Monday, March 31, 2008
Ryan continues to desat some & is still on his oxygen. Reese is also about the same. She is also still on her oxygen. She is getting 2 bottles a day. Sometimes she takes most of it & sometimes she doesn't.
Saturday, March 29, 2008
Friday, March 28, 2008
The babies continue to improve.
The boys have been moved to open cribs. The boys passed their hearing test. Feedings have been increased, and now the boys are getting every other feeding as a bottle feeding. The boys had their first eye exam. Rylie had a normal exam. Ryan had grade one Retinopathy of Prematurity (ROP). They will get a repeat eye exam in 2-3 weeks.
Reese had her hearing test today, but we do not know the results of that test. Reese had her eye exam today, and it was okay. Reese had her breathing support reduced to 1 liter/minute, and continues to have an FiO2 of 21% (the same as room air).
We plan to return on Friday, April 4th. At that time, the RSV season will be over and Racheal will be able to see the babies.
Thursday, March 27, 2008
Wednesday, March 26, 2008
This first picture is from this morning. You can see the surgical area with Steri-strips on it.
This next picture is Randall holding Reese.
This picture is from this evening. It was taken just before Shelley gave her a bottle. We had to shield her eyes from the bright light in order to get her to open her eyes.
This is Shelley giving Reese a bottle. This is the second bottle that Reese has ever gotten.
Shelley got to breast feed Ryan and Rylie today. Ryan did not do very well. Rylie had good effort for about 10 minutes. Both Ryan and Rylie continue to gain weight.
Randall got to hold Ryan during one of his tube feedings. Ryan has been having problems with his blood oxygen saturation dropping while he is getting feedings, and it does not seem to matter whether he is getting a bottle feeding or a tube feeding. Today, Randall was massaging his foot; as long as his foot was being massaged, he kept his blood oxygenation from 98%-100%. Anytime that Randall stopped massaging his foot, his blood oxygenation would drop down to 90%-94%. It would appear that Ryan just needs a good foot massage when he eats.
We got so caught up in taking care of the babies today that we forgot to take pictures of Ryan and Rylie.
Tuesday, March 25, 2008
Ryan and Rylie continue to tolerate there feedings and gain weight. Ryan now weighs more than 4 pounds, but he continues to have drops in his blood oxygenation when he is fed.
We are thankful that Shelley's father, Franklin Abbey, and our pastor, Dale Meinecke, came to give us support during Reese's surgery.
Monday, March 24, 2008
This is Rylie. He slept most of the day.
This is Randall after he got through feeding Rylie.
The whole time that Randall was feeding Rylie, he kept trying to open his eyes, but the lights were too bright. Once we shaded his eyes from the light, he decided to have a look around.
This is Ryan, he was awake and wide eyed quite a bit today. The black thing in the picture is not a defect in the picture; it is a piece of plastic on Ryan
This is Reese. This is early this morning before the surgery.
She kept trying to open her eyes, but the light was just too bright.
Once we shielded her eyes from the light, we got to see those pretty blue eyes.
This is Reese after Surgery.
We have some great news today.
Reese did exceptionally well with her surgery today. The team from Cook Children's was delayed in coming to get her this morning; and there was an additional delay before the surgery was actually started. She was scheduled to go from Harris to Cook Children's at 7:30 and have surgery that was scheduled at 8:00. However, she was not taken over to Cook Children's until nearly 9:00; and the surgery was not started until nearly 11:45. She was in surgery for just over an hour. The surgeon told us that she did well in surgery. He said that Reese did have a very large PDA, and that it did need to be closed surgically. Then they brought Reese out of the surgery suite and headed to the recovery room; the team stopped and let Shelley touch her; when Shelley spoke to her, she opened her eyes and looked at Shelley. She spent almost an hour in the recovery room, before she was brought back over to the Harris NICU.
Remember, from yesterday, when I told you that the best chance for a good outcome depended upon having a well experienced surgical team? Today we found out just how good of a team we had. We did not just have a good team, we had an excellent team. Her surgery went so well, she did not have any air, fluid, or blood leaking from her left lung, so she did not need a chest tube. While she was in the recovery room, she did so well, that she was able to be taken off of the ventilator and had her breathing tube removed. When she came back to Harris Methodist NICU, she was breathing unassisted, and only needed supplemental oxygen.The anesthesiologist did a caudal spinal block in order to help her with the pain. This allows good pain control without the need for a large amount of narcotics. Fewer narcotics means less depression of her respiratory drive, so she should breath better.
This morning, before surgery, Reese's blood pressure was 60/27, with a Mean Arterial Pressure (MAP) of 36 (Mean Arterial Pressure is an indicator of the average pressure and correlates well with the amount of blood that reaches peripheral tissues). Yesterday I told you about how Reese's blood pressure was low because it was being shunted to the low pressure system of the Pulmonary Artery; this is evident by the low bottom number, the low MAP, and the wide pulse pressure (pulse pressure is the difference between the top number and the bottom number; a wide pulse pressure always indicates some type of problem). With that blood pressure, she had a respiratory rate between 80-100 breaths per minute, and a heart rate of 190-200 beats per minute.
After the surgery, her blood pressure was 81/51, with a MAP of 60; that is almost exactly what is normal for a newborn infant. After surgery, her heart rate was 150-160 beats per minute, and she was breathing at a rate of 60-70 breaths a minute. Her blood oxygen saturation was 95% or better.
Before surgery, her blood gas analysis showed a partial pressure of oxygen of 33.9 mm of Hg, and an oxygen saturation of 92%. After surgery, her blood gas analysis showed a partial pressure of oxygen of 41.2 mm of Hg, and an oxygen saturation of 96% (higher numbers are better).
The staff has been very accommodating of me being a doctor. They have let me look through the chart, showed me X-rays, let me see lab reports, as well as several other things. Today they let me look over the paperwork that was kept during the surgery. One of the items that is kept during surgery is a log of heart rate and blood pressure; and, it is recorded in such a fashion that it is almost like reading a chart; this allows trends to be seen and recognized easily. It might, for example, be easy to overlook the fact that several blood pressure readings were a little lower than usual, but when you can see the graphical trend, it helps you to be able to provide better care (again, this was just and example; there was no evidence that Reese had a pattern of falling blood pressure during the surgery). A quick look at this data revealed the exact time that the PDA was closed, because the blood pressure jumped up to normal levels, and the heart rate began to decline to more normal levels.
She started to have a few problems later in the afternoon. Apparently, she got a little bit too much narcotics for pain; narcotics depress the area of the brain that regulates breathing, and she was not breathing well; she was breathing shallowly and slowly. She was given a dose of Narcan to help reduce the effects of the narcotics, and her breathing improved immediately.
Randall got to give Rylie a bottle today. He took about 2/3 of the bottle. He continues to do well, and he is gaining weight.
Shelley got to hold Ryan today, and attempted to breast feed him again, but he did not respond very well to that. He continues to have problems with his blood oxygen saturation dropping whenever he gets a feeding. He continues to gain weight.
Shelley went back and checked on Reese again, after the nurses changed shifts, and her breathing was back to normal and her oxygen saturation was okay.
Sunday, March 23, 2008
Rylie continues to do well. He is eating well, and gaining weight.
Ryan is doing well. He is eating and gaining weight. He got put back on oxygen because he had several episode where his blood oxygenation dropped down below 60%. He had his eyes open this evening and he was looking around at everything.
Reese is stable. Her blood oxygen saturation runs between 83% and 97%. Randall got to hold Reese today. It would appear that she likes to get her feet rubbed; while Randall was holding her, he was rubbing her feet, and her oxygen saturation was between 95% and 98%.
Okay, there seems to be some confusion about Reese's condition, as well as her pending surgery. Let me see if I can clear things up. Reese does not need surgery to close a hole in her heart. Reese does need surgery to close a Patent Ductus Arteriosis. Below, there is a link to a website that helps to explain what a PDA is and why surgery may be needed:
The ductus arteriosis is a normal stucture that is needed in fetal development. Oxygenated blood from the placenta comes into the right side of the heart. The right side of the heart pumps the blood out to the Pulmonary artery which feeds the blood to the lung. Unborn children have not yet taken a breath, so the lungs have not yet expanded, and there is a high resistance to blood flow. The ductus arteriosis allows the oxygenated blood to be shunted away from the lungs and into the aorta, so that it can be circulated to the rest of the body.
Once a baby is born, the child takes a breath, the lungs expand, and the resistance to blood flow through the lungs drops dramatically. This normally starts a series of physiological processes that cause the ductus arteriosis to close. If it does not close, it is still patent, and so it is called a Patent Ductis Arteriosis. Premature infants are at an increased risk for PDA.
Once the lungs are expanded, the pulmonary artery and veins have a low resistance to blood flow; this makes the pulmonary vasculature a low pressure system. The aorta, however, is a high pressure system. In a child with a PDA, blood flows from the high pressure of the aorta to the lower pressure of the pulmonary artery. This causes back pressure on the right side of the heart, such that the right side of the heart has to work harder to pump the blood out; this causes the right side of the heart to enlarge. The extra blood that goes into the pulmonary artery, circulates through the lungs, and then back to the left side of the heart; this extra blood makes the left side of the heart enlarge, and become a less efficient pump. The result of the enlargement of the heart is easily seen with a regular x-ray; the heart has an enlarged, globular appearance. Reese's x-rays have shown this change since shortly after she was born, but recent x-rays reveal that it is getting worse.
All of the extra blood being forced through the lungs causes fluid to leak out of the blood vessles, and can cause increased fluid in the lungs and around the lungs. This can also be seen on a regular chest x-ray, and Reese's chest x-ray, do show those changes.
Because the high pressure side of the system is losing blood to the low pressure side of the system, there is not adequate blood pressure to supply blood to all of the areas of the body that need it. This is especially true when the body needs to digest food. The body needs to shunt blood to the bowel in order to be able to digest the food; that means that there is less blood to go to other areas of the body. Combine that with a low blood pressure, and you get a problem. That is why Reese has only been getting minimal amounts of milk at each feeding. She gets the majority of her nutrition from her IV.
All of these problems combine to cause heart failure. Reese's x-rays and echocardiograms show a steady progression of heart failure. Therefore, she needs surgery to correct the PDA. Once the PDA has been closed, the high pressure of the aorta will no longer be shunting blood into the low pressure system of the pulmonary ateries; this should allow the heart to function more normally, and return to a more normal shape, and Reese should start to improve (we hope). But, we may have waited too long; after the surgery, she may need some type of medication to help her heart pump better. Dr. Riley said that it is impossible to predict which child will need this kind of therapy.
So, this is not heart surgery; the heart will not be cut open. However, there are still a large number of risks associated with the surgery. The surgical team does these procedures regularly, so they are well skilled in doing this surgery. Any doctor will tell you that in order to get the best results out of any surgery, you want to have a surgeon that has performed a large number of the procedures. This team has done this procedure many, many times, and so we have the best doctors and nurses available for this procedure. But, as a doctor, I still worry about the risks involved.
First, the skin has to be cut. The skin is the body's best defense against infection. Anytime you cut the skin or put a needle through the skin, you increase the risk for bleeding and infection.
After the skin is opened, the incision is carried down to the area of the ribs. An incision is made in the tissue between the 5th and 6th ribs on the left side. The ribs are spread apart, and the left lung is deflated. This carries a significant risk because then only the right lung will be capable of oxygenating blood; with her decreased heart function, she may not be able to oxygenate her blood adequately. If this happens, she will need to be placed on a heart-lung machine for the rest of the surgery.
There are a large number of very important structures that run through the area of the surgery. The surgeon has to be very careful to identify these structures and to make sure that these structures do not get injured.
The surgeon needs to identify the Azygos Vien. This vien is fairly large in newborns, and any injury to it could cause a risk of heavy bleeding.
The surgeon has to identify the Thoracic Duct. When the blood goes from an artery, through a capillary, and into a vein, fluid leaks out of the blood vessles, and into the surrounding tissue. The body has a sytem of lymphatics that collects this fluid and carries it back to the subclavian vein, in order to be re-introduced into the blood supply. The thoracic duct is an important part of the lymphatic system; it carries all of the lymphatic fluid from below the heart and lungs as it travels through the thoracic cavity. If the surgeon were to injure this stucture, it would cause leaking of fluid into the area around the left lung (this is called the pleural space). This could lead to increase length of time to heal, and might even cause the need for additional surgery.
The surgeon has to identify the superior vena cava, the aorta, and the pulmonary artery. The ductus arteriosis is between the aorta and the pulmonary artery. Now the surgeon has to identify the recurrent branch of the laryngeal nerve. This is a branch that comes off of the Vagus nerve, and wraps around the ductus ateriosis, and back up to the larynx (the voice box). Any damage to this nerve could cause partial paralysis of the vocal cords, which would permanently effect her speech.
After the surgeon has identified all of these structures, he must begin the process of closing the PDA without causing any damage to these structures. Once the PDA is closed, the layers of tissue that have been cut during the surgery have to be repaired. During this repair, the same stuctures are at an increased risk for damage, so great care has to be taken.
During the surgery, the left lung will be deflated. This serves two purposes: it allows the surgeon a better field of view during the surgery; and, it helps to prevent damage to the lung tissue itself. However, there will always be some damage to the lung tissue. This damage causes the lung to leak air, fluid, and blood. Therefore, after the surgery, a tube is placed inside the pleural space, routed out through the skin, and attached to a vaccuum device; this allows all of the leaking air, fluid, and blood to be pulled out of the pleural space, and allows the left lung to expand to its original size. The chest tube will stay in for several days until all of the leaks have stopped.
Anybody who has ever had surgery will tell you that there is significant pain after the surgery. Reese will have pain; but, as an infant, she will not be able to tell anybody that she hurts. The nurse has assured us that adequate pain medication is given to Reese after surgery, such that we need not worry that she will be hurting unnecessarily.
I hope this has helped to clear-up any misunderstandings about Reese's need for surgery.
Saturday, March 22, 2008
After Rylie had eaten, he was quite exhausted.
Randall got a chance to hold Rylie, too.
Ryan continues to do well. This morning he took about 2/3 of his bottle feeding. He continues to gain weight. He still has some blood oxygen saturation problems while he is being fed, but this seems to be improving slowly.
Shelley also got the opportunity to breast feed Ryan. He did about the same as Rylie. Shelley got the opportunity to have "skin-to-skin" contact with Ryan, and the whole time he maintained a blood oxygen saturation above 98% (which was the best he had done all day). When Shelley needed to put him back into the warmer, he cried.
Randall actually got the opportunity to hold both Rylie and Ryan, at the same time.
Randall got to hold both babies for about 15 minutes.
Reese was changed from CPAP to oxygen via a nasal cannula. She appears to be doing well with that change. Her color looked better today. She is still working to breathe; she is breathing 80-90 times a minute (compared to Rylie and Ryan breathing 50-60 times a minute). She is scheduled to have her surgery Monday morning at 8:00 AM (Monday March 24). Please keep her in your prayers. Please ask God to give the doctors and nurses the skill and care that they need to keep her safe and bring her through the surgery safely. We know that this surgery is what is best for her, but it is very hard to let someone else start cutting our baby.
We will be going back to the Ronald McDonald House tomorrow, so that we can be there Monday morning for the surgery. Big thanks to Mee-Maw, who has volunteered to take care of Racheal for us during that time.
Friday, March 21, 2008
Ryan gained 1 oz. Rylie stayed the same. Reese has finished getting blood. The nurse said her color was better, her oxygen saturation was not dropping, and she was more active. She gained 2 oz. The received the preliminary results from the culture that was done and it showed a localized infection. Reese was also taken off of c-pap today & put on a nasal cannula.
Thursday, March 20, 2008
Randall has gone back to work & we will be going back to see them on Saturday.
Wednesday, March 19, 2008
The following pictures are of Ryan for the two previous days. He continues to do well. He still has episodes of oxygen desaturation when he feeds, but is otherwise doing well.
The following pictures are of Reese for the previous two days.
We spoke with a Pediatric Cardiologist today. He looked at Reese's echocardiagram. He is of the opinion that her PDA is starting to cause significant changes to her heart and lungs; he feels that it would be best for Reese to have the surgery to close her PDA. He said that he would give all this information to the Neonatologist, and let the Neonatologist discuss this with us further.
Tuesday, March 18, 2008
Rylie continues to do well. Yesterday morning and this morning he took a bottle feeding and took the entire amount (30 ml which is approximately one fluid ounce). He is gaining weight, and is now weighing more than he did at birth. He continues to do well breathing room air.
Ryan is doing well breathing room air, but continues to have drops in his oxygen saturation when he is being fed. He is getting 33 ml per feeding, and this morning, he took 20 ml of it from a bottle feeding. He has surpassed his birth weight.
Reese continues to have a PDA. Although it is smaller, it is still fairly large. The doctor says that a PDA that measures 2.o mm is considered to be large, but Reese's measures 2.5 mm (for comparison, 5 mm is about the size of a pencil eraser). The doctor wants to talk to the Cardiologist that read the echocardiogram, in order to get more information. The current plan is to wait and see if it will close on its own. However, if the Cardiologist indicates that the PDA is starting to cause heart problems (especially if it is starting to cause heart failure), then it may be necessary for Reese to have surgery in order to close the PDA. She continues to do well with her CPAP, and maintains oxygen saturation of greater than 95% all the time. Her chest x-ray, done today, indicated that her PICC line may have not been in exactly the right place; it appeared to have been in the Azygous Vein. The doctor withdrew the catheter one cm, and a repeat chest x-ray showed the catheter tip to be in good position. She is getting feedings again; that, along with the IV nutrition has allowed her to gain some weight; she now weighs more than she did at birth.
We got home a little later than we had hoped, and we felt that we needed to rest first; so, we did not work on getting pictures uploaded tonight. We hope to find time to do that tomorrow.
Monday, March 17, 2008
Rylie continues to do well. With his bottle feeding this morning, he took the whole bottle. He has gained weight. His weight tonight was 1500 grams, which is 3 pounds 5 ounces. Both Shelley and Randall got to hold Rylie today. He continues to do well breathing room air.
Ryan is doing well most of the time. He still starts dropping his oxygen saturation while he is getting feedings. He does okay the rest of the time. Randall got to hold Ryan today, for a little while, while he was getting a feeding; but he started having a reduced oxygen saturation, and we had to put him back into his warmer.
Reese had a rough day today. She continues to need an IV, but the nurses and doctors were unable to get a regular IV started. They got consent from Shelley for a PICC line; but they had problems getting the PICC line started. They ended up doing a cut-down in order to get an IV started. She was sedated for the whole thing, and still is quite sedated this evening. Her echocardiogram still shows a PDA, but, after the Indocin, it appears to be smaller.
A cut-down IV is a simple procedure. Instead of trying to insert the needle and catheter through the skin, the skin is cut open in order to expose the underlying tissue. An appropriate vein is found, and cut; the catheter is then threaded through the opening. Until ultrasound, cut-down procedures were done more often. With ultrasound, it is often possible to see the veins clearly, and it allows a person to guide a needle and catheter into a vein more easily; since ultrasound guided IV cannulation has become available, the need for cut-down procedures have decrease, and so fewer cut-down procedures are done these days. However, it is still a vital means of getting an IV started, when other options fail.
We will be going back to Comanche tomorrow. We will visit the babies one last time before we leave.
Sunday, March 16, 2008
First, Randall got to hold Rylie.
After a little while, he became accustomed to the brightness of the light, and we did not need to shade his eyes any longer.
Then, Shelley got to hold Rylie.
After we held Rylie for a while, Shelley put him back in his warmer, and changed his diaper.
Ryan is doing well. He is still having episode where he quits breathing, and has his blood oxygenation level fall. This often corresponds to a reduced heart rate.
Randall got to hold him for a short time today.
But he kept having apneic episodes with oxygen desaturation, so we put him back in the warmer. As soon as he would get laid on his stomach, he would start breathing again, and his blood oxygenation would come back up.
Shelley finally got to hold Reese today. Reese is still on CPAP. She is scheduled for a repeat echocardiagram tomorrow to see if her PDA has resolved. If the Indocin was not successful in closure of the PDA, she may need surgery to correct it.
Reese had her feedings restarted today, but at a reduced rate. She is still getting IV fluids and IV nutrition. Once she is able to get back to full feeds, she should be able to get her IV discontinued.
This last picture does not show it very well, but when Shelley had to give her up to be put back into the warmer, she through quite a fit.
Special thanks to Karen & Steve for taken Racheal home with them this weekend so we could spend extra time with the babies.