Gracie Ruth Jasek. You're here. Not without lots of twists and turns though, of course. So, sweet baby girl of mine, here is how it all went down:
Tuesday, December 20th through Wednesday, December 21st:
Matthew was not feeling well, so right after work, I picked him up from Gigi's and took him to the doctor. We went to the pharmacy and got his medicine and then went on home to wait for Daddy. Nothing really extraordinary happened to make me think that "this was the day."
I went to bed around 9:30pm(ish) and at about 10:15pm, I woke up suddenly, thinking I was peeing on myself. I walked very carefully to the bathroom, trying very hard to stop but I couldn't. I sat on the toilet for what seemed like a half hour. It was probably only 5-10 minutes and everytime I stood up, I started to pee again. Finally, I put a towel between my legs and woke your Dad. I told him that I thought my water had broke.
Your poor Dad! He had taken medicine to help with his shoulder and his leg that has been hurting him for years now and also a sleeping pill. I don't think he knew where he was, much less what I was saying. However, he sat straight up in bed and said, "What do we do?" I told him that I didn't know! So I told him to go back to bed and I would sit up a little longer and look on the internet for symptoms of my water breaking.
While I was typing in some search words, another gush of water came out and I got a contraction. That was it. I knew it was happening and I was scared to death. IT WAS TOO SOON. I was only 31 weeks pregnant with you. You needed to be at least 36 weeks and really 40 because of your heart condition. I was devastated but I tried really hard not to let your Daddy worry because, really, there was nothing he could do.
I went back in the bedroom and told your Dad that my water had definitely broke and I was going to take myself to the hospital. He was confused and kept saying that he would drive me but I reminded him that Matthew was asleep in the other room and it would be better for me to go on ahead and go and find out for sure if my water had broke and I would call him as soon as I knew something.
I got in the car and as I was backing out of the driveway, realized that there was no gas in the car. *sigh* Of course. So, on the way to the hospital, I stopped at a gas station in a hot pink tee shirt, and hot pink leopard print pajama bottoms and started to fill up the tank. Right as I was putting the nozzle away, a huge gush of water came out and I bent over trying to stop it. Of course, a police officer was standing right there when it happened and ran over to me to ask me if I was okay.
And, hahahaha, just like is my style, "I looked at him and said, "Oh, yeah, I'm fine. My water just broke and I'm on my way to the hospital."
His eyes became as big as silver dollars and he said, "No, ma'am, you are not going anywyere. And he called an ambulance. So I had to call Gigi and she had to come get Daddy so he could get the car.
When I got to the hospital, I called Daddy to confirm that my water had broke and they were transferring me to the Medical Center downtown so that I could have you. They did not have the facilities to take care of you being born so prematurely and also with your critical heart condition.
We then had to call Gigi back and she had to go back and get Daddy and Matthew and drop Daddy off at the hospital so he could ride in the ambulance with me and she and Matthew went home to wait (and hopefully get some sleep, too!).
Man, that ambulance ride to St. Luke's in the Medical Center. We should have had to paid money to ride that ride! That driver must have been going 80 miles an hour! I was jostled and jolted around in the back of that thing having contractions and scared to death that woman driver was going to shake you out of me! Daddy said the ride up front wasn't all that much better.
We got to the hospital and they started monitoring us. At first, it looked like everything was going to be okay and I was going to be able to hold out and keep you inside growing a little longer.
However, by about 7pm on December 22nd, it was obvious that you weren't going to wait and I was going to have to have you.
Thursday, December 22, 2011:
They start to prepare me for labor with you by beginning my epidural. I was scared to get the epidural because of all the side effects from it. However, I had one with Matthew and had no issues, so I figured it would be the same with this one.
They put the epidural pretty high up though and it relaxed my chest, too, and I began to feel like I couldn't breathe. I started to panic and told a nurse that I thought something was wrong. She said she would send an anesthesiologist in and try to figure it out.
In the meantime, a resident came in and began to explain to me that you were not doing well with the pitocin and that you were stressing in the womb and it looked like they would need to do a c-section. However, she wanted to wait until morning when everyone was there, except that they really needed to get you out of there. She was very confusing and she kept sighing and acting like you were going to die. I finally had enough and told her angrily that if all she was going to do was stress out and sigh and give me bad news, that I wanted to talk to my doctor and she could just leave.
At that moment, a nurse came in and said that my doctor was on the way and he would talk to me about what needed to happen and assess the situation.
A few moments after that, the anesthesiologist nurse came in and I thought it was to check my breathing. Instead, he said that he was going to give me MORE medicine and numb me even higher up. I became hysterical. I told him, "YOU WILL NOT! I CANNOT BREATH! WHAT IS WRONG WITH YOU?" And he seemed really confused, which scared me even more, and said that he HAD to because they were about to take me into the operating room for a c-section. Again, I panicked even more and said, "NO! NO! NO! MY DOCTOR IS ON HIS WAY AND HE IS GOING TO ASSESS EVERYTHING AND THEN WE WILL DECIDE WHAT IS GOING TO HAPPEN!"
I started to cry and hyperventilate and I started to tell everyone to leave and take all these tubes out of me. I wanted to go home. They didn't know what they were doing and they were going to do something wrong. Daddy was beside himself with worry. Gigi was there and didn't know what to do either. We were all confused.
Suddenly, like a Super Hero, the doctor came in, Dr. Haeri, and he explained to me that he had told them that they would have to do a c-section when he got there and he would explain it to me when he arrived. So, they did KNOW what was going on and I did try to calm down, as best as I could not being able to breathe.
Honestly, I was so scared. I have never really had "real" surgery. Your Dad stayed by my side the entire time though. They made Gigi wait in a waiting area though and she was so scared. My poor Mom! Little sidenote here: Let me tell you, your Gigi was a TROOPER! She may have to get a little award that says, "Trooper of the Night!"
There was an anesthesiologist nurse that talked your Dad and I through the entire procedure. He would tell us as something was about to happen. At one point, I apparently grabbed my surgeon's arm and held it! And I kept asking, "Are we almost done? How much longer now?" Finally, Dr. Haeri says to me, "Do you want me to do this right or do you want me to do this quick?" I feebly but quickly said, "Right." And he said, "Okay then." I promise you that I didn't ask not one more time if he was almost done or how long it was going to take!
FINALLY, they had you out but you weren't crying. It alarmed both Daddy and me. Daddy even asked if you were okay. They said that you were but they had to take you immediately to your neonatologist and they took care of you while the doctor's tried to put me back together.
Sometime during all of this, the neonatologist doctor came in and shook my hand and talked to Daddy. I was in so much pain at that point, all I knew was that Daddy was sitting on the floor talking to someone and it confused me why he was sitting all the way on the floor on his knees stooping down like that to talk to someone. I thought that I must really be out of it. Later, I found out that your neonatologist is famous. Dr. Arnold from The Little Couple show on TLC. She told Daddy that you were doing okay and they would bring you in so we could see you in just a few minutes.
The anesthesiologist nurse told me that I was going to start feeling tugging and pulling as they were putting things back together. He was right about part of that. What no one realized is that my epidural was wearing off. Daddy said that the more they were tugging me, and I was shaking all over the table from the force of their pulling and pushing, that I started crying out in pain. I kept saying, "Help! It hurts! It hurts! I can feel it! I can feel everything. Oh, please stop!"
They chose this wonderful moment to bring you in so I could see you. I don't remember them bringing you in but I DO remember and will NEVER forget you grabbing my hand from your incubator. You had such a strong grip. It was then though, that they told Daddy he needed to leave because they were going to have to put me completely under to finish the procedure.
None of us knew this but I had scar tissue severely all over my uterus and they were not able to get it back into my body. In fact, the entire c-section went awry! You were literally sitting directly against my pelvic bones and because you were so low, they had to make an extra cut to get down far enough to get you. When you came out, you poor thing, you looked like you'd been in an MMA fight! You had bruises on your arms and one enormous black eye but you had the cutest, fuzziest head of blonde curls, I have ever seen. I don't think I have seen a baby with that much hair. Can you even imagine how much hair you would have been born with had you been able to have gone full term? Then they had to make another cut to get my scarred up uterus back in. Sheesh, we are some pair, huh? Hey, no one ever said we had to make it easy for them, right?
I started to come back out from under all the anesthesia and everyone was making fun of me. I guess I got a little goofy right before they put me under! I asked where your Daddy was and someone told me that he had to leave but he put up a good fight to stay with me. I was proud of your Daddy for keeping his promise to me that he would not leave. Actually, that's a funny story. At one point during the procedure, they were telling your Dad that he could leave to go tell your Gigi how everything was going and I looked over at him horrified and said, "Oh dear God, Darrell, please don't leave me in here alone. I'm afraid I'm going to die." And ever the supportive spouse, your Daddy looked over at me just as horrified and said, "I know. Me, too. I won't leave you." :-/ Had I not been so out of it, I would have probably turned and looked at him and given him the "Gee, thanks for the support" sideways glare. It always makes him laugh when I look at him like that.
I'm not really sure about many of the details after the c-section started so I am going to have your Daddy and your Gigi write their stories out because they are the people with the fun stuff. When your Dad went to see you, he was greeted by a film crew and they were interviewing him and had filmed most of what went on after you were taken out of my uterus and into the world. I am so thankful for that because at least I will be able to watch that on TV and see everything I missed while I was out of it. Supposedly, you will be on next seasons "The Little Couple" television series. They told your Daddy it was called, "The First 24 Hours."
Your Daddy and your Gigi were with you the entire time that they were stitching me back up and putting me back together and they were so amazed by you. Gigi just cannot get over how completely adorable you are! She's on Cloud 9! She's already planning for when she gets to babysit you. I told her, "I don't think so! I couldn't bring her home from the hospital with me. Good luck babysitting this one, Mom!" She just laughs and threatens to come steal you for the weekend whenever you get home.
Your Daddy went to see you every day, several times a day, that we were in the hospital after you were born. He is so faithful to you. It makes me love him so much more watching how he loves you like that.
It has been touch and go with you since you were born. At first, you came on like a hurricane and within a day, they had you off of your ventilator. However, they did notice that you were struggling to breathe and put you on what is called a CPAP. It is a device that helps you to keep your lungs open. So you ARE taking in oxygen without a beathing tube, you do need some help keeping your lungs open. They keep trying to take your CPAP down from an 8 to a 6, but you kept struggling until yesterday, the 28th. You have finally been able to tolerate being on a lower setting of 6!
Also, you have not been tolerating your feedings. Your little tummy doesn't realize that you need to digest the milk they are feeding you. However, as of yesterday, you started digesting your food! Daddy asked the nurse and she told him that you are eating my milk that I have been pumping. That makes me feel so much better. You do still have a feeding tube in right now because you don't quite know how to swallow yet. All in good time, my girl, and I will be able to nurse you. I can't wait to hold you in my arms and smell you and watch you as you eat. Oh, the joy that day will bring. I will cry like a baby the entire time, I'm sure.
The day after we got released from the hospital, I woke up gasping for air. I guess I got bronchitis while in the hospital. So, I am having to pump and freeze my breast milk because there is so much medicine in it and I'm afraid to give it to you while you are on the "mend" so to speak. So I freeze and hope you get strong enough and hope I get better so I can get off of all these medicines! Also, I'm not allowed to see you right now because I'm so sick. Only Daddy is allowed in at the moment. But he goes every single day and takes lots of pictures so I can see you, too. He puts me on speaker phone so I can talk to you while he's there, also. It isn't the same as getting to hold your little hand, but it's all I can do to be close to you right now. Also, every morning and every night we all get the nurse to put us on speaker phone in your incubator and we tell you "Good Morning/Night" and that "we love you." Again, it isn't like being there, but it's as good as we can do right now.
I cry ALL the time. I miss you so much. All I want is to crawl into that incubator with you until you are able to go home. Right now, I can't even see you. I am so grateful that at least your Daddy is getting to see you and spend time with you. *sigh* All in time. I know. One day you are going to be here and I am never going to put you down! I'm not even going to buy you shoes until you are in kindergarten because I am going to hold you so much you won't even need them!
I love you, Gracie. I love you with everything in me. I am so sorry that I couldn't keep you in my womb longer. It hurts me deeply. I feel like I have done something wrong. Maybe if I did this or I did that or whatever, you wouldn't have been born so soon. I trust God and know that He has all of this under control and He isn't worried one bit but I can't help but feel like there was something I should have done differently to have given you a better start on your life.
It's a wonderful thing that happened when you entered our world though. Our hearts grew to accept you into them and by doing so, we love each other more. We have been reminded by you of how important our family is. While we always loved each other and loved Matthew, you have reminded us how important it is to not take anyone for granted. You are barely 2 weeks old, and you have already taught us so much about love and life and our family. Thank you, little precious daughter of mine. Thank you for being my daughter. My precious girl. I love you with a strength that I did not know I possessed.
You just keep on fighting and showing them just how feisty you can be and you keep proving everyone wrong and grow strong and wonderful!
Thursday, December 29, 2011
Wednesday, December 14, 2011
I love you so much
I am reading about the surgery that you are going to have after you are born and I can hardly breathe. My little baby...my sweet, precious baby...why can't things just be normal for you? My God, you are not even born yet and you have already struggled for every stage of your life.
I am pasting the description of your surgery and outcomes below so when you read this later, you will know just how brave and courageous you are.
Gracie, I love you so much. I just want you to be alright. That's it. Just be alright. I will deal with anything else that you need. I promise you.
Tetralogy of Fallot is the most common congenital heart defect causing cyanosis (bluish discoloration of skin caused by oxygen-poor blood reaching the general circulation). An embryologic failure of the right ventricular outflow tract to form properly results in the 4 cardiac abnormalities characteristic of TOF:
A complete TOF repair is an open-heart procedure performed to correct this congenital heart defect.
For patients who are hospitalized the night before surgery, an intravenous (IV) catheter may be placed. This will allow intravenous fluids to be given once NPO (nothing by mouth) status begins.
All patients – whether they are admitted to the hospital or not - will be placed on “NPO” (nothing by mouth) status after midnight the night before surgery. Clear liquids may be allowed at the specific instructions of the anesthesiologist.
On the morning of surgery, your family will meet our staff on the 18th floor of the West Tower. You will be greeted by a receptionist and given a private waiting room. Approximately one hour prior to surgery, the patient will be taken to the holding area, dressed in hospital pajamas, and placed in a crib or bed. The anesthesiologist will order some medication to be given that reduces anxiety. This medication is given by mouth or IV, and will allow the patient to relax and become sleepy.
Anesthesiologists who specialize in pediatric cardiovascular anesthesia will manage the anesthetic care of the patient throughout the surgery. They collaborate closely with the surgeon and the rest of the OR team to monitor and manage the patient’s care in the operating room. Based on their pre-operative assessment, they will individualize the anesthetic to meet each patient’s physiologic needs. In most cases, a general anesthetic approach is used which results in the patient being completely unconscious and pain-free during the entire surgery as well as shortly afterward. During the surgery, several specialized neurophysiologic monitors are used to ensure that the anesthesia is effectively maintaining the patient in a fully unconscious and pain-free condition.
The type of surgery your child will undergo depends on your child’s heart defect. Prior to the surgery, the surgeon will have a detailed consultation with the family to explain the specific surgical procedure, discuss risks and benefits, and answer any questions the family may have. Throughout the actual operation, a surgical nurse clinician will update the family approximately every hour during your child’s surgery. These updates will be given in the private waiting room assigned by the receptionist.
Preparation: The anesthesiologist and the operating room nurses will escort the patient into the operating room. A heart monitor will be connected to the patient that will show the OR team a continuous read-out of the heart rate and rhythm throughout the surgery. The patient will be given a mask through which they will breathe a gas that causes them to fall deeply asleep.
Once the patient is asleep, the anesthesiologist will put a breathing tube (endo-tracheal tube or ET tube) into their windpipe. This tube is attached to a breathing machine (ventilator) that will do the breathing for the patient during their surgery. Once the ventilator is secured, the anesthesiologist will place several intravenous (IV) catheters in the patient’s veins. The sites typically used are the large vein in the neck or the groin. There may be one or two more IVs placed.
Once the IVs are secured, intravenous fluids and medication are given through them throughout the operation. Another special catheter (arterial line) is placed in an artery (the blood vessel which has a pulse). The arterial line is used to monitor blood pressure during and after surgery. This special catheter is also used to draw samples of blood to obtain various laboratory values. The sites usually used are in the wrist or the groin. A nasogastric (NG) tube is placed in the nose and gently guided down to the stomach. The stomach will continue to produce juices even though there is no food in it. This may cause the patient to become nauseated and vomit. The NG tube will empty the stomach and prevent vomiting. Another catheter (Foley catheter) is placed in the patient’s urinary opening and guided gently to the bladder. This catheter is attached to a device that drains and measures the urine produced during surgery. All of these procedures are performed after the patient is deeply asleep. This whole process may take from one to one and a half hours.
Once all the lines and tubes are in place, a transesophageal echocardiogram (TEE) is performed. A cardiologist will place a probe into the patient’s mouth and gently guide the probe down the esophagus. The TEE probe rests behind the heart and provides the surgeon with a continuous picture of the structures of the heart during the operation. When the TEE is completed, it is time for the surgeon to begin the operation.
A median sternotomy incision is used for “open-heart” surgery (surgery that occurs inside the heart). This incision usually begins at or below the top of the breastbone (sternal notch) and goes straight down the sternum (breastbone). The breastbone is then separated to expose the heart. The patient is then placed on the heart-lung bypass machine, a device that provides blood flow to the body and “bypasses” the patient’s heart and lungs. Diverting the heart’s blood flow to the bypass pump allows the surgeon to open the heart and operate on the structures inside the heart. The heart-lung bypass machine provides continuous oxygenated blood to the other organ systems during the open-heart surgery. Depending on the location of the defect, an incision will be made in either the right atrium, the pulmonary artery, or the outflow tract of the right ventricle (infundibulum). The right atrial approach in which the VSD is patched by working through the open valve (tricuspid valve) between the right atrium and the right ventricle is preferred. This approach prevents having to make an incision in the right ventricle, which can lead to future right ventricular failure. The patch for the VSD is created by the surgeon from either the patient’s own pericardial tissue or a synthetic material such as Dacron, then sutured into place to close the defect. Any obstructive tissue in the right ventricular outflow tract is cut away (resected). A second incision is made in the main pulmonary artery, and this approach is used to complete the VSD closure and any additional resection of obstructive tissue. Additional work may be needed to widen a narrow pulmonary artery or valve, such as a patch. In some cases of severe obstruction, or absence of the pulmonary artery, a conduit may be placed between the right ventricle and pulmonary arteries to provide an open communication for blood to flow to the lungs. After making these repairs, the atrial, pulmonary artery and/or infundibular incisions are then closed with sutures.
Once the surgical procedure is completed, the patient will be weaned gradually off of the heart-lung bypass machine until the newly repaired heart is managing all the blood flow again. Chest tubes will then be placed to drain the surgical area. These tubes are positioned at the base of the incision. There will be 1-3 chest tubes placed for most surgical procedures. Temporary pacing wires are also placed at this time. These are very small wires that are positioned on one or both sides of the incision. These pacing wires may be used temporarily to pace the heart rate and rhythm if needed in the post-operative period. Intracardiac monitoring lines may be placed depending on the type of surgical repair. These special catheters are placed in the chambers and vessels of the heart to provide the surgeon and the postoperative team with valuable information about the pressures within the heart and lungs. A postoperative TEE will be performed which provides the surgeon with valuable information after the surgical repair. Once the TEE is completed, the surgeon will close the sternum. The sternal bone is brought together, and stainless steel wire secures the sternum.
The type of skin closure the surgeon uses is dependent on age and weight:
After closure of the incision, a dressing is placed that remains in place for the first 24 hours after surgery. The anesthesiologist and the operating room nurses then secure all the patient’s tubes and lines, and prepare for transport from the OR. The patient is moved from the operating room table onto an intensive care bed and transported to the Cardiovascular Intensive Care Unit (CVICU).
The patient will be transferred to the Cardiovascular Intensive Care Unit (CVICU) by the cardiovascular anesthesiologist and the team of operating room nurses. The CVICU is situated directly adjacent to the cardiovascular operating rooms to maximize patient safety. This makes the transition from the operating room to the CVICU a smooth process. Once the patient arrives in the CVICU, a thorough report of the surgical procedure is given to the Cardiologist and the CVICU nursing team who will be managing care in the CVICU. The surgeon will update the family on the operation once the patient is settled into the CVICU. Family members may usually visit the patient within an hour after arrival to the CVICU.
While in the CVICU, the patient will continue to be monitored closely. In addition to monitoring heart rate and rhythm, and respiratory rate, the monitor will also display other pressures and waveforms, which assist the cardiologist in managing care. A chest x-ray (CXR) and lab work will be performed on arrival and periodically throughout the stay in the CVICU.
The CVICU is open to visitation 24 hours a day. No more than two visitors are permitted to visit in the CVICU at a time. Children under the age of fourteen years are not allowed on the 18th floor in order to protect the patients and the children from infection. A limited number of rooms are available for sleeping at night, and they are assigned on a first come, first served basis. The receptionist will provide you with the CVICU visiting policy and the process for the use of the sleeping rooms.
The CVICU team will continually assess the patient’s comfort level. Medication will be given to reduce any pain or anxiety they may experience after their surgery. These medications are initially given by IV and then gradually changed to medications that can be taken by mouth. Comfort measures provided by the family are encouraged. Talking quietly to the patient is important even if the ETT is still in place (the patient will not be able to speak when the ETT is in place). Hearing your voice usually will assure the patient that you are close by and may make them feel more secure. Other comfort measures such as listening to soft music or helping patients change their position in bed regularly may also decrease their anxiety or pain.
Once the patients are awake enough to breathe on their own, the breathing tube (ETT or endotracheal tube) is removed. Depending on the surgery performed, this may take anywhere from a few hours to a few days following surgery. Once the surgical dressing is removed, the incision will remain open to air. The nurses will cleanse the incision with a Betadine solution twice a day. A small gauze dressing will be placed over the insertion sites of the chest tubes, intracardiac lines, and pacing wires. Gradually the tubes, wires, and intravenous lines will be removed as the patient’s condition improves.
When the patient has a stable blood pressure, a stable heart rate and rhythm, and can breath well on their own without the ventilator, they will be transferred to the cardiac inpatient floor, 15 Tower. As the patient improves, their activity level will gradually increase until they are doing well enough to be discharged from the hospital. Before leaving, the family will be instructed in how to care for the patient at home, including information on medications, incisional care, and activity limitations.
The length of time in the hospital will depend on a variety of factors:
In general, patients can expect to stay anywhere from 3-10 days, depending on the above factors. Patients who live greater than an hour’s drive from Houston may need to make arrangements to stay in the Houston area until after their 1st post-operative cardiology clinic visit (1 week after discharge).
Risks associated with congenital heart surgery vary widely according to the specific procedure and the patient’s condition at the time of surgery. They can include:
Your surgeon will discuss the specific risks associated with your child’s congenital heart surgery at the time of your consult. In our program, the risk of serious complications occurring, such as brain damage or death, is very low. Our surgeons have a very large experience and can provide specific data to you defining the surgical risk for your particular procedure. We believe this important information must be shared with parents to make the process less stressful.
Before the patient is discharged from the hospital, your family will be given detailed instructions that are individualized for the specific procedure performed. However, in general, patients should contact their doctor for any of the following after congenital heart surgery:
Patients who have had a sternotomy should avoid any activity that causes strain on the chest for at least 6-8 weeks, so that the breastbone can heal. For infants, avoid picking them up by arms (“scoop” them up instead); for older children and adults, avoid activities that involve pulling or pushing with arms as well as contact games/sports.
I am pasting the description of your surgery and outcomes below so when you read this later, you will know just how brave and courageous you are.
Gracie, I love you so much. I just want you to be alright. That's it. Just be alright. I will deal with anything else that you need. I promise you.
Tetralogy of Fallot (ToF) Repair
| Related Clinics & Centers |
| Adult/Pediatric Congenital Heart Surgery Service |
| Related Diseases |
| Tetralogy of Fallot (TOF) |
| Related Physicians |
| Charles D. Fraser, Jr., MD |
| Jeffrey S. Heinle, MD |
| E. Dean McKenzie, MD |
Complete Tetralogy of Fallot (ToF) repair:
Tetralogy of Fallot is the most common congenital heart defect causing cyanosis (bluish discoloration of skin caused by oxygen-poor blood reaching the general circulation). An embryologic failure of the right ventricular outflow tract to form properly results in the 4 cardiac abnormalities characteristic of TOF:
- ventricular septal defect – VSD (an abnormal opening between the two lower chambers of the heart)
- pulmonic stenosis – PS (a narrowed area within the main pulmonary artery, at, above or below the pulmonary valve)
- a malpositioned aorta in which the entrance to the aorta over-rides the VSD
an overly muscular right ventricle (ventricular hypertrophy)
A complete TOF repair is an open-heart procedure performed to correct this congenital heart defect.
What do we need to do before congenital heart surgery?
- If at all possible, it is important that the patient be free of infection prior to going to surgery. This includes dental cavities, so a dental check-up and any dental work required should be completed within 6 weeks prior to surgery. A letter is required from the dentist clearing the patient for surgery. In addition, if the patient develops other signs and symptoms of an infection, such as a fever, runny nose, diarrhea, or vomiting, contact the surgeon’s office immediately.
- Please contact your insurance company to verify insurance and determine whether a referral is required. If your insurance requires a referral, have your Primary Care Physician’s office fax the referral to Congenital Heart Surgery at (832) 825-2013.
- If the patient is taking aspirin, contact the cardiologist to ask when to discontinue taking the aspirin. Aspirin is generally discontinued 14 days prior to surgery to minimize the risk of excessive bleeding. However, there may be a medical reason to continue the aspirin, so it is important to check with the cardiologist.
- Patients who live more than an hour’s drive away from Texas Children’s Hospital will need to make arrangements to stay in Houston for at least one full week after discharge from the hospital. This is important to ensure a rapid response to any early post-operative issues. The Texas Children’s Hospital Social Worker can assist if any help is needed making arrangements for this.
- If the patient is due for immunizations within a week of surgery, contact the Congenital Heart Surgery Clinic and ask to speak to the clinic nurse.
- Patient’s undergoing cardiac surgery frequently need blood products. Patients and families interested in donating blood should call the Congenital Heart Surgery Clinic and ask to speak to a clinic nurse. Families and friends may donate blood in one of two ways:
- Credit: For each unit of blood donated, a credit will be given on the patient’s bill, but the blood donated will not specifically be designated for the patient. Blood donated can be any blood type.
- Designated (or Directed) Donation: Blood donated will be used for the patient designated. For congenital heart surgery patients, blood donors must be the same blood type as the patient. For “Designated Donation,” it is very important before you donate that you call the surgeon’s office to let us help you coordinate the donation. The pertinent patient information we need when you call is:
- the patient’s weight
- blood type
- surgery date
- type of surgery
- The best time to donate blood is one week prior to surgery and no later than three days prior to surgery. There is a cost associated with directed donor blood that may not be covered by your insurance. It will be the family’s responsibility to cover the cost of directed donor blood that is not covered by insurance.
- If the patient is taking “blood thinners” such as Coumadin or Lovenox, please contact the Congenital Heart Surgery Clinic and ask to speak to the clinic nurse. These patients may need to be hospitalized a few days prior to surgery to discontinue these medications and convert to Heparin prior to surgery. This decision will be coordinated between the patient, surgeon and cardiologist.
- Registration and admission into Texas Children’s Hospital is usually scheduled to occur the day before surgery. Patients and their families should arrive at 8:00 a.m. in the Congenital Heart Surgery Clinic located on the 20th floor of the West Tower. We conduct a very thorough pre-operative work-up in order to attain the very best surgical outcome for the patient, so the preoperative work-up will take several hours. A cardiologist performs a physical exam and multiple tests will be performed to ensure the patient is well for surgery. A chest x-ray (CXR), an electrocardiogram (EKG), and lab work will be performed as part of the preoperative process. A Congenital Heart Surgery clinic nurse will facilitate your day. You will also meet many members of the Heart Center team who will familiarize you with the preoperative routines and answer any questions. These team members include: the Social Worker, Child Life Specialist, Chaplain, and the Congenital Heart Surgery Anesthesiologist. At the end of the pre-operative work-up, you will either be admitted to the 15 Tower Cardiac Inpatient Unit or sent home to return the following early morning for surgery. Valet parking is available at the West Tower building. If you choose to valet park the day of your preoperative work-up, bring your parking ticket with you and the Congenital Heart Surgery clinic nurse will validate parking for the day of your preoperative work-up. It will be your responsibility to pay for parking throughout the remainder of your hospital stay.
What happens on the day of surgery?
For patients who are hospitalized the night before surgery, an intravenous (IV) catheter may be placed. This will allow intravenous fluids to be given once NPO (nothing by mouth) status begins.
All patients – whether they are admitted to the hospital or not - will be placed on “NPO” (nothing by mouth) status after midnight the night before surgery. Clear liquids may be allowed at the specific instructions of the anesthesiologist.
On the morning of surgery, your family will meet our staff on the 18th floor of the West Tower. You will be greeted by a receptionist and given a private waiting room. Approximately one hour prior to surgery, the patient will be taken to the holding area, dressed in hospital pajamas, and placed in a crib or bed. The anesthesiologist will order some medication to be given that reduces anxiety. This medication is given by mouth or IV, and will allow the patient to relax and become sleepy.
What type of anesthesia will be used?
Anesthesiologists who specialize in pediatric cardiovascular anesthesia will manage the anesthetic care of the patient throughout the surgery. They collaborate closely with the surgeon and the rest of the OR team to monitor and manage the patient’s care in the operating room. Based on their pre-operative assessment, they will individualize the anesthetic to meet each patient’s physiologic needs. In most cases, a general anesthetic approach is used which results in the patient being completely unconscious and pain-free during the entire surgery as well as shortly afterward. During the surgery, several specialized neurophysiologic monitors are used to ensure that the anesthesia is effectively maintaining the patient in a fully unconscious and pain-free condition.
What happens during surgery and how is it performed?
The type of surgery your child will undergo depends on your child’s heart defect. Prior to the surgery, the surgeon will have a detailed consultation with the family to explain the specific surgical procedure, discuss risks and benefits, and answer any questions the family may have. Throughout the actual operation, a surgical nurse clinician will update the family approximately every hour during your child’s surgery. These updates will be given in the private waiting room assigned by the receptionist.
The following steps are commonly followed in all types of congenital heart surgery:
Preparation: The anesthesiologist and the operating room nurses will escort the patient into the operating room. A heart monitor will be connected to the patient that will show the OR team a continuous read-out of the heart rate and rhythm throughout the surgery. The patient will be given a mask through which they will breathe a gas that causes them to fall deeply asleep.
Once the patient is asleep, the anesthesiologist will put a breathing tube (endo-tracheal tube or ET tube) into their windpipe. This tube is attached to a breathing machine (ventilator) that will do the breathing for the patient during their surgery. Once the ventilator is secured, the anesthesiologist will place several intravenous (IV) catheters in the patient’s veins. The sites typically used are the large vein in the neck or the groin. There may be one or two more IVs placed.
Once the IVs are secured, intravenous fluids and medication are given through them throughout the operation. Another special catheter (arterial line) is placed in an artery (the blood vessel which has a pulse). The arterial line is used to monitor blood pressure during and after surgery. This special catheter is also used to draw samples of blood to obtain various laboratory values. The sites usually used are in the wrist or the groin. A nasogastric (NG) tube is placed in the nose and gently guided down to the stomach. The stomach will continue to produce juices even though there is no food in it. This may cause the patient to become nauseated and vomit. The NG tube will empty the stomach and prevent vomiting. Another catheter (Foley catheter) is placed in the patient’s urinary opening and guided gently to the bladder. This catheter is attached to a device that drains and measures the urine produced during surgery. All of these procedures are performed after the patient is deeply asleep. This whole process may take from one to one and a half hours.
Once all the lines and tubes are in place, a transesophageal echocardiogram (TEE) is performed. A cardiologist will place a probe into the patient’s mouth and gently guide the probe down the esophagus. The TEE probe rests behind the heart and provides the surgeon with a continuous picture of the structures of the heart during the operation. When the TEE is completed, it is time for the surgeon to begin the operation.
Incision and operation:
A median sternotomy incision is used for “open-heart” surgery (surgery that occurs inside the heart). This incision usually begins at or below the top of the breastbone (sternal notch) and goes straight down the sternum (breastbone). The breastbone is then separated to expose the heart. The patient is then placed on the heart-lung bypass machine, a device that provides blood flow to the body and “bypasses” the patient’s heart and lungs. Diverting the heart’s blood flow to the bypass pump allows the surgeon to open the heart and operate on the structures inside the heart. The heart-lung bypass machine provides continuous oxygenated blood to the other organ systems during the open-heart surgery. Depending on the location of the defect, an incision will be made in either the right atrium, the pulmonary artery, or the outflow tract of the right ventricle (infundibulum). The right atrial approach in which the VSD is patched by working through the open valve (tricuspid valve) between the right atrium and the right ventricle is preferred. This approach prevents having to make an incision in the right ventricle, which can lead to future right ventricular failure. The patch for the VSD is created by the surgeon from either the patient’s own pericardial tissue or a synthetic material such as Dacron, then sutured into place to close the defect. Any obstructive tissue in the right ventricular outflow tract is cut away (resected). A second incision is made in the main pulmonary artery, and this approach is used to complete the VSD closure and any additional resection of obstructive tissue. Additional work may be needed to widen a narrow pulmonary artery or valve, such as a patch. In some cases of severe obstruction, or absence of the pulmonary artery, a conduit may be placed between the right ventricle and pulmonary arteries to provide an open communication for blood to flow to the lungs. After making these repairs, the atrial, pulmonary artery and/or infundibular incisions are then closed with sutures.
Once the surgical procedure is completed, the patient will be weaned gradually off of the heart-lung bypass machine until the newly repaired heart is managing all the blood flow again. Chest tubes will then be placed to drain the surgical area. These tubes are positioned at the base of the incision. There will be 1-3 chest tubes placed for most surgical procedures. Temporary pacing wires are also placed at this time. These are very small wires that are positioned on one or both sides of the incision. These pacing wires may be used temporarily to pace the heart rate and rhythm if needed in the post-operative period. Intracardiac monitoring lines may be placed depending on the type of surgical repair. These special catheters are placed in the chambers and vessels of the heart to provide the surgeon and the postoperative team with valuable information about the pressures within the heart and lungs. A postoperative TEE will be performed which provides the surgeon with valuable information after the surgical repair. Once the TEE is completed, the surgeon will close the sternum. The sternal bone is brought together, and stainless steel wire secures the sternum.
The type of skin closure the surgeon uses is dependent on age and weight:
- Clear, absorbable skin suture that runs the length of the incision on the inside of the chest. A clear knot is seen at the top and the bottom of the incision. To secure the outside of the incision, adhesive strips (steri-strips) are applied to the surface of the skin along the length of the incision.
- Surgical staples (used occasionally in larger patients)
Completion and transfer to recovery room:
After closure of the incision, a dressing is placed that remains in place for the first 24 hours after surgery. The anesthesiologist and the operating room nurses then secure all the patient’s tubes and lines, and prepare for transport from the OR. The patient is moved from the operating room table onto an intensive care bed and transported to the Cardiovascular Intensive Care Unit (CVICU).
What happens after the surgery?
The patient will be transferred to the Cardiovascular Intensive Care Unit (CVICU) by the cardiovascular anesthesiologist and the team of operating room nurses. The CVICU is situated directly adjacent to the cardiovascular operating rooms to maximize patient safety. This makes the transition from the operating room to the CVICU a smooth process. Once the patient arrives in the CVICU, a thorough report of the surgical procedure is given to the Cardiologist and the CVICU nursing team who will be managing care in the CVICU. The surgeon will update the family on the operation once the patient is settled into the CVICU. Family members may usually visit the patient within an hour after arrival to the CVICU.
While in the CVICU, the patient will continue to be monitored closely. In addition to monitoring heart rate and rhythm, and respiratory rate, the monitor will also display other pressures and waveforms, which assist the cardiologist in managing care. A chest x-ray (CXR) and lab work will be performed on arrival and periodically throughout the stay in the CVICU.
The CVICU is open to visitation 24 hours a day. No more than two visitors are permitted to visit in the CVICU at a time. Children under the age of fourteen years are not allowed on the 18th floor in order to protect the patients and the children from infection. A limited number of rooms are available for sleeping at night, and they are assigned on a first come, first served basis. The receptionist will provide you with the CVICU visiting policy and the process for the use of the sleeping rooms.
The CVICU team will continually assess the patient’s comfort level. Medication will be given to reduce any pain or anxiety they may experience after their surgery. These medications are initially given by IV and then gradually changed to medications that can be taken by mouth. Comfort measures provided by the family are encouraged. Talking quietly to the patient is important even if the ETT is still in place (the patient will not be able to speak when the ETT is in place). Hearing your voice usually will assure the patient that you are close by and may make them feel more secure. Other comfort measures such as listening to soft music or helping patients change their position in bed regularly may also decrease their anxiety or pain.
Once the patients are awake enough to breathe on their own, the breathing tube (ETT or endotracheal tube) is removed. Depending on the surgery performed, this may take anywhere from a few hours to a few days following surgery. Once the surgical dressing is removed, the incision will remain open to air. The nurses will cleanse the incision with a Betadine solution twice a day. A small gauze dressing will be placed over the insertion sites of the chest tubes, intracardiac lines, and pacing wires. Gradually the tubes, wires, and intravenous lines will be removed as the patient’s condition improves.
When the patient has a stable blood pressure, a stable heart rate and rhythm, and can breath well on their own without the ventilator, they will be transferred to the cardiac inpatient floor, 15 Tower. As the patient improves, their activity level will gradually increase until they are doing well enough to be discharged from the hospital. Before leaving, the family will be instructed in how to care for the patient at home, including information on medications, incisional care, and activity limitations.
How long will we be in the hospital?
The length of time in the hospital will depend on a variety of factors:
- The type of congenital heart defect, surgical repair and post-operative course
- The patient’s ability to maintain/gain weight and activity level
- The family’s understanding and ability to provide for the patient’s post-operative needs
In general, patients can expect to stay anywhere from 3-10 days, depending on the above factors. Patients who live greater than an hour’s drive from Houston may need to make arrangements to stay in the Houston area until after their 1st post-operative cardiology clinic visit (1 week after discharge).
What are the risks associated with congenital heart surgery?
Risks associated with congenital heart surgery vary widely according to the specific procedure and the patient’s condition at the time of surgery. They can include:
- Bleeding
- Infection
- Need for re-operation
- Damage to nerves in the chest area
- Brain damage
- Death
Your surgeon will discuss the specific risks associated with your child’s congenital heart surgery at the time of your consult. In our program, the risk of serious complications occurring, such as brain damage or death, is very low. Our surgeons have a very large experience and can provide specific data to you defining the surgical risk for your particular procedure. We believe this important information must be shared with parents to make the process less stressful.
What should we watch out for after surgery?
Before the patient is discharged from the hospital, your family will be given detailed instructions that are individualized for the specific procedure performed. However, in general, patients should contact their doctor for any of the following after congenital heart surgery:
- redness, swelling, or oozing/bleeding from incision
- fever
- altered mental status, excessive fatigue
- feeding/eating problems
- prolonged or worsening pain
Patients who have had a sternotomy should avoid any activity that causes strain on the chest for at least 6-8 weeks, so that the breastbone can heal. For infants, avoid picking them up by arms (“scoop” them up instead); for older children and adults, avoid activities that involve pulling or pushing with arms as well as contact games/sports.
Monday, December 12, 2011
If I could give you my heart, I would...
Drove to the Medical Center today with Gigi (Daddy had to work late) and saw a Neonatal Cardiologist who did an echo on your little heart. We were told that it would take about 45 minutes to an hour for them to finish with the entire ultrasound.
About an hour and a half into the ultrasound (yep, it was taking that long), the main doctor suddenly shows up. I was thinking that it probably wasn't good news if the main doctor showed up before they were even done.
I finally asked the question that would tell me if something was wrong, something was really wrong or everything was okay. Mommy has been to enough of these ultrasounds to know the protocall.
"So, how is everything looking?"
You see, I have deciphered the ultrasound tech code.
IF they say, "Everything is fine." That means that everything is fine.
IF they say, "I am still doing measurements." That means something is bad.
IF they say, "I really can't say anything" or "The doctor will go over the results with you in a moment." That means things are really bad.
The doctor told me, "I will go over the results with you in the conference room after this is over." Which, in my convaluted code meant that things were really, really way worse than I had anticipated.
We were ushered into a conference room and we sat down. The doctor started to explain how the heart works normally. Then she went on to explain how a heart looks with a VSD (ventrical septal defect) which is what we THOUGHT you had. Oh, how I wish that was what it was now. Then she got another diagram out and started to explain what you actually have. It's called Tetralogy of Fallot and it will require open heart surgery either immediately after you are born or when you are a few months old.
Mommy won't be able to deliver at the same hospital that she had your big brother at. We will have to deliver downtown where the cardiologist will be able to examine you directly after you are born. I'm not even sure if they are going to let me hold you right after you're born. It kills me to think of you in the world for even a second and not being able to be in my arms (or Daddy's.)
Daddy called on the way home from the exam and asked how you were. I sort of didn't tell him because he was still at work. Instead, I just said that the hole was still there and I would have to call him back because traffic was bad and it was making me nervous. I just didn't want to upset your Daddy while he was out and was going to have to drive. He has been so strong for us. He puts so much on his shoulders and carries it around with him all the time and he never complains. He just keeps holding everything together. I know that he has his moments. I know when he is alone that he cries and he lets it out. I know because he tells me. But never in front of me. He never burdens me with his own emotions. He has just really been so strong for me. So I tried to be strong for him.
It wasn't until he got home that I sat him down and told him. I cried my eyes out. It was the first time I cried about this since finding out. I don't know if he cried or not. It was very hard to see through all my own tears.
After we talked, we went to pick Matthew up from his Boy Scout Christmas party and then your Daddy went and hung up signs for Avy. Oh yeah, our Bullmastiff, Avy, was stolen from our yard last night as we slept.
Today has been a fairly rotten day. My dog gets stolen and then worse, I find out my precious baby has to have open heart surgery. *sigh*
Gracie, I would do anything to guarantee you an easy, happy life filled with joy and love. Apparently though, all I can do is try to love you enough that your hardships will not seem so difficult. And I do love you, my precious daughter. It takes my breath away how very much I love you already. I wish I could do more than just love you, my sweet little girl.
About an hour and a half into the ultrasound (yep, it was taking that long), the main doctor suddenly shows up. I was thinking that it probably wasn't good news if the main doctor showed up before they were even done.
I finally asked the question that would tell me if something was wrong, something was really wrong or everything was okay. Mommy has been to enough of these ultrasounds to know the protocall.
"So, how is everything looking?"
You see, I have deciphered the ultrasound tech code.
IF they say, "Everything is fine." That means that everything is fine.
IF they say, "I am still doing measurements." That means something is bad.
IF they say, "I really can't say anything" or "The doctor will go over the results with you in a moment." That means things are really bad.
The doctor told me, "I will go over the results with you in the conference room after this is over." Which, in my convaluted code meant that things were really, really way worse than I had anticipated.
We were ushered into a conference room and we sat down. The doctor started to explain how the heart works normally. Then she went on to explain how a heart looks with a VSD (ventrical septal defect) which is what we THOUGHT you had. Oh, how I wish that was what it was now. Then she got another diagram out and started to explain what you actually have. It's called Tetralogy of Fallot and it will require open heart surgery either immediately after you are born or when you are a few months old.
Mommy won't be able to deliver at the same hospital that she had your big brother at. We will have to deliver downtown where the cardiologist will be able to examine you directly after you are born. I'm not even sure if they are going to let me hold you right after you're born. It kills me to think of you in the world for even a second and not being able to be in my arms (or Daddy's.)
Daddy called on the way home from the exam and asked how you were. I sort of didn't tell him because he was still at work. Instead, I just said that the hole was still there and I would have to call him back because traffic was bad and it was making me nervous. I just didn't want to upset your Daddy while he was out and was going to have to drive. He has been so strong for us. He puts so much on his shoulders and carries it around with him all the time and he never complains. He just keeps holding everything together. I know that he has his moments. I know when he is alone that he cries and he lets it out. I know because he tells me. But never in front of me. He never burdens me with his own emotions. He has just really been so strong for me. So I tried to be strong for him.
It wasn't until he got home that I sat him down and told him. I cried my eyes out. It was the first time I cried about this since finding out. I don't know if he cried or not. It was very hard to see through all my own tears.
After we talked, we went to pick Matthew up from his Boy Scout Christmas party and then your Daddy went and hung up signs for Avy. Oh yeah, our Bullmastiff, Avy, was stolen from our yard last night as we slept.
Today has been a fairly rotten day. My dog gets stolen and then worse, I find out my precious baby has to have open heart surgery. *sigh*
Gracie, I would do anything to guarantee you an easy, happy life filled with joy and love. Apparently though, all I can do is try to love you enough that your hardships will not seem so difficult. And I do love you, my precious daughter. It takes my breath away how very much I love you already. I wish I could do more than just love you, my sweet little girl.
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