Hydrocephalus

Poppy is absolutely loving her new heart!! Just 24 hours after being extubated (taking the breathing tube out), she has been off of breathing support!!! Hallelujah!! I can see my baby’s face again!! She continues to tolerate her feeds as well. She is now up to 4ml/hr. She is doing awesome at her post transplant recovery!! Praise Jesus!! Also, Poppy is 3 months old today!! Happy 3 month my beautiful darling girl!!! You have been through so much already- you are the bravest one I know. Love you soo much!!! 🙂

When they extubated her on Thursday, the attending Dr. Musa noticed her head looked bigger, prompting a cranial ultrasound. We found out Thursday night around midnight that Poppy has Hydrocephalus http://www.ninds.nih.gov/disorders/hydrocephalus/detail_hydrocephalus.htm
Most likely due to her previous brain bleeds she had while on bypass and ECMO. Probably the improvement in profusion to her brain (thanks to her new heart doing such a good job) could be the reason for such sudden increase of fluid and pressure. She got a CT scan yesterday morning, proving to us she will need a VP shunt very soon….like early next week, probably Tuesday. This shunt will allow the fluid to drain from her brain ventricles (V) through her body to her pericardium (P) an area around her tummy. Today she will get a spinal tap to relieve some pressure temporarily and provide a fluid sample to check viscosity and other things in preparation for her shunt. Infection risk with the shunt is of great concern for Poppy because of her immune suppression to prevent rejection of her new heart, so it will be a balancing act between treating her brain and heart. Honestly, this has caught us so off guard and has been a source of anxiety and worry the past 36 hours, which would probably explain the delay in update. We are still trying to let it all sink in. Trying desperately to let God take it on.

The relief in all of this, and blessing, as weird as that sounds, is that had they decided to do a more thorough neuro exam during transplant evaluation and found this, she more than likely would not have gotten her heart….she would probably not have been a candidate for transplant. Tough to think about…but God is good… all of the time and this is quite the reminder.

Neurosurgery is a new thing we don’t know a whole lot about, but the good news is that Poppy is finally well enough to tackle this-to even be stable enough to get a head CT is a milestone, and without her new heart, it wouldn’t have been possible. Health wise, she is in the best place to deal with this than she ever has been, so praise The Lord for that.

God’s timing is always perfect.We have to keep trusting God and constantly reminding ourselves that He has this-it is obvious through His great provision of everything we need. Please pray for a successful spinal tap today, and for God’s peace and rest to take over. We soo appreciate your prayers.

This was my devotional yesterday…

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16 thoughts on “Hydrocephalus

  1. Grandma & Grandpa are still trusting in and beleiving on the mighty name of Jesus.
    Lord you are our God and it is in your Son Jesus that we trust. Lord bless Poppy.
    Amen

  2. God is orchestrating all of this…scary to go through…but each step of the way HE is in control and you are right to see His presence all along the journey. Will be praying for all the procedures, healing for Poppy, and God’s peace throughout. Love You All.

  3. We have been praying for your sweet little one since we came across your page. I am so sorry to hear about the new challenges she is facing. Our son has a shunt for hydrocephalus…while it can be very scary being something new, it is very manageable. We know her journey is different than ours with the added risks, but we pray that everything goes smoothly. I am sure the doctors are filling you in, but if you want to ask questions about the shunt and hydrocephalus parent to parent, please feel free to email. The hydrocephalus associations website had a wealth of information that is very user friendly as well. Keeping you all in prayer in the days ahead…

  4. Praying for God’s healing and strength through all of this. May Poppy have God’s healing hands over her through the days ahead. Hugs to this precious little girl and to her loving family as well. Peace be with you all!!

  5. When our Steve was in the hospital 42 years ago with his heart, there was a little girl that had the shunt put into her brain. I can only imagine the progress in technology that has been made since then. Our prayers continue.

  6. To make a long story short, hydrocephalus is something we know a little about. Brandon still has his shunt that was put in place when he was ten. We found out about his tumor , partly because of hydrocephalus. God has this! Your devotional for today is perfect. I know you have seen and still see the mystery of the way things happen and the uncanny timing in which everything comes together. This only shows that you can smile and cry tears of joy because God has you and Poppy!!! You guys are amazingly strong and faithful. Stay positive and faithful 🙂

  7. You have this and you are doing fabulous! I agree with Janae Bliss she is right about the shunt even though Brach didn’t have one himself. We know enough about them to bc of other’s close to us in the TBI family that do or bc of other events on their lives.But have done well one thing about them is the young they are the better they seem to do. So that is a plus!! Prayers continue and God does have this and hang there you’ve done well Dahl’s!! {{HUGS}}

  8. I am praying for you Poppy and your parents. God has his hands on your life and it is amazing. You are winning souls for Jesus, sweet one!

  9. Poppy you are the strongest little one I have ever known. I know God has a perfect plan for you Poppy. His path is set before you all of your days, and I feel in my heart they are so much more bigger than we could ever imagine. Praying for you sweetie all the time and for mommy, daddy and your beautiful brother Crosby. Lots of love and hugs your way.

  10. Congratulations on such a successful extubation. That is amazing. after so long being intubated, I was nervous that she would struggle. Yay, for her new heart!

    So sorry about her head. That sounds scary.

  11. Poppy is so beautiful!! Praise God for His perfect timing! I am very excited for her new heart-what a Blessing! And excited for each step towards her recovery! God has this! Poppy is such a little gem! We are praying and thinking about you.

  12. Daily prayers for your recovery, Poppy. God loves you and he will take care of you. May He bring peace to your mom and dad, and may they have faith that he has everything taken care of for you.

  13. You are all in our thoughts and prayers daily as you go throught these roller coater ups and downs. Stay strong and focused and know we are all praying for you!!!!!!

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