Saturday, July 23, 2016

Bunny update

Blogging from my phone at the hospital so this will be brief.
Madison's heart surgery went well, but she had some complications that I'm asking prayer for. 
I'm starting to type through tears here, combined with lack of good sleep and a headache from you know where ... so I hope this makes sense and doesn't appear to be complaining . I know so many families have gone through so much more than we have. 

First - here are a few happy pics of our Bunny from surgery day (Tuesday).


Just out of surgery - the nurses didn't even know we call her Bunny and look what they placed beside her :)




Madison's surgery involved repair of a PDA - her surgeon said it was huge, which makes us so thankful it was repaired sooner rather than later. This was not a hole that would have closed on its own. 

The incision she had was through her back and under her shoulder. While not as complicated as open heart surgery, the doctors have explained that the recovery is more painful because of the muscle that was cut and where it is: any time she breathes or moves, that incision is painful. Combined with this, she has a chest tube coming out from under her arm to drain off excess fluid. 


This fluid is supposed to be clear. Instead it is milky white, which means she has developed a complication called chylothorax. Basically her thoracic duct was damaged during surgery - not because of any error, but simply because this is how that tissue paper thin duct can react when it is exposed. The fats that go through this duct (chyle) are leaking out and that's what we are seeing in this bulb. This is called chylothorax. Sounds like a character in a Dr.Seuss book to me, but unfortunately it's not so innocent. 

Sometimes the thoracic duct can heal itself by placing babies on a low fat diet. Since Madison receives my breast milk in a bottle, the way to do this is by skimming my milk. This is a simple process that requires my milk to sit in the refrigerator for 24 hours while it separates into layers. We use a syringe to pull the low fat milk from the bottom of the bottle and then we mix it with a special low fat liquid formula that has any added nutrients she needs. 

The problem is a) Madison has been in a lot of pain despite four kinds of pain medicines and is having trouble wanting to eat . And b) the formula that is mixed into my milk tastes awful. A dietician got us some Starbucks vanilla (go figure!) to mix in to mask the flavor, and for a few bottles this helped. 

Yesterday, after a long day trying to get her pain under control, and trying unsuccessfully to get her to drink, she became dehydrated. So much to say but in a nutshell, it was an awful day. I can't tell you how much it broke my heart to see my baby pale and hurting and writhing in pain. 


Her little arm is mottled and bruised from the arterial line and blood draws...
lots of nurses and doctors have come in to look at it and make sure she isn't developing any clots. 


After an eternally long day .. lots more to say but I'm keeping it simple for time sake.. Madison had a feeding tube put in and started receiving my skimmed milk and the formula that way. She had iv fluids through the night as well, and this morning she is looking a little bit more like her after-surgery self. She's definitely still in pain and not her "normal" self, but a marked improvement from yesterday. THANK GOD.

I have to say that through all of this heartache we have felt the tangible presence of God and His grace - we feel people praying for us and we know that's what is holding us up. 

So here's where we are at today : the low fat diet does not appear to be reversing the thoracic duct damage at this point. Right now Madison has orders for sedation and a central line to be put in, and her doctors are putting her on NPO for seven days. This means she cannot have any oral feedings and will receive all of her nutrition through that central
line. This is not pleasant for babies we are told - even though she is receiving nutrition she will think she needs   
to eat. The reasoning for the NPO is so we can bypass that thoracic duct with her feeds and give it a chance to heal itself. If at the end of seven days she is still leaking milky fluid, she will need surgery to repair the duct. 

Obviously we hope this doesn't end up in another surgery. All of our children at home (two hours away) are really missing us, and we them. 

Your prayers are so greatly appreciated during this difficult time. Please pray for the thoracic duct to heal on its own so we can avoid surgery. Please pray as well for our Bunny to be out of pain and make it through a week of no oral feeds. Please pray for our children at home... we are all missing each other so much. Sam and I could use prayer as well.. I feel funny asking for it when Madison is the one hurting, but we really do need God's help. 

I will try to update here as I have time. Thank you from the bottom of my heart for all your love and prayers for our girl .

Posting a happy picture of Madison and waving to ourselves in the future ...


Much love, Patti 

33 comments:

Anne B. said...

Thank you Heavenly Father for Madison's timely and successful heart surgery. We know that her current issues have not taken you by surprise and we don't understand why she has to suffer through this but we do know that you continue to hold her in your grasp...with both love and mercy. Heal her Lord, as we place our trust in you. Let the duct heal without surgery. Let it heal faster than any one of her doctors or nurses could imagine. Take her pain away and let her rest comfortably. You ASTOUNDED us before with your grace in her healing just after her birth. We ask that you would do it again and we will give you all of the glory! Draw Patti and Sam even closer to you and be present to them in a powerful way as they walk this dessert place. Protect the hearts and minds of the little Rices at home. Bring sweet sweet peace to this entire family as they lean into your love. All of this I ask in the precious name of Jesus. Amen and Amen!

Babsi said...

Praying right now and will bring it tomorrow with our church to our healing father.
Babsi

Jaime Peña Álvarez said...

Praying ;)

Kristina said...

Praying for you.

Kristina said...
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Tracey Lopez said...

Sending prayers...

LMJ said...

My heart aches for you all. Praying 1) that God grants you and Sam 'peace in the storm', 2) that baby Bunny begins to heal, 3) for your children at home...this can be such a tough time for them.

mom of three said...

Thank you God, for a successful surgery for Bunny. Thank you for a nurse who cares enough to put vanilla in Bunny's milk! You never miss a detail. Please help this precious family with the details Patti has identified and with those we cannot even begin to know about. Please grant everyone involved adequate rest and faith to move mountains! Thank You Lord, for the recognized and unrecognized miracles You are working as this medical team and this family fight to give Madison Faith a better quality of life. Thank you for pain relief for Bunny and emotional pain relief for her family. Thank you for giving Sam and Patti the strength and love to endure another day. Love to all from Gretchen in Woodburn.

MamaV said...

Praying for rapid healing for sweet Bunny!

BB said...

More prayers for all, especially baby Bunny.

Bethany Eicher said...

Praying for you all! May you feel the comfort of His Everlasting Arms.

Jerilee Preston said...

Thinking of you and praying for strength and peace for you and your family during this difficult time. Especially praying that your sweet girl will be well and on her way home where she belongs soon. Our daughter Ahneela had open heart surgery when she was 5 months old. Reading your posts take me back to those days....the surgery went well, then there were complications. A cardiac unit in a children's hospital is not an easy place to live, especially when your other children are hours away. For us the experience is almost 3 years behind us, and yet it has changed my perspective forever. I am grateful every day for Ahneela's health. Any day you are not in the hospital with your baby is a good one. Praying that this experience will soon be behind you, and that your family will be reunited.

jf said...

http://emersonroseheartfoundation.org/2011/09/centrifuge-donation-in-emerson-roses-memory-to-fight-chylothorax/

Kristy Sayer @ Southern In Law said...

I have tears in my eyes reading this post and writing this comment to you.

I am so so thankful that Madison's surgery went well and I am praying that her recovery is fast and as pain free as possible for your sweet little bunny. I am praying for all of you as I know how much you must be hurting seeing her this way and I pray that you remember that God is SO much greater than we can even imagine and to him, this is a walk in the park.

It's times like these that remind us just how great God's promise is - of a new world with no pain, no suffering, no tears - and that's what we wait for, trusting in the now that he walks right along with us.

Taking things one step at a time is incredibly hard as you want to everything to be fixed right away, however, we just have to remember that we're not taking those steps alone.

<3

zabiegana said...

I Have been following your wonderful family for a while now but never commented. I want You to know that far across the ocean in Poland I am praying for Bunny and all of You! And I showed Bunny to my husband yesterday and asked him to keep her in his thoughts as well! Gogosiak

nicole said...

Oh Patti, praying for little Bunny and all of you. May the Divine Physician heal her quickly.

cara said...

Oh Patti! I am in tears. I am so sorry. My heart breaks with you as I see precious Bunny in these pictures. I love you all and am praying and praying! I wish I was closer to just help your family in any physical way I could. But I will continually pray. I know you must be exhausted too. Lifting everyone up now. I love the picture at the end excited to see sweet Bunny back to her self soon. Much love to all of you. xoxoxo

cara said...

Amen.

Mandy Cannon said...

Prayers going up for your sweet bunny! I can't imagine what you are going through, watching your little girl in pain like that. Here's to a quick recovery!

Buffy Barley said...

I am sending prayers for your family. For Madison's angels to surround her. For her caregivers to be working at their highest level of consciousness and to follow what God asks of them. I send prayers that Madison's room be free of negative energy and only filled with energy that is peaceful and loving and healing. I ask God that your children know that this too shall pass and you will be reunited as a healthy family again soon.

My daughter Bendel has Down Syndrome and these were the prayers that I asked of others as she had her open heart surgery last year. Sending much love and light your way- Buffy

Buffy Barley said...
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Jennifer said...

I'm so sorry about the complications! Of course you need prayers just as much as your sweet bunny. Praying for healing and peace for you all.

MyMy said...

Dear Patti, http://swallowmysunshine.com/category/chylothorax/page/2/ This is a page written by a mother whose daughter had a surgery which involved insicion on the back, and damage to the chyl.tract. To sum it up, the diet must be supposed to be NO FAT instead of LOW FAT. I am not sure if it works for such little babies , and for the breasfed baby, but I think I must tell you. Tthe liquid is supposed to be clear...it can be clear only if fat is excluded completely, otherwise even the smallest amount which Madison gets with skim milk, will leak..maybe there is some other procedure for skimming your breastmilk to reduce the fat completely?

Patti said...

The low fat diet over a few days did not work, so she is now receiving her nutrition via a central IV ... So no fat. Thank you for commenting ! Xoxo

MyMy said...

Thank you for the update, I am sorry I was worried about that fat stuff which you had already fixed, but the whole situation is so touching and raw that I just worry and think what could be the reasons for this and that... Sending you hugs from Russia.

Faith Kopp said...

All my precious babies are hurting Lord. Please place your loving hands on all of them and help them to remain strong. I ask this in Jesus' name. Amen

Bethany Williams said...

My family and I are continually praying! Much love xoxo

Vicki Foley said...

Thinking of you all and sending love. Hope your cutie is soon feeling well

Heidi D said...

Following updates on instagram & keeping you all in my prayers

Raelyn said...

Patti....
You may feel funny requesting prayer for yourselves, when Madison is the one hurting, but.... Trust me.... Your entire big family could use some extra prayers right about now.... Especially you and Sam. Because your thoughts, your emotions, your feelings, your worries, your fears, your stress, your lack of sleep, your faith in our loving, always providing, Heavenly Father is very, very, very real, Friend!! Trust me, I know.... I understand what you are going through.... Even though I am not a Mama, even though I don't have a precious baby lying in my arms while suffering through dreaded post-surgery complications. I get it, anyway.... Because.... Thirty-two and a half years after I was born with multiple Life-threatening birth defects which required operations, neither Mom or Dad have forgotten these experiences. And the same goes for Michael, my now-adult brother with Down syndrome who underwent open heart surgery as a tiny, thin, failure-to-thrive baby.... Hugs!! Prayers.... For everyone!! ;)
Send us some updates, please!! ;)
"Stay hard, stay hungry, stay alive", Raelyn
PS. Sorry, long comment. I so cannot do Twitter!! Ha!! ;-D

Cindy said...

It's been a few days since your post and I'm hoping and praying the duct is healing on it's own. I'm praying for complete healing and for the peace of the Lord to fill that hospital room and your hearts. You are not alone in this.

MamaV said...

I'm still praying for Bunny!!

mumofsix said...

That little darling. Thinking of you all xxx