Cardiology Check up.

Penelope had her annual cadiologist check up today. I must admit that I am a little bit nervous going in. I know I shouldn't be because Penny is obviously doing really well, but there is always a little part of me that waits for the bad news.

WELL, today we learned that Penny is really close to 30 lbs, and she is 34 inches. We also learned that everything looks good! The insuffiency in the valve was measured at a trivial amount. Her branch pulomanary areteries have grown as they should!!

Here is hoping that her next surgery can wait until she is 7 or 8 years old. YAY!!!!

Penelope and CHD - Part VII

You can read where I left off in Part VI right here.

Sunday night, June 3, 2007 brought a tough decision. At the advice of Penelope's primary care nurse both Scott and I went home that night to get a good night sleep and spend time with Nathaniel. I can't remember the time, but we were asked to come in early the next day for us to say good bye and good luck to Penny.

Of course, we were running late so Scott and I went running to Penelope's NICU alcove so that we could put kisses all over her little body. We prayed that she would be returned to us. Next we had to pack everything up since she would not be returning to the NICU. The plan was that she would go to the PICU (pediatric intensive care unit) and then from there to a regular floor.

Penelope was 6 days old this morning, but she had never eaten anything. All her nutrition had been i.v. up until this point so I had a ton of those 2 oz cylinders with my breast milk which I needed to pack up and ship out. Eventually, the team was ready to transport her, and Scott and I were packed up and the race began. I say race because it was quite a long trip from the NICU in Hartford Hospital to the facilities at CCMC where she was going to be dropped off. There were no less than four professionals walking with us including her primary nurse. They all wanted to rush because they did not want her to crash while en route to the operating room.

We went down an elevator to the bowels of the hospital and then through a long tunnel that ran under ground, under the roads to the parking garage. There were two sets of steel security doors on the Hartford Hospital side and after what felt like an eternity of walking, anther 2 sets of steel doors on the CCMC side. When the first set had been visible, I thought, great we are almost there, but after we passed through those doors, another long corridor loomed ahead. Finally we got to the end and found another elevator on the CCMC side. We turned a corner and it was here that I had to say good bye to my little baby. She looked so helpless in the isolette that she was transported in.

Our hope was that she was going to be a good candidate for the full repair. This meant that the hole between her atriums and the hole between her ventricles would be stitched up. Also, a donor pulmonary artery would be placed where hers was missing. We were warned that Penelope would look quite swollen after the surgery and that the earliest we may not see her until 4pm if the complete repair was done, but maybe earlier if the a shunt procedure was done.

We waited, and waited. I kind of had this feeling that someone would give us hour by hour plays, but that was not accurate at all. We were assigned a family room where we could sleep as long as our child was assigned a room in the PICU. The regular floors in the hospital allow (and accomodate) rooming in for the parents. However, they have a strict policy against parents sleeping in the PICU. That was fine with us, the family room was one of four bedrooms that shared two bathrooms (with shower facilities) and a kichenette. I thought it was great! We didn't have to run back and forth to home and we only lived 15 mintues away. How great was this anemity to those traveling hundreds of miles!

Finally, after waiting in several different waiting rooms looking for someplace to feel comfortable, we retreated to our room. At last, at 1:15 pm, the Dr. himself knocked on our door. We shared a meeting in the hallway to the rooms, and were told that Penny's coronary arteries were not in a good spot and she was outfitted with a BT shunt. He could tell that we were disappointed for this because this meant we would have to come back in 6 months or so, but he said it was definately the best for her. He went on to admit, some doctors are more agressive and perhaps Boston would have done the full repair to avoid having another invasive surgery, but he liked to err on the side of caution to avoid damaging a vitail coronary artery and so he stuck with the shunt. We thanked him for his compassion and his hard work. We knew she had been in good hands!!

After what felt like another eternity, the closing team finished up with Penny, and we were allowed to meet her in the PICU room. I can honestly say about this experience that I walked right in, and then I walked right out. That baby in the bed was not mine. But the name on board clearly placed baby Ringrose to that room. Penelope's ICU nurse came in to explain all of the pumps and the breathing tube (in case we didn't already know about it) as well as the foley catheter, and the chest tubes. She told us that Penny was retaining fluid after the surgery which was more than common and that our baby was being administered lasix to help her heart in getting the fluid off of her. It was scary to go in there an sit by her bedside. I couldn't even imagine having to go through that myself and here was this little girl hooked up in so many places.

Penelope and CHD - Part VI

You can read where I left off in Part V right here.

The Thursday afternoon, I sat there nodding my head at all the things Katie had to tell me. Katie was the physician's assistant to the pediatric cardiac surgeon. Anyone who has met Katie will agree with me here that she is phenomenol.

She mapped out what was wrong with Penelope's heart and explained the diagnosis of Tetralogy of Fallot with pulmonary atresia. I was told that Penny would need a surgery immediately, but that the sugeon, Dr. Mello, was scheduled on important cases throughout the week at other area hospitals. There were two scenarios of what would occur during surgery. The preferred outcome was a complete repair. This is where the doctor would cut inside the heart, fix both the holes between the atriums and ventricles. Also, a donor artery would be used to replace the missing vessel. This was only a possibility because when working with a heart so small, the coronary arteries can cover a lot of the surface area of the heart, making it difficult to find a safe place to cut into the heart. If the coronary arteries were too much in the way, Dr. Mello was going to insert a BT shunt between her pulmonary artery and aorta (kind of like a synthetic ductus). The shunt would allow Penny to stay oxygenated so that she could grow and develop, but also her heart would grow bigger, possibly allowing the space to perform a complete repair later.

So, the advice was that we were to play the waiting game. We prayed that Penny would be kept stable enough to wait until the scheduled surgery on Monday.

Later on Thursday, I met with Penny's primary nurse, Rhonda. I loved her way of letting me keep as much control as possible since I was the parent. She also insisted that I get to hold my child so that Miss Penelope could understand that her mother was there for her. I have to say that day I got to hold my newborn for the first time since she was taken away from me in Manchester, it was wonderous. I got to smell her, feel her soft skin, kiss her warm head, and wisper all my love to her. As saddened as I was still of the diagnosis of Down syndrome, and then the news of the heart defect, I felt all the tension float away as I got to settle in with Penny in the chair.

THANK YOU FOR THAT RHONDA

The next couple of days were a blur of the NICU, coming home to find all the flowers and cards people were sending, pumping, and napping. Scott or I were always are the hospital. There was never even a discussion about this. We could never have let our daughter be alone even for a few minutes. So, we took turns staying home with Nathaniel and making sure that his needs were met. My mother also watched him a lot.

It should be noted as well, that at this time, Scott's 59 year old mother, Sandy, had been recently admitted to the same hospital to be treated for some respitory concerns. She would get into a wheelchair and get her husband to take her down a few floors to come into the NICU and visit. It was tough to see her so sick, but I loved that we could not keep her away from her new granddaughter.

By Saturday, it was clear Penelope had a very difficult time keeping her little body going. The balance to keep her respitory and blood pressure rates where they wanted it against the ever important blood oxygen saturation level (or pulse-ox) was difficult. I got a call from Scott in the middle of the Saturday night that they were going to intubate her. He came home to switch shifts with me and we both wanted to go to the hospital to see her. After we left Nathaniel with my mother again, we headed off.

Seeing Penny with the breathing tube was very traumatic for Scott, it reminded him of his ailing mother and I remember how moved I was by his tears. For me, it was honestly just one more thing. She was going to have surgery the next day and she would have been intubateted so I saw this as one less thing to worry about tomorrow! But it was still touch and go and Penny was a very sick baby. My grandmother called her nephew, the deacon and asked him to meet us at the hospital to baptize her. Scott and I were so happy for this because we didn't want to take any chances.

Penelope and CHD - Part V

Fact: 50% of people with Down syndrome are born with a congenital heart defect.
You can read where I left off in Part IV here.

I left the hospital and arrived home after 10:00 pm. That was probably the longest day of my life! But. It was not over. I wanted to use the breast pump before I took the sleeping pill and went to bed. I had rented the hospital grade Medela pump from Manchester, but I realized I was not in possesion of all the accessories I thought I had saved from Nathaniel. So, I put the machine away and went to bed, hoping, . . . no praying, that everything was going to turn out ok. I cried myself to sleep.

The next morning my mother picked me up to bring me back to the hospital. (I think Scott went to finish up the loose ends at his job so he could focus on Penelope over the next few weeks.) I didn't want to push myself by driving around God's creation, but physically, I felt great. It was still hard to believe that I just had a baby the day before. First we went to Babies R Us to see about those accesories I needed for the breast pump. They didn't have it, so we treked back to Manchester Hospital. I was able to purchase what I needed and off we went to Hartford Hospital.

After parking and the journey to the NICU I was able to greet my baby quickly before I learned where the private rooms were so that I could express my milk. There were three lactation consultants at the CCMC NICU, and one woman in training, so it was a comfort to get that support. Even the attending said something to the affect that this was the best thing I could physically do for her at this point. Busy work, to stave off the feeling of helplessness. But important work none the less.

I felt like I was waiting around forever to meet Penny's cardiologist. I received word that they wanted to do another echocardiogram to confirm the diagnosis and to make sure that her heart was going to keep working until they could get her in for surgery. This day was Wednesday, but the earliest they could get her in was Monday, June 4, 2007. Of course, when I finally decided to take a quick break to grab something to eat and express milk, the doctor came and went!

The next day, my friend Audrey drove me around. I still wanted to take it easy, since under normal circumstances, I would still be in the hospital. She drove my son and I to his school to drop him off and then headed to the hospital. It was this day that I learned a lot about Penny's anatomy.

The itty bitty ductus arteriosus was being kept open by medication and was keeping my daughter alive! The ductus is not labeled in this picture, but it is the very small vessel between the aorta (AO) and the branch pulmonary arteries (PA). Penelope was born without that ever important pulmonary artery. The ductus that was kept open magically by medication is something that generally closes after birth when the baby starts to use the PA to actually get oxygen from the lungs and not from the mother. I learned that Penelope was diagnosed with Tetralogy of Fallot and Pulmonary Atresia. If she had a stenotic or narrow artery, she might have been allowed to come home for a few months until she got big enough for a proper surgery. These are the many issues that make up the diagnosis. Firstly, she is missing the pulmonary artery, or PA. In addition to the problem with the PA, she also had a hole between the two artiums (atrial septal defect, or ASD). Also, she had the hole between her two ventricles. Since she had no PA this was the only way to get blood to move in a circular path. As seen in the diagram, her aorta sat right above the hole in the ventricular wall (ventricular septal defect or VSD) and it pulled blood from both the right and left ventricles. This is called an overriding aorta. She also had right ventricular hypertrophy because her right ventricle worked extra hard to try to pump blood into a pulmonary artery that did not exist and extra muscle tissue built up on that side.

Penelope and CHD - Part IV

Fact: 50% of people with Down syndrome are born with a congenital heart defect.

You can see pictures of her scar here in Part III. Or read where Part II left off here.

Scott and I finally left the Manchester Hospital a little after 7pm. Again, all I can tell you was that it was so surreal. I know there are plenty of moms that like to leave the hospital as soon as possible, but I was not one of them. Only 12 hours earlier, my daughter Penelope was delivered.

I needed to see my son again before the night was over as well as pick up the prescription for the sleeping aid so we headed out to my mother's house while the prescription was filled. I hugged and kissed Nathaniel so much that night. I had already begun to project my feelings of loss onto him and wondered how his life was going to be affected by his new sister. After I was satisfied that Nathaniel was settled in for the night, we made a quick stop back at the pharmacy and then off to Hartford we went.

Scott had stayed with Penny for several hours earlier in the day so he already knew where to go and what to expect.

It was close to 9pm when we parked at the garage. It was a warm spring evening when we walked out of the garage and across the courtyard and into Hartford Hospital. CT Children's Medical Center is adjacent to Hartford Hospital so CCMC is able to place their NICU in HH to have that unit close to the maternity ward. We were stopped briefly since visiting hours were over, but were quickly on our way up the elevator.

As we approached the large steel security doors to the NICU, I almost didn't want to go in. We were eventually greeted at the window and given nametags. On the other side of the doors, Scott schooled me on how to scrub in. I remembered back to when my baby brother Joe was born premature. I was ten and I was allowed to see him, but I had to scrub in as well. Scott and I headed to her little alcove there in the North wing of the NICU. About only five beds were permitted on this wing and it was so quiet. All the lights were off and I could hear the soft beeping of the machines. Occasionally, an alarm would ring in the distance. But in Penny's small wing, she was the only really sick one. The nurse on duty greeted us and led us into her little corner.

The first time I looked at her, I actually felt numb. A whole lifetime must have passed since last I held her at 9 am. Her eyes were so incredibly swollen that the edge of her eyelids flipped out a little, especially when she cried or was upset. In fact, the whole top part of her head was red. The corners of her small mouth were downturned and her chin was all scrunched up from the scowl. Her arms and legs were sprawled out. I tried to comfort her, and patted her arm. This immediately got her agitated and her eyes looked even more firery. The nursed warned me that it might not be a good idea to touch her while she was on the medicine to keep her heart working. "It can make you grumpy," is what she said to me.

So much time has passed since her birthday; I can't even recall how many lines were in her. But at minimum, she had an arterial line, two peripheral i.v.'s, a sensor on to continuously monitor her temperature, a pulse oximetry probe, and sensors to measure her respiratory rate. I quickly learned the meaning of the green, blue, white, and red lines on the monitor hanging above her bed space. I don't even remeber if she had a nasal canula at this point. I know that she was not on a respirator at this time, even though the prostaglandin medication she was on affects the respiration rate. I wasn't able to stay long. And even though it seemed unintuitive to leave my newborn behind me, I had to leave. I had to get out of that place.

Penelope and CHD - Part III Chest Scar

Fact: 50% of people with Down syndrome are born with a congenital heart defect.
Penelope today, at 30 months, has this bump in the middle of her chest from the healing of her sternum. You can see the faint circle shaped scars from her chest tubes.

A close up of Penelope's chest scar. You can really see the scar from the left plural chest tube. She also had a chest tube in the middle after her 2nd surgery (for the total repair). There is that bump again.

Here is Penelope several weeks after her 2nd surgery, the incision is still healing.

This was probably the first bath Penny got when she came home, so about 15 days after her first surgery. She still had the steri-strips over her inscision. You can see the dark maroon circles a few inches under her nipples. These are the wounds from the chest tubes. The week after this, the steri-strips were removed at the cardio office and then a few days after that an infection grew in the inscision wound. I think that added to the appearance of her scar.
Yay! A clean slate. A picture of her chest before she was brought under the knife.

Penelope does not have her own pulmonary artery so she will need several surgiers throughout her life. I don't worry too much about her scar since there will be future inscisions to contend with. I hope that Penelope will grow to think of them as her battle scars.

Penelope and CHD - Part II

Fact: 50% of people with Down syndrome are born with a congenital heart defect.
You can read about Part I here. The next time I saw my beautiful girl, it was about 11:30 am. You can see that she was tucked away into the incubator and ready for transport to Connecticut Children's Medical Center (CCMC). Everything was still a blur. I remember the physician from UConn going over a waiver with me. I remember he had this tick and said "hmm" between practically every sentence and that annoyed me. But, he was nice enough and he promised to take good care of her en route to CCMC.

I still hadn't grasped the enormity of the situation. I look back on this picture with distaste. Why was I smiling? What did I possibly have to smile about? Why was I holding my belly like I was still full of child? I guess, I still didn't know what to do with my hands at this point. Only 5 hours ago, there was still a baby in there. Immediately after this picture I had to yell at Nathaniel for playing with the buttons. I didn't know what these buttons did. He might have done some serious damage!

Scott was welcomed to follow the ambulance. Enter friend: Mike, this kid that Scott had met only a few months ago came to visit us immediately after hearing about the news. He brought me the most beautiful flowers and stood by Scott's side the entire day. Later that year, he moved onto another job and Scott and he lost touch. He was a tremendous source of support for Scott during this time and I was glad to have him. Mike was able to drive Scott behind the ambulance. We are so blessed that CCMC was only 20 minutes away so I wasn't worried that my family was too far away. My mother took Nathaniel back to her home and I was left alone to rest.

Proir to my mom leaving, as I sat there wondering what to do with myself, the obstetrician that attended during the beginning of my labor paid me a visit. We had just met earlier that morning, as I had all of my visits with the midwives in the practice. He did not stay with me through to the end of my delivery. Another woman who labored at the same time ended up with an emergency C-section and he moved on to her when my favorite midwife arrived to deliver my daugher. Yet, while I sat and stared, this doctor came back to me. He came in to see how I was doing and to offer any advise, should I seek it. I thought that ws very nice of him.

The plan was that I remain at the hospital a few hours for observation and my midwife would discharge me after dinner. I thought in my head that Scott would find out what was wrong with our daughter, wait for her to get settled in and come back in time for a dinner together . After dinner, we would promplty be freed and then he would take me back to Hartford. I expected all would go according to my plan and I would be reunited with my daughter by 7 pm.

It seemed forever until Scott returned to my side. He couldn't recall the issues that were concerning Penelope's heart or a name of a diagnosis. But he said that the Dr. Cardio said it was pretty common and the outcome was hopeful. I was warned that she was on medication to keep her heart working until they could decide on a proper course of treatment.

I seem to remember that Scott must have ran home to do something, because I was left alone, waiting for those discharge papers to come. Dinner came and went and still no word of when I could be let out. I decided to get myself to the nurses station and get in their faces a bit. My midwife was bound to be out there somewhere. As I head out to the station, I could hear the other mothers with their babies and I started to get emotional, yet I continued on to the desk. I stood and waited for an eternity for someone to pay me some attention. Since no attention came, I walked further past the desk to the great window of the nursery. There were no newborns in there right then, but the hurt in my heart began to deepen because I could not even opt to have my baby there. I headed back to the nurses station and with each step, another tear came down my face. By the time several nurses had time for me, I was weeping. I demanded to be discharged! Why should other mothers that had their babies get to go home before me??!?!

I remember being held up by two nurses, one on each side, to escort me back to my room. On one side was the new midwife on duty. She sat in with me and let me cry. The one thing that anyone said to comfort me in those first days was from her and it sticks with me to this day. She said to me, "You grew her the best way you knew how." Which was to mean, this was in no way my fault. It was such a relief to hear these words even before she went through the specifics. My baby was a wonderful 7 lbs 5 oz. She was born at 39 weeks and 6 days! All the work I did to keep myself healthy during my pregnancy will pay off because I just gave her every advantage I could to make it on the outside. Of course, my work wasn't done. The daunting task of pumping and storing my milk was ahead, but that is another series for another week.

This midwife and I had a discussion. I remember sobbing over the fact that my son was not planned (Scott and I weren't even living together when this miracle was made.) And it was hard in the beginning to get through all that. Now, Scott and I were married, settled, and decidend to bring a new life into this world, and it wasn't anything like we planned. (Geez, I sound like a poster child for "Welcome to Holland") She told me it was ok to feel this way. In a very obvious way she expressed her concern about post partem depression for me and that she wanted me in for a check up at four weeks. She also prescribed some sleeping pills. This prompted me to voice my concerns about my expressed milk. She told me that I can take the first night off from that and my milk would still be there the following day. She ordered me to take that first night off and really get a good night sleep in order to face what lay ahead.

AS ROUGH as that was, I am glad I took her advise.

More to come in PART III

Penelope and CHD - congenital heart defect PART I

Fact: 50% of people with Down syndrome are born with a congenital heart defect.

When we were waiting for Penny to be born, Scott and I thought that we were getting a "normal" and healthy baby. We didn't know if our child was going to be a boy or a girl, we didn't care, as long as he or she was healthy. We didn't elect for blood screening or further genetic testing. We didn't care, as long as he or she was healthy. The two ultrasounds did not indicate anything other than a healthy, normal baby. We didn't know our child carried a secret in her malformed heart. THAT we would have cared about, had we known. . .

Within minutes of her birth we learned that she had a lot of characteristics of Down syndrome. We were left alone with her to bond, but all of our questions about what the diagnosis meant were put on hold until the neonatologist arrived. At 9:00 am, when Penny was about 2 hours old, the nurse must have noticed that Penny was still an unhealthy shade of purple, and my daughter was taken away. The nurse didn't say anything to that affect when this happened. I was told only that Penny need to be looked over. When Nathaniel was born, I insisted all exams were done in my room so that he didn't have to leave my side, but with Penny, I was already worn and consented readily.

I was still in shock over the morning's events, and dead tired I should add since I went into labor around 9pm the night before and labored all through the night to deliver my beautiful girl at 7:00 am. So when the neonatalogist finally showed up some time after they took my daughter, it was a little hard to focus. My recounting of this morning's events, the morning of my daughter's birthday, is to the best of my ability.

Dr. Neo came into my room and introduced himself to Scott and me. I am sure my eyes were swollen from crying over the Down sydnrome diagnosis. But hell, I just had a baby with no epidural, so who cares what I looked like. He jumped right in to tell us that while Penny was being looked over, they realized that she was not maintaining a healthy blood oxygen saturation level (or pulse-ox). He said that they were working on her to keep her alive. That they had to put some lines in her to run some tests. And in my head, I jumped ahead, and thought that the next thing out of his mouth was going to be an unexpected, "We did everything that we could, but she didn't make it." Dr. Neo just looked so solemn, and was so soft, that I thought he was bringing me news of death. But in fact, Dr. Neo, went on to explain that there was something wrong with her heart and she would have to be moved to CCMC for examination.

My mother came in the door at this point with my son, my beautiful four-year old. I breifly wished I could be him, to not know all this chaos that was suddenly in front of me. I could see he had his spiderman pajamas under his T-shirt. A phase he went through so that he could change into Spiderman and be the Hero at a second's notice! My mother took one look at Dr. Neo, ignored the fact that he was right in the middle of talking to me and announced, "Who is this guy anyway?" with a wave of her hand directed at the doctor. I gaped and said, "Mom, he is the neonatalogist and he is talking about the baby." I don't remember if Dr. Neo recapped for my mother's benefit, or if he went on, but I further learned that he called a colleague at UConn's John Dempsy Hospital to come out and faciliate the trasport of my newborn. I later learned that my mother was annoyed that the doctor didn't introduce himself so she felt the need to intervene. I guess this is from all those years of being a nurse. LOL!

When Dr. Neo asked me if I had any questions, I couldn't think clearly enough to think of any. My mother asked him how soon I could be discharged. Where would I have been without her?!? At the time she asked that I thought she was crazy. Uh, hello? I just delivered a baby 3 hours ago! I wanted to forgot all this had happened. I wanted meals brought up to me. I wanted to sleep. I wanted to not have to leave the hospital and deal with whatever was out there in the world. Of course, a few hours after Penny was removed from the hospital, I couldn't wait to get out!

The plan was to move her by noon time and once she was in the hands of the cardiology team at CCMC, we would learn what was wrong with her heart and if she would need surgery.

More to come in PART II

Additional MRI post

This is not Penny's heart but gives an idea what the MRI looked like.
I was really blown away by the detail that the MRI showed. I can go through some of the things that Dr. S was looking at in this scan, because she was awesome enough to take Scott and I into a little room after the scan and walk us through the pictures. It was just really incredible. Since the scan is captured in three dimensions, there would often be 2 images on the screen. The images would be the same on both sides and then with a couple of mouse clicks to rotate the axis on one side, the other picture would coincide by bringing up the picture of a different cross view. Just really crazy stuff.

I was told by Dr. S that she checked out the size of Penny's right ventricle. One of the components of ToF is right ventricular hypertrophy. This is basically an enlargement of the muscle on the right ventricle. The reason for the enlargement is that this pumping chamber has to work so hard to get the blood where it needs to go if the pulmonary valve is defective or nonexistent,. When you work out a muscle it gets bigger, right? When Penelope had her repair surgery in December of 2007, the surgeon actually cut away some of the muscle tissue because it was getting a little out of control! Excess muscle tissue puts a strain on everything. It was a relief to know that the RV (right ventricle) was in fine shape because it means that the donor valve and conduit (donor artery or homograph) are working as they should be. There were no signs that her body was laying down calcium on the tissues. Also, the scan was able to measure the flow of the blood through the valve. Just amazing! It showed that the flow out of her RV was 20 ml per second (I am guessing second was the measurement of time here) and her back flow was barely over a ml. Some back flow is going to happen, I have been told. You just can't perfectly recreate God's system here. But 1 to 2 ml is something that anyone can live with.

This MRI scan was initiated because Dr. S could not get a good read on the condition of her branch pulomary arteries from the cardio echocardiograms. We were able to see in the images the large "patch" put in by the surgeon to funnel the blood out of her RV and into the donor valve. In a normal heart, the valve is partially inside the heart, like an exit door. From the valve, we could see the nicely sized conduit that was then connected to her branch pulmonary arteries. The arteries both measured a wonderful 7.3 cm or so. This is an ideal size for her and is actually close to the mean for children of her size. (well, compared to the data that has been collected). This was just wonderful news to hear!!! We do not have to go back to see Dr. S until November as long as there is nothing that concerns her from the scan. Dr. S still needs to take the time to review all the data she got from the imaging this morning, but she did not anticipate any surprises.

When Penny and I first got into the MRI department at 6:30, my baby girl was still pretty happy and sociable. We did have to wait until close to 8 am before I was able to take her into the receiving room. As I said previously, I had to quickly get her into her johnnies and then I was asked to follow the anesthesiologist into the imaging room. I had to sit her down on the bed and hold her while he put the gas mask on her face. After about one minute or so of her struggling to get the mask off, she had breathed enough of the gas to make her seem out. I know my daughter and I knew that she was not out just yet so I held onto her as the dr. turned away with the mask. When she began to talk again, he turned right back around and said "oh, I guess she isn't there yet!" So he masked her again and after another minute she was finally O-U-T. But she was so funny, even out like that, she managed to hold her leg up and then bring her foot close to her face. The 4 of us in the room thought that was soo cute.

A little after 10 am we were finally told that she was done and we would be able to see her "in a few minutes." About another twenty minutes later, we were told that it wouldn't be much longer now (I love how hospital time is so much longer than real time. 5 hospital minutes = 1 real time hour) As we were heading back to see her, following the sound of her cries, the anesthesiologist muttered something along the lines that they don't need that IV anymore anyway. As Scott and I looked to her wrist we noticed a good amount of blood. The bad baby that she is had pulled out the IV as soon as she could. But oh was she mad. I hate those scratchy cries from the dried out throat. They also needed to take peripheral blood pressures on all 4 extremities. This was a pretty impossible task considering her thrashing around and how upset she was, but the nurse did her best.

Soon I will post the few pictures I took of our event today. I am just so glad that it is done with!

Preparing for Tomorrow

I have no idea why I am so anxious over tomorrow's MRI. Since we found out that this is going to involve general anesthesia I have just had this not so good feeling. However, it is just an MRI and I am sure that everything will end out just fine. And anyway, what is the worst news that would likely come out of tomorrow's procedure? That she would need another surgery? Well, duh, we know she is going to need another surgery some day. I was hoping to get to 2011 at least before her next one was due, but the sooner her next surgery is over with, the sooner we can look forward to her next one sometime around puberty.

For those of you that are new to Penelope's story, she has Tetralogy of Fallot with pulmonary atresia (atresia = missing), her pulmonary valve and a huge chunk of her pulmonary artery are absent. Some folks with ToF are put right after one or two surgeries because they have ToF with pulmonary stenosis (stenosis = narrow). Penelope's atresia is so pronounced that both of her branch pulmonary arteries are then stenotic and they might now be growing properly with the rest of her body. This MRI is going to determine the severity of the stenosis in those branch arteries. Then Dr. S can decide of some intervention prior to her next surgery may be necessary. Of course, no one is anticipating that she might need intervention because she is doing so exceptionally well. Boy, that Dr. Mello (the surgeon) sure did a great job on my baby's heart. He picked a donor artery that she could grow and wen it is time for her next surgery they will be most likely putting in a bovine valve, how crazy is that!

Well, I hope everyone says a little prayer for Penny tomorrow and send some good vibes so that we get some good news. While you are at it, please say a prayer for both Jax as well as Dillon because they are not feeling well. I am sure it is very hard on their mommies to see them sick.

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Penelope is scheduled to have her MRI on Feb. 25. I am a little nervous. They will need to sedate her, but at least this way the cardiologist will have a great picture of the heart and all the vessels to figure out if the repair is failing in anyway. Clearly my little girl is thriving and I am not expecting bad news. Please pray that her little heart is working as it should! I am kind if interested in the MRI picture. If anyone else has had experience with this sort of thing with their toddler, please let me know how it went.

It was one year ago today.

I had to say good bye to my little 6 month old cutie face and leave her the arms of some very capable doctors and nurses for her second heart surgery to do a complete repair of her Tetralogy of Fallot defect:

And the next time I saw her she looked like this, but with the breathing tube still in. ( I just couldn't take a picture of her with the ventilator.)

3 days later, Scott and I were able to hold her even though she was pretty out of it.

On the fourth day after surgery, she even smiled at me while I gave her a sponge bath. I love my little angel on earth!

And we were so pleased to be able to bring her home on Scott's birthday, Saturday, December 22 so that she could be home with us for Christmas. She had no complications from the surgery and has been doing so well I still look at her with amazement for all that she has been through.

Mark O'Shea and Heart Awareness.

Question

When do you usually put up your Christmas tree?

We just put ours up today. Penelope was fascinated by the tree when she woke up from her nap and realized it was there. Nathaniel was such a good boy helping us with all the decorations. He kept saying, "I love putting the uniforms up." "When can we put the uniforms up on the tree?" Intead of using the word ornaments. It is so funny when they are that age and they use the wrong words. lol.

I will have to get some pictures up soon.

Click here for pictures of last Christmas. Keep in mind that Penny had open heart surger 8 days previously on Dec. 17 to repair her Tetrology of Fallot defect.

Pushing 25 lbs!

WoWsers!! Penelope tipped the scales at 25 lbs and .4 oz. That is of course with all her clothes and her leather shoes, not to mention the full diaper. The visit went well enough. I confirmed something I found online that Dr. Mello moved to New Orleans. Katie, his PA, now works solely in the P.I.C.U. I asked Penny's cardiologist who will do surgeries now and the answer is that they no longer do pediatric cardiac surgeries at CCMC. If a family needs heart surgery on their child, they either go to Yale or to Boston Children's Hospital. How sad, how very, very sad. It was such a relief knowing that my child was having surgery so close to home. But I guess you can't have it all. Some states don't have facilities like this such as VT, and they are hoping this is temporary, until they find someone else. . . .

But, now on to Penny's visit: Her VSD patch looks great, and the homograph conduit looks good with only trivial leakage. I was informed that you are never going to get a conduit that doesn't have some leakage. I asked about the muscle tissue growing on the right ventricle (Right ventricular hypertrophy), I was told that for now the size of her right ventricle looks good. As the conduit begins to fail, the heart will try to compensate and that side of the heart will enlarge some more, but we should be a long way off for that. Her EKG was normal. The only cause for concern was the size of her right pulmonary artery. You may recall in a post from last May at her last visit, my concerns laid with her left p.a. and how very happy we were that it was not as stenotic as it may have appeared during a cardiac catheter procedure in Nov 2007. Well, this time, it is the rpa that seems to have us guessing. It isn't a matter of it looking bad, it is more of a matter of her not being able to get a great look at the rpa. There may be scar tissue blocking the entrance, or it may be a shadow. Hard to tell in the echo cardiogram. So, Dr. Salazar recommends an MRI just to be safe. I am sure I was worried over nothing in the days leading to her appointment today, but now I have to worry some more until we get a better picture on the MRI. Worst case, they do another catheter to balloon up the stenotic rpa, WHICH IS NOT THAT BAD but still, I have to wonder. . . and wait!

Forgot to mention

The orginal purpose for me to post was to announce that Penelope is having her cardiologist check up today at 1pm at CCMC. I know she is doing well. She is a healthy 23 lbs, she is very active and she looks pink! But of course I am going to worry. I will post more and advise on how the visit went. We are hoping to be surgery free for the next 5 years at least!!!!!

Heart Link I discovered

I never realized that the Little Hearts Website linked you to a John Hopkins tutorial website that gives really great visual information on all the different kinds of heart defects. I finally understand what an overiding aorta means when reading the information on Tetrolgy of Fallot.

Penny is almost 1 year!!

I apologize for not posting in a while. I really wanted to get on there on Mother's day to wish all the wonderful mothers out there a spectacular day, but that didn't happen. There is a lot to tell. On May 9, Penny had a check up with the cardiologist. She was 20 and 1/2 lbs! Unbelievable right? The best news we got was during the ultrasound. You may recall that her last echo cardiogram revealed that her left branch pulmonary artery was very narrow. If it did not get better then some sort of surgical intervention would have been necessary. However, on her check up it was discovered that her left grew to be almost the same size as her right artery. Yay!!!! I was so elated to get such good news as was my mother who went with us and my husband. He was so worried that the doctor was going to find something wrong with her and have her whisked back to the hospital! I am so happy. We don't have to go back to see her until November. Another concern I had was that if Penny would need to be scheduled sooner than 5 years old for her next surgery since clearly, she has been growing so quickly. Well, that does not seem to be a concern for Penelope's cardiologist. She said that if Penny is growing well we should take that as a good sign. Also, the conduit (donor artery) that was placed in Penny's chest is so big that the cardiologist suspects it will last her until she is 6 maybe even 8. This is of course as long as she does not lay down a lot of calcium as the years go on.

Another thing that has been going on is our transition to different foods. I really wanted to keep her off wheat until she was a year, but I figured we are close enough. I gave her buckwheat pancakes this weekend and a graham cracker. She loved it. She also tried strawberries. Yum-O!

Lastly, the thing that has kept us most busy, is that I went up to visit my good friend on May 10 who just had a baby on April 27, and my car broke down in MA en route. Luckily, I was able to get a rental car fairly quickly and I resumed my trip. But my car is still in Tewksbury. I need to really make a decision on what I will do with it was recommended that we didn't fix it. I loved that car. It was an AWD 98 Subaru. I see other cars just like it all around and it makes me a tiny bit sad. Scott and I purchased another vehicle this weekend so it is all working out, but it just was unexpected, you know?

Well, I wish I could say that I plan to post again before Penny's big day, but I don't know that I will realistically be able to. Oh, in case I haven't mentioned it before, Penny is getting her 2 top center teeth right now, they are pretty established, but then tonight I found that she is getting 2 top bicuspid (maybe?) teeth as well. She is a teething monster! Good night!

Cardiology appt today

Penelope had a follow up appointment with her cardiologist today. I was priveledged enough to see a picture of Katie's baby. She is very cute of course. Penelope's appointment, however, was not as I had hoped it would be. Her left branch pulmonary artery is stenotic. Her cardiologist told me that I shouldn't worry even though the artery is only 2/3 the width that it should be. I remember when the cardiologist came from surgery and told Scott and me that the surgery was a huge success; that they found that they were able to work with the existing left pulmonary artery instead of rebuilding that too. I guess I should have known that her surgery news was too good to be true. Ah well, everyone says she is doing remarkably well. She is only 6 weeks out of surgery. Well, hopefully her cardiologsit is right and there is nothing to worry about. Maybe the LPA will grow with her and eventually catch up to the right side. Right. . . On the positive side, my baby is 17 and 3/4 lbs!! She is also 28 and 3/4" That means that, per the CDC statistics, she is in the 95th percentile for height and 50th percentile for weight in the typical kid charts. She is over 95th percentile for both of these in the T21 growth charts. She is trying to learn new things like holding on the edge of a coffee table and sitting on her own.