Loves for Max...

Into the PICU

After surgery Max was brought into the PICU for recovery. Once he was settled and hooked up to all of his monitors we were able to visit him. His heart rate was pretty high when he was brought into the PICU but this morning it has settled down to a normal rate. Last night he was kept heavily medicated and this morning the nurses are weaning him off some of the medication with the hope of taking him off the ventilator today. It is a difficult balance to find with pain medication. Obviously we want Max to be comfortable and not throbbing with pain but too much medication keeps him from being awake and able to breath on his own. Right now we are waiting for him to wake up a little more and then the respiratory team is going to try taking him off the ventilator sometime this afternoon. He is really swollen today but he is responding well to touch and is wiggling around quite a bit. For most of the day I will just sit by his side. It is comforting to me to watch him breath, watch his heart rhythm and every once in a while I see his little eyes open for a second. I really can not believe how strong my baby is. He amazes me.

Here is Max being wheeled from the operating room to the PICU with the surgical team.

This is a picture of the first time we saw Max for the first time after surgery.

What do you do while you are at the hospital for 12 hours? We read, knitted, checked emails, updated blogs, checked facebook...

Max in the PICU

Surgery is over!!!

Max is all done! We just got word that the surgery is complete and the surgeons are working on closing the incision! He made it! He was strong! I am SO relieved but I feel like I won't believe Max is okay until I see him. Even though it has only been a few hours I feel like it has been an eternity since I last saw my little boy. In a few minutes the surgical team will be bringing Max up to the ICU. We will get to see Max just for a minute as his crib passes in the hall and then we will have some time to talk to the surgeons. I am so proud of my little boy. He was brave and made it through.

By-pass machine...

Max is doing great so far. He was hooked up to the by-pass machine around 10:15am. The last update we got from the nurse was all positive. Max was stable and tolerating the anesthesia well. We still have a long wait but so far so good.

My heart flips back and forth from worry to calm. I am so anxious for the surgery to be over and for Max to be stable in the ICU.

Back in the waiting room...

Max was admitted to the hospital this morning for his second heart surgery. It is almost 9:00 and Max has been in surgery for about an hour already. Spencer and I are sitting in the waiting room. Waiting...
We have had a busy day already. The last time Max could eat this morning was 3:30. We both got up with him to feed him a bottle and give him some extra cuddles. 5:00 Spencer and I were both up and getting ready. 5:30 we woke Max up from a deep sleep to get in his car seat and we were off to the hospital. 5:45 Max was wide awake while we were driving and started sucking on his hands. 6:00 we checked in to the Pediatric Admitting Office. 6:30 Max had a pre-surgery check-up (weight, length, blood pressure, oxygen saturation, etc). 6:45 Max fell asleep in my arms. 7:00 we walked down to the surgery waiting room. 7:20 we met with Max's anesthesiologist and surgeon. 7:30 I handed my sleeping baby over to a nurse and he went through the double doors into the operating room.

Spencer and I are a mix of emotions. There is no way to really explain how we are feeling at this point. I will say that it was easier for me to watch my baby go into the operating room because he was asleep. He look peaceful and calm. I can only hope that the anesthesia kicked in before he woke up and realized he was hungry, cold and not with mommy. We will hopefully get an update on the surgery and how Max is doing within the hour. We love you Max! Be strong!

Does this look like a baby who is going to have heart surgery in an hour? Max made us feel less nervous because he was being so sweet and cute while we were waiting this morning.

Max saying, "Don't worry dad!"

Sleeping in mommy's arms in the operating waiting room.

Last kiss from mommy.

Pre-op Appointment

Max went to the hospital today for his pre-operation appointment. He had an EKG, chest x-rays and blood work done. The technician struggled to find a vein to draw blood and eventually (after a few practice pokes) ended up drawing blood from a vein on his head! I had to leave the room because I knew I would get queasy seeing my baby with a needle sticking out of his head. All of his tests look normal and we got the okay for surgery on Monday as long as Max does not get sick this weekend.

We were also scheduled to meet with Max's surgeon today but he was not available so we will have to wait and talk to him on Monday morning. Spencer and I were disappointed that we were not able to meet with the surgeon because we have lots of questions but, we understand that when a surgeon is busy you really can not interrupt. The same team of surgeons that performed Max's first operation will be working with Max again this time. These doctors are capable and very good at what they do so we have faith that they will take good care of our little boy.

Now we just have to wait until Monday. A supportive friend of mine dictated perfectly in an email how I feel. She wrote, "I hope that the time will pass both quickly (so that you don't have to worry too much) and slowly (so that you can enjoy not having a child in the hospital)." Time is either moving too fast or too slow right now. I am anxious for time to hurry up so I can have a healthier Max in my arms and have a huge worry lifted from my shoulders. But I also wish time could stop so I would not have to see my baby struggle while he is in the hospital. Only a few more days...

Max's surgery...

A lot of people have asked what will actually happen during this upcoming surgery for Max so I will do my best to explain. He will have 2 procedures done during this surgery, the Bi-directional Glenn and the Damus-Kaye-Stansel Procedure. And once again, I am not a doctor or nurse so I know some of my terminology is incorrect and I might not explain thing perfectly but I will do my best to explain things the way I understand. Also, Max's heart is quite complicated so when I explain the procedures I will explain them in terms of a "normal" heart first and then try to relate the differences with Max's heart.

Bi-directional Glenn:

Blood circulating back to the heart is low in oxygen (blue blood) and it flows into the right Atrium through the Superior vena cava (SVC) or the Inferior vena cava (IVC). The SVC brings blood to the heart from the head and upper extremities (arms). The IVC brings blood to the heart from the lower extremities (legs and torso). You can see the SVC and IVC on the image below:

Once blood enters to the right atrium it is pumped to the right ventricle and then to the pulmonary artery which goes to the lungs. Once the blood gets to the lungs it saturates with oxygen (now it is considered red blood) and it flows back to the heart.

With the Glenn procedure the SVC will be cut and connected directly to the pulmonary artery. This means blood circulating back to the heart from the upper body will not pump through the right side of the heart, instead it will flow directly to the lungs. With blood from the SVC flowing directly to the pulmonary artery there will be less stress on the heart because it will not have to pump as much blood to the lungs. The heart diagrammed in this picture is different from Max's but you can get the general idea of the Glenn if you just look at the SVC and how it will connect to the pulmonary artery.

In a few years Max will have the Fontan procedure done which connects the IVC directly to the pulmonary artery. At that point the heart will not have any blue blood pumped through it. All blue blood flowing back to the heart from the body will go directly to the lungs. Here is a picture after the Fontan:

Max only has 1 working ventricle, his left ventricle. Right now Max's left ventricle is doing double duty because it has to pump blood to the lungs and to the body. Without any surgeries Max's left ventricle would eventually stop working because it is working way too hard. The Glenn is the first step in easing the work of the left ventricle. Like I said, in a few years Max will also have the Fontan done and that will then complete his surgeries. After the Glenn and Fontan the left ventricle will only need to pump blood to the body.

Damus-Kaye-Stansel Procedure:

For this procedure the surgeons will create a "double outlet" for the aorta. The aorta is the main artery returning blood to the body. In order to maximize that amount of blood leaving the heart with a minimal amount of effort the Damus-Kaye-Stansel (DKS) connects the pulmonary artery and aorta using a patch. That way blood can flow out of the heart directly through the aorta or through the pulmonary artery and then to the aorta. Here is a picture:

Max's aorta is connected to his non-functioning ventricle. Right now the only way blood to getting to his body is through the hole between his ventricles and then out the aorta. With the DKS Max will have blood flowing out both ventricles which again will ease the stress on his one functioning ventricle.

This surgery is pretty scary because the flow of blood in Max's heart will be redirected. Most babies his age respond well to the surgery and recover well. The hope once this surgery is complete is that Max's oxygen levels will increase and the energy required by his left ventricle will decrease. Also, if Max responds well with these 2 procedures then he will be healthy enough to wait 2-3 years at least before his next surgery, the Fontan, is needed.

Max is 3 Months Old...

Mighty Max is already 3 months old! He is such a sweet little baby. During the day he is very mellow and "go-with-the-flow." At night he likes to keep us on our toes and most nights wakes up quite a few times. He loves when Morgen plays with him and he loves when we sing to him. Max does not really like pacifiers but he loves to suck on his hands. He is a great eater and prefers to snooze while someone is holding him or in his swing. Most people comment on his big eyes and button nose. I love his cubby cheeks and sweet little voice when he tries to talk to us. Max has had to go through a lot for only being 3 months old but hopefully by the end of this month his hospital stays will be over, doctor visits will decrease and he will get to spend more time just playing, cooing and smiling at home with mom, dad and big brother.

I have had a difficult time capturing what Max looks like in a picture. It seems like in every picture I take of him he looks completely different. I think the first picture is the most "Max-ish" but the rest are pretty darn cute too!

Mixed Emotions...

Today we found out that Max's next surgery is scheduled for April 13th. We are excited and nervous at the same time. We are excited because we know this surgery will improve Max's health. Also, we are anxious to get the hospital stay over with. The nervous part of the surgery is obvious- my baby is having open heart surgery. Scary.

Originally the doctors thought the surgery would not be until the end of April or the beginning of May, but Max's oxygen saturation is lower then we want which is reason to move the surgery sooner. With his first surgery the pulmonary band ended up being a little tighter then the doctors wanted causing his oxygen saturation to stay below 70%. The doctors also felt comfortable moving the surgery up because Max has been growing at a steady rate. He is strong and gaining weight.

We are so happy with how well Max has been doing so far. Now we have a date to plan for and hopefully we will be more prepared then we were the first time around.

Melt my heart...

Recently Max has started smiling and cooing all the time! It is darling. Seeing a big smile on his face helps melt away some of the stress that follows me around all day concerning his heart. He had a quick check up at the pediatrician today and he is up to 10 lbs 6 oz! Way to go big boy!