Monday, February 22, 2010

2560 Miles Later

We are home! Yippie! Riding in a car for over 22 hours each way is no fun pregnant. I have to admit it was so worth it. I felt like we actually got something accomplished. The doctors in Philadelphia were fabulous and the most brilliant people I have ever met in my whole life. Maybe I am being quite partial due to the fact that my precious Mia's life is in her hands. We left New Orleans Wednesday Morning and arrived in Philly Thursday night after sitting in traffic through Washington DC, Baltimore and more for over three hours. I cannot believe the way people actually drive in the northeast. I think I really would need lessons. It is scary. So I know you are all dying to hear about the visit. We have gotten so many phone calls, e-mails, letters...etc on how we are doing and the latest information so here it is. It has been confirmed our precious angel does indeed have Hypoplastic Left heart syndrome. However, the delivery of the message was quite different in Philly. We had some very extensive testing done on both babies. Our day started out at 7:30am and lasted until 5:30pm that evening. We first had a fetal echo done on both babies which gives measurements of each part of their hearts to check for median growth. Madden still looked great! Mia not so great, but we already knew that right. However, God is with her and I know he is. In New Orleans we were told that they were not sure how severe the defect is or what was involved or what if any her life expectancy was. So with that said we went through two more tests. We then had a level two ultrasound in which both Mia and Madden passed with flying colors! It appears that all of Mia's other organs look great. With HLHS most children have some organ defects as well that run hand in hand with the syndrome. Then I had a fetal MRI (quite interesting) and neither one of them liked that at all. Let me tell you I have never been kicked so hard in my entire life. It is over and we are thankful it went well. Once again, good news all looked great on M & M! We then sat down with the cardiology team and met Dr. Jack Rychick. He is a world renown pediatric cardiologist. He was able to tell us that there are two parts of Mia's heart that are affected. The Left Ventricle and the Mitral Valve. He told us he believed that Mia developed HLHS due to the fact that the mitral valve became sealed or leaky, and there was not enough blood flow to support the left ventricle's growth. Her aorta was measuring about 3mm and they were happy with that. They said at 27 weeks gestation they hoped it would continue to grow larger. In her last echo, which was only 2 1/2 weeks ago the aorta was only measuring 1.5mm, so all the prayers are working. I asked if there was any hope that the left ventricle would continue to grow and he told us that he did not think that would happen due to the fact that he though she had the mitral atresia. I am still praying and hoping for a miracle. It can happen I know it. Positve thinking=positive improvement, healing and recovery. I have another appointment on March 17 in philly for all of the same tests again to see if there has been any improvement. For those of you that are not aware of what HLHS is here are a few things for you to know so that you can compare Mia's scenario: In HLHS the left side of the heart does not develop normally. All of the structures are usually small. So it is like being born with half of a heart. If untreated, shortly after birth the baby will die. The syndrome varies in child to child. No child is the same as another. It is the most serious CHD due to the fact that there is no permanent fix. They can re-route the heart and make it work but there are no definite outcomes. At CHOP, they are working every day to help make that come true and to be able to cure these children. The affected structures: The Left ventricle, the mitral valve, mitral atresia, the aorta, aortic atresia, coarctation of the aorta and sometimes an intact atrial septum (this makes it a bit more complicated). They can also have other CHD's on top of this as well it is very common for such to happen. They told us that in Mia's case all of the structures were present and that they were not small, just not working as good as they wanted. That is why they were led to believe the mitral valve was closed. He also said that the left ventricle was not that small but it was not strong enough to support the heart at this point. We are so glad that we went they were able to answer each and every question we had and they put us at complete ease. He told us that about 20 years ago all cases of congenital anomolies were classified as fatal and they have all come a very long way. He also told us there was no need to be negative because they were having such great success with HLHS. Every five or so years they make break through strides with this defect and hope to have it permanently fixed in the future. Now with that said, some children do not do so well but how do you know if you do not try. We can only pray that she is going to be with us a long time. I know she will, we wanted her too bad for that not to happen. I talk to her every night and day and tell her that she is being taken care of and it will not be long when she is born until she comes home with us. On our next visit we will meet Dr. Spray, who is the world renown pediatric cardiothoracic surgeon. He has saved the lives of many. For those of you that do not know much about CHOP is that the Norwood procedure was actually pioneered at this hospital by Dr. Norwood. I actually learned there is a movie about HLHS and how it has evolved. It is called In God's Hands. I intend on renting it. I want to learn so much about this so that I can be an advocate for other parents, as my new heart friends are doing for me. On March 14, I will be relocating to Philly for good til the two angels are here and little miss Mia is well enough to come home. So at the end of the day, they told us she statistically scored a 9/10 on surviving the first surgery. Every hurdle becomes better and better. I will deliver them by a planned c-section in the special delivery unit at CHOP so I can see her anytime I like. Her first surgery is supposed to take place a few days after she is born. They want her to transition smoothly and keep her as stable as possible. At birth they are going to give her a medication called prostaglandin to keep the fetal circulation physiology. This will enable her to remain as stable as possible. The only risk factor they forsee is that she is a twin. They need her to be as big as possible. Please play that they will stay in my belly and be as comfortable as possible until about 36 weeks. Madden measures 2.5 pounds and Mia is 1.15 pounds. They said that looked good. It is very acceptable for twin ratio about 15%. I just wish she was the bigger of the two...she needs it. So with a full day of fun at an end we left Philly on Saturday morning and drove back in to New Orleans. I have to tell you though, as we were passing through Virginia I happened to see a billboard on the interstate that read: "Jesus heals broken hearts". We drove by it quickly and I was unable to get the bible verse under it but I am almost sure it was Luke. If anyone knows please let me know. Coincidental? Well lets hope...that is the way I will end today. Keep praying. We love you. Jen, Ray, Cole, Madden and Mia.

Friday, February 12, 2010

Freezing Friday

So waking up to rain and ice here in New Orleans is no fun at all. I kept Cole home from school today just because the weather was horrible this morning. As many of you know it is Mardi Gras or "Lombardi Gras" as the city of NO has been calling it. It is gonna be a long drawn out weekend with all of the parades going on. In fact, I am trying to decide if I want to drag myself out into this miserable cold to take Cole to the parades. Keep in mind that this week is Congenital Heart Defect Awareness Week. Everyone should take a minute to educate themselves on the facts about CHD's. No one really becomes interested unless it happens to them and maybe I was one of those people but now I try to tell everyone to educate themselves. I am having some anxiety due to the anticipation of going to Philadelphia. I hope they give us long awaited good news. Everyone please continue to keep our family an your prayers.

Thursday, February 11, 2010

The Beginning of our Journey

So the story begins whens I am 23 weeks pregnant and I go in for a routine ultrasound. I am having twins so they have been taking extra precautions seeing me and observing the babies every two weeks. Two weeks ago while I was there the ultrasound tech told us that she was not able to get a clear visual of Mia's heart for the past few weeks and she wanted me to be evaluated by a maternal-fetal medicine doctor. According to her and my doctor we would rather be safe than sorry. So without trying to be upset, I calmly walked next door to the doctors office where my Mom works and burst into tears. I just could not get past the part where there actually could be something wrong with one of my babies that I had asked God for so long to give us, which was a battle in itself. The maternal-fetal medicine doctor had agreed to fit us in that day so that I would not have to go home and wonder what if. On this day I forget to mention that my husband is at home with our 2 year old who is sick and needs to go to the pediatrician. With me being alone my mom says that she is going to take the rest of the day off and come with me so that I do not have to be alone. Well thank God because I do not know what I would have done had she not been with me! My appointment was supposed to be for 1:00pm. Well it was one of those hurry up and wait know the ones that you are like watching paint dry. Although, I felt so guilty to complain after they had been willing to fit me into their busy schedules. We finally went in at about 3:30pm and had a very extensive ultrasound that was performed by the tech and then the doctor. After it was all over he said four words that have made a huge imprint in my brain. Hypoplastic Left Heart Syndrome. Hysterically trying to pay attention all that I heard was fatal, death, termination, non life compatability. By the time I left the office I had no idea which way was up or down. You try so very hard to make sense of the situation or that there must be some kind of mistake. I still had to go home and explain this to my husband that was home all day with a sick baby and I really could not answer any of his questions because the specialist could not even answer mine. I called the pediatric cardiologist as soon as I walked in to beg them to see us ASAP. I was sure with all of this stress I would never be able to make it. He agreed to see us on Friday of that week and here we were on Monday. I must admit it was so very hard to absorb and I barely pulled myself out of the bed. So lets get to Friday....Here we are bright and early at Children's Hospital New Orleans with my supportive Mother once again in tow. Hoping to get better results. My husband had yet to have the days I have had this week.....once again I say yet. After the long extensive fetal echo, the doctor called us to his office and explained to us that he "thought" Mia was going to have HLHS. So with all of my medical background and all of the hours and hours I have spent on the internet for the past four days, I begin with a list of questions he CANNOT answer. I was so discouraged. I felt that I was trapped and could not make a move. I needed to know and NOW. I went home and researched again for hours and hours. I prayed to God and asked him if he wanted me to save her to guide me and help me find where we needed to be. On facebook, which has become my new life I admit I began meeting several families that have children with HLHS. These parents are such positive people and I have so much to learn from them. After speaking with several of them for a few days we realized the Children's Hospital of Philadelphia was the right place for us. We are taking the 20 hour journey next week. My appointment is on February 19, 2010. We hope that we can get some of the answers that we have been looking for for over 3 weeks now. I have not doubt in my mind that we will have that problem. This facility prides themselves on the survival rates of their patients with HLHS. We did have a second visit at the Children's Hospital here in New Orleans before making this drastic decision. Although they have had successful outcomes for children with HLHS, they only do about 8-10 surgeries a year whereas CHOP does about 100. Sorry my post is so long but i wanted to make sure you had all the demographics of what this was going to be about ahead of time. I will continue to post information up to date and hopefully it will be to the point now that I can talk one day at a time. Please keep our family in your prayers as we are hoping for a miracle. Which I do believe can happen. After all the saints did win the superbowl..haha! We love all of you and thank you for your Support.

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