Monday, January 31, 2011

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...

Monday, January 24, 2011

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.
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

Thursday, January 20, 2011

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

Monday, January 17, 2011

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!

Sunday, January 9, 2011

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

Monday, January 3, 2011

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 31st 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