kiddos

kiddos

Friday, September 28, 2012

Auguste

On Sept. 25, Mickey and I went in for our routine 20 week ultrasound. Because I am 36 years old, and therefore considered "advanced maternal age" this ultrasound took place on the high risk floor because they have more advanced settings on the ultrasounds.
Our sweet baby boy, Auguste, was found to have non immune hydrops. This essentially means that he has a fluid accumulation in two cavities of his body, in his case, both chest and abdomen. This can happen for a variety of reasons from chromosomal disorders, to infections, to anemia, and so forth. Unfortunately in most cases, this is a fatal finding. In rare cases, however,  this absorbs on its own and the baby goes on to develop naturally. In some cases, if a cause for the hydrops is identified, doctors can try to intervene and help this with a variety of methods.
We began further testing immediately, with more lab work and amniocentesis.
So far, we know that the main chromosomal disorders, including Down Syndrome, trisomy 18 and trisomy 13 have been ruled out. This is fortunate because the prognosis for those disorders with hydrops is very poor. We have also been able to rule out parvo virus and cytomegaly virus, which is somewhat discouraging because there is a better prognosis when in infection is the root cause.
There are many further tests that are still pending. We will do another ultrasound on Oct. 8 with a cardiologist to further examine his heart. We spent a lot of time studying his heart and other organs, blood flow, and development and so far everything else looks completely normal. We also have a DVD from his 16 week ultrasound when we found out the sex, at which point everything appears normal, which seems to indicate something more acute has happened.
Our doctor has told us that now is a time to truly seek a miracle. And we believe he is a miracle. He is alive and well at the moment.
We are praying hard for him, because he needs to get well. In order for his lungs to keep developing and for him to be viable at birth, this fluid has to reabsorb. Otherwise, he will could die in utero, or shortly after birth.
The internet is statistically quite bleak, and I have cried myself to sleep at night desperately praying for a miracle. Mickey feels confident that he is well now and he will continue to improve through the next weeks.
It has been a very hard few days, because when you work in oncology, as I do, it is easy to get jaded regarding the implausible  It happens, but everyone is praying for a miracle and it is hard to feel like you are likely to be one of the rare few that get one.
My father told reminded me recently that we do not trust a God of internet statistics, but we trust a God of miracles, and that those miracles are unlimited. UNLIMITED!!!
We have only just decided to share this story with everyone, because it is important to us that people remember that our sweet Auguste is alive and that their words of encouragement and prayers for us are directed at his ultimate healing. We do not want people to give up hope and we want people to continue to have faith that our baby boy with survive this.
Mickey and I have not been trying to keep this secret, but we both deal with these things differently. We decided to start this blog to give people the information they needed. We know there is a lot of love for us out there and we feel so blessed by it. We know that people care for us and want to know what is happening in our lives. I know there are a lot of questions and we will try to update this blog as we find out more answers.
I certainly can use words of encouragement as often as possible, because I feel like the past few days and the coming days will continue to be full of sleepless nights and worry. I am trying to stay positive and healthy because that is important for my growing boy. So if you have a song or a verse that you think will help me with hope and faith in the miraculous, please send it my way.
Mickey would like to deal with this more privately. Those of you who know him well know that he lost his brother when he was a senior in high school. It is hard for him when he feels that people, no matter how good intended they may be, are pitying him, especially since Auguste is alive and we need to know that people not writing him off. That is how it feels to him, and therefore, please understand if he does not desire emails and phone calls regarding this.
We both truly desire your prayer and hope and faith with us that our sweet son will be in our arms in February, healthy and happy. Please have faith with us that our little miracle will be completely healed.

Much love,

Lisa

9 comments:

  1. Lisa,
    I love you and believing, with you, for your miracle. I pledge my faith and prayers!
    Hugs,
    Aunt Denise

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  2. "Casting all your care on him for he careth for you." I Peter 5:7

    No matter what the trial, he is a God of an unlimited supply of grace, mercy, and abundant miracles. And He does it every day for each one of us, because we are each that special to Him.

    Even though we see the hard side of things daily, never forget all of the miracles we have seen along the way, too.

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  3. Yes Lisa, He is a God of incredible miracles that I have seen with my own eyes! It is 4:00am, and I can not sleep, which lead me under the covers, to Facebook, to your blog, to this news, and now out of bed, and on my knees. I will pray to the Great Doctor and then happily plan to meet sweet Auguste in February.
    Melissa

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  4. "To commune daily with God in deep meditation, and to carry His love and guidance with you into all your dutiful activities, is the way that leads to permanent peace and happiness."

    -Paramahansa Yogananda
    I love you, Lisa:)

    You and your beautiful family are in my prayers:)
    God bless you all, always!

    Yamira:)

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  5. Don't ever be afraid to pray and believe in miracles. Our God is the same God of the bible. He is in the miracle business. This is His sweet baby boy and Augusta has been given to you for a purpose. God has a special plan for his life. Go boldly before him and claim his word. In His word he tells us to ASK in His name and it shall be done. We are askin in Jesus name that Augusta is restored to perfect health in order to carry out his purpose on this earth. God, You told us to come boldly to you and we are. Heal Augusta and calm his loves ones. Amen.

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  6. Hey Lisa,
    I just wanted you to know that I am thinking about you, your family and Augusta today. I have a co-worker whose 1 year old daughter was diagnosed with cancer in her stomach. They are back in the hospital for 5 days of treatment. We took them breakfast this morning and saw little Bella just as happy as could be. The children of God are so strong and brave and I know that Augusta will live and be part of your beautiful family. Have a blessed day!!

    -Renee

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  7. Just seeing this blog and the update on your sweet baby. You are officially added to my list and I look forward to your updates. I LOVE what your father said about our Father!
    Sharing in your hope~
    AmyDearie

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  8. Lisa, ran across this scripture tonight and felt like I needed to share it with you. Praying for you family. Psalm 91 14-15.

    LP

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  9. I just stumbled upon this blog and only wish I had sooner so I too could have provided support as I was going through this around the same time as you were. At the time though, I avoided the internet and the dismal statistics and photos. On August 10, 2012 during a routine ultrasound, my baby was also diagnosed with fetal hydrops. We were immediately sent to Brigham and Women's Hospital in Boston (luckily we are only about 30-45 min away) while my 3 little ones were home with a babysitter until my parents could make it from CT. It turned out that several months before, I had contracted parvo virus which I passed on to my sweet baby. I was given the option to head to the Brigham for an intra-uterine blood transfusion OR go home and let the baby pass over the weekend. We drove to the hospital and after ultrasounds and tests it was determined we needed a blood transfusion for the baby because her marrow was no longer making blood which was needed to pump out all of the fluid due to pericardial effusion, ascites and pleural effusion. Meanwhile, my husband reached out to our pastor/friend who spread the word to our church to pray for us. That evening as I finally crawled into bed after 9PM. While I couldn't sleep I felt very comforted. The next day we returned for an ultrasound and things were looking better...on Monday August 13, we had to head back for another transfusion. We decided to find out the gender of the baby so we could name her and pray specifically for her and let our families do the same. 2 tsps of blood and a whole lot of prayer later, we met Faith Virginia on January 5, 2013. This little girl, who is soon to be 5, is truly a miracle (our specialist told us that she couldn't believe the baby survived the first transfusion). While I know all babies are miracles - this was even more evidence that God performs miracles in our lives if we are open to seeing them and have faith in Him.

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