open letters

Dear CD,
I never met you. The first day i met most of your family was at your funeral over 5 years ago. I’ve learned a lot about you since then but recently I learned how much you wanted to be a mom. Your mom and your aunt have both talked to me about how you mourned motherhood once you knew you were going to die and giving up this dream was one of the hardest parts letting go for you.
i wanted to let you know how much i love the idea of you being in Heaven with Maddie. I love thinking about you holding her. nuzzling her neck. telling her about fairies and teaching her to draw. do all of things i would have done with her, but doing them in the perfect setting of eternity. probably hanging out with JRR tolken and CS lewis. teaching her how to use her wings and walk on clouds.
luke and i talk a lot about how hard it is to leave our baby with a sitter, even if that sitter is Jesus. In a weird way, i feel better knowing that Jesus can hand her over to you and you can give each other your undivided attention. One day your mom will be there with you. And some other day, I’ll be there. And on other days, the rest of the family will show up and you’ll have to share her. You’ll have to free your arms so you can return our hugs. But until then, please keep her close, hug her tight and love her constantly. and if you figure out how, please let the rest of us know that you are both doing ok and heaven really is all its cracked up to be.


To my girlfriends,
Thank you. as i started to write this, i tried to name you all. the list was too long. I remember reading about your second pregnancy and how you went through a period of mourning for your eldest baby, knowing that their entire would was about to change forever. so i knew that was normal and an ok way to feel. i watched you manage 2, 3 or even 4 kids and had faith i could do it, even with a sick baby. you knew what i needed even when i didn’t and had the right words to comfort and support us even as you recognized that no words could fill this void. you didn’t ask what we needed, but just showed up or mailed the most thoughtful keepsake.

you remembered dillan when i didn’t and sent him cool presents, took him on playdates and continue to give me breaks when i’m just not able to be a good mommy to him. you saw how perfect and precious Maddie was, even with the tubes and swelling and bandages. you knew she may not make it, but you opened your hearts and fell in love with her anyway.

you kissed your daughters goodnight and cried on their foreheads - not because i may never get to kiss my daughter goodnight - you know i’ll probably have one someday, but because that daughter isn’t maddie and that sucks.

you donated blood and held my hand while i got a a tattoo, even though both make you pass out. you lent me clothes and offered to work out with me or eat buckets of ice cream during my pregnancy and you are doing it again now.

you told me about how your son wants to call Maddie on the phone and hear all about heaven, melting my heart at how a 7 year old can express one of the deepest desires of my heart so perfectly. you remembered to ask about Luke and didn’t assume that he was ok just because he wasn’t falling apart.

you let me love your children, hold them, pour over their pictures and progress, knowing that i was wishing it was maddie the whole time. you let me do it, even though it feels a little creepy sometimes.

you talked to me about how you grieved for your lost child(ren). how your heart still breaks even though its been 1 year or 28 years. you understand that there is no end to this grieving process and that long after everyone else is able to look at me and not instantly be reminded about what we’ve lost, i’ll still spend days huddled in bed sobbing over her baby blankets.

you think about us and let me know. you say her name, even though we both start to cry. you call me to distract me with real things, like the idiot in front of you who has apparently never used an automatic car wash.

you let me cuss. freely and loudly. you take long walks with me in the freezing mist. you don’t notice that my hair hasn’t been washed, i haven’t worn make-up for days, i have a huge muffin top, hairy legs and i really need to go spend some quality time with my electrolysis.

thank you for it all. thank you for holding me up and falling down with me. for saying her name and asking me the details of her life as well as her death. for letting me talk about her again and again. for continuing to read my ramblings and pray for us.

I wish I didn’t know

I wish i didn’t know everything I learned about CDH. i wish i had never heard of it. i wish i didn’t know the best places to park, sleep and eat at UCSF. i wish we never had to go there. i wish i didn’t yearn the for the sounds and smells of the NICU. i wish you were still there. i wish i didn’t know that you never had your nails cut, although you were getting close. i wish i didn’t know that you never slept a night in my arms. i wish i didn’t know all of the times we never got to spend together, all of the things we never got to do together, all of the love we never got to pour out onto you. i wish i didn’t know how to take your temperature just right, suction your mouth or pad your sensitive skin against all of the tubes and wires. i wish i didn’t know how to hold you without dislodging a chest tube or accidentally extubating you.

i wish i had stayed and held you that night, all night. i wish i didn’t know that nothing special happens when someone dies in your arms - the air doesn’t change, the lights don’t flicker, the world doesn’t stop spinning. i wish i didn’t know exactly how much an infant coffin weighs, both empty and full. i wish i didn’t know how it feels to go crazy for a while. i wish i didn’t know how amazing our family can be and how much they all love you. i wish i didnt know how completely hurtful and mean some people can be because your death scares them so badly. i wish i didn’t know what it sounds like when your daddy sobs, your brother says he misses you and the house doesn’t fill with your cries.

i wish i didn’t know which books to read, what words to write, which tears to cry. i wish i didn’t know that i have to try to heal, move on, be happy because none of that is possible without you. i wish i didn’t know what it feels like to lose your faith and hope every day that it comes back but knowing it won’t because a loving and just God wouldn’t have let you suffer like that only to die. I wish I didn’t know all of the things i’ve learned since we found out you were sick. Since you died. Since you aren’t coming back. i wish i didn’t know this heartbreak. but i am so very grateful to have carried you and made you and kissed you and held you and loved you.

Foot Tattoo

Forever in my heart, in my thoughts and now, walking with me.

Starting to see Maddie’s impact

Today we received a brief call from Maddie’s neonatologist. This is a woman I will forever love and respect. She fights so hard for every baby under her care, but she fought especially hard to keep Maddie alive.

She called to let us know that the circumstances surrounding Maddie’s death are under review. They are going to see if procedures to validate the use of PICCs lines in neonates are still valid – making sure that the PICCs lines are in the right place and able to effectively deliver the fluids to the right place. They are also going to review the equipment itself and see if new advances in medical equipment may prevent this from happening again. It will take several months for us to hear the results, but I’m really hopeful that their proactive approach will prevent another family from losing their baby.

Maddie should have lived. She was getting stronger and was making progress. They did everything right, but the PICC line still failed. If it hadn’t, today I would be telling you about holding her. Bathing her. Maybe feeding her. Maybe talking about bringing her home soon. She would be 7 weeks old today. But none of that will ever happen. If they can make sure another baby doesn’t die the same way, that will be something to help us take comfort in our loss.

Wish List for Bereaved Parents

i saw the “Wish List for Bereaved Parents” in some of the CHERUBS literature and modified some of it with my own words.

1. I wish Maddie hadn't died. I wish I had her back. If there is a way to get her back in my arms, I’ll find it. I don’t really believe she’s gone.
2. I wish you wouldn't be afraid to say “Maddie”. She lived and was very important to me. I need to hear that she was important to you as well.
3. If I cry and get emotional when you talk about Maddie, I wish you knew that it isn't because you have hurt me. I never stop thinking about her, you didn’t remind me she’s gone. Her death is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.
5. Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you more than ever, even if I’m harder then ever to deal with.
6. I need diversions, so I do want to hear about you; but I also want you to hear about me. I might be said and I might cry, but I wish you would let me talk about Maddie and Dillan and the weather and anything else.
7. I know that you think of and pray for me often. I also know that my child's death pains you, too. I wish you would let me know things through a phone call, a card or a note, or a real big hug. I’m so grateful for each and every time someone has reached out to us.
8. I wish you wouldn't expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of Maddie until the day I die.
9. I am working very hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss Maddie, and I will always grieve that she is dead.
10. I wish you wouldn't expect me "not to think about it" or to "be happy". Neither will happen for a very long time.
11. I don't want to have a "pity party," but I do wish you would let me grieve. I must hurt before I can heal. Sometimes that means I’ll say things I don’t mean or are irrational. Thank you for letting me say them anyway and not taking it personally.
12. I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you.
13. When I say, "I'm doing okay," I wish you could understand that I don't feel okay and that I struggle each minute to get through the day. And I hate that my life is just “trying to get through”
14. I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, hopelessness and overwhelming sadness are all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.  Expressing myself, even if you did something to bring out my worst emotions, isn't meant to be an attack on you.
15. Your advice to "take one day at a time" is excellent. I wish you could understand that I'm doing good to handle it at an hour at a time.
16. I wish you understood that grief changes people. When Maddie died, a big part of me died with her. I am not the same person I was before she died, and I will never be that person again.
17. I wish very much that you could understand - understand my loss and my grief, my silence and my tears, my void and my pain. But I pray daily that you will never understand.

A jumble of thoughts

Luke, Dillan, Dakota and I are home again. We took a brief trip into the Sequioas to spend time together as a family. Dillan absolutely loved it. He got to play with us both nonstop, helped make campfires, went fishing, rode in a kayak, hiked around, ate a ton of junk food...you get the idea. Physically, it did wonders for Luke and I - we both slept a lot and all of the physical activities did a lot to relieve some of the stress.

Coming home was really difficult. Not only did our house feel really big and sad and empty, but its almost as it the grieving we should have done over the last few days just kind of stored itself up and came out harder and faster once we went to visit Maddie at the cemetery. My heartbreak feels new again, the sadness is unbearable and I am, once again, at a complete loss at how to function.

I spent a lot of time thinking about this blog - I want to continue writing it. All along, I’ve written it in hopes of helping other CDH families, while at the same time keeping our friends and family informed. And I really want to people to read it and see the beauty in Maddie’s short life, eventually see the hope that will spring from her story and support us as we figure out how to walk through this horrible tragedy. And I’ve reread most of my old posts and think i’ve accomplished all of that. So going forward, I’m going to attempt to stay true to those goals. Too much crazy or anger or heartbreak and Maddie’s story will get lost in my turmoil.

But right now I want to share some of the crazy and the anger.

First the crazy. I know everything I’m feeling right now is “normal”. I’ve been reading the books and talking to the counselors and understand, at least intellectually, the grief process. My mind absolutely cannot accept that Maddie is dead. It is a deep rooted denial - totally uncontrollable. I feel her weight in my arms. I feel her kick, roll and punch in my stomach. I wake up feeling as if I’m in labor. I fight the urge to go to UCSF to visit her. Every time my phone rings and I don’t recognize the number, I expect to be told that they’ve made a mistake and Maddie is waiting for me at the hospital. Or I expect it to be one of our nurses telling me that she needs me and I need to get there as fast as I can. I feel her presence. I hear her voice. I ache for her constantly. There is more, but the reality of her gone-ness is in direct violation of my mind’s belief that somehow, I’ll get her back and shes not really gone.

And the anger. Oh my God the anger. Thankfully most of it is directed at others, which i’m told is much healthier then being directed totally at myself. Toward myself, I’m mad at my body. HOw dare it still want to produce milk? How dare it wake it to pump every night at 2 or 3 am? How dare it still be shrinking and bear all of the marks of a recent pregnancy? How dare my c-section scar itch with healing? How dare my purple nail polish, painted the day Maddie was born, outlast her little life?

I’m mad that when Maddie’s really started to fail that Sunday, all of the medical personnel stopped speaking to us clearly and wouldn’t just come out and tell us exactly what was going on. That they waited so long to tell us how bad the TPN leak really was and that she may have caught phenomena from it and that the reason they couldn’t help her breathe or pee or draw back on her central line or reduce the swelling was because she was dying. I’m mad that I was unable to process how bad things really were until she was already gone. I’m mad I didn’t see it coming and didn’t spend every moment of her sweet life right by her bedside.

I”m mad at you. That I tried for months to find someone to help me explore the possibility of her death and instead, you reassured me. You encouraged me. You helped me look on the bright side and remember how optimistic the doctors were. And every time I worried about her dying, I felt like a bad mom. A bad Christian. Like I didn’t love her enough. And I was totally alone with my fears because you were so quick to stop me from expressing them. stop sugar coating everything with some happy positive twist when you do call or write.

I’m mad that you think I need space. Not once since Maddie died have I thought “oh, i’m so glad so and so gave me some space”. But almost everyone I have wanted to support me, hasn’t called or emailed or stopped by to give us some space. I have never felt so isolated in my entire life and you choose now to give me space? I’m not worried about being rude - if i need space, i’ll tell you. But right now, you’re not calling to give me space. Then you won’t call because you won’t know what to say. Then you won’t call because its been too long. And finally, you won’t call because there is nothing left to say. I don’t need space. When you call, we’ll likely talk about nothing at all or we’ll talk about Maddie. I probably won’t hear anything you say and won’t make any sense when i respond.

No one can speed up our grieving or dull the ache or reduce the pain. No one can bring Maddie back and put her into my arms. Just listen. Just be there.

disclaimer: many of you have been wonderfully supportive. thank you. and a big thank you from dillan for all of his new toys and books.

Memories of Madelyn book

I put this together for my family. Feel free to order one for yourself. Before you order, read the inscription on the inside page and let me know if you decide to order a copy for yourself.

Untitled by Memories of Madelyn | Make Your Own Book

A friend's reflection

My best friend from high school sent this to a group of HS friends who have been very supportive of the last months.  I think it is worth sharing for those of you who couldn't be at her funeral.
-----------------------------
I drove up late Thursday night and pulled into town around 2am. 

Lisa, Luke and their adorable little boy Dillon were up by 8am and I got to spend a lot of time talking with the family.  They were surrounded by friends and family for the entire day and I know it helped them all.  Lisa, being such a social soul, was happy to have friends around to talk to.  Her brother, sister, parents, in-laws, new-born nephew, friends from church and myself were all present to keep her spirits up.

For those of you who haven't had the privilege of meeting Luke, he is great guy who seems to prefer private walks on the beach to clear his head and gather his thoughts.  It was amazing to see them both cope with this horrible loss in their own way, while also being so supportive of each other.

The service was possibly the saddest event I have attended in my life.  Pink carnations and pictures of beautiful little Maddie surrounded the tiny casket.  The service lasted about 30 minutes.

Lisa spoke for about 15 minutes about the short life of her daughter Maddie.  Although she was in immeasurable pain, she did make several references to the emotional and spiritual support her and Luke had received from their family and friends, and from God. 

Lisa, being the practical gal she always has been, is already reading a book on the difficulties of losing a child.  To Lisa, the most important part of moving forward is not forgetting the past.  "It would be easy", she said, "to compartmentalize these last few months, forget the pain and act as though this never happen." She asked us to never stop mentioning Maddie and to never feel uncomfortable about talking openly about the short time her daughter had on this earth.

I like to think I'm a pretty tough guy... but I was brought to tears on several occasions during the service.  When Rusty, Lisa's brother, read a poem and played The Beatles 'Let it Be', I couldn't stop sobbing.

After the service, we moved to Lisa & Luke's long time Church where the evening was spent with family and friends.  As much as it possibly could be, it was an uplifting environment where dinner was served by Church Volunteers.

As I said goodbye to Lisa and Luke and headed home, it was obvious to me that the healing process had already begun.  Lisa, Luke and Dillon are surrounded by an amazing network of friends and family who are going to help them get through these difficult times.  I also know their close relationship with god is helping them through this difficult time.

Thank you again for helping to support the Spence family.

To Write Their Names in the Sand

To Write Their Names in the Sand

A precious gift

To Write Their Names in the Sand

Service Arrangements

Service Arrangements

Friday, August 12
Family and Close Friends only

Graveside Service @ 2:30PM
Mission Memorial Park
1915 Ord Grove Avenue
Seaside, CA 93955

Family Dinner @ 4PM
Monterey Church - 3rd Floor 
417 Alvardo St
Monterey, CA


Please dress nicely, but casually.  Please find childcare for any small children.

Family and Close Friends only. 

Sitting Shiva

So I don't actually know too much about Shiva. And i definitely don't mean any disrespect to any of our Jewish friends.  From what I know, Shiva is a Jewish tradition in which the immediate family of the deceased stay home for 7 days and mourn.  There are rules with it, many of them in fact.  But friends and family come and sit and mourn with the family.  Conversation isn't allowed except as initiated by the immediate family.  The family isn't allowed to cook and can only eat hot meals provided by the community. At the of the 7 days, the family gets dressed up and take a walk around the block to symbolize its time to get on with real life.  Jesus was Jewish and, as any religious scholar will tell you, Christianity is a form of Judaism.

So we are having our own version of Shiva.  Our 7 days started yesterday.  Local friends are welcome to just come and be here with us.  We are doing a lot of sitting and crying and playing with Dillan.  Our church is providing meals well past the end of our Shiva.  Next Monday, we will make a focused effort to figure out how to go on.

Explaining what happened

I'm not exactly sure how to explain the last 4 days but i want to try and let you know how and why Maddie went so quickly.

I want to start by saying that Luke and I are so thankful for God's mercy.  We have no regrets, no guilt and no "what ifs" that are consuming us.  We did everything we could to love Maddie and give her every chance possible to survive.  The staff at UCSF were amazing and we know they did everything they could too.  Our nurses, doctors and respiratory therapist were all so professional and competent and compassionate.  Our primary nurses became our family.  This was not anyone's fault or mistake or bad choice or anything like that.  As you'll read below, Maddie's fatal condition came out of left field and could not have been predicted or prevented.

The other day I wrote about going backward and talked about her TPN leaking into her chest.  This started as early as 9PM Friday night and didn't stop until 6AM Saturday morning.  A leak in the PICC line is rare and usually happens in Premies.  when it happens, Premies react a very specific way.  but because Maddie was term and twice the size of most Premies, she didn't present with any of the usual things.  We were use to seeing fluid in her chest because of the Chyle, her blood sugars never dropped and her swelling was slow to be visible. 

But TPN is caustic to the organs - it has to be delivered to the body a very specific way to not do damage.  The hours it was pooling in her chest cavity caused her organs to become irritated, probably inflamed.  We first started to see this when she started having trouble breathing.  NExt she stopped peeing.

As we progressed throughout the day on Saturday, we all thought she would pull through.  She had some major setbacks and was very sick, but improving.  She was still strong, still fighting and still responding to corrective treatments.  Throughout Saturday night, she was more or less stable, still responding and still fighting.

Unfortunately, by Sunday around lunch time, she stopped responding to treatments.  It got harder to keep her processing air the right way.  We brought Dillan in to say good bye, just in case, and sent him home with some amazing friends.

By dinner time, she had been so deprived of oxygen that she would never fully recover and, if she survived, have many long term damages.  We asked the doctors to do what they could but we were accepting of what we were seeing happen.  Maddie had stopped fighting.  She had stopped responding to treatment.  She was letting us know it was time.

We prayed for guidance and I very clearly heard God tell me that she was already with Him.  She was safe and we just needed to let her body go.  We had a private room with my family.  Everything was very beautiful and very calm.  Maddie was loved and held and at peace when she left us.  It was 9:31PM when I looked at the clock once i knew she was gone. 

We haven't made any arrangements yet but will post them here when we know.  We think we will keep everything small with immediate family and close friends only.  Please feel free to say goodbye to her in your own way.  I will post further remembrances and thoughts as I need to - this blog has been therapeutic for me from the very beginning.

Those of you expecting CDH babies or have them in the NICU, now is the time to check out.  This is not a process I want you to ever know.  We love you all and appreciate all of your support.

Donations for Maddie

Donations for Maddie

Luke and I are back at home. In lieu of flowers for Maddie, please consider making a donation to one of the following charities. These organizations were very special to us over the last month.

UCSF Benioff Children's Hospital
http://www.ucsfbenioffchildrens.org/about/how_to_donate/

Ronald McDonald House of San Francisco
http://www.ronaldhouse-sf.org/

CHERUBS - CDH Support Organization
http://www.cdhdonations.org/

If you would like to contribute to help with Maddie's burial expenses, then please contact Monterey Church. They have a fund going for us.
http://monterey-church.com/

Madelyn Erin Spence.  Born July 5, 2011, Died August 7, 2011.  There are no words.

URGENT Prayer Request

URGENT Prayer Request: Baby Maddie is in critical condition. The next 24 hours are critical, and they don't know if she is going to make it that long. Please pray and spread the word to pray for baby Maddie. She needs it!!

Going backwards

Maddie has had a really rough 12+ hours, i'm not even sure where to begin.

Yesterday morning they saw a small blood clot starting to form on her central line.  At the time, it wasn't a big deal and they started her on some blood thinners to help resolve it.  A few hours later, she was extubated to CPAP.

While she struggled all day to control her blood gases, she did ok on the CPAP until about 7 PM.  After that, she fought harder and harder to breath (i'll spare the details but it was the scariest night yet for me and thats saying a lot considering all we've been through). They saw an air pocket in her lungs and turned her chest tube onto suction (usually gravity does teh work b/c there are risks with suction). INcreased her oxygen and I worked diligently to keep her binky in her mouth, trying to improve her pressures and seal. NOthing seemed to work and she rapidly fell apart. Around midnight, they finally made the call to intubate again (about 2 hours after i started asking for it).  She settled for a while, mostly from exhaustion.  She is on full ventilator support with really out of control blood gases.  She needed a lot of hand ventilation to keep even close to stable.

Around 6 AM, they saw that her PICC line had come lose and was dumping her "food" (Total Parental Nutrition TPN) directly into her chest cavity, causing more pressure to build up and make it even harder to breath.  They removed the PICC line and rerouted her TPN through her central line.  They also started (continued?  i'm not sure at this point) her diuretic to try and draw the fluid out.

At some point, her blood pressure started to get really low, so now they are talking about restarting the dopamine.  This is three new medications, with 2 access points with a clot in our of them.  They likely will try to put in a new IV or artery line today, always a huge challenge with Maddie because her little veins are so stressed out.

This morning's xray showed that her right chest tube has moved out of place.  They will either reposition it or replace it at some point today.  we don't yet know if this will be easy or complex.

ok, i think thats it for now.  we basically feel as if we are now where we were three weeks ago and she is once again, fighting to survive the next little while until at least one thing gets resolved.

its hard not to feel really defeated right now and have a huge pity party for myself and for luke.  we are surrounded by really sick babies who are here for weeks and months, but they only have one of Maddie's issues. Right now, it feels like we will never get out of here and she'll never be strong enough to come home.

Let them eat (pink) cake!

Woke up to a great email from an amazing lady.  Maddie's 1 month birthday started extra early this morning when Christina and her 4 kids baked a ton of Pink cupcakes and brought them in to her husband's o-room to share with his company.  They even shared with their CPRC cadet from USMA.  They live in Korea, so this is truly an international celebration already.

Dillan and I plan on getting dressed and going to a local bakery to pick up some pink cupcakes later this morning. 

It's your turn - go out and eat some pink cake.  Share with a stranger and raise awareness for Maddie and CDH.


In addition to turning 1 month old, Maddie will either be extubated or start receiving food today.  These are two huge milestones that we have to conquer before we can even start going home.  Both come with a lot of risk, including complications with her existing Chylothorax (chest fluid) condition. 

Dillan is settling in great at the Ronald McDonald house.  Luke spends the mornings with Maddie while I play with Dillan then we switch off during nap time.  Dillan loves the play room here and that we get to take a bus, train or shuttle everywhere we go. 

Special Hello to one of our new blog followers - Sue!  Sue is Maddie's favorite nurse and has been an amazing support and resource for all of us.  She's a huge reason Maddie is doing as well as she is and the only reason we've been able to hold her despite all of the tubes and wires.

Ok - stop playing online and go eat some pink cake!

Maddie had a good day yesterday. She looked great and tolerated all the activity in a hectic room very well. The plan over the next few days is to move her to less pressure on her ventilator and extubate her on Friday. They weaned the pressure on her ventilator to the lowest it has ever been, and she seems to be tolerating it pretty well. She has been a bit cranky this morning, but it seems like normal newborn fits, and we've been able to calm her down by patting her butt and rubbing her head (as opposed to giving her a sedative). We're looking forward to the day when we can swaddle her up and rock her to sleep. We also might start feeding her on Friday. These would be big steps, so please pray that she's ready!

New chest tube and other bits of commotion

Maddie had a pretty rough 24 hours after they took the chest tube out.  today we spent most of the day watching her struggle to breath, unable to rest, destating into her 40s, turning purple, then blue and then gray before being resuscitated back to struggling to breath.  she wasnt ready to have just one chest tube and proved it.

around dinner time, they ruled out all other possibilities and decided to reinsert the chest tube. but because she has weird anatomy on the left, including a newly repaired diaphragm, it took a whole surgical team to put it back in.  she got 'pig tails', a slightly smaller, more flexible and more comfortable chest tube.  she immediately dumped out 80 ccs of fluid from the left, confirming that the tube was very much needed.  she is now resting and we will shift focus back to weaning on the ventilator and preparing her for her first meal (hopefully thurs or friday).

our bible study is fasting tomorrow.  i dont really understand fasting, but i know that God says 'some things' require prayer and fasting and that Maddie's health falls into the category of 'some things'.  please pray, hold up those that are fasting and, if you feel called, join them.

today was a very scary reminder that she is still sick and fragile and only alive by the grace of God through modern medicine.

4 weeks old today!

Miss Maddie is 4 weeks old today!  I'm completely unable to wrap my mind around everything that has happened in the last 4 weeks but feel so grateful we've made it this far.

Yesterday Maddie got her left chest tube out.  This is her major change for the next few days - they are watching her closely to make sure the fluids dont reaccumulate.  If they do and start to cuase her trouble breathing again, she'll get a new chest tube.  If her fluid drops or drains out of the right side at a good pace, we'll start trying to feed her later in the week and continue to wean her toward extubation. 

Dillan is living with us full time at the Ronald McDonald house.  We are adjusting and so happy to have him with us.  Last night we got to hold Maddie again and then I came back and slept with Dillan in my arms - the first time i've been able to hold both of my babies in the same day. 

Sporting her leg warmers.  So darn cute

Our first full look at her angry repair incision.  Its healing great

Cuddles with Daddy