomplishments for Lucas. He continues to hold steady and each day he is getting a little stronger.

His oxygen saturations have remained high and have caused some concern that his lungs are now getting too much blood flow. Although his sats are high, all of his blood gases and x-rays show that he is tolerating it well. He just loves his oxygen; I don’t blame him after living for weeks with hypoxia. He was taken off of the Vecuronium (paralytic) on Thursday. We were told that the time before he would start moving again may be an hour to a day. Those were very long hours waiting for him to make his first move. He slowly started moving his little belly after about 20 hours of being off of the medication. Since then he has been slowly regaining all of his movement, and yesterday he finally started tracking again with his eyes... Alleluia.

Due to the interventions to save Lucas on Tuesday night along with the surgery on Wednesday, Lucas is a little marshmallow man. He has probably at least doubled in size, although we were trying to get him to gain weight at home, we didn’t expect this rapid of weight gain. They started him on Lasix on Thursday and with each milliliter of urine that comes off we get excited. Yesterday they started a Lasix drip, and now the fluid is coming off much more rapidly. Today I can ALMOST feel his ribs when I touch his chest.

We have also noticed that the little things make all the difference when it comes to his care in the hospital. We have been lucky to have some very great care providers who have been able to provide us with little tips and tricks to make him comfortable during his hospital stay, as well as great advice on care for him when we take him home. It's the simple things like cleaning his mouth, removing the tape from cutting into his eyes, and giving him his as needed dose of Tylenol. These little things have made a big difference in making Lucas much more comfortable while recovering.

Today they are planning on extubating him.His vent rate is now at 0, so he is completely breathing on his own. I could not be more excited about this. It is so hard to watch him cry and no sound comes out. It seems like once he realizes no sound is coming out, he gets really sad and defeated.

Lucas is holding his own, and is truly the bravest person we know. When you watch your child go through something like this, it puts everything into perspective. Money, material possessions, family tiffs, and day to day worries are insignificant when you think about what some children battle through. The trials and tribulations that Lucas is enduring illuminate what is truly important in life. He is such a fighter and we are so proud to be called his parents. Please continue to keep Lucas in your prayers, each day brings little goals, and with continued support and prayers hopefully he will keep jumping right over each new hurdle. We love our handsome boy!

Lucas certainly has his own time schedule…

We arrived on Monday evening and checked into the RMH with Lucas. We had a good night and woke up very early for our pre-op apt. The day was very busy for Lucas getting dressed, undressed, echos, ekgs, assessments, and getting poked.

After his xrays he had his blood drawn the tech was training someone and telling her all of the things not to do on babies. Lucas was such a brave boy and didn’t cry, only a little whimper. She was only supposed to take out 2-3cc due to his weight, but she said she needed to take 5cc since he had so many labs ordered. She pulled the blood and then did exactly what she was teaching the other girl not to do... and she spilled his precious blood all over the work station. She made it sound like no big deal and that they would draw the labs and run them when he was under anesthesia the next day. Needless to say we were not happy and certainly didn’t feel comfortable with Lucas being under anesthesia for a few extra hours while they ran the labs.

So, next came the ekg, echo, and meeting with the team. Lucas was an angel through all of the tests and his sats were in the 90’s..yay. After meeting with the team we took an unexpected turn. Lucas was hungry and trying to sustain until we were done, but when they undressed him and assessed him he was hysterical and had yet another blue spell but this time he turned very pale and sleepy afterward (maybe he needed the blood that was spilled all over the table). The clinic was very concerned and decided to admit us. After some time we got upstairs and it was time to eat again. Normally when he eats, he thrives, this time not so much. When eating they had hooked him up to the monitors and he was bouncing around in the 50s (on oxygen). After eating we tried to swaddle him and make him comfy to try to get him some rest, but again he panicked and got blue. He dropped into the 30’s. He was pale, lethargic, and un-arousable. I have never been so scared in my entire life.

I asked the resident to please page cardiology. Cardiology came and were very concerned, they said we may have to go emergently to the OR and they paged our surgeon. Peter carried our limp son through the hospital with the ICU, surgical team and a crash cart following. I will never forget that walk. We went to the CVICU where we were met with large number of people. Lucas’ sats were still low. They gave him some fluid and blood and that perked him up for a bit. His sats came up to the low 70’s. After getting poked over 12 times they finally got blood again. While talking with the attending about the possibility of going to the OR emergently, Lucas’s sats dropped to 4, yes 4! The whole night was up and down, they intervened with every measure but surgery, but decided to bump him to the first case as they were very concerned about his VSD closing completely. We truly believe that we were put in the right place at the right time. In hindsight Lucas’ blue spell was a Godsend, because we would have gone back to the RMH only for him to crash there.

He hadn’t eaten since 4:00 pm the day before because they wanted to be ready for emergency surgery, he whimpered every time he saw me, probably trying to say, mom why aren’t you feeding me. Lucas went to the OR at about 0745 yesterday morning. Saying goodbye to your baby before open heart surgery was unexplainable. Watching him go through the double doors was surreal and heartbreaking.

Lucas’ surgery went well. The surgeon was pleased, so we were pleased. We now have the opposite problem with the sats. They are now in the mid 90s and they are concerned he is over circulating his lungs. For the past five weeks we have been praying for higher sats, now Lucas gets higher sats and they want them lower. He can’t win.

The events of the past few days have been filled with unimaginable fear and emotion. Our baby has been through more in these first five weeks then most endure in a lifetime. Please keep Lucas in your prayers, he is fighting hard. Our cardiologist said that this Wed could not come soon enough and he was certainly correct. We fully believe that Lucas could not have made it another day without this surgery.

Why?

It is hard not to keep asking yourself the questions: why is this happening to us, why does Lucas have to go through this, why is this so hard? Right now life doesn't seem fair! I hate knowing what Lucas will endure over the next few months. It hurts so bad as a parent to know that there is nothing we can do right now to help him with his oxygen and with his heart. We have been trying to remain happy and positive because I really believe that babies can sense your emotions. Even when I was pregnant and Peter and I would be upset, Lucas would start squirming like crazy, and that is still the case.

We found out yesterday that they are going to go ahead with surgery #1 next week. We are scheduled for surgery on Wed (our wedding anniversary). Our cardiologist has been worried about Lucas and doesn't want to risk his health by trying to wait to do the Glenn. He and our surgeon feel that it is best for Lucas to go ahead and do the BT shunt. I have never been so scared in my entire life. I know that those are normal feelings, but I never imagined the intensity of the feelings. I don't think that is something anyone can put into words.

We thank everyone for all of their support and prayers. Even though we are very down right now, and life feels so unfair, we do feel like we are in great hands, and we love our handsome guy more than we could have imagined. We are still loving and cherishing our time at home. I wish we could make time stand still right now. We will likely be heading to the bay area early next week. We are just praying for a complication free recovery and surgery.

Ironically, today Lucas is 4 weeks old, and today was the day they were going to induce me at Stanford had I not gone into Labor yet. And also ironically Lucas will have his first surgery one day before his actual due date. I can't help but think if he had been born full term if we would have had to have the first surgery very soon after his birth. We are so thankful to have had him an extra month. He has made our lives happier and I could not have imagined the last month without him!

U-Turn

(these pics were taken last week)

So, a big change of events this week for us. We had a wonderful relaxing weekend around the house. Lucas is getting on a somewhat normal schedule at night and is seeming to be really adjusting to his home. We spent the weekend doing things that were meant to be done before Lucas arrived and Peter's official first day back to work was Monday. We had a cardiology appointment scheduled for Monday in Sacramento.

What we thought was going to be a quick weight and sat check turned into 24 hours in Sutter Memorial's PICU. First off, Lucas is now a wopping 6lb 12oz. We were so excited, he is definitely moving in the right direction and that was the same scale as last week, so we know it was right. Yay! Then came the pulse ox. Peter and I both hate this part, we have come to dread the pulse ox. The readings were bouncing between high 50's and low 80s. This was a significant difference from the week before when we had been holding steady in the mid 80's. This was so scary to us. We hadn't noticed too much change except him being slightly pale after eating, but we thought we were just being over cautious. Our doctor decided to repeat an echo to see if there was a change that correlated with the sat drop. He said there was only minor echo changes. We (I) then thought the office pulse ox must be wrong.. so he repeated it for some time. Although we hoped and prayed it had been wrong..it wasn't.

We were sent over to Sutter for admission. It was thought that maybe Lucas was anemic. Most babies get anemic about this time in life, but it is a lot harder on cardiac babies. I was praying that the office meter was wrong. But, when we got hooked up.. he was bouncing around in the 50's to 70's. I think my heart breaks a little each time he gets hooked up to the pulse oximeter. They decided to put him on oxygen and give him a blood transfusion. (His Hgb was on the low side of normal, but again it is harder on babies with heart defects to have a low blood count. My heart literally broke into peices when they put the nasal canula on my baby. I know it is a simple, non invasive thing, but for some reason it all became real to me when he was looking up at me with his big eyes with a cannula in his nose.


When you look at him, he looks perfect (I may be biased) and I think this was the first big reality check for me that he indeed has heart problem. You can't see it by looking at him, and you wouldn't be able to tell by his smiley disposition or tenacious eating habits, but he is declining. I knew the day would come and I new it would kill me.. and it IS! His little nose and cheeks looked so precious with the mini cannula on them. What an amazing guy he is to smile through all of this.

His sats bounced around. Until they had to poke him again (twice). Right before they poked him again I changed his dirty diaper and I think he was startled by an alarm or something.. but he got completely hysterical. He turned shades of blue that I NEVER want to see again. He was inconsolable, it was the absolute worst feeling I have ever felt. He was blue, crying beyond hysterically, and his sats were in the teens. Yes.. teens. After he finally settled down, he had a better night. After the blood transfusion he seemed to perk up a bit. He was also put on a Beta Blocker to keep his heart rate low and keep the heart from working too hard. For most of the night he cruised in the 80's, except when eating. Whenever he eats he is in the mid to high 90's. This has always been the case. Even in the NICU, his sats would soar when eating. It is usually backwards of this I have been told. I am tempted to just feed him all of the time, if it means his sats will stay high.

Anyways after a long sleepless night, we were discharged home today on oxygen and the Beta blocker. Given his low sats, the doctor thinks he may not be able to bypass the shunt (#1) surgery. We were hoping if he could maintain until 3 months old that he could go right to the #2 surgery. We were so hopeful that this was going to work out, but it seems that this will not be the case. We do not know what the next month or even week has in store for us. Depending on his status on Thursday, I think we will know more.

This journey is getting harder. It has been so wonderful to be at home as a family, we are so thankful for this time. We know Lucas is going to do great, but it is the hardest thing in the world to know what lies ahead for our handsome little man.

4/12/2009

We are adjusting to being at home, and loving every minute of it. Lucas is slowly starting to change his nocturnal ways. Although, I know as soon as I write that, we will have another completely wakeful night. We had our second cardiology appointment yesterday. Lucas is pretty much unchanged from last week. He had another echo and they found that everything has remained pretty unchanged since we left Stanford. We are thankful for that. As far as the weight gain goes... we have had three appointments in the past two weeks and all of them have weighted him on a different scale, so it is a bit uncertain of his actual weight. Yesterday he was only up one ounce from last weeks cardiology apt. making him 6lb 5oz, but the doctor didn't seem that concerned due to the difference in scales. At least he is headed in the right direction. Next week we will be on the same scale as this week so that should be a better indicator. He recommended that once or twice per day we feed Lucas a bottle that is supplemented with formula in order to increase his calorie intake. Hopefully next week we will see a bit more progress. Lucas is still holding his own and we are loving out time at home as a family.

Lucas is Two weeks

Time sure does fly. Yesterday Lucas turned two weeks old. If he were still in me, he would now be considered just about full term. He is doing well. We had our cardiologist apt this week as well as our first pediatrician appointments. We have cardiologist appointments weekly to check his weight and his oxygen saturations. I feel so fortunate to have the cardiologist that we do, he just called me today to make sure we were doing ok and felt comfortable with everything, how amazing is that!!

We're Home!!

We are happy to say that we arrived home safely yesterday afternoon!! Yesterday morning Lucas had a repeat echo and it was determined that everything had remained the same over the week. His sats have been steady and he has been gaining weight, so we were discharged home. Yay! We didn't want to get our hopes up that we would actually be leaving until we were really on the road. It is such a blessing to be home with our son. We know that the road ahead is going to be tough, but we also know that we have great support and that our son is a fighter. We feel so blessed to be home!!

So the first night as parents in our own home was a bit sleepless, no surprise. You would think that a baby would sleep better in a quiet environment, but I think Lucas is so accustomed to monitors dinging, doors slamming, and people talking over him, that the silence of our home was a bit irritating. Go figure. It is a big adjustment for him I am sure. We met with Dr. Wright (Lucas' cardiologist) this morning and according to their scale Lucas is now 6lb 4oz, more than his birth weight. Who knows which scale to trust because each one says something so different. But we were pleasantly surprised with that weight!!

Although we are home and settling in and excited to see all of our family and friends that love Lucas, we are going to have to be a little careful with the visitors. We cannot have him getting sick, that could be a big setback. We thank you so much for all of your prayers and support. Please keep Lucas in your prayers . Lucas is a little miracle and we cannot wait to enjoy some time at home as a family. We are so happy to be home!!!!!

Happy Birthday Lucas

It is hard to believe what has happened in a week. What a humbling and life changing experience. We are so proud and grateful for our little boy. He is still holding his own. We are going to take him on a walk around the hospital tomorrow. Here are a few pictures from his one week birthday. (He is smiling more and more each day). Thank you for the continued thoughts and prayers, we couldn't do this without all of we the support we are getting.