Wednesday, August 17, 2011

From Presbyterian to UNM

Good morning, friends. 

It is Day 3 now, Wednesday, but all the days are blurring together in our minds.
We are running on very little sleep, but we were able to get in four hours interspersed last night and just now woke up.  Hopefully this will be coherent.

So much has changed since I wrote yesterday, and I am sorry I was never able to update last night.  Everything that happened after I wrote that last update is something of a blur.  I will try to remember it as it occurred.

We received the results of the MRI not too long after we published the last post.  The neonatologist came up to our room along with the pediatric neurologist.  They sat down to explain and quickly showed us the images from the MRI.  Like the images in May on the ultrasound of his heart, it was immediately obvious to us that the results were not good.  A large portion of the right side of his brain was covered in blood...along with two or three other portions of his brain.  We were told then that he has had multiple strokes and was now facing possible neurosurgery.  The heart surgery would have to wait.  And we were waiting now too...waiting for the hospital's neurosurgeon to tell us what to do next.

This all seems like an eternity ago.

So, we went down again to be with he was now done with the MRI and was completing an EEG.  We got to be with him for a little while, but we were soon informed that Dr. Houston, the neonatologist, wanted to see us.  In her office, we learned that the neurosurgeon had said that he would not perform the surgery.  The additional problems (heart defect and Trisomy 21) along with the fact that he was a baby scared him too much.  So, our only option at that point was to transfer him to another local hospital at the University of New Mexico.  While Pres is known for its expertise in cardiology, UNM is better at neurology.  They had a pediatric neurologist. We knew pretty quickly what we desired to do.  We just had to hear back from UNM that they would receive him.

When we got a reply from the UNM neurologist, the question he had for us was this:  "How much do you really want to put your baby through?"  We were being presented with two options:  Transfer him to the NICU at UNM where they would evaluate him and then determine whether they would go through with surgery or keep him at Pres and "make him as comfortable as we can."  So, we were deciding whether to give him a chance at life or not.

Even as I write this, I am crying.  I can't put into words how hard it was to even come to the conclusion that this is what they were asking.  I didn't sleep at all Sunday night due to laboring.  Monday night was really short, much of it spent with Jude.  And the drugs aren't helping either.  I am so glad that Brandon is here to walk through this with me.  He has been wonderful.

So, we decided we wanted to give our baby every chance at life.  We decided then to transfer him to UNM, unsure if they would even be willing to do the surgery.  We stayed in the NICU with him until the transport team came to get him.  I couldn't leave because I wasn't yet discharged and was still in a lot of pain.  Brandon was going to stay with me for a little while and then go over there.  Instead, a doctor with the UNM team suggested he ride over with them she said he was looking pretty bad and might not survive. 

So, Brandon went with him, and I was left at Pres.  It was incredibly difficult to be separated like that.  Soon after, good friends came to be with me and were so helpful.  They helped me prepare as we were able to accomplish a rushed discharge.  So, after a long process, I was able to get out of Pres and be driven over to UNM to be with my baby and my husband. 

We are here now...and there is so much more to tell about it.  But, we were just informed that they are doing rounds at Jude's bedside right now.  We're going to head over there.  I will write back more about the rest of last night as soon as I can.  Thanks again so much for all your prayers and love and care.  We love you guys! 


Cait and Eric said...

I have been "stalking" your blog for a few months now. I keep reading because I am amazed by your strength and courage. I cannot imagine what you are going through. You and your entire family are in our prayers.

Joshua 1:9 - "Remember that I have commanded you to be determined and confident! Do not be afraid or discouraged, for I, the Lord your God, am with you wherever you go."

Natalie said...

Praying for peace, wisdom and healing. xo

Phoebe said...

Crying and praying for you, dear ones.

Jen said...

You and Brandon are not walking alone.... God is right there with you and maybe even holding both of you. I love you and I wish there was some way I could ease your pain. Love Aunt Jenny

Angie Cousins said...

Mandy- My heart is breaking for you as I write this with tears streaming down my face. I know only a little of the pain you are going through and oh my I wouldn't wish it on anyone- and yet God is good- He will see you and Jude through this time. I couldn't fall asleep last night as I was thinking of you and praying for you all- and my prayer then as it is now is that God's glory would be revealed through your sweet little babe's life. We love you guys and we are praying.

Bill said...

We pray God washes over you all with his grace and peace as you give your precious baby a chance at life! We're praying for you here in Lincoln.

edward said...

We love you and weep with you,

"I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being,so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love,may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ,and to know this love that surpasses knowledge--that you may be filled to the measure of all the fullness of God." Eph 3:16-19

"Now may the God of peace who brought again from the dead our Lord Jesus, the great shepherd of the sheep, by the blood of the eternal covenant,equip you with everything good that you may do his will, working in us that which is pleasing in his sight, through Jesus Christ, to whom be glory forever and ever. Amen." Heb 13:20-21

Did I say we love you and continue to pray for you all.

Diana Maldonado Tiscareno said...

Amiga no puedo expresar lo que siento en estos momentos, siento tanto que esten pasando por todo esto. Hemos estado entrando a este espacio donde nos compartes el estado de el pequenio Jude y solo me queda decir que te admiro y TE QUIERO aun mas que antes, tu fortaleza me deja gran ensenianza... te agradezco por esta amistad has sido un angel en mi vida, le pido al senior los acompanie siempre, los tome bajo su brazo y les llene de su amor infinito!
Todo mi amor para ustedes queridos amigos.

Sarah said...

Thinking of you constantly. Praying for peace, clarity, knowledge, rest, energy, wisdom, etc. I know where you are. As you know, I have traveled a similar road. I would have made the same decision about giving your little man a chance. We had the same options. I think back to when Bowen was born. Things were a whirlwind!! All that we had to learn and things were changing so quickly. If you need me I am here to chat. 419-509-8331. xo
Sarah Hammitt

Suzanne said...

I'm sitting at my desk at working with tears in my eyes reading. Covering you all in prayers - for wisdom, comfort and physical healing.

matt & sarah said...

Praying, praying, praying for all four of you.

Kellie said...

Evelyn and I have spent the morning weeping and praying with you. God is in control. This is His plan. There is no Plan B; this has always been His intention. He knows how you feel, and He is holding your hearts.

kktennessee said...

Lifting you and sweet baby Jude up in prayers. As I was singing to my little boy last night, Jesus loves me..they are weak but he is strong. Love you all!! Karen

Jen Kane said...

Brandon & Mandy (&Caleb, too),
Tears streamed down my face as I read your post. I remember having my babies whisked away to the NICU and the difficult roller coaster of the following two weeks, but never decisions like you are facing. However, we learned in that time and we know to be true that God is ALWAYS faithful, loving, and sovereign. Might you be comforted and held in His arms of love and might you and all the doctors be given His wisdom! Praying for all four of you and your families! Might God be glorified as you continue to cling to and trust Him!
Love and prayers - Jen, Brian, Sarah, and Evan

Laini said...

You all are, and have been, in our prayers to our Good God. It is a blessing to see a picture of sweet little Jude. Thank you for sharing with such openness and honesty.

Heather Braum said...

Mandy and Brandon, I saw the prayer request for Jude and your family on Twitter through an extended family member. Praying that Jesus' arms are around you all right now and that He will heal Jude. May the doctors, nurses, and your family and friends have wisdom in his care and upholding you both in the minutes, days, weeks, and months ahead. You are not alone, as many posters have said here.

brookeriffel335 said...

I am a fried of Hope and Barry's in Ottawa and I just heard about Jude and found your blog. I am praying for you and your family, especially your sweet baby boy. I am praying for strength and healing for you and Jude and may you find some peace in the many thoughts and prayers for your family.

Teresa Brown said...

I don't think we've yet to meet, but we are on staff with Cru. My husband, Michael, and Brandon are good friends.
So sorry for all you are going through! I cannot even imagine how helpless, exhausted, confused and worried you must be!
Praying that God would give you strength, discernment and His peace!
~Teresa Brown

rich menninger said...

Romans 8.38-39

ren said...

My son was in the Pres NICU for three months- we know all the specialists well and how hard it is when your baby's suffering. I'm praying for you all and the doctors too as they care for Jude. May His Word and presence fill you with peace and love. -Renee (I was on the 1st Vail Summer Project with Brandon).

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