Joseph's Story (July - August 2005)

Joseph's Story
As written by me in July & August of 2005

This page is dedicated to my son, Joseph Edward Lowry III. It was always my intention to make a page where I could keep track of his growth. I never anticipated that he would have such an exciting beginning. Some people might look at what I've written and wonder how I could have written so much. To be honest, I didn't do it for you. I wanted to have a record of everything that had happened to Joseph, for his benefit and mine. I do hope that it is of interest and provides perspective on what has been a very tumultuous little life.
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Joseph was born on July 27, 2005 at North Florida Regional Medical Center. He weighed 9 lbs and was 22 inches long. Lacy was incredible during the labor and delivery, and we were overcome when our son finally arrived. The photo above was taken by my mom just seconds after Little Joey was born.
Unfortunately, it became apparent that his color was not right. Most babies have a bluish appearance when they are born. This rapidly changes when the lungs inflate and oxygen-rich blood goes through the body giving it a nice pink color. J-III did not turn that pink color so they took him to test his lungs. After a moment of examination at Lacy's bedside they decided to take him to the nursery to examine him more closely. I followed him there as they looked him over. After a moment they asked me to leave so that they could intubate him, or put a tube down his throat to help him get more oxygen. I left the room as they started not really knowing what it all meant.
We waited for a few minutes, expecting that all would surely be well and they would bring him back to our room. After a time our nurse midwife Ann Marie Fenn, OB-GYN Anthony Agrios, and pediatrician Marci Slayton walked in to discuss what was going on with Joey. At that point we were told that the level of oxygen that he was receiving was not sufficient and that our sick little boy would need to be transported to Shands Hospital at the University of Florida very soon. Needless to say, we were both shocked. Thus continued a very long day.
We were told that there were at least two possible causes for his condition- a diaphragmatic hernia or a heart defect. I think we were both still in shock, and it took some time for me to understand what all of that meant. I should take the time to point out that everything in this pregnancy had been wonderful, from Lacy's health to the entire labor and delivery up to that point. The occurrence of his condition only further highlighted some of the other things that went right.
That day a neonatologist from Shands was on his normal visit to North Florida and he was able to see Joseph right away. He prescribed a drug that improved Joey's oxygen levels, so that he was a pale white color, rather than the unusual blue. Dr. Morse (the neonatologist) referred him to Shands very soon, and the helicopter was able to take him there within 1 1/2 hours after birth. All of these things were a blessing for us, in the midst of a very scary time. All of the staff at North Florida were fantastic, and attended to Lacy and me with so much compassion and concern. Additionally, two of Lacy's friends from her time working as a diabetes research assistant, Jen and Liz, were there to care for her when I went to Shands to see to Joseph. There were so many people there who had a part in her recovery. Our hearts are full of gratitude for them.
As much as any of these occurrences, faith played a major role in our ability to cope with what was going on. Before he was taken to Shands from North Florida, my father and I had time to give him a priesthood blessing. It was difficult for me to put my hands on his little head and then focus on what Heavenly Father had in mind for this little guy. I felt very peaceful and knew that Heavenly Father would watch over him and those taking care of him. That peaceful feeling has been with me since that time, and I know that he is being watched over by Heavenly Father.
Joseph arrived at Shands that morning and was immediately subjected to a whole series of tests. They diagnosed him with a defect called Transposition of the Great Arteries. This page from the Cincinnati Children's Hospital explains the nature of this defect. If left uncorrected, it is usually a fatal defect. Fortunately, the doctors at Shands Hospital, specifically Dr. Paolillo with the help of others, performed a heart catheterization procedure called a septostomy. This procedure widens an existing space between the left and right ventricles of the heart to allow mixing of oxygen-rich and oxygen-poor blood. This allowed his oxygen saturation levels to improve so that the major surgery is no longer considered an emergency. Now it was time to determine where it should be performed.
Surgery on congenital heart defects is a highly specialized field. After consulting with one of the cardiologists at Shands we agreed that Miami Children's Hospital provided the best mix of expert surgeons and convenience for us, owing to my family presence there. After they contacted the hospital in Miami, they were told that they would come pick him up by jet that day (Thursday, July 28th). We waited at Shands until they took him, planning to follow him the next day. We arrived in Miami in time to visit Joey before going to my Uncle & Aunt's house, Ari & Kelly Sastre for some much needed rest after a long day. Joseph was stable, and we felt good about the people caring for him.
Today is Sunday, July 31st. Joseph continues to be stable, and we await his surgery, scheduled for Tuesday, August 2nd. The surgery is called an arterial switch. The surgeon will take the aorta and the pulmonary artery and switch them. This is the easy part of the procedure. The more delicate part of the surgery is moving the coronary arteries to the right place. All of Joseph's blood vessels are small, but the coronary arteries are very small. We feel very fortunate that our surgeon is highly skilled and very experienced. Additionally, Transposition is a common defect, and he has a lot of experience repairing this kind of condition. I will update this page with news on his condition as I can.
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Monday passed without incident. Sunday night was especially nice, because the nurse asked us if we wanted to give Joseph a bath. I changed his diaper for the first time. We went home tired, happy to have been able to participate in his care in a more meaningful way. Monday we met with Cristi, a nurse practitioner in the practice of Dr. Redmond Burke, the surgeon who would be performing the procedure. She explained what we should expect to occur. I'll provide a run-down of the procedure as I understand it:
Joseph is taken from the ICU by several nurses and the anesthesiologist to the operating room, where he will be connected to all the necessary machines. He is sedated and prepared for the surgery to begin.
A person known as the profusionist prepares the heart-lung bypass machine. In order for this to work properly, they have to reroute the blood away from the heart and lungs. Because blood wants to clot when it leaves the body, they must use blood thinners to keep it flowing. This allows the doctor to stop the heart so that the procedure can be performed.
The doctor can now begin the surgery, severing the aorta and pulmonary artery above the heart valves. The arteries are then switched, reattached with hundreds of tiny stitches.
Perhaps the most difficult part of the surgery comes next, where the coronary arteries are moved. The coronary arteries supply blood and oxygen to the heart muscle. These too must be reattached to insure that the heart gets nourishment. These are very small in an adult, and tiny in a child. Once again, much precision and many, many stitches are required.
Some time after the above procedure, he is removed from the bypass machine (hopefully) so that normal blood flow can be restored to the heart. This will allow the doctor to see that the heart is pumping normally and that there are no leaks in any of the valves.
At this point, his chest may or may not be closed, and the amount of time on the ventilator will vary. We are hopeful that he will be able to go home in about 2 weeks. During that 2 weeks many things will occur, and I will keep a record of that here.
The highlight of Monday occurred about 6:30pm. Our nurse at the time, Luisa, told Lacy that she should go to the bathroom because if she was going to hold the baby, she wouldn't be able to get up. Needless to say, this overjoyed her as she has been unable to hold him since the birth. When he was placed on her after being born, there was so much commotion that this constituted the first real time she has had to hold him in her arms. It was very emotional for both of us (I was fairly jealous) and he was calm and seemed so happy to be in his mom's arms. I gave him a father's blessing while he was there. She held him for almost an hour before it was time for us to go back to Ari & Kelly's house for dinner and sleep. Tuesday would be a long day.
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We got to the hospital this morning (Tuesday, August 2nd) at about 6:45am. Joseph looked very peaceful, and had a good night's rest according to Susie, his nurse. We had a few moments with him, snapped a few photos, and waited for Dr. Burke. He arrived and had a very reassuring manner. He explained a few things, and assured us that he would be gentle and do his best for Joey. We asked him if we could have a prayer with him, and he agreed. We accompanied Joseph to the opening of the operating room and returned to wait. At 9:30 we got an update that he was on the bypass machine and that we would hear from them again at 11am. We are calmer than expected, and have faith that Heavenly Father will hear our prayers and watch over our son.
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As we sat talking at about 12:30, Linda (another Nurse Practitioner from Dr. Burke's practice) came in to tell us that the surgery was completed and that they were able to seal his chest. This was great news, and seemed earlier than expected. Shortly thereafter, Dr. Burke came in to discuss the surgery, showed us some pictures of his tiny heart, and told us that Joseph would be out shortly. He came out and the change in his color was astounding. He almost looked like a different baby. We are so grateful, and know that the fasting and many prayers on his behalf were instrumental during this time.
We just went in to see him (2pm). The past six days made us accustomed to the sight of his little body and all the different tubes that helped him gain strength. As you can imagine, the number of tubes in his body post-operation seem to have multiplied. It still fills us with some apprehension to see him like that, but the peace that I've felt since shortly after we learned of his condition continues. We sat in his room for a while and watch him enjoy heavily sedated slumber. Very tired, we returned to the house to get some rest.
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We went to the hospital today and were excited to hear that they were going to extubate him. We did not expect this for at least another day, so it was a real relief to be able to look at his face. His swelling improved as well. The most difficult part of the post-surgery period is the waiting. It may yet be several weeks before we can take him home, so in the mean time we wait as various tubes are removed day by day. We see more and more of his personality (he has blue eyes) and feel a little bit more like real parents. He is a beautiful little boy, and I feel so grateful for his good recovery. Even Dr. Burke, the surgeon, mentioned today that he is a strong baby and having a very fast recovery. I just need to be patient and trust that all will continue to go well. Once again, Lacy and I discuss how blessed we are.
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Two days have passed since the surgery and Joseph's progress is exceptional. I came to the hospital this morning to see how he was doing and Dr. Bolivar, one of the cardiologists, mentioned that Joseph's progress was "amazing." He also added that he was on pace for one of the fastest recoveries they have ever had. The only concern was a collapsed lung that they optimistic about. It seems to be normal for someone who has been on a heart-lung machine and who has all of the accompanying secretions. This will probably take some time to pass.
Today was markedly better than yesterday. It is hard to watch him there, and today was so much more interactive. I got to hold him for the first time, and Lacy was able to feed him some breastmilk. His stomach was able to keep it all down without a problem, and so we are hopeful that they will be able to shift him to 100% breastmilk within a short period of time.
We also continue to be impressed with the breadth and quantity of prayers offered for Joseph. We received a nice teddy bear and some ballons from Investacorp, the Broker-Dealer with whom I am a registered securities representative. My father spoke with the CEO Bruce Swiegart, a very nice man, and he mentioned that some individuals confessed that while not normally inclined to pray, they felt impressed to pray for Joseph. He has been prayed for by Catholics, Protestants, Mormons, and Jews in Churches, Chapels, and Temples. His welfare has been the source of fasting and pleading. All of this for one small child, my child. It overcomes me to think of it, and fills me with gratitude. My own life has been so free of trials. The outpouring of love on his behalf is a source of strength and promotes my own faith.
All of this makes me think of the man who pleaded for healing from the Savior. He said, "I believe...Help thou mine unbelief." This was my prayer for my son, and the Lord has answered it and continues to answer it. This great blessing is not without price, for the responsibility it places on Lacy and me is to teach him to love and serve God and his fellow man. This means that our own lives must be consistent with that goal. Sometimes these kinds of prayers are not answered the way that we want them to be. Lacy and I feel very fortunate that ours was answered in the desired way, and we feel like something is expected of us as a result.
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August 5th- my birthday. I have everything that I could want- a loving wife and a healthy (and improving) son. I have seen the power of faith manifest in the life of my son, and that gift will last much longer than the other things I might hope for. I am also impressed by how blessed we are with regard to Joseph's heart condition being limited in scope. Many of the infants here in the Cardiac ICU are very small or have multiple significant defects. We can anticipate no further surgeries and a normal life for Joey. That is another gift.
I ran to the hospital to deliver some breastmilk and then Lacy's mom, my mom, Lacy and I went to the Gables Diner for a big birthday breakfast. Since then we've spent a great day with Joseph ( I fed him for the first time). Soon we will be heading back to Ari & Kelly's for some birthday pizza, and then perhaps back to the hospital tonight. Lacy's mom heads back to California tomorrow, and it has been wonderful having both of our moms here to see us and the baby. We will miss her when she leaves.
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I had a great little birthday party, a surprise by Kelly & Ari, and we had a nice night with everyone, which included missing our little guy. August 6th was a nice day as well, as Joseph's condition continued to improve. He had been eating expressed breastmilk from the bottle for the past two days, and they told us that Lacy could try to breastfeed him directly. Immediately he latched on to Lacy, and although the duration of the feeding was not all that long, it was promising. By the end of the day she had nursed several times and he seemed to be a natural. We went home pretty happy, but it gets harder to leave him each day.
I spoke to a father whose daughter has the same condition. She has not yet received the arterial switch operation, and I could see on the father's face the same look that I must have had. Even having passed through the same situation, I find it hard to put myself back in his shoes, so different do I feel today. Additionally, the complexity of these procedures is such that I could hardly promise him anything based on our experience. I do have great confidence in the Dr. Burke, and I told him as much. Even giving all due credit to Dr. Burke's prowess, I have to attribute a lot of Joey's success to Heavenly Father.
As if to further punctuate this, J-III was moved out of the ICU to what they call "The Floor." We share a room with a young kid named Joe (so at one point there were 4 Joe's in one room) and he is nice and keeps the volume down. We were surprised to be moving from the ICU so soon. They told us that Joe was just too healthy for the ICU. One step closer to going home. This also means that we are responsible for more of his care, and that Lacy can stay here overnight to nurse him. We are not happy about the separation and are even more eager to get home. Of course our concern from Joseph outweighs this desire, but I do think that we will be home by next Friday at the latest. That would be fantastic.
Some of you may noticed that I refer to Joseph by several different names (Joseph, Joey, J-III). The reason is that we still haven't figured out what to call him. I like J-III for fun. Its like his street name, or rap name. I know that some in the family like Lacy's sister Lillie like Joey for him. Lacy has yet to weigh in with her firm choice. Maybe when we get home this decision will fall into place for us.
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Sunday was our first night in a regular room and it was a long, tiring night. We quickly realized how pampered we were in the ICU with regard to the amount of nursing care that he received. We are grateful to have him close to us though, and look forward to having him home for good. Monday was a lot of sitting, with some errands thrown in, as we waited for Joseph's progress. By Monday night he was free of any oxygen tubes of any kind and had a much better night (or at least, I had a much better night). Monday morning the doctor mentioned that he would like for us to be able to leave in a few days. We didn't know exactly what that meant.
When the doctors came by for rounds Tuesday morning, we were so close to being discharged. They elected to keep him in the hospital for one more day, just to check on his chest congestion. The day has passed without incident, and as I type this at 10:49 on Tuesday August 9th, it is with confidence that Wednesday is a day of liberation for all of us, and only 8 days after surgery. I keep looking around for Joseph's gold medal, but I guess they don't actually have anything like that. We are so glad to be going home. We have developed a pattern here that is workable, but the idea of going home is the utopian ideal.
I feel like I should reiterate how fortunate we have been at every step of the way. Everyone we have interacted with has been wonderful, within the hospitals and without. Things like this bring out the goodness in all of us. I can honestly say I am grateful for trials.
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It is now the evening of August 14th and we have been home for several days. The routine of being a "normal" parent is decidedly lacking in routine. There have been a few sleepless nights, for Lacy mostly, and a few days where it seemed like all the little guy wanted to do was eat (another thing that has affected Lacy primarily). Still, for all these minor inconveniences, we are so glad to be home. After all, it will take some time for Joey to establish the behaviors that he was unable to learn over the time that he was in the hospital.
I went to Church today and I felt overwhelming gratitude, for God, family, and friends. My heart was full, and it was hard to keep all my feelings in check. I don't think I could describe them in a way that makes any sense, but they were there and in full effect. I know that the trials of parenthood will be many and varied, but Lacy and I have established the foundation upon which to build our future. We're so fortunate that Joseph will be a part of that.