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