Our last ultrasound showed a growth on her face right beside her lips, our regular doctor thinks it is a growth due to clotting, that could easily be removed.I have a disorder called MTHFR (a folic acid deficiency) which puts me at high risk for blood clotting, which they think is what caused the HPE, they think she had a stroke early on due to me not being on Heparin. Well, the high risk doctor tried to say that the growth is a cleft lip, but I've had a 4d ultrasound done on her face and they didn't seem to think she had one. We have no faith in the high risk doctor, he's wanted me to terminate from day one and gives no extra time to this baby. I am currently in search of a new doctor to look at this for us, I've also emailed the pictures to Leslie at the Carter Center to see if she can have someone look at it. Regardless though, we're still going to love her no matter the circumstances. We go for another ultrasound on Monday, I'll make sure and let everyone know how she's doing. Last ultrasound she was 11 oz.
April 13th, 2009
So I went to the doctor today. Where to begin?... I always find myself discouraged when I leave there. Good news is she's growing at a normal rate. She is now 1 lb. 14 oz! That's bigger than Chloe was when she was born. Bad news is her head is reading 2 weeks bigger than it should, which means she has excessive fluid buildup in her brain. He thinks this could cause complications for delivery. I may have to have a c-section b/c of the size of her head, or he said he could go in with a needle and extract the fluid, but this didn't sound safe at all to me. He doesn't think a c-section would help her chances at all. He doesn't think she even has a chance. She also was showing a severe cleft lip/palate, which is one of the reasons he thinks she's not going to make it. Babies born with this can't breathe or eat on their own. I find it so hard to find strength sometimes. I always tell myself I'm not going to get discouraged when I go to these appointments, but after hearing all this, I can't help but be. We're still going to get another doctor, but I'm afraid we're just going to hear the same things. I wonder how all the mothers going through this or that have been through this stay so strong. It gets so hard sometimes. All I want is a beautiful, healthy baby to bring home with me. I've wanted this for so long and sometimes it seems like it's never going to happen. I just have to keep going, trying to be strong, and one day, I know I will get my wish. I hope everyone will keep us in your prayers. For now, I just want to go curl up with my little girl and go to sleep. Maybe tomorrow will be better....
May 4th, 2009
So today we went to a new high risk doctor. I must say he was much better than the last doctor we were seeing. Although, he didn't have much hopeful information to give us, he was much more caring about our situation. She now weighs 2 lbs. 9 oz. She is still growing at a normal rate, which is good news. He doesn't recommend a c-section, and they don't think she'll be able to breathe on her own when she's born. She does have clefting, but also has a growth beside her nose. The last doctor thought that the growth was part of the clefting. He's starting to get worried about me going into labor early, or her passing inside me, due to the fact that only 3% of babies with holoprosencephaly survive to birth. So, I am constantly tracking her movements! So far, she's very active every day. At our next appointment, we're going to talk to a neonatologist and come up with a birth plan for her. We're not quite sure yet what this will include, but we think that if she can't breathe on her own, we don't want any kind of life support for her. We just want them to give her to us and let us spend every waking moment she has surrounded by her family, not with strange doctors and tubes. They said they could help her to breathe with life support, but she would most likely never be able to without them. However, if she can breathe on her own, we want them to do whatever is possible to help her with any other problems she may be having. We just don't want machines and tubes to be the only thing keeping her alive. We're going to leave it in God's hands, not the doctors. If she goes to be in heaven with her sister, at least we know she'll be in a much better place. This is hard to accept sometimes. All I really want is for her to come home and be with her Mommy and Daddy, and somehow this makes me feel selfish. People wonder how I'm so strong and taking everything so well. Well, I don't feel that way. Ever since we found out the diagnosis and decided not to terminate, I just prepared myself for the worst. However, I am definitely praying for the best. For now, I just try to enjoy this pregnancy as much as I can, because I have faced the scary fact that this time with her inside me is probably the only time I will ever have with her. I made the decision a long time ago that I was not going to go through this whole pregnancy depressed. All I can do is enjoy her every movement and every ultrasound. I think I'm prepared for what's to come, but when the day comes for me to have her, I know I won't be as strong as I am now. I am terrified for that day. Especially as I near 30 weeks. I should still have another 2 months with her, but I know anything can happen any day. I urge everyone to keep praying for us and for our little baby Hope as we get closer to this fast approaching day. We really appreciate all the support from our friends and family.
Welcome to the Holoprosencephaly(HPE) family. Our daughter is 7 years old with semilobar HPE. She is a very determined little angel! We were also told she would be in a vegatative state, but they were oh so wrong! I pray your precious Hope also decided to "write her own book". Please check out www.Familiesforhope.org and see Rachel as the June 2008 Child of HoPE.
ReplyDeleteWow - this brings tears to my eyes. I lost my first daughter and she would have been five this January... where does the time go? Our baby girl is now 7 months old and was diagnosed with Alobar at about 17 weeks of gestation or so. She sure moved a lot and we heard the same vegetative state thing. She was born by C-sec screaming her head off and she has done nothing but improve a little at a time. My prayers and love is with you all!
ReplyDeleteHey, it's Mom again. I just read the first two comments about HPE and cried tears of joy. God gave us Hope, and so did these two moms. God bless them! I'm so proud of you for trusting the Lord instead of the doctors. Thank God for people like you and these moms who are willing to share their stories and encourage one another. You and hubby are not alone in your journey. . .God is with you.
ReplyDeleteThis message is for the mom of another beautiful little girl, Rachel (June 2008 Child of HoPE @ www.Familiesforhope.org). I love what you wrote: "Every child can bring hope and love. . .we just have to open our eyes." God bless you. You and your family will be in my prayers from now on. So glad to have "met" you. Thank you again for sharing your story.
ReplyDelete(((HUGS)))
ReplyDeleteHi, Ruth! I got the comment you left on our blog and immediately came to check out your story, and I must say how amazing I think you are! You are a strong mom, and you're not giving up hope on the amazing miracle of life. I can only imagine the heartache you went through in losing beautiful Chloe. Your girls serve so much purpose in this world, no matter how short their time is. "Before I formed you in the womb, I knew you. Before you were born, I set you apart for my holy purpose." (Jeremiah 1:5) Like me, I'm sure you've found a deeper meaning of faith, life, love and hope that you would never have understood without your girls. I would love to talk with you more. It's good to talk to a mom who is going through this right there with you. Just know that you are in no way alone! I also want to say you are doing the right thing finding another doctor. They obviously do not have hope and they don't see what a miracle Hope is. :) I couldn't imagine losing out on this precious time I have with Hailey. It's amazing how active they are isn't it? She always puts a smile on my face, and there is never a bad day!
ReplyDeletePlease feel free to email me. It would be nice to get together and talk about our girls! :)
You, your husband, and Hope are in my prayers! God Bless!!
Rachelle Glavin
Hailey's Mommy
rachelleglavin@yahoo.com
haileyshope.blogspot.com
Wow, does this bring back memories. They found out something was 'wrong' when I was about 20 or so weeks. Logan's head was bigger then his body. They sent me for a level 2 ultrasound and first said he was missing part of his skull and then sent me for a fetal MRI. I had a team of drs then including a neurosurgeon, high risk OB and more that I can't even remember at this point tell me that Logan had Alboar HPE and would be a vegetable. That was the worst day in my entire life. Every appointment I went to was so hard, Logan's head kept getting bigger till one point it was no longer measureable on the ultrasound, it was bigger then a 40 week baby and I believe he was 32-33 weeks, but his body was also bigger as well. They told me about 25 weeks I would have to have a csection, it would be the only chance of Logan surviving and the only way safe for me because of his head size. I honestly didn't know if I should even have a babyshower, I was so depressed because all I would get was bad news. But I prayed everynight, I had people pray for me at their churchs during the services, I put it in gods hands! We went in at 37 weeks for our weekly ultrasound and Logan had from what they thought reached 11 and 1/2lbs and said they were doing a ultrasound 2 days later. I had a dr actually look me in the face and tell me not to be agressive when he was born towards resuscitation because Logan would have no quality of life. He knew a set of twins who died from this, etc. I was so scared, I was shaking during his delivery, they had told me he probably wouldn't cry, eat, nothing! The whole time they kept saying "They'd know more when Logan was born" and they kept pushing a amino because they said it would tell them more when he was born and if we should try to save him. I looked the dr straight in the face and said "I don't care how he comes out, I want you to save him! I'm not doing a amino, period!" Logan was born on 8-13-08 10 lbs 4oz, SCREAMING his head off! He did have a larger head, 45cm and a normal babies is 30-35cms, they did a MRI 3 days later, placed a shunt 4 days later. Logan has serve hydrocephalus and his brain was compressed up against his skull. They said once the brain decompressed they'd know more and the neurosurg actually just told me last week he FEELS he has Semi-Lobar and at the less end (sending his scans to carter center). Logan is a happy baby, he smiles, eats on his own, laughs, can hold his head up while I'm holding him, kicks his legs like a mad man, coos and babbles and just learned saturday how to role from back to front! The drs have told me Logan has beaten the odds and feels he has a good shot at having a normal life because I fought for him and he fights for himself! He's 8 moonths old, and the only issues he's having right now is he can't hold his head off the ground while on his tummy very long and very far up (keeps getting higher each day) and he will hold toys and bat at them but won't grab. You have to have faith! The drs have to tell you the worst but fight for your baby! Put it in the good lords hands, if you ever have any questions or want to talk email me, JLJ984@yahoo.com. Hun, I've been there, you have a long road just keep your head up.
ReplyDeleteI agree with Logan's mom: keep fighting for Hope, and, as Hailey's mom says, enjoy her for however long the Lord lets you have her. Hold her here while you can, and if the good Lord sees fit to take her on to Heaven, remember that Chloe is there, and that, because of Jesus, you can see your beautiful girls again and hold them forever. I love you, my beautiful girl. Mom
ReplyDeleteI just want to share my story with you.
ReplyDeleteI'm the mom of 2 medically challenged sons. From about week 16 of both pregnancies I had to fight for what I felt was the "best" prenatal care for myself and my unborn sons. Before either of my sons were born I let it be know to my OB-GYN and the staff of the NICU exactly what I wanted as far as care to be given to me and my sons. We wanted the Dr's to use whatever medical intervention necessary that may be needed to save my sons.
With my son Timmy I lost all of my amniotic fluid at 19 weeks pregnant. This led to my placenta not working properly and thus putting stress on Timmy. My Dr.'s gave us less than a 1% chance of Timmy surviving. I was able to carry Timmy to 30 weeks. I chose to deliver both of my sons via C-section, so that their tiny bodies wouldn't have to endure the stress of a natural delivery. Timmy was born weighing only 1lb 6oz. He had such severe contractures that they couldn't even get a length on him. Timmy was placed on a ventilator, where he stayed for 31/2 months. I wasn't discovered until he was 3 months old that Timmy's nasal passages were completely blocked. So at almost 4 months old Timmy got a trach.
Our son Josiah was born when I was only 24 weeks pregnant. He spent 24 hours on a ventilator. He was then placed on CPAP for a little over a week. Josiah passed away at 1 month old due to a ruptured bowel. For the remaining weeks of his life he was on nasal cannula requiring only minimal oxygen.
Both of my sons had brain malformations similar to that of Holoprosencephaly. If you were to look at their MRI, each son's brain in some areas looked like alobar, in other areas the brain looked like that of semi-lobar. Both of my sons are blind, are hearing impaired, have insulin dependant diabetes. Timmy also has Down Syndrome, Dandy walker variant and a mic-key button. Both boys medical issues are due to a mutation of the PAX6 gene.
Timmy is able to roll over, sit unsupported, hold toys and play with them, has a vocabulary of approximately 13 words, can stand with minimal assistance, can walk with the aid of a special walker and can recognize favorite songs, stories and the voices of family and friends.
What am I getting at? Our kids are amazing. The brain is an amazing organ and is able to rewire itself.
I met a mom while my son Josiah was in the NICU who was told that her little girl didn't have a brain. The little girl had an extrmem case of hydrocephaly. Once the fluid was drained from the little girls brain, her parents pushed for a follow up MRI. This MRI showed a very compressed brain! I have since lost toouch, but when I last saw the mom and little girl, the baby was drinking from a bottle, breathing on her own and screaming up a storm
You have the right to choose only comfort care for your little girl and let her go peacefully into the arms of Jesus or you can fight for her survival to no end. If you choose the Dr. possibly could put your baby on a ventilator until she was able to get a trach so that she can breathe on her own. There is also the possibility of having a G-tube placed until she is able to possibly have surgery to repair her cleft lip/palate.
If you would like to talk feel free to email me. mermaid7@bellsouth.net
I'm here to offer you my support in this long, emotional and stressful journey.
Donna
Hey, I heard the song "Climb Every Mountain" this morning, thought of you and all the moms out there who are journeying with you, and prayed for all of you for strength for the journey. We are all on a journey. When we are weak, God is strong. His strength is available, His grace is sufficient, and He's only a prayer away. Love you! Mom
ReplyDeleteRuth,
ReplyDeleteI think you blog is beautiful! I just sat here and cried reading through your comments and those of the others who posted. You, Scott & Hope are in our prayers...please keep believing that God can do what doctors can't!
Ruth,
ReplyDeleteIt is Lindsey (the photographer) I just read this update, and these comments from the other ladies. You are such a strong woman, and mother. Your ability to be strong and do what you feel is right instead of what the doctors tell you is so awesome. I will continue to pray for baby Hope, and that God will continue to work in the lives of you and your husband. Best Wishes
May God bless you for all of your perseverance through everything that has been going on with your pregnancies. I wish you the best of luck and I too will be praying for you and little Hope. By the way, your pictures are beautiful. Again, the best of luck to you and your family. You will be in my prayers.
ReplyDeleteI just read your May 4th blog and cried. I love you so much and wish I could take away your fear and pain. I can't, but God can, and I know He is with us and will see us through. I'm so proud of you for making the most of your time with Hope, and for reaching out to others who are going through a tough time too. Through it all, may we remember that Hope is in good hands with Jesus.
ReplyDeleteRuth, what a great memorial! I'm one of those people that doesn't really know what to say. But I do understand what you mean about enjoying being able to talk about your babies. That is exactly how I felt about my sister and it does help heal the heart! I love you and your family and I'm still praying for you! Btw, what a great thought that Jesus gave them a better home than you could. Still praying! Renita
ReplyDeleteHi, I was wondering how your little girl Hope is doing? My baby was just diagnosed with alobar holoprosencephaly at 12 weeks as well and I'm desperately searching for better prognosis than what we were given.
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