Wednesday, December 22, 2010
I apologize for not updating sooner. Up until yesterday status remained the same as last week, in the hospital, on mild bed rest just waiting as long as we can until Dougie makes his début. Monday, 12/20, we had a meeting with the St. Joseph/CHOC medical team(s) who will be involved in my c-section/Doug’s delivery as well his transportation to CHOC and the team that will care for him there. The meeting was overwhelming to say the least, most of Dougie’s fans were able to make the meeting and support Brad, Dougie & I and we cannot thank them enough for coming out. There were about 8 to 12 doctors & nurses in white coats, each of them had a role in the meeting, and each of them will have a role in Dougie's journey into the world. It was amazing to me to see how they all worked with each other, and how every single person in that room truly cares for my son, my husband & I.
We discussed the ‘delivery day game plan’, and came to the conclusion that the best thing we can do for Douglas is hold off as long as possible, at the very least (Brads Birthday!) will be the day of delivery if we cannot hold off longer. Last week Dougie was measuring around 4lbs 9oz, and we would like him to get bigger (I want him as chubby as possible). They will measure again next week and hope he has gained a few pounds.
Once we got back to the room, Brad and I started a game of to help pass the time. I realized then that I hate Monopoly and will probably not play another game in my life (I’m sure you can guess who was the winner...and who was the sore loser).
On Tuesday December 21, after reviewing results of ultrasound & other tests taken that morning, Dr. Anzaldo paid us a visit. He said Douglas continues to thrive, even without as much fluids as he is used to, and he seems to be looking good. However, my cervix is starting to get smaller in preparation for labor. When last checked (the day we were admitted to St. Joseph's on 12/13)) my cervix measured at a 3 - yesterday it was 1.7 and continues to get smaller, hastening the beginning of labor. So the doctor believes Douglas may come sooner than we had hoped. Dr. Anzaldo said to try and slow down the process, stay off my feet and off my cervix more than I already am. Which basically means - do not get up for anything other than the restroom and when I am in bed I need to be pretty much horizontal.
Laying in bed all day everyday takes its toll, but luckily we have a great support system and I have had many visitors bringing goodies every time they visit and get deliveries often! It looks like a lot like Christmas in my room and that helps tremendously! All the nurses say they love coming into my room because it is so warm and cheerful, I have had a few cafeteria workers come up to check it out because they heard its so pretty! So thank you everyone for the beautiful decorations, flowers, cards, pictures & goodies - it truly has made a difference!
Time is creeping by, I can’t believe it has only been 10 days. But I am not complaining (much). I am prepared to stay 10, 20 or 30 more if Dougie will let me, everyday I am in here is another day he gets to grow stronger for life outside of Mommy. I am trying to prepare him as much as myself for the day they take him from my body, and I think that is the hardest part of this whole journey. Knowing one day, in the near future, I won’t be the only thing that is protecting him and keeping him safe. This must be every mother's worse fear - not being able to protect your baby from anything and everything that may cause them harm or pain. I am coming to the realization that I am a mother now, and this fear, doubt and overwhelming curiosity of the unknown just comes with the territory.
Thank you all again and again, for the prayers and support. Let’s pray for a little more time for both Douglas and myself, and pray for, when the time comes, he will overcome all of his obstacles & challenges.
We love you all very much,
Mere and Brad
God bless our little man...
and God bless the doctors, nurses & wonderful staff of St. Joseph's Hospital and Children's Hospital of Orange County
Wednesday, December 15, 2010
.Yesterday was as good as could be expected, Dougie cooperated and stayed put thank the Lord. I continued to get my hourly meds, of antibiotics to prevent infection, steroids to help speed up his lung development, and medication to slow down/stop my contractions. We had a NST (non stress test) done on the baby every 4 hours, where they basically monitor the baby’s heart rate and the nurse said he is sounding like a rock star! We are very proud of our little man!
A little hiccup in my otherwise happy day, Sydney came to visit me but wasn’t allowed to my room (even though all the signs on this floor and the elevator say children 2 and above are allowed). I was completely crushed, as was she. We tried explaining to them that she was my daughter… step daughter… or my speech therapist… and that I just forgot to put that information down when we were being admitted, but they knew better. I couldn’t imagine being locked up in here for who knows how long and not able to see my Tristen, Lennox, Sydney or Phoenix!
So once the doctor came to visit me, I put on my best pouty face and he said as long as Douglas is doing well, and not planning an escape we will hope to keep me here for 3 more weeks If that is the case he will arrange it so I can get wheeled outside to the courtyard every 7 days or so for a visit and some fresh air!!! YAY! Auntie Bear needs to see her little cubs! So just a few more days kids and we can visit!
Anyway, back to the doctor visit. Dr. Anzaldo said we should get our minds set for 3 weeks from now, Douglas might have some ideas of his own on this matter, but we need to do everything in our power to keep him in as long as possible. So looks like Christmas, Daddy’s birthday and New Years will be here! Although it is still somewhat of a day to day battle, Dougie can change is mind at any moment, but we’re in this for the long haul and were not letting up without a fight!
Our Thank Yous: Brad and I had the most wonderful nurse yesterday! Her name is Lori and she really made our day, she was so attentive and thoughtful it was incredible. Unfortunately we won’t have her every day, so we gave her a thank you card for all of her hard work and are crossing our fingers we get to have her again. I am keeping track of all of our nurses and wonderful staff here at St. Josephs, and hope to be able to get them a little something when this journey is over. You have no idea what a difference it makes when you have someone who truly cares about you and the well-being of your baby.
Thank you to all of our thoughtful visitors yesterday! Thank you for taking time out of your busy days to come see us and bring goodies, it really means a lot! Our room is looking more and more homey and festive with the artwork the kids have done, the flowers we’ve been given and the Christmas décor being put up!
Also, we cannot thank you enough for the ongoing prayers and support! The Lord is hearing them and watching over, protecting our little man! Thank you so very much!
We Love You All, God Bless Our Little Man,
Brad and Mere Collins
Tuesday, December 14, 2010
Yesterday was quite an adventure, and it turns out Douglas seems to have his mothers patients when it comes to waiting around.
At about 6:00am Monday December 13th; just ten minutes after Brad kissed me goodbye and went off to work, I rolled over to try and get more comfy and SPLAT! My first thought was that I had peed my pants a little… gross! So I climbed out of bed, and quickly headed for the restroom. As I was making my way passed the dogs and trying not to trip in the dark, it was getting worse and worse and by the time I got to the restroom it was apparent that my water had broke. I just sat there thinking OH MY GOODNESS!!! Once I was able to get to my phone I called Brad at work, and once I heard his voice the tears came as I said “my water just broke, we need to go to the hospital.” His response was something along the lines of "Are you sure…?" to which I then over looked the puddle of water on our bed and puddles that followed me to the bathroom, and the water that was still leaking from my body, I said, “um, yes, I'm quite sure”. He told me it would be OK and he was on his way home. Once we got off the phone all I kept saying and all I could think was "It's too soon". I knew that especially for CDH children, time for the lung to grow in utero is critical, and the last meeting we had with Doug’s surgeon he made it clear we need to wait until term (37-40 weeks) to deliver. So, needless to say I was freaking out that I was still a little over six weeks away from my due date.
But, as anyone with a child knows, YOU are not in charge. I dialed my doctor’s office, and of course got voicemail. I waded through the maze of voicemail prompts and eventually found a live person to talk to, who told me to just show up and let them know the situation, she was not at all helpful. I then called my mom, who I knew would be on the train on her way to work so I was crossing my fingers that she would be able to get off at the next stop and meet us at the hospital. Much to my frustration she didn’t answer, after trying for what felt like an eternity I called her house hoping she was running late…. SHE WAS! Once she picked up the phone, the tears started again, I let her know what was going on and she said she was going to meet us at the hospital!
Luckily Brad was home in a flash, calling our families and packing our bag. Still trying to wrap my head around everything that was happening I managed to find some sweats to wear, and before I knew it we were headed out the door… after changing my pants 4 times due to continuous leakage. Once we were in the car I started to get a hold of myself all thanks to Brad, who made me laugh and distracted me from the coming contractions.
Once we arrived at the hospital, my mom was already there and met us at the main entrance, I was put in a wheel chair and we headed up to the 2nd floor. Once we got into Labor and Delivery check in, we had to wait for one women to be checked in, then another couple and then it was our turn just as Gampy Glenn, Grammy Steph, Auntie Jess, and Papa Tony got there. Brad and I filled out our paperwork and were sent to room 1234 for evaluation.
After a couple hours of waiting and visiting with Dougie’s MANY fans who came to support him…. We were told the doctor was on his way and we’d get our new game plan in order as soon as he got there. Seeing Dr. Anzaldo was quite a relief, as he assured us we would be in the best care and we weren’t going to take Douglas out until we absolutely had to. Mom had a million questions for him, which made me feel better because in the moment I can’t do anything but take in the information given to me.
So, where are we now? The plan is to keep baby in Mommy’s tummy as long as possible, at the very least until Wednesday. That will give time for the steroids I was given yesterday and will be given today, to increase Dougie’s lung growth. After that we will again evaluate the baby to see how he is doing with less fluid (since even at this very moment they are still leaking from my body… yuck). I am hooked up to IV’s with antibiotics that will prevent infection, and am being given medication every 4 hours to stop my contractions. As of now, we are playing the waiting game which is fine by me! I had a discussion with Douglas earlier and said “I understand you are getting restless and excited to meet your Mommy and Daddy, but you need to stay put until we give you the green light” hopefully he will be a good little boy and listen to his mother.
Brad and I are in room 1239 at St. Joseph’s hospital in Orange and expect to be here quite a while. I will update again as soon as we hear more news.
Thank you all for your prayers and support, we need them more than ever so please keep our little man in your best of thoughts and daily prayers!
God Bless Our Little Man
Wednesday, December 1, 2010
First off, we would like to thank you all for your continued love, prayers and support through this trying time. Since our last email update we have switched care from Orange County Womens Medical Group, to St. Josephs Hospital in orange, and our new OBGYN is Dr. Anzaldo, a high risk pregnancy specialist. We have met with him twice already and he has definitely made us feel more at ease with his confidence and knowledge of this type of condition.
We have also met with Dr. Rebolledo, a pediatric cardiologist and the doctor who will be monitoring Douglas' heart after birth, and surgery. He did an ultrasound and took a good look at Doug’s heart and made sure there were no other concerns in that area. We are very confident in him and his team and enjoyed meeting with them as well.
Today was a great day. Brad and I got to meet the doctor who will be performing surgery on our little man! His name is Dr. Vihn Lam, a pediatric surgeon who not only went to USC but then went to Harvard Medical in Boston (So you can imagine how excited Brad is). I did some research on him before our meeting and saw that Congenital Diaphragmatic Hernia's are his specialty and that made us feel great going into the meeting. I was a little nervous and anxious for this meeting; wondering if we would like him, or if we would need to find another doctor to perform this surgery. Putting your baby’s life in someone else's hands will make any mother feel uneasy. But Brad assured me we would be just fine, as we were. Once we were called in, we were taken to an adorable patient’s room that was painted like the ocean, with Fish, Turtles, Sea Horses and Sharks. Then we got to meet Dr. Lam, who Brad say's reminds him of Mr. Chow from 'The Hangover'.
Dr. Lam was extremely excited to meet us, he said that Diaphragmatic Hernias are his passion and have been since medical school. He understood how anxious and scared we must have been, and said we are in the best of hands. He has been doing these surgeries for 20 years now and has never lost a patient! He in fact did this surgery on a patient yesterday and she did great. We talked for close to a half an hour about what we can expect, and he covered any and all questions we had before we even had a chance to ask them. Towards the end of our meeting he recommended we tour the NICU at CHOC and even called over there for us to ask the parents of the baby who was in surgery yesterday if we could see her.
Once we checked in at the CHOC lobby where they gave our badges and sent us up to the 2nd floor, the head nurse Debbie met us at the elevators and gave us a tour. She showed us all the little rooms, the incubators or "baby limousine" as she called them. Then we went to the back room where the CDH baby was at, she said babies with Doug's condition usually get a big room in the back that is shared with only one other baby (CDH babies don't do well with a lot of noise or commotion). We went into the room and met the little baby who had the surgery Dougie will have, she had quite a few tubes in and all around her, but it wasn't nearly as scary as I have imagined we even heard her cry a little which is great because her lungs are strong enough to let out a little whale. Debbie then took us around to the recovery room, where the NICU babies go once they are able to be taken off the ventilators and other machines. Then before we knew it the tour was over. All of the nurses and staff at CHOC were extremely kind, we feel very confident and comfortable which is great since we will be spending a lot of time there.
Lastly, we had our 30 week check up with the Nurse Practitioner at my OBGYN's office. The baby sounds great, and he is growing like crazy. I am only 30 1/2 weeks along and the baby is measuring at 34 weeks! I say the bigger the better!
Once again, we cannot thank you enough for your prayers. We know God is watching over us and our Douglas, and could not get through this without him!
We love you all, God Bless our little man,
Mere and Brad
“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options medically and emotionally: give up, or fight like hell.” - Lance Armstrong
We went to the Doctors yesterday and got to see Douglas Brookins on the ultrasound screen and he is doing well. Grampa Glenn and Grandma Lane were able to join us and see there next grandchild. There is no status change which is good and we found out that his condition is not a genetic issue so that is very good news. Orange County Womens Medical group seems to be the wrong place for us, and we are currently researching the option to have Douglas at St. Joesphs in Orange, then transfered to CHOC for his surgery and after care. Our puppies Patsy and June enjoy spending time in Douglas' nursery and we can see they are anxiously waiting for their little brother to arrive as are Mere and I. Once again thank you all, the lord has truely blessed us with the best Family and Friends.
Love you all,
September 26, 2010
As some of you may or may not know, our baby was diagnosed with Congenital also called CDH. CDH occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known.
The diaphragm is formed in the and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. Right now Douglas’ stomach has is the only abdominal organ in his chest cavity and is pushing the heart to the right side of his body.
Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues. CDH occurs as frequently as and , yet there is very little research being done and virtually no media coverage.
We will not find out the severity of his condition until our next appointment, on October 5th. Which we will then discuss our options and next steps with our doctor and the neonatal specialists. As you can imagine we are having an extremely hard time with this news, and the suspense of not knowing our babies future is almost unbearable.
All we can ask is for your prayers and support. Feel free to forward this on, as we hope to spread the awareness of CDH and get as many prayers for our little man as possible.
Please vote every day for Pepsi research: http://www.refresheverything.com/search/?q=cdh%2F+cherub%2F+cdhcherubs%2F+cedar.fork%2F+rett.syndrome%2F+tucson.nursery%2F+patrick.school%2F+&ic=0&im=0
And for more information on CDH visit http://www.cdhsupport.org/cdh.php
God Bless our little Dougie
I have been trying to keep everyone updated on Dougs condition since diagnosis, and thought creating this blog would be a great way to do so. Thank you for stopping by to watch our journey, and Dougies progress. I will back track a little so anyone who is not familiar with our situation can get a better understanding.