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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.

11 comments:

  1. Jen,
    I am so glad that the trip went well. Seems like you have gotten so many questions answered and are having a positive outlook. You are such a strong person and you have a wonderful, supportive family! You and the babies are in our thoughts and prayers.

    Nicole & Zach Broussard

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  2. I am so HAPPY, that your questions were answered so well, and CHOP was able to give you Peace! They really are amazing there!!! I will continue to pray for your m&m twins (how cute), and for Mia's success on this journey! Glad your trip was safe... and that you were able to see the billboard message on the way home! God does send us signs... he loves and comforts us during our trials!!! God bless and Heart hugs! Joy

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  3. Good Luck w/ everything! Sounds like Mia and Madden are in great hands. Take care and I will keep your family in my prayers! Mandi Gutelius

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  4. Jenni---I love ya'll so much. I am praying for you all the time. I'm always here for you.

    Love,
    Katie

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  5. I found your blog through some internet searching. I have twins (boy/girl) who will be one year old on 3/4/10. My son, Chance has HLHS. We too, found out during our routine ultrasounds and were closely monitored. I actually ended up in the hospital with pre-eclampsia last Feb. Our twins were born 5 weeks early and it's been almost a year now. SUCH a journey!! I remember when I was pregnant and trying to find all of the information I could find....looking for parents with HLHS babies to talk with. I just wanted to encourage you and let you know that we are here if you need any support from someone who's been there. My name is Susan and here is our blog: www.caringbridge/org/visit/chancerademaker
    susan.rademaker@hcahealthcare.com

    God Bless

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  6. Luke 4:18 (New King James Version)
    18 “ The Spirit of the LORD is upon Me,
    Because He has anointed Me
    To preach the gospel to the poor;
    He has sent Me to heal the brokenhearted,[a]
    To proclaim liberty to the captives
    And recovery of sight to the blind,
    To set at liberty those who are oppressed;

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  7. Hi!
    I came across your blog today. I will keep your family in my prayers and remember to always stay positive. I have a 2 year old daughter, Cassidy, who was born with Tetralogy of Fallot w/ PA & MAPCA’s.
    I think blogs are a great way to get the word about about CHD’s and I commend you for what you’re doing.
    My wife and I are also on a mission to spread the word about CHD’s. We just started a jewelry company called Lucky 10. All of our products are handmade and pertain to Heart Defects and the Heart Community in general.
    Please check out our site when you get a moment. If you could help us get the word out about our new business we would be very grateful. It’s a project that’s very dear to our hearts.
    www.lucky10.etsy.com
    Thanks so much and we look forward to reading more on your blog!
    Thanks,
    Vito Lisa

    P.S. If you want to keep up with Cassidy’s journey here is her Carepage info:
    www.carepages.com , Page name: cassidylisa

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  8. Psalm 147:3
    He healeth the broken in heart, And bindeth up their wounds.
    [American Standard Version]
    May Mia grow stronger each day and live a long, healthy and happy life within your loving family.

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  9. Came across your blog through "Julianne's Journey". Your blog is very informative and sweet as you seem to have such a positive attitude. My daughter is a pediatric cardiology
    nurse in the PCICU and has taken care of so many "Heart Babies". God Bless you as take this journey and will will continue to check in on you all, especially Mia and Madden.

    PS My grandchild calls me MIA so.............

    with God's peace and love, MIA

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  10. Oh my goodness.. reading everything I did just brought back a million memories. Our little guy just turned 2 and has HLHS. I can tell you that it is not an easy journey, but SUCH a blessed one!! Mia will be in great hands at CHOP. We almost went there, but settled with our hometown hospital of Phoenix Childrens. Owen is post Glenn and doesn't qualify for the stage 3 surgery so we now travel back and forth to Stanford waiting for the perfect time to transplant.

    We'll be following along and praying for both your little ones.

    If you ever want to chat, I'm always here. Our blog is simmonsfamilyudpate.com. There is a sidebar full of HLHS blog kiddos, most doing wonderful and a few angels that fought hard. Please come by and visit, you will find support and come to know how amazing these kiddos are!!

    Praying for you.
    Andrea

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  11. ha.. spelled our blog address wrong... just type owensheart.com it's easier. It all goes to the same place anyhow.

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