I posted this on his blog before his birthday, I still feel the same though & wanted to repost it here for others, so they can have HoPE for the future also.

♥     ♥     ♥     ♥      ♥     ♥      ♥     ♥     ♥     ♥

As London’s 10th birthday comes around I am very emotional.  When he was diagnosed at just 2 days old we were faced with the very real possibility of losing him, we are still faced with that possibility, it is something that we must think about every day.  I didn’t dare dream of the future until he was safely past his required surgeries.  We wondered if we would see him grow up and we vowed that he would be happy and we would have no regrets.  Now here we are, 10 years down, many many more to go!  London has come this far with flying colors and will surpass everyone’s expectations!  I now, finally, dare to dream…. Dream about his 16th, him driving, his 18th, his graduation, his 21st, college, marriage, and even holding my grandkids!  Things that most people take for granted, these are the things that we, as London’s parents, dream about & hope against all hope that London will be with us & be able to achieve these things.  And something that I know all HLHS & CHD parents will understand, but may sound morbid to everyone else:  MY SON WILL BE BURYING ME!  (Not the other way around)  No parent should have to bury their child, but as a person with HLHS, we do not know what his future holds, the oldest people living with HLHS are only in there late 20′s & early 30′s, but medicine has come a long ways, more & more kids with HLHS are living & my son is one of them!  I love you so much London Max II!  You are my sunshine!

PS. I also want to thank Dr Delius, his surgeon for his 1st 2 surgeries; his surgeon at UCSF; Dr Choy, his cardiologist; Celia, Dr Choy’s wonderful head nurse who has been there for us through everything!; Dr Yumul, his wonderful pediatrician for the first 8 years of his life, and everyone else, dr’s & nurses alike, who helped to keep my son alive and helped us get through it. Thank you to my family for being there for us and to our friends also. Thank you Shannon, for showing me that there were other people out there who felt the same way we did, and for taking the idea of starting our support group & running with it. I know that not only me, but over a thousand people thank you for getting the group started in 2002! ♥

Right after Norwood (1st open-heart surgery)August 2, 2000 ~ 5 days old

Just after Glenn (2nd open-heart surgery) February 1, 2001 ~ 7 months old

After Fontan (3rd open-heart surgery) August 1, 2002 ~ 2 years old

London earned his Yellow Belt in Kajukenbo July 31, 2002~10 yrs old

I’ve walked down the hospital hall and handed my child over into the hands of capable physicians and God twice now for open heart surgery. I’ve watched as she was taken beyond the yellow and black line that separated her from us and felt the awful pit in my stomach and waited with the knowledge that I can’t do anything for her. Turning your child over to a physician for any medical procedure is hard; turning your child over for a life-threatening surgery is something I don’t think I can put into words.

Can you prepare for that? No. Nothing you do can prepare you for the emotional toll, the hours of waiting in an operating room, the nerve-wracking havoc tugging at your heart and mind…nothing can prepare you for that.

While emotional preparation may not be possible, education is. Knowledge is power in the world of Congenital Heart Defects. The more knowledge you have, the less helpless you feel. It is usually fairly easy to gain knowledge on the “basics” of your child’s CHD and the surgical procedure they will go through. What isn’t always easy is to get the knowledge you need that will prepare you the best. Knowledge that can help you and knowledge that can help your child can make open heart surgery and recovery a little less stressful.

This would be my list of preparation advice for those facing open heart surgery with a child.

* Learn all you can about the hospital, surgical procedure, surgeon, and preferred treatment of cardiac patients. Hospitals are all different. You may know someone who has been through this before and feel ready; however, it may surprise you how different your experience turns out. It is important for you to understand how your hospital works. Some hospitals are more likely to use newer methods of treatment, surgery, or respiratory therapy. Anesthesia care and techniques differ widely. Does your hospital have a PICU, ICU, or CICU? Where do you wait during surgery? How long until you will be allowed to see your child after surgery? This list is just a tiny fraction of all the things that differ from hospital to hospital. You should find out so you aren’t surprised by any of these things. Do your research on hospitals and their surgery protocol just as you would your child’s condition.

* Be aware of how your child will look after surgery. With my daughter’s first open heart surgery, we had friends who showed us photos of their daughter immediately following surgery. We stared at the photos as they explained all the tubes, cords, IV’s, medicines… and more. Although our daughter didn’t look exactly the same, we were better prepared for what we saw when we walked in the room. We recognized her knees down to her toes and her beautiful eyes and top of her head, otherwise, she was completely covered in tubes, wires, bandages, and tape. For us, it was still hard to see but not nearly as hard as those who came to visit her who had no idea she would look like she did. Google search open heart surgery images for pictures to prepare you. Study the pictures. If you know someone that has been through it, you can ask them to explain what all the lines and tubes and equipment are for. It won’t make it easier to see, but it will definitely take the horror out of it. Abby’s pictures can be seen on the Miracles and Milestones page of this blog.

* Learn ways of calming and soothing your child. This can be invaluable to you and your child. Knowing you can calm them down and that they are as comforted as possible will make you feel useful and comforted. Talk to your child, even when they seem asleep or incoherent. Your voice will soothe them. Touch them often, again, even if they are sleeping or sedated. Run your hands through their hair, rub their hands and feet, and anywhere else that is free to touch. Study up on Pressure Point massage. Using a reflexology foot chart will help you understand how to rub to help ease pain in certain areas of the body. Abby loved foot rubs and hand rubs as a baby and adolescent while recovering. We found a lotion that smelled good and rubbed away. Music therapy or playing music can also soothe and comfort some children. We played classical music when Abby was a baby at home and she responded favorably to it during her recovery. Anything that calms your child should be used in the hospital to help them through their traumatic experience.

* Know what to expect during recovery. Every recovery is different and every child is different but, knowing what might happen or what happens to many may help. Recovery for a baby is amazingly different than recovery for a child, teen, or adult. Find out what to expect. Many babies are kept sedated for longer periods of time and on the ventilator longer. Additionally, their hearts don’t have much room to swell so their chests may be kept “open” for a time. My daughter was so sedated for the first five days after surgery that I became fearful that she had suffered severe brain damage. When she would open her eyes she would not respond to me at all. The faraway stares and non-responsive is very normal when coming of sedation. Problems may also come up with feeding issues, either refusing to eat or not being able to nurse because of the drainage tubes. Deciding before hand how to handle the feeding issues, especially if nursing, is important. Do you want them to give them bottles to try? The sooner they eat the sooner they go home; however, this meant giving up nursing for me before I was really ready. I hadn’t thought through that I did not want her to try formula or juice by mouth…I wish I would have stuck with breast milk through an NG tube and continued to try nursing until she would nurse again. Many children also suffer sleep issues. They may not want to sleep or may have hard times sleeping. Their sleep cycles will be interrupted. Finding things to help them sleep, a favorite toy or blanket, can be a lifesaver.

* Prepare for the emotional toll of open heart surgery on older children. As a baby, our daughter was kept sedated and comfortable. I remember some hard days but mostly she seemed comfortable, as long as she was being held. Abby’s most recent surgery was a different experience. She was in quite a bit of pain, and was asking for pain meds every hour. Having lines removed and drainage tubes pulled was painful. The nurses tried to keep her med intake down but then she was in too much pain. Her incision and sternum were also very painful. This pain made her depressed. In addition, her little body got very sore from sleeping in the same positions on the hospital bed. She didn’t smile and our spunky, full of life little girl was the lowest I’ve ever seen her. I had read about depression after surgery and was ready for it, so I knew to allow her to feel how she did. I validated and agreed with her that the surgery and having to have it was awful. Others were shocked and concerned with her depression though. They didn’t realize the surgery would take such an emotional toll on her. Abby has been home for a couple days and is still dealing with the blues that follow surgery but, is slowly getting back to herself. What I wasn’t prepared for was the anxiety attacks! The anxiety in the hospital was severe. Abby suffered full blown adult type attacks that raised her heart rate and breathing rates and made her feel like she couldn’t breathe. Your child may suffer anxiety attacks as a natural reaction of being in the hospital and enduring such a serious surgery. Other emotions may also be felt. Anger, sadness, apathy, phobias, or feelings of being overwhelmed. Abby suffered all these. She would make comments like “You made me have this surgery.” She would also get overwhelmed with too many people around her. All these emotional ups and downs are normal and don’t have to surprise you. If you have a plan and know how to deal with them you and your child can make it through surgery and recovery.

This list may need adding to. I may have left things off that others experience. This list can help you prepare, in a small way, for the mountain ahead of you. While nothing can fully prepare you, you can be prepared for some of it, and help your child through it.

http://www.abbysperfectbrokenheart.net

Hi everyone,

I found this correspondence between myself and another heart mom, who’s baby was due for surgery and she had to pack and travel far from home, and didn’t know what to expect.

Keeping in mind that hospitals the world over have their own unique ways of doing things, here are some of the things I found during Naomi’s stay that were helpful to her, and our girls had their surgeries at the same hospital in Cape Town, SA.

Hope it helps:

“One more very practical bit of advice: have tops for Kiara that open in front. you won’t be able to lift her arms for a while, so makes changing clothes easier. Another heart mommy told me that, and she was right! And some of her fav toys and books.”

“Thanks for the advice i actually thought they don’t dress them and i was going to just take all her clothes:-) WEre you allowed to feed you baby bottle while in hospital or did they do everything or was she on a drip? How long was the op for that must be the worst part waiting for the Dr to come out:-( Sorry for all the questions”

“no prob Naomi’s op was supposed to be 3-4 hours, but was longer because they found TAPVD and had to repair it. Her cardiologist came to give me an update during the surgery.
when Kiara comes out of theatre, she’s go to Surgical ICU. When they have transfered her from the theatre equipment to her ICU monitors etc, they’ll call you. She’ll prob be on a ventilator (breathes for her) and drips and lots of monitors.   It looks more scary than it actually is. I posted a pic of Naomi straight after surgery if you want to prepare emotionally for it. it helped me to do that, but everyone is different. up to you.
They will keep her heavily sedated for the first 2 days or so, and then ween her off the ventilator. Then gradually day by day, depending on her rate of recovery, they’ll remove drain pipes and drips and monitor equipment. Then she’ll be transfered to paed ward for the rest of her recovery.

you’ll be able to stay with her through the 1st night  in the paed ward, but you may not stay overnight in SICU. but there isn’t much you can do anyway, and you do feel a bit spare, so that’s the best time to get some rest. Kiara will need you when she wakes up. they will actually encourage you to do that. They have a phone next to each bed, so ask for the number of the one next to Kiara’s bed and you can call to check up on her. She will have a dedicated sister with her only 24hrs a day while in SICU. when she wakes up then they’ll offer her a feed.  might ask if you’d like to feed her.  Once you are transfered to ped ward, then you will need to be there all the time with her.

In ICU they will need Vasaline or lipice (her mouth might get dry and it soothes dry lips), nappies, wet wipes, socks (their feeties get cold), her bottles, pacifier (if you use one), milk (they do stock some brands, but i just took my own). then when she wakes up you can use her own blankets. by day 3 or 4 she’ll need those tops i told you about, and a toy. I also found that Naomi enjoyed glycerine on her dummy to help with the dry mouth.

-Don’t be shy to ask questions.
-Listen to the sisters, if they ask you to move aside so they can see to Kiara.
-Sometimes (but not always) in the first few days post-op, babies get overexcited when they are aware the parents are close and their heartrate and blood pressure goes up, and that is not ideal. So if they tell you that is happening and ask you to back off, don’t be offended. They are doing what’s best for your baby.
-They will ask you to wait outside when they do physio, suctions and stuff like that. It’s not fun to watch, so listen to them.

That’s most of the info i can remember, that i only found out wonce Naomi was already there.”

image shows a normal heart vs one with d-trans, VSD and pulm. stenosis. Also shows Rastelli and performance.

Originally used for the repair of d-trans of the great vessels w/ VSD and pulmonary stenosis, the Rastelli Procedure (named after Giancarlo Rastelli, Italian physician and cardiac researcher) is now used to repair most, if not all, cyanotic heart defects, or congenital heart defects causing a lack of oxygen-rich blood in the body, resulting in a bluish tint in the child especially the nail beds and mouth. This repair is done between the child’s first and second birthday, in order to maintain oxygen levels, a palliative Blalock Taussig shunt is given to the child.

The Rastelli is a major open heart operation, the patient is placed on cardiopulmonary bypass and the aorta is clamped. The surgeon will close the VSD (Ventricle Septal Defect) by way of a Darcon patch of sorts which will also redirect blood flow of the aorta. Then, the pulmonary artery is surgically disconnected and valved conduit is created using fabric, tissue from a cadaver, or the patient’s pericardium. This valved conduit is then used to attach the ventricle to the artery, the valve will open and close in time with the heartbeat allowing blood flow in one direction at a time. The procedure is extensive, lasting upwards of 9 hours.

Other repairs that can be made, if necessary are the removal of muscle tissue from the right ventricle that is either enlarged or obstructive to blood flow and the surgical closing of the pulmonic valve, should it be damaged.

Postoperative care in an uncomplicated case will last around 2 weeks. The valved conduit does not grow with the child, and periodic surgeries to replace this device will be necessary.

This is the operation that my son, Ronnie, is facing within a year.  If you, or anyone you know, has personal experience with this operation, I would like to hear from you.  I have heard from two others about how their child did following the Rastelli, I would like to hear from as many as possible.

MY SON IS 7 1/2 NOW AND DOCTORS SAY HE IS 1 IN A MILLION WITH 8 DIFFERENT DEFECTS IN ONE LIL’ HEART!! HE HAS TRANSPOSTION OF THE GREAT ARTERIES[his heart is flipped backwards],PULMINARY ATRESIA, VENTRICULAR INVERSION, P.D.A, HYPOPLASTIC RIGHT VERTRCAL, RIGHT-SIDED AORTIC ARCH, ATRIAL SEPTAL DEFECT,& VENTRICULAR DEFECT. PLUS, HE HAS P.V.L[PERIVENTRICULARLEUKOMALASIA]sp[?] which is cysts on the frontal lobe of his brain~controlling his behavior. He has had 3 surgeries already and may need another 1 in his teens.He had a shunt put in 4/10/2002[6 days old],numerous heart caths, the Glenn operation on 4/30/2003(1 YR OLD), and the Fontan operation on June 16, 2004(2 YRS OLD). he has been thru a lot at such a young age! He is my Hero!! I am Very proud of him and all we have been thru!! THANK YOU GOD!!!!

He is doing better than his doctors ever imagined !! So please have Faith. I am here to lend a shoulder to cry on or an ear to listen.

For the first month of her life, Chloe ate fine. Then it went downhill, FAST! This is typical with CHD babies. One of the first signs of a heart defect is poor eating/poor weight gain. It takes so much effort for heart babies to suck, swallow, breathe that it becomes too much for them. That’s why Chloe stopped eating altogether. So our only option was to feed Chloe via the NG tube. After she spent the first two weeks of her life in the NICU, Chloe was re-admitted at one month for failure to thrive. That is when they put in the NG tube. The hospital has a policy that one parent needs to learn how to insert the tube before discharge. My immediate response? Teach my husband. There was no way I was going to do that to my Chloe-cakes! It was hard enough watching the nurses put it in, with Chloe screaming like crazy! And how could I possibly do that while I am sobbing like crazy just watching? So it was time for Chad to learn. I, of course, was very nervous. See, the nurses usually get it in the first time. I was worried about Chloe having to suffer for too long while Chad learned how to do this. Here is how the conversation went:

Me: How many times are you gonna try?
Hubs: As many as it takes.
Me: How many times are you gonna try? (yes, I repeated the question)
Hubs: Twice.
Me: So what if you don’t get it in the first time?
Hubs: I will try again.
Me: And what if the second time doesn’t work?
Hubs: Then the nurse can do it.
Me: How long will you keep trying the second time until you let the nurse do it?
Hubs: I don’t know.

I’m sure you all can relate that when your child is in pain, time stands still. What is really 1 minute feels like 10 minutes. That’s exactly how I felt when my hubby made his first attempt with the NG tube. I, of course, started crying before he started. Just having to hold her head down was so painful for me. Then Chad started and I swear it took him 10 minutes with the first attempt (really 10 seconds). Then he actually started asking the nurse what he did wrong, which is a totally acceptable thing to do, however NOT when Chloe-cakes is freaking out and we are still holding her down! So after his ten minute discussion with the nurse (really 10 seconds), he tried again. He was still having trouble and after 10 minutes of him trying again (really 10 seconds), I started screaming at the nurse “OKAY! HE SAID HE’D ONLY TRY TWICE! YOU CAN DO IT NOW! DO IT NOW!”

And that was our first experience with the NG tube. We left the hospital without “proving” we could put in the NG tube, but my salesman of a husband convinced the nurses he could do it at home. And he was right. A week after we got home, Chloe pulled it out and Chad put it back in on the first try. And every other time she pulled it out or threw it up, Chad got it in on the first try. We became a team. I would swaddle Chloe so her arms weren’t flailing everywhere, I would have the tape ready and hold her head. We worked well together. And since my hubby travels and is gone alot, I had to suck it up and learn how to do it. You know what? I got it in on the first try! You know why? Because we do what we have to do for our kids, no matter how painful it is to us.

http://chdbabies.blogspot.com

It was just after Thanksgiving of 2008 when I told my husband that I was feeling a little sick. I thought there is no way I’m pregnant, I’ve been on birth control. But a few days later, the pregnancy test told us something different! We were both surprised, but also VERY excited. We both wanted children but we didn’t think we were ready. I guess Hailey told us that it was time, and we were ready.

Then on March 4th 2009 we were so excited because we were going to find out if we get to pick out blue or pink clothes. We found out we were having a little girl, but at the same time the UT was taking a very long time with the ultra sound focusing on the heart. She later left the room and then the Doctor came in to tell us what first time parents never want to hear. “There’s something wrong with the baby’s heart” I don’t remember much after that through all the tears. But we were scheduled the next day to get a Echo done at Doernbecher Children’s Hospital in Portland, OR.

The night before the Echo, we were hoping the doctor was wrong, and that she just couldn’t see the heart very well. We were hoping at this next appointment they would say “Oh she made a mistake, there’s nothing wrong”. But instead they said “Your baby has Hypoplastic Left Heart Syndrome” We were devastated.  Then they gave us three options. The first one was to terminate the pregnancy (no way in hell!!) the next one was to give her “compassionate care” (basically take her home and let her pass away) again, no way!! And the third was a series of open heart surgeries. We went from blue or pink, to live or die. Of course we chose the open heart surgeries.  We wanted to give Hailey every chance at life that we could. We are not the ones to determine whether she lives or dies.

After that day, I spent most of my free time researching HLHS and other families going through the same thing. I met a lot of wonderful families and many survivors from HLHS. So we had lots of hope for Hailey.

Then on July 17th we had our scheduled induction date and after 30 hours of labor, Hailey arrived via C-Section at 4:09 pm on July 18th 2009. She was 7 pounds 12 oz and 20.5 inches long. She was BEAUTIFUL!

The sad thing was I did not get to hold her. They rushed her away to start running tests and placing IVs. I finally got to see her about 2 hours later. I still didn’t get to hold her. I could only look at her and rub her little hand. The next 2 days were just the same. No holding, just standing over her little bed and rubbing her hands and letting her grab onto our fingers. On the morning before her surgery on the 21st, we finally got to hold her! That was one of my happiest moments since arriving at the hospital. Then they came in to wheel her away to her first open heart surgery at just 3 days old.

Her surgery was very long! 14 hours to be exact. The outcome was not good. Besides the HLHS she also had a very leaky tricuspid valve and coronary fistulas (where the veins leading from her heart to her lungs were too small). She came out of surgery on a machine called ECMO. It’s basically doing all of the work her heart would do, because her heart was not beating on it’s own. The next day she went to the cath lab where they inserted 3 different stints into these veins that were too small. Then 6 days later, she was able to come off of the ECMO machine! We were so happy!

But she ended up spending 3 weeks on the ventilator because she was so sick. After those 3 weeks they took out her breathing tube but she only lasted a day without it. After 3 more failed attempts it was determined that Hailey needed to go back to have another open heart surgery to fix her leaking tricuspid valve (the reason she could not get off of the vent) So on August 21st she had her second open heart surgery. This one went much better! No ECMO and only a week on the ventilator. She came off no problem. Then about a week later she had an infection in her gallbladder so she needed to be re intubated because of the infection she was having a hard time breathing. This time she was only intubated for 3 days. She ended up getting a drain in her gallbladder which had to be left in for 6 weeks. 

But this fix to her valve wasn’t good enough. It needed to be replaced. She remained on an IV of Milrinone to keep her heart beating strong while she waited to grow big enough to have that valve replaced. During this time, we really got to know Hailey and her personality. She absolutely hated mornings (just like her mom) and she loved to be held and get all of the attention from anyone who was in her room. If you didn’t pay attention to her, she would let you know she was there! She also loved her little mobile, her favorite piece was a little blue horse. We had many fun days with her as we played with her and held her as we fell asleep.

Finally on November 24th Hailey was big enough to have her tricuspid valve replaced and also have her next stage in the HLHS series, the Glenn. It was another long surgery but she came out strong! No ECMO again. She had a beautiful color and she even opened her eyes to peek at us.

Three days after her surgery, her chest was closed. That’s when all the problems started. The night she got her chest closed is the first time she crashed. Her blood pressure just took a nose dive. They gave her CPR and got her back in only a minute or 2. But then it happened again 2 days later. Again they got her back, but it took a little bit longer. So they decide she needs to go to the cath lab to find out what’s happening.

December 2nd we give Hailey a kiss and tell her how much we love her as they wheel her down to the cath lab. Just a simple procedure right? Well just after they insert the dye they see the problem, but then she crashes and they can’t fix the problem while giving CPR. They worked on her for almost an hour. There was nothing else they could do, she was gone. A stint had come loose and was blocking the blood flow to her lungs. I wish they would have gone to cath lab a lot sooner. But there is nothing we can do about that now.

My husband and I waited in her room as they bring her back in, still doing CPR to keep her heart going until they can put her in my arms. They stopped CPR and placed her in my arms as her heart took it’s last beat. I held her for hours telling her how much I loved her and how sorry I was that this is how the end had to happen. Then my husband also held her for hours as we just cried until we couldn’t cry any longer. We then put her back on her bed and the nurses took out all her lines and IVs. Then we gave her a bath and put her in her last outfit. We said our goodbyes and left that hospital for the last time, without our baby girl. It wasn’t supposed to be this way. She was supposed to come home for Christmas. I guess she is always here with us now, only in spirit.

I love you so much Hailey. I would give anything to have you back. But I know you aren’t in anymore pain. No more doctor visits, no more poking and prodding. And no more surgeries.   Rest in peace my Angel. I can’t wait until I get to hold you in my arms again.

Love,

Mommy

Heart defects come in all types, from minor to major. Defects can occur inside the heart or in the large blood vessels outside the heart. The heart defect may need immediate surgery or may be able to safely wait for months or years. In most cases, the timing of the surgery will depend on how sick the baby is.

The heart defect may be repaired in a single surgical procedure or may require a series of procedures. Surgery may involve opening the heart to repair defects or repairing defects of the blood vessels.

The type and timing of surgical repair depends on the child’s condition and the type and severity of heart defects. In general, symptoms that indicate that surgery is needed include the following:

• Blue or gray skin, lips, and nail beds (cyanosis), meaning there is not enough oxygen in the blood (hypoxia)
• Difficulty breathing because the lungs are “wet,” congested, or fluid-filled (congestive heart failure)
• Problems with heart rate or rhythm (arrhythmias)
• Excessive workload on heart that interferes with breathing, feeding, or sleeping
• Poor weight gain and difficulty feeding (taking too long for your child to eat, not eating at all)

You’ve been told your baby needs open heart surgery. Knowing what to expect before and after your baby’s operation will make the experience easier for the whole family.

Chances are your newborn is in the intensive care unit, or NICU. This is also where most of your infant’s pre- and post-operative care will take place. To reduce the risk of infection, hospitals often restrict visitation to parents only. You should wash your hands before holding your baby, and avoid close contact if you are sick. An older child will likely be taken care of in a pediatric intensive care unit (PICU) after surgery.

Many parents say the hardest part is saying goodbye to their babies as they are wheeled off to surgery. Feelings of fear, sadness and guilt are common. Talking to a nurse or social worker about these emotions can help you deal with all the stress and anxiety.

In the operating room -
During open heart surgery, an incision may be made through the breastbone (sternum) and between the lungs (mediastinum) while the child is under general anesthesia. For some heart defect repairs, the incision is made on the side of the chest, between the ribs (thoracotomy) instead of through the breastbone (sternotomy).

It is sometimes necessary to use tubes to re-route the blood through a special pump (heart-lung bypass machine) that adds oxygen to the blood and keeps it warm and moving through the rest of the body while the repair is being done. This machine does the work of the heart and lungs during the operation.

Heart surgery for children requires a specialized team of health care providers:

* Pediatric heart (cardiovascular) surgeons
* Pediatric anesthesiologists
* Pediatric heart-lung (cardiopulmonary) bypass pump technologists
* Pediatric surgical nurses and technicians
* Pediatric intensive care physicians and nurses

Heart surgery requires intensive and extensive monitoring, treatment and coordination by the entire team. Heart surgery for children may take as many as 12 hours in the operating room.

Recovery -
After heart surgery, the child will be moved to the neonatal or pediatric intensive care unit (NICU/PICU) to be constantly and closely monitored and treated for several days. When you are reunited with your child, the tubes and equipment you’ll see around your child’s body can look scary. Your baby may still have IV lines in place for fluids and medications, be on a ventilator to help with breathing and have chest tubes to drain blood and fluid. Some babies may need extra oxygen, which is given under a clear plastic tent. During this time, your child may have the following:

• An Endotracheal Tube is usually inserted through the mouth, into the windpipe or trachea, to provide an airway. It will be taped over the child’s nose and mouth.
• Your child will also be on a respirator to help with breathing. This is a mechanical device that ventilates the child by providing air to and from the lungs while removing carbon dioxide from the body. Your child will be kept sleeping (sedated) while on the respirator.
• One or more Central IV lines placed in a vein that leads to the right atrium. Their purpose is to monitor central heart pressures and give fluids and medications.
• An Arterial Line, which is a small tube in an artery (one of the vessels that pulsate) to measure the blood pressure and oxygen levels.
• One or two Chest Tubes which are placed into the space between the chest wall and the lung, called Pleural Space. These are placed after heart surgery to prevent accumulation of body fluids. The chest tubes drain air, blood, and fluid from the chest cavity. This drainage should diminish in amount daily.
• A Nasogastric Tube (NG tube) to empty the stomach and give medications and/or feedings for several days.
• A Foley Catheter, which is a tube placed in the bladder to drain and measure the urine for several days. It is held in place by a small balloon, which is inflated in the bladder after insertion.
• Oxygen may be needed after surgery. It can be delivered by room air, through the ET Tube, through a mask or through a tube called a nasal cannula.
• Your child will be monitored with a Pulse Oximeter. It is a noninvasive sensor that is clipped to yourchild’s finger, ear or toe to monitor blood oxygen levels.
• There will also be other heart monitoring equipment near the bedside in the room. Leads will be placed on your child’s chest to monitor heart rythmn, heart rate, respiratory rate and any central line pressure readings.

Your child may also have pacemaker wires in the chest in case a pacemaker is needed to regulate heartbeat and rhythm.

Your baby will be sedated and sleepy for a while after surgery. The length of the hospital stay will depend on what type of surgery was performed and how quickly your baby recovers. It may take a few days or a few weeks.

Going home -

When your baby can go home, you’ll have to be careful to avoid exposure to illness. That means you may need to stay inside the house for a while with limited amount of visitors. Your baby may also have to take many medicines at different times of day. A chart with a dosing schedule can help you keep track. The doctors will provide other instructions on how to care for your baby, like keeping the incision clean. They’ll also show you the safest way to pick up your infant after surgery.

It’s hard for parents to see their children go through something like surgery, even when it’s so important for their health. Knowing what to expect in advance can make the experience a little easier to bear.

Kelly Manz                                                                              http://chdbabies.blogspot.com                                                                                  Mom to Chloe, 11-04-08,                                                                                          Taussig-Bing (DORV, d-TGA, VSD, ASD)