Monday, January 31, 2011

Monday Night

I need to go tell Ramsey goodnight, but I wanted to spend some time with Reed first. Ramsey's CO2 was lower, but not as low as they'd like it to be, however, his stats were all awesome today and he looks good. They're starting to think that his CO2 might just lean on the high side, or that it could be caused by a slight air leak through his tube. Dennis and I each got to hold him for over an hour, and he loved it. As the nurse put it, he just "melts into our arms".

Monday Morning

Wow, I have so much to write after a busy day yesterday, and an exciting morning.

Let's start with baby Ramsey. His X-Rays weren't quite as good yesterday as we had seen in the past. They were a bit hazy and looked like the lungs were a bit smaller. They gave him lasiks and PT last night, and the X-Ray's looked excellent today! The haze was gone and the size was back to what they have been previously (The right lung is about full size, the left lung is 1/2-3/4 in size). It's hard at times not to be discouraged over these small setbacks, but the nurses are always quick to remind us to look how far we've come. In the scheme of things, where we are right now is a very good place.

His Nitric is down to 3 so it should be off by Wednesday. I don't think there are any other big plans in store for his care today.

We had many visitors yesterday including a meeting with 4 very special people; two CDH mother's and their survivors. Caleb is 9 and was treated at Children's here in Pittsburgh. Jaxson is almost 3 and was treated at CHOP (Children's Hospital in Philadelphia). View Jaxson's blog here.  We had a wonderful visit sharing stories and letting the boys play with Reed. Someday, we hope to offer the same support to other CDH families that they have given to us.

Sarah and Jaxson, Stacy and Caleb, Reed and Lisa

Today, we were not only excited to see how good Ramsey's X-Ray looked, but Dennis was able to hold him for the first time! Also, Ramsey now has the warmers turned off his bed and he can start wearing clothes that button up the front and be swaddled! I can't wait to start dressing him. :)

Dennis holds Ramsey for the first time!
Ramsey is now swaddled. Doesn't he look cozy!

Sunday, January 30, 2011

Sunday night update.

Today was a busy day...I will update tomorrow with details...all in all Ramsey is about the same and cute as ever.

Sunday Morning

I am on my way up now to see Ramsey. I called for a 5am report and he had a pretty good night with the exception of a high heart rate off and on. It could mean that his tube needs adjusted.

Hopefully I will make it for rounds since they are often later on weekends. I will update at some point today, however we are expecting a lot of visitors so don't worry if you don't hear from me for awhile!

Saturday, January 29, 2011

Saturday Night Update

Ramsey needed a little sedation this afternoon, but he hadn't had any for 24 hours prior to that (and he's allowed it every 2 hours). Previously, his oxygen levels were too high (pulmonary hypertension) but now, his CO2 (what drives us to breathe) was a little high so they gave him lasiks (diuretics) and raised his vent to 42. This is all par for the course. Because his oxygen levels are good, the nitric oxide was lowered down to 5 so we're almost done with that. Hopefully the CO2 will keep improving so we can successfully lower the vent settings.

He looked so cozy as we left him tonight. The nurse used a small vibrator over his lungs that he seemed to like and she layed him on his right side. This should help to optimize tomorrow's X-Rays. We're anxious to see the latest X-Ray and talk to the professionals about them. Each X-Ray seems to vary and it's hard for us to tell just how big the left lung currently is. Part of this is due to fluid build-up which makes the X-Ray look hazy.

Since he is becoming more alert, the nurse said it is important to give him something to look at; we taped black and white images to his bed to promote better vision.

Saturday's Plan

Today marks 7 days post-op and we are so thankful for how well Ramsey is doing! There is nothing major in store for today. Ramsey is doing well and it is agreed that he wants to take things nice and slow. They are weaning the morphine a bit, as well as the hydrocortisone.  They will now take his gases every 12 hours instead of every 8 hours, to avoid too many heel pricks. They won't be starting on his feedings (milk) just yet.

Belly Time

Ramsey likes his new position and is resting peacefully this morning. We're still waiting for rounds so I will have an update later this morning.

Friday, January 28, 2011

Friday Night

There's nothing new to report - no news is good news! I'll update tomorrow when I have Saturday's game plan.

Friday Afternoon Update

Ramsey was very alert around lunch time (I'm telling you, that boy never wants me to eat - lol). I snapped a photo without the flash while his eyes were open. I think he will have his dad's dark eyes! He was given a little sedation since he was so alert and somewhat uncomfortable. He is still looking good! He had two blood transfusions today, and was given lasiks. They are sure working because his diaper was fuller than I've ever seen it! His areterial line came out yesterday. It lasted much longer than expected. Now, they have to prick his heel since it's gone, but he seems to be tolerating that OK.

A Tiny Setback

With the guidance of the nurse, I bathed and weighed Ramsey last night. I also was able to hold him while  she changed his bedding. He wasn't quite as clean as I wanted him, but I didn't want to scrub too hard! His oxygen was turned up during the process so he wouldn't have to work so hard. Afterwards, his heart rate stayed pretty high, around 180. We let him fight it a little, so he can learn how to recover on his own without being dependent on sedatives, etc. for help.

He continued to have a bit of a rough night, so they took that as a sign that we've been pushing him a little too hard in the last few days. The nurse stressed that she wasn't worried...she said she is more worried about me because she knows that I will blame the bath I gave him on the setback. They decided to turn up the oxygen to 40, which is still a low setting. They also turned his morphine back up a bit. They gave him some saline, believing that he might have been too dry, which contributes to a higher heart rate.

They just finished giving him some blood to help with his oxygen. They will also give him lasiks to counteract any fluid retention caused by the blood. He may need to start on Methadone to help as he weans off of  all the medications he's become so accustomed to. We're not sure yet if  they will lower the nitric oxide today or leave it as is until tomorrow.

I wonder just how nervous we will be when we finally take Ramsey home. It is important as he is cared for to pay close attention to his color, especially on his lips. Since he has so much support while in the hospital, that would obviously indicate any signs of distress, but when we take him home, we won't have that to rely on. That's a bit unnerving, but I hope as time goes on we'll have less fear of such a setback and a strong mother's (and father's) intuition if there ever is a problem.

Thursday, January 27, 2011

It's Bathtime!

I'm waiting for the nurse so I can help to bathe Ramsey! I will update with the exciting details in the morning!

2,600 People!

On the 16th, I posted that the blog had 1,300 unique, just 10 days later, there are nearly 2,600 unique visitors!! That's not including the people who don't visit the blog but use the Facebook page instead. Those numbers, coupled with prayers are the reason why Ramsey is doing so well!!

I just love how excited the nurses are when they see how great he looks and how well he is doing :) Everyone thinks he is doing PHENOMENAL!

They didn't start the feeding him milk today, they'll probably do that tomorrow.

It's time to head for dinner now. I'm surprised that Ramsey is sleeping; the last two days he was alert right when I was ready to go eat, then of course I couldn't leave!

Thursday Morning Update

I can't believe it is Thursday already- I don't know where the time goes! Ramsey is still doing well. They removed his catheter yesterday and I got to change two diapers all by myself. For now, he will have no more Lasiks (diuretics). They weaned his Nitric Oxide again by 5 and also weaned his morphine. He needed a little sedative overnight for some shunting. He looks a little uncomfortable at times, but who could blame him with all the tubes he has. I will feel better once he is extubated. They may start feeding him some breast milk today, through a continuous IV. I hope that goes well and that he has another exceptional day!

Wednesday, January 26, 2011

Wednesday Night Update

In addition to the pure joy of holding Ramsey for the first time (see the previous post if you missed it), today was an all-around good day! Each day just gets better and better, and I'm starting to feel like I can breathe easier.

Dennis had to go home today. It was hard for him to leave, but I hope it helps him knowing Ramsey had another good day. Reed went with him; it will be good for him to have a day or two at home, in his own bed and with his own toys to play with.

The moment I've been waiting for

Today marks 14 days at Children's and I finally got to hold Ramsey!!

They needed to weigh him today so they moved his bed out and a new one with a scale in. Someone had to hold him during the transition....luckily, it was me!!  :)  I was so nervous and tense that it seemed like he weighed 50 lbs. instead of 8 lbs. 5 oz. He's still retaining some fluid, so that's why his current weight is so much higher than his birth weight.

Today, they have continued on weaning of the Nitric Oxide and the Morphine. His vent settings are pretty low; they could technically remove the vent sooner, but they won't until the Nitric Oxide is complete. Once he is done with the Nitric Oxide, we should be able to hold him again!

The next step will be to start on feedings. Feedings will be his biggest issue now, which in the scheme of things is nothing compared to what he has already gone through. Hopefully he will be as successful at eating as he has been with each of his other challenges. If not, he may need a G-tube, but  if it comes to that, we know it is temporary and that he has it because he needs it.

I'm so thankful for good days and for the prospect of having him at home with us as soon as he's ready!  It's a rough estimate, but we may be able to bring him home in another month. What a blessing that day will be!

Tuesday, January 25, 2011

Tuesday Night Update.

Ramsey rocked today! He looks great, likes the conventional vent AND his left lung is about 3/4 of a full size lung!

Another Tuesday Morning Update

They transitioned Ramsey to the conventional vent and it is going well! :)

Tuesday Morning

Everything is proceeding slow and steady. There have been minor ups and downs since the surgery but all in all, Ramsey is doing good. We had some concern over a miscommunication yesterday regarding the diaphragm. We were under the impression that because his diaphragm was so small and the repair was so large, that it could hinder his recovery. Fortunately, we were reassured that the patch will ensure that it functions properly. The only real concern with the patch might be a re-herniation, but that would be in the distant future and it could be a relatively easy fix compared to what he has already gone through.

They might attempt to switch him back to the conventional vent today. I hope he transitions well.

Monday, January 24, 2011

Monday Evening Update

Ramsey had another good day. They weren't able to change him to the conventional vent as they had hoped, but possibly tomorrow they will give it a try. He didn't need any extra sedation and today when he opened his eyes, it didn't affect his stats in any way. It was nice to watch him while his eyes were open without overstimulating him. Much of his swelling has decreased and he looks a lot better.

I'm off to see him now before bed. :)

The Brave Little Soul

Ramsey is not only a miracle, he has unlocked a miracle in each of us. At this difficult time, many have prayed, have discovered the power of faith, and have given from their hearts. No words can express how appreciative we are for all of the support we have received. We will be forever grateful.

Since his surgery went so well, we are finally allowing ourselves to look forward and imagine life at home with him. We can picture his nursery, and imagine Reed and Ramsey wrestling in the backyard, yelling "Hey Girls" flirtatiously to the neighbors.

Below is a story shared with us by the chaplain here at Children's. It's a tear-jerker, but it's a must read. Ramsey is OUR brave little soul. Please continue to remember and pray for him, and all the brave little souls at CHP and around the world.

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Here we go Steelers!

Dennis had a great night watching the Steeler game with both of his boys. He saw the first half with Reed at our room, then finished the second half in Ramsey's room. Ramsey had a good night :)

Ramsey's angel bear even sported a steeler hat.

Sunday, January 23, 2011

Sunday Night Update

I haven't had much chance to get online today. It was a busy day, but a good one. Ramsey continues to do well. The first 48 hours after surgery are the most critical...praying for another great day tomorrow.

Our son Reed came back with us today...boy did I miss him. Tonight as we said our prayers, he listed everyone that he wanted to pray for then on his own, he added: "let's pray for Ramsey's nurses". How sweet!

Good night!

Left Lung Update

Just minutes after I made the last posting about his lung, we got an exciting call that the Left lung is in fact expanding and larger than they originally anticapated!! Praise the Lord :)

The Clearing

We went back up to Ramsey's room about 10 last night. They returned him to the more gentler, oscillating vent because he was working too hard on the conventional vent.

We saw another new X-Ray and tallked to the doctor regarding it. He also says the Left lung is small. (I guess my untrained eye thinks it's bigger than it really is!) We had the impression that it could grow to a full-size lung, but he said it will never be full size. It CAN grow with Ramsey, and develop additional air pockets. Even if it contributes 3-4 %, that is better than nothing. Also, the fact that the Right lung is doing so well is encouraging.

Seeing the switched vent, and learning we were mistaken abougt the potential for full lung growth was a bit of a surprise. However, we are still psyched about how well he handled the surgery and thankful that he is currently on encouraging levels of support.

We are not out of the woods yet, but I think we can finally see the clearing!

Saturday, January 22, 2011

He Looks Great!

Ramsey looks unbelievable for what he has been through. He might swell a little in the next few days but we still can't get over how good he looks now.

His left lung looks much bigger than I expected. They called it a bud, but to me it looked about 1/3 the size of his other lung. The doctor said that it has all the functioning parts.


Our prayers are for a stable recovery and weaning of his current support so we can move onto feeding.

Many Thanks

Thanks to God and a wonderful team at Children's Hospital for working one of the many miracles in Ramsey's care. We just spoke to Dr. Gaines and her team....they were excited at how well Ramsey did and were happy to deliver good news. They put all of his organs where they belong and used a Goretex patch to close the diaphragm; it sounds like it was about 1-2 inches in size. They used another patch over the incision to prevent any stress on that area. It's possible that the area will pull or stretch and they will have to fix it, but that sounds like a minor problem in comparison to this hurdle.

Ramsey is on the same level of support that he was pre-surgery. We will be taking baby steps to wean him of that support and the days ahead will be much like the previous days. We may take two steps forward and one step back, but I am encouraged and optimistic that he will recover.

After he is weaned of some of this support, they will put a feeding tube in to start proper feedings. He pooped for the first time today and once again during surgery! A common problem with CDH babies are feeding issues. Feeding is a learned behavior and we hope he handles it well. Another issue is reflux. If that is a problem, they can do another surgery to handle it.

Thanks also to all of the wonderful nurses here at Children's. They have taken great care of Ramsey, and of us. They know when to make us laugh and when to comfort us, and now, they are celebrating with us.

Finally, thanks to each of you for following the blog or Facebook page....for your prayers and encouraging comments. It's wonderful to see how supportive friends, family and even strangers can be.

We know there may be challenges but today, we believe we've surpassed the biggest one.

They are done!

Ramsey did exceptional! They repaired the diaphram with a gortex patch. His vitals are all great. They will be bringing him back to his room shortly and they will let us in once the get him settled. Thank God that the surgery went well! There will be more hurdles ahead, but we are so fortunate that this one is behind us. Once he gets to his room, they will do an X-Ray and we will be able to see how much left lung is there. If there is at least a bud that's functional, it can continue to grow.

I'm praying that he continues to do well. They paralyzed him for the surgery and will keep him still for at least the next 24 hours. Let's hope that he recovers as well as he handled the surgery.

I can't wait for the day when we can finally hold him in our arms.

An update

Our nurse said she hasn't heard from the OR yet but she is watching his vitals and he is doing great! His strength amazes me. They kept sedating him and he kept on opening his eyes. I think he just wanted to win over the staff with his big blue eyes.

He's on his way

They just took Ramsey down to the operating room shortly after 4:00 pm. Preparation will take about 30-45 minutes. The entire surgery will take 2-3 hours. Because it's the weekend, there is not a nurse liaison here to inform us of their progress however, if they are able they will notify us at the halfway point.

Please light your candles and start the prayer chain! May God comfort Ramsey and urge him to continue the fight that we know he has in him. He has already proved what a strong boy he is. May God also guide the surgeon, anesthesiologists, nurses, and all involved in Ramsey's care.

Surgery is on for this

Surgery is on for this afternoon! We'll let u know when!

Still waiting. The surgeon is

Still waiting. The surgeon is never late so they think she must be working in trauma. Ramsey is in prime condition 4 surgery!!

We're waiting 4 the surgeon

We're waiting 4 the surgeon 2 arrive for her final decision.

Friday, January 21, 2011

Surgery Likely

Ramsey had a great day!! Let's pray that he has a great night and morning so they can proceed with the surgery tomorrow. His edema has improved, you can finally see the features of his precious face again. The swelling in his head and feet remain, but that won't affect surgery. We are told the surgery will probably take place in the operating room instead of his current room, which might imply that they could attempt to complete it laproscopically. Will update in the morning!!

The surgeon is very impressed

The surgeon is very impressed with how far Ramsey has come. Todays goal is 2 reduce swelling. Surgery might be tomorrow.

A Fitting Poem

Here's a wonderful poem, written by Bernie that says it all. Thanks Bernie!

Our Father who shines so bright,
please give little Ramsey the strength to fight.
Make his lungs grow big and strong
and get his numbers where they belong.
...Keep your Angels by his side
and guide the surgeon's hand with pride.
In his mommy's arms he'll soon be,
so God's little miracle we all soon will see.

Thursday, January 20, 2011

Thursday Evening

Ramsey had a wonderful day until we left for dinner. Luckily we returned to find him in great shape, but the nurse said it had been really bad. Fortunately, he recovered within 20 minutes.

We are really hoping for surgery tomorrow, but of course, we have to trust the judgement of his team. Hopefully they make the right decision...and it would be nice if that choice was to do it tomorrow!!

Ramsey is having a great

Ramsey is having a great day! We hope the surgery/repair is tomorrrow but they did suggest sat. or sun. Let's hope they make the best decision.

Thursday Morning

Ramsey had a great night. Current plan is to reduce his pressures and oxygen, hoping to get him closer to where he was yesterday morning. He has lost a good bit of the fluid he was retaining. Will keep you posted of any new developments throughout the day.

Wednesday, January 19, 2011

Today's Roller Coaster Ride

They say that CDH is a roller coaster, and today proved that for sure. Typically, I love coasters, but this is not a fun ride.

I hate naps, but was so tired so I thought I'd rest. Dennis was visiting Ramsey when he started shunting which caused his blood oxygen saturation to crash. Dennis tried to call my cell phone, but it was on vibrate so I missed the call. Luckily, one of the nurses contacted the front desk here at RMH and they got through to me on the land-line phone. Dennis told me they were planning to place Ramsey on ECMO and to come right over. Luckily, RMH is just a corridor and two elevator rides away.

ECMO is a type of life support often needed for CDH babies. It can save many babies, but is often viewed as a last resort. It works as a heart/luyng bypass. Read more about it below.

When I arrived, there was a huge team inside and outside Ramsey's room. Dennis had already signed the consent for surgery. They would soon do the surgery (not surgery for the repair, just surgery to place him on the ECMO machine) inside Ramsey's room. Dennis was holding Ramsey's hand and quickly let me take his place. The nurse told me that I should rest my head upon his and cradle my arm around him. I hesitantly did so because I was afraid to make matters worse. Up to that moment, they were providing his oxygen by manually bagging. Within moments of the bagging, my kiss upon his forehead, and placing some holy water from Majegoria on his head, our prayers were answered. The stats are usually 100 pre and anywhere from 70-100 Post. As he struggled, his post stats were as low as 30. Then, suddenly everything improved and the Post stats jumped back up to 70!!

One of the team approached us and started talking...neither of us really heard what he was was all a blur until we heard his final sentence, "For now, we can hold off on the ECMO". Ramsey's condition improved so rapidly that within a half hour or so, the entire team left. He is still doing well tonight. He is staying true to his name; he's a fighter, he's our strong soldier. Thanks to God for answered prayers!!!

Here is the information about ECMO from Breath of Hope, Inc. I tried to link to directly to this page on their site, but it wasn't working so here it is:

Extracorporeal Membrane Oxygenation
A great number of infants who are treated for congenital diaphragmatic hernia will require ECMO in order to survive. ECMO is the last resort in many cases for not just CDH infants but also for other conditions.

Every parent who hears the staff state that their newborn requires this, our hearts jump out of our chests. We know how dire our child's condition is at that time. Each and every hospital or medical center has their own criteria for ECMO and staffing. They also have their own standards for care while a child is on ECMO.  Many are similar but they may deviate from one another slightly.

Venoarterial (VA) ECMO therapy is used when support for the heart and lungs is needed. A catheter is placed in a vein (veno) and an artery (arterial). VA bypass is normally used for infants with heart or blood pressure problems. A surgical procedure, often done at the bedside so as not to move a critically ill infant, is required for cannulation or the placement of catheters in vessels in the neck (an artery and vein). The unoxygenated blood is removed from the right atrium of the heart via the catheter placed in the right internal jugular vein that is threaded into the right atrium.

Venovenous (V-V) ECMO supports the lungs only. In the V-V ECMO procedure, the surgeon places a plastic tube into the jugular vein through a small incision in the neck. This is also a surgical procedure, often done at the bedside so as not to move a critically ill infant.

Oxygenated blood is returned to the baby via the catheter in the right common carotid artery threaded into the ascending aorta. The amount of time an infant can remain on ECMO varies depending on his/her condition and on the recovery of the heart and lung function. The age of the infant, the original illness, the amount of damage to the lungs prior to ECMO and any complications that may occur with ECMO will also determine the length of therapy. The maximum amount of time is approximately two weeks but there are cases which have been on ECMO longer. There are several complications associated with ECMO.

These include:
  1. Bleeding due to the heparinization of the blood in the ECMO circuit to prevent the blood from clotting,
  2. Infection because of the introduction of a foreign object (the catheters) into the body,
  3. Emboli can be air or tiny clots that move from the ECMO circuit into the infant's bloodstream,
  4. Mechanical failure as a result of the circuit or any part of the equipment failing in its function. To provide ECMO specially trained staff is required. A physician who is familiar with ECMO and the infant's care are required to be available 24 hours. An ECMO specialist trained in the equipment and the physiologic process to staff 24 hour care of the baby is also required.

Ramsey is a fighter.

They were literally minutes away from doing the ecmo. it can help but its something u hope to do without. will explain later

ECMO surgery is on hold!

ECMO surgery is on hold! they say he is recovering from something! we believe its the hug and kiss i gave him!!!

On my way 2 Ramsey's

On my way 2 Ramsey's room. Dennis says they r taling about starting him on the ecmo life support machine. This will take surgery. PRAY please.

Now he's back on the

Now he's back on the conventional vent...I guess he likes it best afterall. he is close 2 where we started 2day..just on a bit more support.

They switched back 2 the

They switched back 2 the oscillating vent and he's not crazy about it. Pray that they make the best decisions 4 his care and he does better soon

Week Two: Wednesday Morning

Doctors seem pleased with Ramsey's reaction to the new vent. His BP is good. His Oxygen is on was 50 but they seem OK with it the way it is. He is still shunting almost all the time, which concerned me at first. However, they explained that he is fighting it on his own now, without the help of dopamine or any other meds. They said they could fix it if they wanted to, but that he is learning to handle it on his own which is a good thing. Today, their main goal is to reduce his fluid. They will start with 1/2 dose of a diuretic and see how that goes. Reducing the fluid will help with the surgery. I feel more anxious today, but I'm encouraged that they think everything is good.

Tuesday, January 18, 2011

A Joyful Noise

The conventional vent that Ramsey is on is quieter than the previous vent. Tonight the nurse heard the lungs on BOTH sides. Naturally, the left side was quieter, but she feels there is lung present!

We'll head to Ramsey's room at 6:30 tomorrow morning to hear the plan....I'm not even going to say the possibility of the "S" word....we'll see what happens!!

Tuesday Morning

OK, you probably don't believe me by now, but sometime soon he will have that surgery! He was looking so ready for it and it seemed it would go on as planned. We spoke to the fellow and he said we were waiting for the surgeon to arrive within the next half hour to get her opinion. Wouldn't you know, he started shunting again and so his numbers didn't look as good when she walked in; I guess he really didn't want surgery yet! For those of you that actually know what you're talking about medically, bear with my description here...I think, during shunting that the blood essentially flows in the wrong direction which affects blood pressure. This is easily manageable so it's nothing to worry about really, they just didn't want to do the surgery while the issue was occurring.

The great news is that his oxygen levels are good. For a CDH baby, these levels/his lung functioning is looking pretty good right now.

As you know, there were issues the last couple days with Ramsey being overexcited and trying to breathe on his own. Right now, we don't want him to breathe on his own, we want the machine to do that for him. Each time that occured, he was sedated a little. Last night it reached a point where they couldn't really give him more sedatives. They did an X-Ray and compared it to a previous one. His breathing tube seemed to be inserted a bit more so they pulled it out a bit, and he stopped trying to breathe on his own. I think it has been fine since. Since his pxygen levels are good, they might try to switch him to the conventional vent today. They else want to do an ecko (sp?) to look at the fluid inside and to check his heart. Evidently, the surgeon today likes to do that before she operates.

It was very exciting to see the X-Ray because we could actually see the current size of his Right lung. I could not believe how big it was! If it really was just a sliver at birth then he has come a long way already!! I intend to ask if I can see the first X-Ray so I can see this for myself. I don't know if that type of expansion is normal or if we have a little miracle on our hands. One thing I forgot to ask, let's also pray that during surgery, at least some portion of his Left lung will be discovered. How awesome it would be if there is something there that can also grow.

All in all, I think everyone at Children's is happy with his progress.

We're sooo close but no

We're sooo close but no surgery yet. The holdup is his BP but that's manageable. His oxygen is good and they are happy about that.

Monday, January 17, 2011

Surgery Possible at 8:00 AM

The surgery is scheduled for 8 AM. If all goes well tonight and the surgeons decide to proceed then we are on. Dennis and I have to be there around 6 for early rounds so I guess we'll know for sure after that. I will let everyone know as soon as I can.

Let's pray for Ramsey, the surgeons, the anesthesiologists, etc. May God touch each of them and hold Ramsey in his loving hands until we are able to do so.

My friend Kate, Co-Founder of Project Sweet Peas, gave me many wonderful gifts in a bag she provides to NICU families. Included in the bag was a candle with the following poem. If you are able, light a candle in honor of Ramsey on the day of his surgery.

Take this candle and please light
To aide in hope during baby's fight
And with each flicker of the flame
Say a prayer in baby's name

Monday Afternoon

Ramsey's dopamine is set at 16, it needs to be down to 10 in order to have the surgery so we'll wait and see. They will follow Ramsey's lead and do the surgery when they think he is ready. I'll let you know if we have any updates this evening. His feet were cold, so we got to put little Steeler booties on him :)

He heard my voice again and got excited; the nurse said he really loves me :) We all need to remain extra quiet so as not to excite him.

Monday Morning

They're not taking any chances today as far as bothering Ramsey. They put ear plugs in last night and they still have signs posted that he is resting. Even the doctors just look through the window to check all his stats. They hope to decrease his dopamine today and get some of the puffiness down which will help with the surgery. It is still scheduled tomorrow so unless there are any changes, I think they will go through with it.

Dennis figured it would be a good day to make a quick trip home for some clothes and bills that need paid. My mom and Reed are still here so I think I will play with him today and just check on Ramsey periodically. If the doctors aren't even entering his room, we all figure it is best for us to keep our distance. Fortunately, we are not far from his room if we are needed.

Sunday, January 16, 2011

Peace and Penthouses

Ramsey decided that he just wanted to be left alone today! He had three instances where he was irritated and needed his dopamine increased. Finally they just closed his door and put up a sign saying "Quiet Please, Resting". Dennis is with him now and says he is doing good. I am exhausted and just want to update this before heading to bed.

Reed is staying here again tonight. We were worried that he would need to burn some energy until we discovered the Ronald McDonald Penthhouse upstairs. We weren't sure where my parents took him until Dennis discovered them there, playing with volunteers; they made cookies, did crafts and played in the toyroom. There are computers for the adults, a huge kitchen, dining area, and living areas with fireplaces. You can find other children there and famiiles that have some incredible and heartbreaking stories. There were families of several young transplant patients. One of these families is from Egypt and have lived at RMH for a year. The longest anyone has stayed there is 3 years! The average transplant patient has a hospital stay of 18 months. Some people are lucky enough to be there with the support of families, while others have to stay there all alone.

Tonight, dinner was sponsored by a Calvary Chapel free to anyone staying at RMH. Almost every night this week, meals are prepared by generous donors. Also this evening was acoustic music and free massages by John F. Smith. My mom and I both enjoyed the massage. She thinks it would be nice to have a pedicure next - lol. It is nice to know there is a place to go to relax, talk with others and just get away from the hospital environment for awhile.

Dennis thinks they might do the surgery tomorrow. I guess we won't know for sure until the last minute. I'll keep you posted. Good night.

No surgery today. he's ok

No surgery today.
he's ok now but had a setback so they want him 2 take it easy now.

This could be the day!

Ramsey's numbers are all where they wanted them in order to do the surgery. It's very possible that it will be today. We are waiting for a confirmation from the surgeon. We will keep you posted in order to get the official prayer chain started, if needed. Let's all pray for Ramsey, the surgeons and the entire team. They say the surgery itself is the easy part. His numbers are at a point now that will allow his condition to safely decline a bit after surgery, since that is likely. Then, the critical thing is whether or not his lung will function well. Let's also pray that there is at least a small piece of left lung since it can grow for the next several years. Someone will keep you all posted.

Strength in Numbers

To date, 1,300 unique visitors have viewed this blog nearly 13,000 times! On Ramsey's birthday alone, the site was visited 2,000 times! Aside from the US, there have been visits from Canada, Australia, United Kingdom, Russia, Slovakia and Brazil! You can say what you want about the internet and social media, but I don't think anyone could deny the power it will have in Ramsey's recovery!!

These numbers.along with each comment or silent prayer that I know is associated with them is an IMMENSE comfort to Dennis and I. We look forward to hearing from our followers whose remarks encourage us like you would not believe. I wish I could personally hug each of you!

Saturday, January 15, 2011

Reed Meets Ramsey!

The meeting went very well! Reed didn't even question all of the wires. Instead he asked, "What is that in his belly button?" How funny that he picked the one "normal" thing on Ramsey to question. The nurse let him touch him gently and he talked to him a little. He visited about 10 minutes; they had suggested that we keep the visit short. We told him he can go back again tomorrow.

Those of you that know Reed know he isn't fond of costume characters. I guess we shouldn't have told him that we were staying at "Ronald McDonald's House" because he said he didn't like Ronald and he didn't want to go inside. The poor thing checked every room and even under the furniture.

I hope we don't have to go so long without seeing him again. He has had several fits today, and prior to coming hear he cried telling my mom that he just wanted to see mommy and daddy. Hopefully we can have more nights spent together at "Ronald's".

Saturday's Plan

Today's plan is much like yesterday's. They hope to wean him of the dopamine and something else...cna't think of what it is now. If possible they will switch him to a different ventillator. If they are able to do so, then when they do surgery they can transport him to a surgical room. If they can't change the vent, that's OK too; they will just do the surgery right where he is.

We had a late start this morning, but we were so encouraged by our visit with Ramsey. He is still on the same ammount of sedative, but today when I talked to him and gently held his hand, he moved it, his feet and tried to open his eyes!!!! We were a little nervous all that movement would upset him, but he stayed stable. Maybe he really is comforted by my voice. I told him about all of his visitors, about all the people praying for him and that if he fights this, we can hold and cuddle him real soon. I asked him to make it through the steps they want in the next few days to prepare for his surgery. Let's hope he listens to his mother!

Reed is on his way to meet him now. We will make his time in the NICU short, however he may spend the night here with us in our room at RMH! I am so excited!!

A shout out to CHP and Ronald

My first day with Ramsey at Children's Hospital, Pittsburgh, (CHP) was good overall. Ramsey looks so sweet, calm and precious. The sedatives keep him pretty still, but he wiggled his little foot every now and then and I've heard he has opened his eyes quickly a few times! I was so relieved to finally see him again, and for him to hear my voice. I touched him a little but not quite as much as that first day. I've heard being touched sometimes upsets him, so I'll have to wait. I just want to scoop him right up and hold him, but that too will take time.

There was another scare around 4, but based on Dennis's warning, I somehow knew to stay calm and accept that it is just one of many temporary fears. It took some testing and an eventual blood transfusion, but everything turned out well. They don't do much at night, so we left him around 10:00 feeling he would have and uneventful night.

We are staying at the Ronald McDonald House. It's a wonderful little place that sleeps four, has a kitchenette, bathroom, sofa bed, TV, etc. There are public facilities for lounging, a playroom, and free laundry facilities. Next time you're at Micky D's, throw some extra in their donation holders; it's such a wonderful service they provide and it only costs 15/day for as long as we need it. For now, we will use it and maybe eventually we'll take turns heading back and forth to visit. But now, we need to be here, and I need to recover from the C-section. Luckily, Dennis chose to stay here tonight, instead of the baby's room where he spent the last two nights. Hope he feels well rested today. After feeling so overhwlemed today with all the information thrown at us, I give Dennis even more credit for how well he explained things to me when I couldn't be there the first two days. The staff at CHP is wonderful!!! Everything is explained multiple times by so many people...maybe eventually I'll understand what they are saying- lol.

One more thing, then I need to get back to bed myself!  I was approached and had the chance to discuss the events of Ramsey's arrival, including our disapointment with how our options were presented to us by one of their team members. I talked with the individual and hope I was able to properly explain myself, and  my reason for being upset. What matters most is that Ramsey is still fighting so I hope everyone involved can let go of the hurt and focus on the care he is given now. As one of the staff said, we are a team, Dennis and I included. I know as a team, we ALL hope for Ramsey's survival and I pray that we can move forward with a shared sense of determination, and most of all, an environment of positive energy and prayers for our little guy.

All in all, it was a good first day. I won't lie, it was all overhwhelming, and I still can't believe any of this is real. I had my moment to cry, pity myself and to feel outright pain because I had to wait for my prescriptions to be filled, long after I should have taken my pain killers. However, I feel much better now and I'm anxious to see what Sat. brings.

Rounds are at 8:00 am. I hope I can make it there to hear the plan for the day, but I intend to let Dennis sleep, and I can't walk that far yet by myself. I'm at his mercies in my wheelchair - lol. If we arrive after the rounds, the nurse will update us and I will try to let everyone know what's going on, even if it's a short update by phone.

Friday, January 14, 2011

It's so nice 2 finally

It's so nice 2 finally be here. Now I just need a big hug from Reed and I'll be complete.


They feel one of the lines is tickling his heart and that is what was making his heart rate soar. They are adjusting it...Dennis said he is stable. My sister in law is on her way to pick me I'll be there with him soon!!

Prayers Please

Dennis was ready to come get me when Ramsey had another bad spell. Something with his heart. He doesn't want to leave until things settle. I just can't wait to be there!  If it wasn't for this C-section, I'd be walking there for sure! Let's hope this passes like the rough spells did yesterday.

Today's Update

Ramsey had a busy day yesterday. He had an IV surgically inserted and they made many adjustments on his level of support, trying to find a happy medium. He had some difficult moments, when he "crashed" due to those adjustments, but he pulled through! Such occurences are common in this type of situation, and although I'm sure it's upsetting, Dennis said you get used to it and you learn not to panic each time it happens. Considering everything he went through, the nurse said he did very well and he had a great night.

They are working on some issues with his veins and blood pressure, which I need to have explained to me better.  They scheduled surgery for Tuesday but will do it sooner if possible!

I just met with the Doctor and he said to shower and then I'm out! :) Can't wait to see Ramsey and hope to see Reed soon too. I miss them both. Please keep praying for Ramsey, and pray for Reed that he can understand why we're not at home with him right now. I think we will bring him tomorrow to meet his big brother...something he is so excited for!!

Isn't he handsome!

Ramsey Armand Razza
Born 1-12-2011 at 2:38 pm
5 lbs 13 oz
19 inches

The name Ramsey is his maternal grandmother's maiden name.  Armand is his paternal grandfather's name and it means "strong soldier".

Ramsey Armand with Pappy Armand

Ramsey holding his daddy's hand.

Thursday, January 13, 2011

One Step at a Time

First of all, thanks to my sister, and to Kate, and all others who helped to keep everyone updated yesterday. It is so encouraging and comforting to see all of the support and loving words everyone has shared.

They are waiting to see what his condition is today and tomorrow as what they call the "honeymoon phase" ends . (Usually CDH babies have a day or two when their condition looks really promising known as the honeymoon phase). Then, I believe they will try either surgery for the hernia repair, or ECMO. Based on what I've learned, I think it would be great news if they feel he is up for the surgery. ECMO is more of a last resort option which has saved a lot of babies, but can also have negative results such as clotting, or brain damage. Ramsey is highly sedated and on oxygen and other types of support to give him a rest. They are adjusting these measures to see how much he can comfortably handle on his own.

If you've been following the blog, you know that I have, with the help of God and everyone's support, been surprisingly strong and hopeful for the best for Ramsey. Even when I wasn't feeling so strong, I never really expressed it; I wanted to keep my postings optimistic because that's just who I am. I am still strong and optimistic, but bear with me if this time, I share more of the emotions that I am feeling now.

As you know, they started to induce me Wednesday around midnight. Things progressed slowly. They said I could have an epidural at any time, and I was surprised that I didn't need it. By early morning, they stopped the Pitocin because the baby's heart rate was decreasing. They tried the Pitocin two more times, breaking my water after the second time. Because they felt that each contraction was putting too much pressure on the baby, (possibly caused by the cord), they gave me an epidural prior to the third Pitocin attempt. That way, I was ready for a C-section if needed. They turned off the third Pitocin quickly and at that point, even I was ready for the cesarean.  It went quickly as expected and they showed us Ramsey before taking him straight to West Penn's NICU.

Dennis and my mother were the first to visit little Ramsey while I was in recovery. Next they brought Dennis and I to the nursery to see him before he was transferred to Children's.  Before seeing him, we were approached by a fellow (doctor in training to be a specialist at Children's). Unfortunately, her attitude did not match my optimistic nature. She said things were much worse than we thought, that he only had a small sliver of lung on the right side and no lung on the left (based on XRAYS) . She basically said that there was nothing we could do..that ECMO would not benefit him....that it would only extend his life. She wanted us to decide whether to transfer him to Children's (CHP) as planned, or " let him die" with us here at West Penn.  She felt he wouldn't survive the transfer to CHP and gave us all the impression that no matter what he would die. It seemed implied that we were merely choosing if he should die alone at Children's or die with us at West Penn. Initially, we took her word for it thinking it was just the facts when actually it was her opinion.
One of Ramsey's first photos, taken at West Penn Hospital

Dennis (Daddy) and Ramsey

Since the moment we learned about Ramsey's CDH at 19 weeks, life has felt like a bad dream. Believing it was all going to end that quickly was a nightmare. I tearfully met Ramsey for the first time, with Dennis by my side and a room fool of other's who joined us in tears. We weren't allowed to hold him, just gently touch him. I sat and talked to him, trying to find all the right words to say...that I love him and want him to fight, but that it was OK to go Heaven if he had to....that there are so many people who love and are praying for him. That his big brother Reed loves him and can't wait to meet him.....

We baptized him along with the help of one of West Penn's wonderful nurses and placed a few special trinkets alongside him. We decided that we owed it to him to try and save him by sending him to Children's. Thank God we made that decision.  Once Ramsey and the team from Children's left the room, we were approached by a West Penn employee who said that the opinion of the fellow we spoke to from Children's was just opinion (from someone who is still in training). She stressed that we made the right decision to let the surgeons determine what Ramsey's condition was. As you can see from the above update on Ramsey, things are still going to be a challenge, but they are not nearly as grim as she made them seem. He made it to Children's, he may even make it to surgery and someday, I hope he can make it home!

We'll keep taking it one day at a time, following Ramsey's lead. He's a fighter and with all of us on his side I don't think he'll give up too easily!!

They're doing surgery

They're doing surgery 2 insert a type of iv into Ramsey's leg. Overall he's cooperating well.  Maybe surgery or ecmo in 2-3 days.

Ramsey is highly sedated and

Ramsey is highly sedated and on support to give him a rest. They will wean him slowly off support 2 find lowest level of support 4 him.  Also, he is not on ECMO yet.

Wednesday, January 12, 2011

Ramsey has been transferred to Children's hospital.  They are going to put him on the ECMO machine to see if that will help him.  (Dennis is there with him.)  Thank you all for your continued prayers and support. 

PLEASE PRAY!!  Ramsey is not doing as well as we had originally been told and needs your prayers now more than ever!  Also prayers for Lisa and Dennis as they face whatever is ahead. 
Thank you ~ Lori

Correction - 5 lbs 13 oz!! Even better!!

5 lbs. 3 oz. !!!! 
RAMSEY HAS ARRIVED!  He was born at 2:38 PM!  They immediately started to prep him to take him to Children's hospital.  No weight or size yet, but Dennis said he looked "big & healthy".   Lisa is in recovery and the doctors said that everything went well.  Please continue to pray for strength for Ramsey and for God to be with and guide the hands of the doctors, nurses, and anyone who will be caring for this precious child.

Lori ~ Lisa's sister & Ramsey's Aunt
This is Lisa's sister, Lori.  I wanted you all to know that they are taking Lisa for a c-section right now.  The pitocin was putting the baby under stress, and they fear that the umbilical cord may be wrapped around something because every time she has a contraction, it affected the baby's heart rate, etc..  They were to start the procedure at around 2:15 and it will take approximately 1 hour for the entire procedure.  I will update as soon as I get any news.  Please pray!!

They just broke my water.

They just broke my water. Hopefully things will progress sooner.

Correction...I'm contracting every 5 minutes.

Correction...I'm contracting every 5 minutes. They're gradually increasing the pitocin. Ramsey seems 2 b tolerating it.

Got the epidural! Contracting every

Got the epidural! Contracting every 2-3 minutes but I can't feel a thing :)

A New Plan Starting over

A New Plan
Starting over on the pitocin but getting an epidural 1st. Baby's heart rate wasn't great on the pit. will be ready 4 c sec if needed.

Waiting 4 docs Pitocin is

Waiting 4 docs
Pitocin is still off because the baby didn't like it. Dr's will evaluate things when they make their rounds.

Only 3 cm I started

Only 3 cm
I started out at 2.5 and still I'm only 3. They just shut off the Pitocin because they "saw something they didn't like". hmm?

Taking it slow. They are

Taking it slow.
They are giving the pitocin slower than normal 2 "please the baby". Pain is not bad. Can have epidural whenever I want.

Predictions? They started the pitocin

They started the pitocin at 12:25. Any predictions on a delivery time?

Tuesday, January 11, 2011

Birthday Wishes

Wishing my husband, Dennis, a Happy Birthday today...what a special and stressful day for a birthday celebration. Tonight, we'll head to West Penn to be induced at Midnight and sometime tomorrow we'll be welcoming Ramsey and celebrating his birthday as well as his pap's birthday.

Please pray for all involved in the upcoming days, weeks, months.  Especially pray for little Ramsey that he may handle the surgery and recovery and gain enough weight to be home with us soon. Also pray for the surgeons, and all medical staff that God will also be near them as they care for Ramsey. We don't know how long the road ahead is. Some CDH children are hospitalized for weeks, some months, and some even longer. Beyond his hospital stay there may be additional challenges and complications. I pray for continued strength and a positive attitude as we face whatever may lie ahead. May he stay true to his name's meaning and be a "strong soldier". We're rooting for him and can't wait to finally meet him!

Saturday, January 8, 2011

Comments and Updates

Many people have told me that they tried to comment on the blog and couldn't. I think I finally corrected that...anyone, even anonymous users should now be able to post comments. Of course, we can also be reached by email or on Facebook at Rooting for Ramsey. The one thing I don't like about commenting on the blog is that I don't necessarily have a way to get back in touch with people.

We will continue to update the blog/facebook page once Ramsey arrives and thank each of you for your continued prayers.

Thursday, January 6, 2011

6 More Days!

Everything went well today. They are still inducing on January 12, however we are now scheduled to be there at midnight instead of 7 am. It will be nice to get a head start on things and it makes more sense for him to arrive during the day when there are plenty on staff, etc.

What I forgot to mention in my earlier posts is the significance of his scheduled birth date. While Ramsey's father Dennis celebrates his birthday on January 11, we chose the 12th because that is his namesake's birthday; Ramsey's middle name will be Armand, his grandfather's name! We thought it was perfect for them to share a birthday in addition to the same name.

Tuesday, January 4, 2011

37 Weeks!

This morning at 5 a.m., I took my last Procardia. I normally take it every 4 hours. Beyond that, who knows what will happen! I am expecting to go into labor soon, but you never know, maybe I will make it to January 12! Thank goodness there aren't any major snowstorms predicted in the near future. I subscribed to our EMS service yesterday, more for Ramsey's sake than mine. I want them to be aware of his condition in case we would need their service in the future. However, it doesn't hurt to be prepared just in case I need them to make it to West Penn! I'm glad that they now have our info on record. The frustrating thing is that they may not even know what CDH is. I read so many blogs, forum postings, etc. that stress this point. CDH babies/children face certain complications well after discharge from the hospital that many health care providers aren't even aware of. I guess it will be up to us to be as well-informed as possible so we'll know what to look out for. Also, we are fortunate to live so close to a Children's Hospital.