There are things we don't want to happen, but have to accept. Things we don't want to know, but have to learn. And people we can't live without but have to let go.

Happy 6 month birthday little man!

First I want to apologize for not writing sooner. I started this blog to tell Dougie’s incredible story and after he passed away I guess you could say I lost my inspiration to write. But not only that, this entire blog has been written with a positive attitude. Even when things were looking really bad I kept positive, I think mostly for my own sanity and in a way I thought my positive energy would rub off on our son. If I felt scared he would feel scared so instead I kept a smile on my face and I hope he felt that. And because of my ‘keep positive’ attitude I have been adamant about writing. I find myself not being so positive anymore, and didn’t want that to ruin this blog. But I am here to write about Doug’s journey and ours as well. It wouldn’t be fare to other mothers in my situation who may come across this story to not know the truth. So I am writing now to let you all know how things have been since Dougie’s passing.

I am not going to lie, it sucks. It sucks but we’re getting through it. It seems as though everyone has moved on with their lives; as they should. But Brad and I are stuck in this sort of limbo, where the good days are OK... and the bad day’s well... let’s just say they are really bad. When we first got Dougie’s diagnosis and heard 50/50 chance of survival all I kept thinking was I cannot survive if my baby doesn’t survive, automatically my mind went to that negative place and then quickly snapped myself out of it because “something like that could NEVER happen to me”. Well something like that has happened to me, and yet here I am. To be honest some day’s I don’t get out of bed, I just try to sleep until that day is over. Other day’s I don’t want to talk to or see anyone I prefer to be by myself and alone with my scattered thoughts while I sit in what would have been his nursery. And there are those few days I wake up in a good mood, and actually accomplish things. It is just so hard to live in a world where Douglas Brookins Collins isn’t.

Each milestone that would be, is gut wrenching. I imagine what he would be doing today on his 6 month birthday maybe we would have taken him to the park or the beach. I think about what I would have dressed him in on the 4th of July, or how he would be dressed on Halloween (we had decided on superman while he was in the hospital). I wonder how he would like splashing in the pool at his grandparents, and I think about all the things we are missing out on as a family. Every night I say to him “Today would have been great, if you were here”.

I do have some good news to share with you... Douglas is going to be a big angel brother! Brad and I are expecting. I think I was afraid when we found out, that people may judge us getting pregnant so soon after losing our first son. But for those few weeks we had our little man I got a glimpse of motherhood, and I believe I was made for this. So I wait for the day our new baby will grace us, and it feels great to have something to look forward to again. This pregnancy has been quite a bit different than before. I am very cautious, and refuse to get ahead of myself this time. We of all people know, life is not guaranteed. So I am holding my breath until I have baby in my arms and at our home.

Since Douglas has passed, several more babies have been diagnosed and lost their fight with CDH and we are no closer to finding the cause. If you have a facebook account I ask that you please vote EVERY day for our cherubs http://www.vivint.com/givesbackproject/charity/3 it takes only 30 seconds and will make a change if we win. Please share Dougies story in any way you can, and spread awareness the more people that know about CDH the closer we will get to finding the cause and maybe one day be able to prevent it.



God bless our little man,
Mere

HAPPY 2 MONTH BIRTHDAY TO HEAVENS MOST PRECIOUS ANGEL

My heart is filled with anguish for all the things we didn't get to do... never getting to hear his laugh or cry, never being able to lay in bed with him and Brad, morning walks by the lake, celebrating Doug's 1st birthday, 1st word or 1st step, laying him down in the crib I painted in the room that is filled with his clothes, toys, pictures and books. But, I am also filled with gratitude, for the handful of times I was able to change his diaper, having story time each night, watching Brad and Dougie listen to music, when he opened his eyes and stared into mine and the dozens of times his little hand wrapped around my finger and squeezed. I suppose I will spend the rest of my life trying to balance out the heartbreak of losing him, but also treasuring the precious six and a half weeks we had with him. And I know I will spend the rest of my life missing him, his sweet eyes that saw right into
your soul when he glanced at you, the calm and peaceful look to him after he had a massage from mommy or while he listened to music with daddy, and his smell.... his perfect scent that was so wonderful it's impossible to describe. I pray I will never forget.
 
Brad and I are constantly being commended for our strength, everyone tells us how they would never be able to go through what we've been through and survive, and people ask how we are able to function, because if it were them, they wouldn't be able to. And to be honest, I don't know how we are functioning; most days feel like a blur to me, we are keeping busy enough to get through each day then on to the next; Because - what choice to we have? If we don't have the strength, we have to find the strength for our son.
Don't get me wrong, I could lay in bed all day let the tears get the best of me and have each day drag on and on. But what good would that do? It won't get me to see Dougie any sooner, it won't bring him back, it won't heal my heartache, and I have never been one to feel sorry for myself or whither in self pity - so I will take one day at a time. It is what it is and we have to accept it and get through it, for him. 
 
Brad and I would like to thank everyone who was able to make it to Dougie's Services, I cannot express how amazed we were with the amount of people who came to celebrate Doug's short and beautiful life. 250 chairs surrounded the room and yet there were still dozens of people standing. In the front and center of the room was Dougie's casket.... custom made for our little man. We couldn't have asked for a better pastor to speak for Douglas, Pastor Sam did a beautiful job and made everyone feel comfortable. Thank you to Jess for speaking, I know how hard it was for her and we appreciate her kind words and also putting together a play list for the ceremony. Thanks to my mom who, although loved the podium a little too much, kept it lighthearted and made everyone laugh their tears away. I am soo grateful that Dougie's favorite nurses Jamie, Charlene and Kristen were able to make it to the services and speak of their experience in the NICU with our
little man. Other than Brad and myself they knew him the best and loved him so so much. I think everyone in the room was blown away by Katelyn and Jake's performance of Dougie's favorite song 'Godspeed Little Man', it was one of the most beautiful things I'd ever heard and I am sure most people would agree with me. Kevin made a wonderful video montage with pics of Doug, and video we had from our days in the NICU, I will treasure that forever.
 
A million thank yous to Dougie's Grandpa's, Grandma's, Uncle's, and Aunt's for completely taking over and planning this beautiful day for us. Because of you Brad and I were able to relax, We appreciate it so so much.
 
Thanks to Santora's for hosting an amazing fundraiser for us. Brad and I are so grateful for everyone's generous donations, wonderful words of comfort, all of the beautiful flowers and gifts we've received. To those of you who have tried mailing things to our house I apologize if they were sent back to you, since Brad and I were not home for a few months the mailbox was full, so the post office sent all of our mail back to sender. Our address is still:

36 Calle Bella
Rancho Santa Margarita, CA 92688
 

God Bless Our Little Man,

Brad and Mere
 
 
 
 
ANNOUNCEMENT: A wonderful friend, Stephanie Bongartz, has organized a Silent Auction Fundraiser to help Mere & Brad as they adjust to the world outside CHOC NICU and a life without their son.  It will take place on Sunday, March 27 at 2PM at the Mission Viejo Elks Lodge.  This is also meant to be an afternoon of fun and a chance for Mere & Brad to share their memories of Dougie with the people they love and who have come to mean so much to them.  Everyone is welcome!
 
For more information, please contact:
stephanie@bongoink.com
meremom1@yahoo.com

An Angel in the book of life wrote down my baby's birth. And whispered as she closed the book "too beautiful for earth"

He fought an incredible fight, but our amazing and beautiful Dougie passed away on Thursday March 3rd around 11:00AM. At only 6 weeks and 3 days of being here on Earth we had to make the hardest decision in the world and give him up to God. I was able to hold my baby for the first time as he passed away in my arms. I will always remember the last breath he took right there in my arms and the feeling of emptiness in my heart thereafter. Brad and I sat and held him for hours as our family and friends came to say goodbye, then we were able to give him a bath and get him dressed. It was tragic knowing we will not be able to bring him home with us, to meet his Doggies, see his nursery that is filled with toys, clothes and books; but it was also relieving to know he is no longer in pain, no longer fighting to live, no more surgeries, no more drugs, just at peace. He is now able to be the happy baby he should have been.

I lay here in bed, on what would have been Dougie's 7th week birthday. The questions have started to slow down in my head, why him, why us, why now, why was he put through all he was put through only to be taken from us. I'm slowly coming to terms with the fact that we will never have those answers. But because I realize that, it in no way means I have accepted what has happened. I am still angry, heartbroken, and lost. It will be a long time before I'm able to accept what's happened. As you can read from all of my previous blog post's I did not expect that we were going to get the outcome that we did. But we did. So now I have to find the strength to move on.

Brad and I continue to be so touched and in awe of the support we have gotten from all our friends and family as well as complete strangers. We are beginning to realize what Dougie's purpose was. We know he has touched so many of you and brought faith and belief in what is bigger than us, and he brought awareness to CDH.

Services will be Held on Wednesday March 9th at 11:00AM at Saddleback Church (1 Saddleback Parkway, Lake Forest) in the Plaza building.

We ask any of you that have followed Dougie's Journey, and anyone that Dougie had touched to please feel free to join us in celebrating this amazing little man and his incredible life, although it was a mere 6 and a half weeks we have so very much to be thankful for.

God Bless Our Little Man, God Bless Our Beautiful Angel,
Mere and Brad

Faith consists of believing when it is beyond the power of reason to believe - Volitare

Dougie is really in need of prayer right now. Today has been one of the bad day's... His pulminary hyper tension (PPHN) is causing him to D SAT(which means his oxygen saturation levels are in the 60s when they should be in the high 90s)... they've had to severly sedate him almost all day to help him relax. Docs are doing everything they can, and exhausting every resource possible to help his PPHN. They are even begining a new medication that has only been used on 2 other babies in hopes that it will get his PPHN under control. Right now Brad and I are holding on to every shread of hope and faith that he will overcome this and get better. I have prayed all day today, begged the Lord to give him strength, give him our strength and help him pull through this and I have faith that he will. We have told Dougie all about his Doggies, Patsy and June, his beautiful nursery filled with toys he has yet to see and play with, all the football and baseball games we have to go to, and all of the hundreds of people that love him and are praying for him. Keeping positive is all I can do, he is in Gods hands and I believe.

God Bless our amazingly beautiful little man.

Mere and Brad

Happy 6 Weeks Baby

We started our morning off by getting a call from Nurse Mandy. Doug had an xray done and it showed there was an air build up in his chest, so they'd have to go in and put another chest tube to drain it out. Brad and I got over here just as they were finishing up with Dougies 7th surgery. The doctors don't seem to be too concerned about it since xrays showed it just just due do positioning. Other than that no major changes... we are excited to start Dougies feeds again tomorrow, he's been off for a couple of weeks due to a new med they tried to help with his access fluid, but they want to start his feeds again because nutritionally he is getting the bare minimum. I pray he takes to it well, and it helps move things in the right direction. That's all I have for now, just a little update and a big happy 6 week Birthday to the Dougster. Thank you all for spreading the word, love and prayers for Douglas.

God Bless Our Little Man,

Brad and Mere

Our Days

Having been here for 6 weeks now, Brad and I have developed a new sense of normal. Which, for all our friends and families isn't normal at all, but for us and the families surrounding us here at CHOC and The Ronald McDonald House it's all we now know.

We start our morning at Mc D's House, second floor room 5. Down to the kitchen for some coffee and a bite before were out the door to CHOC to see our little man. As we pass the hutch that is on our way out, our hearts break for the white rose that is sometimes there to recognize a family who has just lost their child. Sometimes we get caught up in our own misfortunes that we forget, we're all on the same boat, each family here is traveling a journey all their own, none more significant than the other.

Once were out the door and in the car, a quick 5 minute drive to CHOC (I am so thankful we are able to stay at Ronald McDonald house be this close to our son). Parked and on the shuttle, Brad and I start getting excited and nervous to see Dougie. Hop off the shuttle, and head for the front desk to check in. Most days the recpetionist greets us by name and gives us our badges before we have to ask. Up the elevators to the second floor, we arrive at room #202. You'd spot Dougies room from a mile away, he has planes, trains, and automobiles all clinged on his door.
Now our hearts start to race as we enter into our babies room, because we never know what we will find when walking into that room. A room packed with ventilators, oxygen tanks, monitors, tubes, meds and the most important thing in the room, our baby. Some days we find him bright eyed and bushy tailed, just wiggling around soaking up the sun while his nurse does her cares. Other days, the bad days, we walk in to find him crying with foam like cecretions so bad his lips have stuck together, eyes so swollen he cant even open them, and depending on his nurse that day, no one in sight.

But because of the rose we saw on our way out the door, and all the sick children we've seen while making our way to room 202, we are reminded of how truly blessed we are. Things could always be worse. But mainly we are reminded that, along with all the other families here, we are in all pain and we are all suffering and hurting for our children, because when your children hurt, you hurt.

The days slowly creep by here at CHOC... each day previous feels like a week ago. But we manage to pass the time taking pics of our little man, doing his daily massages, baby arobics listening to music to calm the Dougster, Hank Williams jr., and Dwight Yokam seem to do the trick every time. These past couple of weeks it has been pretty entertaining watching Brad play Aunt Terry and PaPa Tony in Scrabble on his phone. The comedy that comes from the melt downs or gloating after a win or a loss is priceless, so thank you both for keeping us entertained.

We've become very close to Dougies associate nurses, Charlene, Kristen, Mandy and Jamie. It is amazing the comfort I feel when they are taking care of our little man. Its never easy to leave our son, but when he is in their care we feel assured that he is in the best hands. Its so wonderful to see the love and compassion they have for Doug. Its the little things like when they take hold of his hand to comfort him when he is upset that fill my heart with joy. We are so incredibly thankful for them!

I wasnt having the best day yesterday. Doug has continued to put on weight, he is still swollen and there are still no answers as to why. Everyone tells us this is a long process, we'll be here for a while; and I am prepared for that, I have prepared for and accepted our long journey of peeks and valleys. Its the unknown that drives me nuts... its been a few weeks since this swelling started, granted some days its better, and somedays its worse. But still, almost a month has passed and we dont know why he hasnt lost this fluid. So I've been a little frustrated. Then Grampa Glenn and Grammy Steph came to visit (Steph got to change Dougies diaper!), then we went to dinner... I wasnt talking much, my patience was shot and I just wanted the day/weekend to be over so we can have our favorite nurses back. Once we got to dinner our waitress noticed the CHOC badge on Glenn, she asked if we were at a confrence there and Brad told her our baby boy is there. Then she looked at me and asked if I was Mere, I said yes and she said "I know your baby! I've heard his story and me and my family pray for him everyday, he will be fine I just know it" as she took my hand and reached across the table to give me a hug I just about lost it. Turns out she is the Aunt of my Brother in-law Ben and heard about Dougie through Ben's mom. I knew it was a sign from God, I was struggling and he sent her to assure me he hears our prayers (he should, he is getting a ton) and although nothing is changing at this moment I know he is working on it!

In the mean time, God Bless our Little Man, and God Bless everyone of you who is following Dougies Journey and praying that he get well soon. Words can not express how greatful we are for your prayers and support.

Love to all,

Mere and Brad

Team Dougie Donations

We've had several requests from people that would like to donate to our family. So GRAMPA GLENN came up with the great idea and created a paypal account for Dougie! If you would like to donate to Team Dougie money can be donated on this site via the "Donate" button, and will go directly to The Collins Family, to help offset the cost of medical bills, family expenses, and care for Dougie.

Thank you so much!

Happy 5 Weeks Mr. Man

We had a pretty ok week last week... Dougs swelling has started to decrease and he looks beautiful. Things were going well over the weekend. Brad said it best, he is getting better but we are cautiously optimistic are taking each win in stride and preparing for the next battle. His numbers aren't looking as good as they should today, so he will have to get higher doses of meds we've been trying to wean him off of, and back up on his amp settings that we've been trying to go down on, then stablize again before they're able to make any changes moving forward.

I saw my baby cry real tears yesterday... nothing is worse than hearing the cry of a helpless baby, except seeing the tears run from the eyes of a helpless baby who is crying soo loudly without making a peep. It tore my heart apart. I want so badly to hold him close, tell him "mama's here, everything will be ok" and rock him to sleep. One day.....


Gramma Laine (my mom) is working with a few people to put together fundraisers for our little man. More information is soon to come. But if you would like to help out or donate anything feel free to contact her, Linda Scott at meremom1@yahoo.com

Thank you all for your continued prayers and support...

God please bless our little man and heal him quickly,

Brad and Mere

Happy Valentines Day and Happy 4 Weeks Little Man

ok, so not this is not exactly how I pictured I would be spending my first valentines day as a wife and as a mother (sick in bed, while my husband is at the childrens hospital with our newborn son). But, it is what it is (our theme of the week). I'm thankful to have my incredible husband and amazingly beautiful and strong baby boy... As I lay here in bed I dream of the day we will get to take our little man home, and that image is what is keeping me sane. Knowing this will all be over (for the most part) and we will be able to start our lives as a family at last, helps me fall asleep at night and makes me excited to get up in the morning to start another day. Because each day that passes is another day we're closer to going home, however far in the future that may be.

Dougie Update:
Nothing to update really. Brad said he is having a good day today so, lord please give us more of them! I'll update again soon!

God Bless our sweet little man,

Mere

It's always darkest before dawn...

I don't have much of an update for you... we've had a pretty rough week. Doug is still pretty swollen, but it has started to even out through the rest of his body which may be a good thing. The swelling has gone down a little bit, though mostly due to a new drainage tube that's in his chest now, draining out excess fluid that should'nt be there. That is a total of 7 tubes/IV's going into our little man. 2 tubes in his mouth, one for the ventilator, one for suction. An IV in his chest and right hand. A drainage tube in his belly and one in his chest, and he had to have his catheter put back in. The doctors still don't know what is causing the swelling or excess fluid, but there are a good number of great doctors putting their heads together trying to figure it out. I am confident we will get an answer soon, but the waiting is almost unbearable. Dougie is back on a lot of meds, and also back on nitric oxide... seeing more tanks, meds, and tubes come back into his room was very overwhelming, but it's the best thing for him at this point. All I can do is pray they find the answers needed to make our little man better. But until then, this is just another hurdle little man is having to overcome.
 
It's hard to imagine what life would be like if we weren't in this situation and Dougie had never been diagnosed with CDH.  Would Brad and I be this close, would we appreciate life as much as we do now, would we be as thankful for every day? All I am sure about is this: God gave us the incredible privelege of being Dougie's parents, and because of that I am unbelievably grateful for every day I get to have with my little man; every minute with him is a precious gift & blessing.

With all that has happened this week I cannot imagine going through this without Brad, who may have to go back to work next week. We are a team and need each other now more than ever just to get from one day to the next and to be there for Douglas.
 
Please keep Dougie close in your hearts & prayers...

God bless our little man,

The Collins'

Two Steps Forward One Step Back...

 

In true Dougie fashion he insists on keeping us on our toes. Just when we think we are out of the wood works he pulls us back in. Dougie lasted a good 21 hours on the conventional vent, but around noon on Monday had to go back to the high frequency vent due to his numbers regressing, which I think, was his way of telling us he is still a very sick boy and too tired for all that change in such a short period of time. 

 

The passed two day's we've noticed Dougie's head and chest have gotten very swollen, this can be caused by numerous things the doctors told us. The first thought is blood clotting which is common with ECMO babies. So Dougie had many test done; an echo, a few X-rays, and a cat-scan to see if clotting is or isn't the reason Doug is swelling. All results came back showing no clots, which is, on one hand a good thing, because clotting can be very serious and may lead to bigger and more serious issues. But on the other hand; and this is where it gets the most frustrating, we don't know what is causing the swelling. Brad and I will be meeting with the head neonatologists and specialists that will need to be involved, we will then discuss what else can be causing our poor boy to swell up like this and what next steps will be taken.

 

Today has been one of the most frustrating days we've ever experienced. From Dougie's diagnosis of CDH at my 20 week ultrasound up until now, we have known all the issues at hand, what to expect, how to fix it, and what happens next. Right now, everything is a big fat question mark. We don't know what is causing the swelling, or how to fix it; all we know is the passed 3 days it has gotten worse, it's not due to clots, and every minute that passes is another minute our poor sick boy is not getting better. Dougs strength amazes me everyday, 3 weeks, 4 surgeries, and numerous obsticals later and he is still holding on strong. Seeing him gives me the strength I need to get through everyday. I love him more then I ever thought possible, and all the difficult times will make the day he comes home that much more magical. I pray tomorrow is a better day, and we find the cause and solution to his swelling as soon as possible.

 

Please keep Dougie in your thoughts and prayers.

 

 

In a perfect world,

everything would go right.

There would be no disappointments or trials,

and life would be filled with only

sweet, warm, and fuzzy feelings.

 

But how would we know

when things were good if we had no comparison?

Would we recoginze the blessings in our lives

without having their opposites to compare them to?

Without the darkness,

would we appreciate the light?

 

Seems to me if we have rainbows,

we gotta have rain.

The trick is to pull ourselves up by our bootstraps

and go out and look for puddles to play in;

recognize the tempest for what it is

and train ourselves to look for the good

in every situation.

 

By overcoming our adveristy,

we find the joy in everything.

So go on, play in the rain!

 

- Suzy Toronto

 

 

God Bless Our Little Man,

 

Brad and Mere

Super Weekend; Super Pooper, Super Bowl, Super Baby

Great Weekend! 

Soo much has happened over the weekend, I don't know what to tell you first!  I'll just start from the beginning:

Thursday, February 3^rd: Nurse Kristen called to let us know they were moving Dougie to another room.  A baby was being flown in who needed a room to himself that was big enough for his dialysis machine. So they moved Dougie to the big room with 6 other babies... Brad and I weren't exactly thrilled with this turn of events. Knowing Doug doesn't do well with a lot of noise, in addition to him being weaned off of his pain meds, any stimulation (ie: light, noise, touch) can upset him, which in turn effects his numbers  This may necessitate increasing his high frequency ventilator that we are also trying to wean him off of. But Kristen assured us that as soon as a private room was open, Dougie would get it.

Friday, February 4th:  When Brad & I arrived on Friday morning things were looking ok, but as the day progressed Dougie regressed. The crying babies, bright lights, beeping machines and not-so-quiet nurses really bothered little man and he let them know. They ended up having to bring up his vent higher than what it was the day before...

But, - on the brighter side of the day -  guess who got his first feeding?????  That's right - our little man started getting his mommy's milk, and boy, does he love it!  Even though it is from a feeding tube that is in his nose, you can completely see the satisfaction in his face when he has a full belly.

Saturday, February 5^th:  Brad & I arrived at the NICU around 9:00 AM, and weren't surprised to see his vent was higher again, so Brad let the doctors know Dougie needed to be moved to a quieter room ASAP - and move him they did!  Boy, did that do the trick:  all his numbers improved, and they were able to turn down the vent right away!  Nurse Jen introduced our boy to the pacifier, she wasn't sure how he would like it since he still has the tubes in his mouth; but he loved it.  It was so incredible to see him sucking on his paci while he stared up at me. In that moment the entire world stood still -and he and I were the only two people in it. I thank God for having that moment with my little boy. Later that day it got even better; I was able to change his diaper, poop and all!  I've never been soo excited for poopies and pee! 

Sunday February 6^th: What a day for our little man! He is now going full-blown potty in his diaper, they've taken out his catheter and increased his feeds from 3 CC's every 3 hours to 5!  As soon as we came in Sunday morning, Nurse Jen told us they would do a trial run, and take Dougie off the high frequency ventilator. If he did well they would put him on the conventional ventilator! She also said she would be clamping his chest tube closed today (his chest tube is inserted into his belly where his incision is draining out any excess fluid), and keep it clamped for 24 hours. If he did well with that they would be removing it tomorrow!  Right at kick off of the Super Bowl Dougie was taken off the high frequency vent and put on the conventional vent!  This is such a big step for him; it means he and his lungs are strong enough to pump themselves. The doctors let us know sometimes babies have to go back on the high frequency vent becuase they just get too tired, but to keep our fingers crossed that he doesn't have to!

I am bursting with pride right now. This weekend has been so incredible, soo many feats for our litte Dougie at only a mere 21 days old…

Monday, February 7th:  Happy 3-Week Birthday Little Man!  We are so thrilled with all the progress you've made, the challanges you've overcome, and the strength you've shown. You still have quite a few more obstacles ahead of you, but as long as you keep up the hard work we'll have you home before you know it.

Thank you seems like such a small phrase for the gratitude I want to show everyone that has kept the faith and prayed for our boy. It is unbelievable the outreach and support we've recieved from so many people all over the country. God works miracles and He is working His on our little man at this very moment.

God Bless Our Little Man,

The Collins Family

Last Week in a Nut Shell

Surgery Day: Tuesday 1/25/2011

Surgery went well! Little man gave no trouble, but Dr. Lam was suprised to find Douglas had no diaphragm at all - just a little lip of tissue, and he found very little of his left lung. Once he brought down all the bowels, liver and intestines, he was able to place a synthetic gauze patch to replace the absent diaphragm. Doctors said they would watch him closely - since he is still on ECMO, the risk of bleeding is very high, and since the hernia was so big, the pressure in his abdomen may need to be relieved, but all is good for now!

So after he was all cleaned up,we were able to see our sweet little boy! We gave love and kisses, told him how proud we are. It felt soo nice to have that hurdle out of the way... on to the next.

Day after surgery: Wednesday 1/26/2011

Brad and I made our morning phone call over to the NICU to check on Dougie, and nurse Jamie let us know Dr. Lam would be back in today (heart drops). As they had suspected, the pressure was too much for little man's tummy. The lower half of his body was blue and swollen, and Dr. Lam would need to go back in and re-open his incision to relieve the pressure and check for bleeding. He would put a suction tube in to drain any access fluid. Brad and I head to the hospital and arrived just as surgery ended, and Dougie looked much better from what the nurses told us. He got his color back and the swollen tummy started to go down already! The neonatologist told us this is a crucial time for Dougie now: he will need to come off ECMO as soon as possible. He told us this is a very fine line; determining if it's too soon to take Doug off, but also knowing if he doesn't come off now, it could be fatal. They decided to do a "trial down" - basically, they would shut the machine down and see how he does. Dougie lasted 23 minutes!

After talking to the doctor a little bit more, he told us that Douglas coming off ECMO would be an enormus battle. He said Dougie is the sickest baby they have had on ECMO there at CHOC, and maybe one of the sickest babies they've had in general.

That may scare most mothers, but suprisingly I took it in stride thinking, "He may be the sickest baby, but he is without a doubt the strongest and will be the most incredible success story!"  That evening, we gave our little man a big pep talk, and prayed for hours that this next hurdle of getting him off ECMO go smoothly.

Bye Bye ECMO: Thursday, 1/27/2011

-and smoothly it went. We could not have asked for a better result from Dougie when he was taken off ECMO. He did so well, and gave the doctors and nurses no trouble at all. Brad and I were so amazed by our boy, and soo thrilled to see that huge intimidating machine being taken out of Doug's room to maybe save another babies' life - and perhaps scare the hell out of another family.

Happy Birthday Mommy: Friday, 1/28/2011

I got to see my baby and my baby saw me! After being taken off ECMO, Dougie has had his sedatives reduced and is slowly being weaned off them, therefore making him more alert. He was able to look around and wiggle a little bit -  it just made my whole day! Everything I asked for my birthday I got. I asked Dougie to get off ECMO successfully and he did. I asked Dougie to pee out the fluids he'd been pumped with and he did. I asked Dougie to keep pumping his left lung up and he is! Proud doesn't even begin to describe how I feel. 

No News is Good News: 1/29-1/31/2011

Dougie is doing well, peeing regularly, so they were able to get rid of his diruretic. He is weighing in at 8lbs 5.6oz, and is stable! We are slowly weaning him off of the high frequency venitilator, he will then be put on a conventional ventilator. Things are slowly starting to disappear... some IVs are gone, some meds are gone, lower doses of pain and sedation meds. Brad and I could not be happier right now, last week was by far the most difficult, most agonizing time we've ever gone through. I hope we will never have to go through a week like that again. I pray it only gets better from here on out for our little man - he is so incredible. Only 14 days old and has already had surgery 4 times, every time he is challanged he has shown us all his strength and resilience.

God - please keep on blessing our amazing little man so that he can come home with us one day soon...

Happy 1 Week Birthday My Sunshine

Can you believe it, it's been 1 week since my little man made his debut! We're so proud of him, and we let him know just about every second were at his bedside. I've replayed the last week in my head, for the most part and am so unbelievably thankful we were chosen to be Dougie's parents. He has brought Brad and I so much closer, and he has brought so much to so many others lives as well. That is one amazingly talented boy and he is only 7 days old! I can't wait to see what the future brings for our new family. We love you baby boy more than can ever be expressed in words.

 

 Tomorrow

 

So, tomorrow is the big day; the day our little man will have his hernia repair surgery. I thank God we were given the chance to prepare ourselves for this day by finding out about Dougie's CDH ahead of time. We've been able to read about the condition, the surgery, meet our surgeon and get to know him a little bit better. I'm grateful we were not bombarded with this situation with out a clue as to how to deal with it. It's been a long time coming, and the day is finally here. I am at the same time sighing of relief, and holding my breathe out of anticipation. I've wanted to get this day over with since the moment we found out Dougie would need surgery, but now that that day is here I am scared out of my mind. All I can think is, my little Innocent baby boy is going to have the most critically important day of his life tomorrow and he is only 7 days old. I wish so badly I could take his place. But, he is in the hands of some of the most talented Doctors, surgeons, and nurses and of course I know without a doubt God is right there with him and will be holding his hand through surgery and recovery.

 

I pray God gives him the strength to undergo surgery without any problems. I pray God gives the surgeons, doctors, and nurses that will be there tomorrow steady hands and clear minds so that they may do an incredible job tomorrow. I pray that after surgery Dougie will have no other complications and will be stable enough to be taken off ECMO in a few days.

 

Dougie has soo many fans it's really incredible, he has people praying for him all over the country and the world. I can not thank you enough for supporting our little man and the continuous prayers. I know tonight and tomorrow the big man upstairs will be receiving an abundance of Prayers/fan mail for Dougie and I am soo very grateful. You know that song, "he's got the whole world in his hands"? It's really true, he's got MY WHOLE WORLD in his hands.

 

God Bless Douglas Brookins Collins,

 

Mere and Brad

Our Earth Angel

 

Douglas Brookins Collins was born on Monday January 17, 2011 at 11:11AM weighing in at 6lbs 11oz and 20 inches long. It's been an extraordinarily rough 4 days and I am not able to put into words our thoughts and emotions, but I will do my best and start from the begining.

 

I didn't sleep much through the night Sunday, I had been having contractions that just seemed to be getting stronger. So, first thing Monday morning, Dr. Anzaldo came in and we decided it would be best to deliver him then rather than wait until our scheduled date of January 20th (which would be today!) Brad and I got on the horn and called Dougie's grandparents to tell them the news. The next thing I knew we were being whisked away into surgery... It took about an hour to prep, and get Doug's 'team' of doctors and nurses ready. Once we were good to go, Brad was called into the OR and a few moments later our baby came into this world (Brad has it all on video if you want the gory details). I heard a little cry, and he was handed off to the CHOC team so they could do their thing and get him stable. There were so many bodies in the room, I wasn't able to see my little man before he and daddy went over to the NICU. So I am sure you can imagine how upsetting that was, but it just made me that much more determened to recover quickly and get down there to see him. Although I completely underestimated the pain I would be in.

 

Grandpa's, Grandma's and Aunties all got to go over to CHOC and meet Dougie. Brad did his best to keep me updated, come to check on me and bring me pictures while I was trying to recover, thank goodness. Just about every hour Brad would be walking to CHOC to check on baby, then walking back to St. Joe's to check on mommy, he kept me updated just about every hour - which was great - since I had hours to go, until I was able to be wheeled over to see my son. About 9:30PM an nurse came to our room and asked if we were parents of baby Collins. She said I needed to get down to the NICU right away and she was there to escort me.... If you can't imagine how unbelievably terrifiying hearing that sentance was, let me tell you, I will never forget it.. and I NEVER want to feel that way again. I couldn't jump out of my bed quicker and all but ripped the IV out of my arm. Brad ran down there right away,it took me a little longer to get over in the wheel chair. I think I held my breath the entire way, which usually takes 5 mins; but felt more like 5 hours, and I prayed the whole time. Once I arrived, I got to see my child for the first time.

 

Side note: When we found out about Douglas' diagnosis, I did everything in my power to prepare myself. I researched the defect, read all the blogs of other CDH babies, looked at all the pictures. I wanted to be fully prepared for whatever obstacle we were faced with, good or bad.

 

I was in no way prepared to see my baby for the first time as he was. I wanted more than anything to hold him, kiss him, and tell him everything was going to be just fine because his mommy was there. But I pulled myself together, told him how much I loved him and prayed like never before. Brad updated me on what was going on with Doug, he needed to be put on ECMO. Below you can find more information on ECMO in case you aren't familiar with the machine. We sat in the waiting room with Dougie's Grandparents and his Auntie Jess for the hour long surgery to be done. Once it was over we went back into Doug's room and said goodnight gave him loves then headed back to our room.

 

Tuesday January 18th: Dougie took to the ECMO very well, they were able to adjust his blood transfusion levels from 115 cc/kilogram to by the end of the day 95 cc/kilos and our goal is to have 0 cc/kilogram at the end' which means his own cardiovascular system is sustaining his oxygen levels instead of the ECMO machine. My dad was able to bless him, which was a beautiful moment, Dougies Papa, Mommy and Daddy all held hands and prayed around him.  

 

Wednesday January 19th:  His numbers started to decline for a few reasons so they had to readjust his ECMO, ventilators, and medications. Later that afternoon he was given a head ultrasound, and they found fluid in his crainium (which is a risk/side effect of ECMO). Having researched CDH, and the ECMO machine we've seen what can happen, but, everytime something new happens it feels as if we've been hit by a train all over again. One of Dougies' doctors best explained to us, that in the best case scenario every day will be a two-step forward/one-step back process. So we will be watching the fluid in his head very closely and praying that it doesn't increase.

 

Thursday January 20th: Dougie is 3 day's old today, and looks so beautiful. No major changes today, although, he did get another head ultrasound and they didn't find an increase in fluid. His blood transfusion levels were decreased from 100cc to 95. Doug had quite a few visitors today: his grandparents, Auntie Nick & Uncle Nate, and Uncle Ben also were able to spend some time with him. I was very glad my big brothers were able to meet and talk to my little man. 

 

Tonight is our last night in the hospital, and after 40 days here I am a little scared and sad to leave. I will miss seeing my wonderful nurses, being so well taken care of, and the free food. But most of all I hate the fact I will no longer be a wheelchair ride away from my boy.  The hospital gave us a celebration dinner tonight, filet mignon and sparkling cider... it was a little odd having a celebration dinner knowing the hardest part of our journey has just begun, but nice to have a semi-romantic dinner with my husband for the first time in months. We are heading down to see Dougie now, where we will read him a bedtime story and wish him goodnight. Then hopefully we will be able to get some rest before tomorrow when we move from St. Joesphs to Days Inn Hotel down the street. We want to keep Dougies visitors to a minimum for now, he needs as much rest as possible so his little body can prepare for surgery. Thank you all for your continued prayers and support, and please keep it coming. These have been the longest and scariest 4 days of my life, I pray Dougie gets the strength he needs to overcome these battles and come home soon.

 

God please bless our little man,

 

Mere and Brad  

 

About ECMO:

 

Over the past couple of days Brad has become really familiar with ECMO and the functionality of the equipment. Although he understands, and can explain how it supports our little boy, so many variables can affect Douglas' outcome. In blue below is the easiest read I could find online to fully explain his current support system. Basically what is it is an on going blood transfusion and the ECMO machines removes and add gases as needed. A tube comes out of his vein on the right side of Dougies neck which flows to a machine. The darker blood goes into a pump were it is moved to artificial lung where the blood has the waste (used up gases) removed and the proper amount of Oxygen is added to the blood. The blood is then reintroduced back into his large vein in his neck which flows in to his body.  

 

Before ECMO can begin, a pediatric surgeon places tubes, or cannulas, into large veins and/or arteries located on the right side of the neck or in the groin. Your child will be given medications to prevent pain and movement during the surgery. The surgery will happen in the Intensive Care Unit.
The number of tubes used depends on the type of ECMO your child needs. These vessels are called the internal jugular vein, the carotid artery, the femoral vein and the cephalad vein. Your child may have one special cannula placed into the internal jugular vein, depending on how big your child is. This cannula will do the job of the two cannulas.
The ECMO machine is made up of several parts: a pump, an artificial lung, a blood warmer and an arterial filter. The ECMO machine takes the blue blood (without oxygen) out of the right side of the heart and pumps it through the artificial lung (oxygenator). The blood is now red blood (with oxygen). This blood is warmed and filtered before returning to the child.
The ECMO machine does the work for your child’s lungs and/or heart and allows them time to heal. During the time your child is on ECMO, he is still connected to the ventilator. The ventilator is used to keep the lungs from collapsing while they get better.
At the beginning of the procedure, the ECMO machine does most of the work for the child’s heart and lungs. Even though your child looks much better, it is important to remember that the ECMO machine is doing the work the lungs can’t do.
To see if your child is getting better, a small amount of blood is drawn from the arterial line. This test (a blood gas) checks to see how much oxygen is present in the blood. As your child’s lungs begin to heal, the oxygen level in the blood improves. This allows us to turn down the ECMO machine slowly, to wean your child off ECMO. The machine is turned down until it is doing only a small portion of the work. At this time we may try to take your child off ECMO and measure the level of oxygen and carbon dioxide in the blood to see if the lungs are ready to work.
While your child is on ECMO he receives a medicine called heparin. Heparin keeps your child’s blood from clotting in the ECMO circuit. Heparin may cause your child to bleed while on ECMO. Special blood tests, (ACTs) are done every hour to check how fast the blood is clotting. When your child is taken off ECMO the heparin is stopped, and the time it takes your child’s blood to clot will return to normal in a few hours.
Babies are on ECMO for an average of five days. Older children and some infants may be on ECMO for weeks. The doctor and team determine how long it should take for your child to get better, but the time needed to recover is not always known

Ready or not, here I come....

 Douglas on his way; can you believe it? We're feeling so many emotions... anxious, excited, nervous, relieved, scared. It's been an extremely tough road, since our 20 week ultrasound when Douglas was diagnosed with CDH and a vigorous 6 weeks being held up in the hospital - I would not wish this on anyone in the world. But I cannot help but think the Lord blessed me and Brad with this baby who has this condition because He knows we are able to handle it. With the love and faith we have in each other, and the support we have been given by our family and friends I have no doubt we will be able to get through the next chapter of this journey also. Once again, please keep us in your thoughts and most importantly please keep Douglas in your prayers in hopes that his journey into this world is a smooth one! We will try to keep you posted as much as possible!

Love you all,

Mere and Brad

God Bless Our Little Man!

11 more days.......

11 more days and our journey launches even further towards a normal life. Mere has been here for 28 days and continues to maintain her wonderful attitude.
Each day we are presented with a Facebook post with another CDH Child that has lost their battle with CDH but we know the lord needed to cure their suffering. I find it hard to understand why we have been so blessed with such a wonderful support team emotionally and medically and what happened to the other babies?

I can't get a sound of a mellow violin out of my head everytime I look at my wife carrying my first baby. I feel like I should sing an emotional song in front of the world and let out all my fears and joys over the past 7 months. I want to share my thoughts to possibly ease someone elses pain in the future and let them know hope never dissapears as long as you trust the lord.

Daddy loves you Douglas Brookins

Merry Christmas and Happy New Year!

Well here we are, entering into a new year with many things to look forward to and many obstacles to overcome. 2010, I can say, was one of the most challenging years of my life - my faith, patience & courage were truly tested.  From the surprise news of expecting our little man, taking the plunge down the aisle, to the death of a wonderful and lovable uncle, and receiving the diagnosis of Congenital Diaphragmatic Hernia - a very long word that would change our lives forever, and many other ups and downs. I cannot thank my husband, family and friends enough for their love and support; it is unbelievable how times like these can really bring you closer to God and the ones you love.

Brad has been my rock this past year, giving me a shoulder to cry on, wiping my tears, making me laugh, and constantly reminding me that I am strong enough to do this. Without him I would be utterly lost. 2010 brought us closer than I could ever imagine, and these past 4 weeks in the hospital have brought us even closer than that. He is such an amazing husband and I have no doubt he will be the greatest father!

The holiday season will be one we will never forget. Spending Christmas, Brads 31^st Birthday, and New Years in room 1239 of St. Joseph’s Hospital was not easy but well worth it. Douglas will have this story told to him many times over, and I cannot wait to be that mother who tells their child over and over what she went through when they were born.

I wish I was able to give an exciting update, but, truth be told I have no exciting news.  At last week’s ultrasound Dougie was measuring at 5lbs 5oz, and my cervix was actually thickening so the increase in bed rest had worked. I am proud to say that I am now 35 weeks and 3 days, and the baby is showing no signs of early arrival. Another meeting with our many doctors is set for Thursday January 6, where we will then discuss the risks and benefits of delivering sooner or later and set a date. I have to admit, being here for almost a month really has taken a toll on me. I never knew being confined to a bed and four walls could be this challenging, and am starting understand why it’s the punishment you receive for breaking the law. I find myself going a little nuts, and poor Brad gets the brunt of my sometimes poor attitude. I know it will all be worth it in the end, but staying positive is getting harder and harder as I get more and more stir crazy.

I will try to update after our meeting on Thursday, or after we measure Doug again next Monday. I hope everyone had a wonderful Christmas and New Years! I am looking forward to 2011 being a great year!

Thank you all for the continuous prayers and support, it helps me get through every day!

Love to all,

Mere & Brad

  

PS: God Bless Our Little Man