Tuesday, June 1, 2010

Sunrise


This morning we said our last goodbye to our sweet, strong baby boy. We sat alone in the dark on the sandy shore of Chincoteague Island with the moon and the stars above us. The winds off the Atlantic were strong and filled the salty air with the sound of waves breaking along the beach. As light began to break across the sky Josh read "I'll Love You Forever" by Robert Munsch. The book was given to us by our very good friends, the Hammers, while Charlie was still battling at Children's. It was the book Marina read to Charlie right before his final surgery and the evening he took his last breath in her arms.

We also read a Bible passage we saw in a blog of another set of close friends, the Leinos. Their son, Isaac, fought the same battle with HLHS. This passage touched us deeply when we read it on their webpage, and we felt it resonated with us.

"The Spirit of the Lord God is upon me...to grant consolation & joy to those who mourn in Zion - to give them a garland of beauty instead of ashes, the oil of joy instead of mourning, the garment of praise instead of a heavy, burdened, & failing spirit - that they may be called oaks of righteousness, the planting of the Lord, that He may be glorified." Isaiah 61.1 & 3

At long last, but somehow right on time, we have closure. At the dawn of a new day, the first day of June and the unofficial start of summer, we said our final goodbyes to our sweet, strong baby boy. We love you, Charlie.

Monday, May 24, 2010

One day at a time...

The past few days have left us feeling like we are having mood swings. At moments, we are brought to laughter and smiles by sweet little Noah. At other moments, we are struck with sadness and grief at losing our sweet Charlie. There doesn't seem to be a middle ground. During these moments, it feels like it would be so easy to just allow the grief to overcome us, to let it swallow us whole. We can't, however. The sun continues to rise, and so will we. Noah needs us to be strong now. We will take our 25 days with Charlie and continue on our journey, holding it close to our hearts.

We have gotten our chance to say goodbye to Charlie. We know that many who follow the blog, as well as many who are a part of our daily lives want to know about a memorial service. We appreciate it so very much, however, we have chosen to keep it among family. Many people also would like to know how to help or contribute. After discussion, we have decided three ways that you can help:

First, there is an organization called Saving Little Hearts. They make care packages for families going in for CHD surgeries. We ask that if you choose to donate money somewhere, please sponsor a care package for families out there. Go to www.savinglittlehearts.com and click on 'You Can Help' then 'Sponsor a Care Package'. We never got a chance to need one for Charlie, but there are many kids out there who could use a little extra love during a difficult and scary time.

Second, look up your local Ronald McDonald House. Don't necessarily donate money - but find other ways to give to them. Make some packed lunches for the families, or cook a dinner for them. It was a blessing to come home after a hard day at the hospital and have a home cooked meal ready for us prepared by wonderful, caring people. If you don't have the time, donate some canned goods or easy to make food to stock up their kitchen - another blessing during our three weeks there.

Third, and last - please continue to share Charlie's story. It didn't end the way we had hoped. However, we wouldn't have changed a thing. We were thrown into the world of CHD kind of blindly - we thought it was an immediate death sentence for our boy. Even though he didn't make it, it wasn't the CHD that took his life. There is so much hope, and if just one single person can read this story and find hope and strength, this blog will have done its part.

Thank you all so much for your continued prayers, love, and support. We will continue the blog, as we still are the Baer Bunch - it may just take us a little time to get into it again.

Lots and lots of love,
Josh, Mina and Noah

Friday, May 21, 2010

Peace for Charlie


Our sweet baby Charlie, who fought so hard for the past 25 days, went to heaven last night, in the arms of Mom and Dad. The day so quickly spiraled downwards; it breaks our hearts to write this.

During rounds yesterday, we were all extremely hopeful. Charlie was doing well; the ECMO was on the lowest setting possible and Charlie was being a rock star, like always. The decision was made to attempt to take off the ECMO that afternoon. The only missing piece of information we needed during rounds was the follow up head ultrasound.

Shortly after rounds, the doctors came to speak to us. The small spot on Charlie's brain was indeed a bleed, with a part of the brain showing ischemia. Our baby boy had a stroke due to the ECMO. They were waiting for a follow up head CT scan in order to confirm their theory. While waiting, they decided to give Charlie a chance and clamp off the ECMO circuit, to test and and see how he could handle it. The first 20 minutes were golden - but his blood pressure suddenly started dropping, and he was not perfusing well. At the same time, they were watching his heart function on echo and found that there was no longer a pericardial effusion, however, there a was a collection of fluid in front of his heart, about the size of his heart. With all of this information, we weren't sure if Charlie would be ready to come off of ECMO after all.

The CT scan confirmed the stroke, however, and the decision was made for us. While on ECMO, Charlie had t0 be on Heparin, a blood thinner. This would only make the brain bleed worse. Ready or not, Charlie had to be taken off of ECMO. Before the decannulation, Dr. Sinha was to drain the fluid from the front of his heart, in hopes that it would help in Charlie's heart function. The doctors were very clear with us - if Charlie was unable to survive off of ECMO, he was not a candidate to be placed back on it. He was out of choices.

Mom and Dad read Charlie a book before his procedure, and then left to wait with family. It wasn't long before they told us our worst fears were coming true. Charlie's pressure had dropped with decannulation, and he was bleeding out from surgery. It was very unlikely they would be able to revive him with CPR, and we had the choice of going in and holding him, or making them do CPR. We chose to hold our baby boy during his last moments here on earth, without doctors and procedures. Just the four of us; mom, dad, Noah and Charlie - together one last time.

We are so incredibly proud of our sweet, brave boy. He didn't live long, but he put up a hell of a fight. He inspired people throughout the globe; prayers around the world were sent for him. We feel those prayers have been answered. Our baby boy will no longer feel pain; he will never have to have his chest opened again. He is in heaven, Noah's personal guardian angel. We feel overwhelming emotions...sadness, grief...but happiness that Charlie Baer will never have to suffer again.

We love you, Charlie Baer. We miss you so much, but we will all be together some sweet day.

Wednesday, May 19, 2010

ECMO wean attempt #2

Little smiles


Brave little Charlie


We are officially attempting to wean Charlie off of ECMO again. Charlie had a very good night; they were able to use the machine to pull sufficient fluid off of him, and he is continuing to put out urine on his own. His labwork has stabilized again. His echo looked good again today, but there is something else we need to keep an eye on: Charlie has a small pericardial effusion - that is to say, he has a small amount of fluid collected between his heart and the sac surrounding his heart. This isn't affecting his heart's ability to pump thus far, and the doctors don't believe it is going to be much of an issue. However, they need to keep a close watch on it to see whether it will go away on its own, or whether they will need to go in and remove the fluid surgically. Please pray that it will go away on its own with all of the diuresing that both Charlie and the ECMO machine are doing. Surgery is extremely risky, considering he has been on blood thinners since Sunday.

One more thing that is not quite concerning, but something they are keeping an eye on. On Charlie's head ultrasound today, the radiologist saw a very teeny spot on Charlie's brain on one of the images. They did not see the spot on any other image. They are unsure what it could be, or if it was just artifact, or an error. They are repeating the ultrasound tomorrow morning. We are praying that it was indeed artifact.

Otherwise, Charlie had a good day. He lost one of his central lines during CPR, so they replaced it today through a femoral vein. The bleeding from his chest has slowed considerably. He is not putting out much fluid from his lungs and, on x-ray, they look great. He was even giving a few breaths over the ventilator today. All good news.

We are feeling cautiously optimistic. It is almost scary to be hopeful again, but we could never give up on our sweet pumpkin. Charlie has touched so many lives; he has had many visitors over the past few days. A great friend brought him a very special little bear he keeps under one of his hands at all times. She asked her father, who is a minister, to come visit us today and pray over him. We had other friends also come visit today. Charlie is slowly getting to know his extended family!

Noah is also getting to know everyone. He has everyone wrapped around his little finger, and noone wants to ever put him down! He gets cuddled all day long, which of course, means he expects to be cuddled all night long too! That's okay, though, because he has Mommy and Daddy wrapped around his little finger too.

Here is hoping tomorrow is filled with more good news - or even if there are no great strides made, we will happily take a stable day with no bad news :)

Lots of love,
Josh and Mina

Tuesday, May 18, 2010

Sit and wait

Today was another mostly stable day. Last night, they attempted to wean Charlie off of ECMO. He apparently did a very good job - he was able to be weaned down to less than half the amount of bypass that he had started on! However, close to change of shift they realized he had something else going on - the chest incision which had reopened had begun bleeding even more. They decided to go back up on bypass so that he wouldn't be stressed, and worked on fixing his bleeding. Dr. Sinha added more stitches to his wound, which appears to have slowed the bleeding down.

Of course, because of the bleeding we are back to the main game - fluid balance. They had to pump Charlie full of fluid and blood. Now he is puffy, and needs to be diuresed again. His Lasix is up; they are using the ECMO machine to help remove excess fluid as well. Once he is more fluid balanced, they will consider weaning him again. They also have to account for how much fluid he is losing through his chest incision as well as his chest tubes. It is a careful balancing act, which was difficult to begin with - and the tip too far into the negative is probably what caused us to land here in the first place.

So we continue to sit and wait. We visit our pumpkin daily and ask him to keep fighting. We promise him that we won't give up on him as long as he wants to fight, and remind him that we love him. We are still so grateful to all the friends and family that surround us with company, love and thoughts daily.

Hoping and praying for more stable, if not good news tomorrow.

Lots of love,
Josh and Mina

Monday, May 17, 2010

Another 'stable' day

We put stable in quotes because, honestly, we are learning that stable is truly a minute by minute description. Today was yet another mostly stable day. When we got to the hospital, we were told Charlie's ECMO machine had developed several clots. They needed to replace the machine before the clots traveled to his body. He tolerated the transition well, not needing any extra medication for support during the three minutes he was off of bypass. They are now beginning to very slowly wean him from the bypass - turning the machine down ever so slightly every two hours. We are hoping he is ready for this!

The second issue Charlie had today was that during the hour of CPR and chest compressions, his chest wound came apart again (just the the tissue, not the bone). The wound had been oozing since Saturday. Dr. Sinha considered placing a wound vac on it, but decided instead to suture it back up. Unfortunately, this caused a little extra bleeding, but nothing serious.

His second head ultrasound came back normal yet again, but we are still pressing for a CT scan of his brain so we can be better prepared for what his neurological function may be. He is not putting out a lot of urine, but the mindset is that since he is still putting out from his chest tube and draining from his chest, they are not too concerned yet about kidney function. While he is sedated on morphine and versed, as well as on a paralytic drip, he is back to moving a bit and opening his eyes at times. While we are thrilled to see movement, it is hard to see him so beaten and on bypass and know he is awake. While the medical knowledge supports the evidence he is not in pain (vital signs, etc), as parents, we fear that our little boy is hurting.

As a nice treat, Josh's parents brought us lunch for his birthday celebration. Not much of a celebration, being at the hospital, but we shared good food and some good times in our little family room.

All in all, another 'stable' day indeed - a bit of rest for us as well as for Charlie. As much as we are beginning to get tired of the word, we are hoping for yet another 'stable' day tomorrow.

Love,
Josh and Mina

Sunday, May 16, 2010

The roller coaster continues...

The past few days have been overwhelming with activity. We haven't updated out of sheer exhaustion, but we figure that if we don't update today, we won't ever remember everything that happened. It's already all a blur; we will try to recap everything.

The night after our last post, we were called in the middle of the night to be told that Charlie had needed a chest tube put in emergently. The pressure from his left pleural effusion caused too much stress on his heart, and his stats dropped drastically, almost to the point of requiring CPR. They were able to re-stabilize him with the chest tube, which put out about 300cc of fluid just in the morning alone. To put in in perspective, a soda can has 355cc of fluid. All of that had been building up in his left lung. We were told that while the left lung was improving, the right lung was beginning to look hazy. We were warned that a right chest tube would probably need to placed.

Friday early morning, we got another phone call. This time, they told us he had an unexplained hypotensive event. We were told they were getting concerned about his body brewing some sort of infectious process, but they weren't sure what. Antibiotics and antifungals were started, and they closed his abdomen in order to hopefully prevent any further infection. We continued on our 'wait and see' course.

Saturday, we realized Noah had been breathing fast, and since he has spent every day of his life at the hospital, we took him to the pediatrician. After a full examination and some discussion, we are pretty sure Noah is suffering from reflux - at times, he's had breastmilk come out of his nose, and probably does not help his congestion. We then left to visit Charlie again. We came in and a chest tube was placed on the right side. Our sweet boy looked the exact opposite from those early post op pictures. He was so thin, you could see the little bones in his hands. The sutures from his skull were visible, and his fontanel was sunken. For the first time, Charlie looked absolutely sick. The nurse explained that they had worked so hard to get him to diurese, that once the chest tubes started dumping fluid, he dried out too much. They were replacing his fluids with albumin once again. We noticed that his left pupil was larger than his right at times., and became concerned about his neurological status. The nurse agreed with us and told us she had been concerned too. We spoke to the fellow, who told us that she'd speak to the attending about getting a neuro consult. We left the hospital at about 8pm to go home for the night.

At about 10:45pm, we got the worst phone call a parent could possibly get. Charlie's heart had stopped beating at about 10pm, and they had been doing CPR for 45 minutes. They were getting ready to place him on ECMO, which is a bypass machine. We rushed to the hospital, and they were still doing the procedure. We called our families to be by our side, and they came to us immediately. The physicians told us they were unsure of what precipitated the event. The only clue they had was that Charlie suddenly dumped a large amount of fluid from his left lung, and shortly thereafter crashed. He had been down for a total of one hour. Dr. Berger stated that he believed Charlie was showing good neurological signs, such as shivering while being placed on ECMO.

We stayed at the hospital until about 3am. It was terrifying seeing our pumpkin after the procedure. He was bruised from the CPR. He was oozing quite a bit from his chest. The machine itself is something that looks like it belongs in a sci-fi movie. Our hearts broke that it had come to this. We left the hospital and spent the night at Mina's sister's house as to be surrounded by family for a little bit longer. This morning, we returned to his side, family and all. We were told he was doing pretty well, considering. His heart was beating on its own, although the ECMO machine was doing the job of actually circulating. His pressure was holding steady. His brain ultrasound showed no signs of bleeding (patients on ECMO need to be placed on a blood thinner, hence they have an increased risk of bleeding). We are now back to the waiting phase. Dr. Berger told us that Charlie will be on ECMO for a few days.

It is hard to not wonder if we are pushing Charlie beyond what he can handle. He looks like his in pain at times, and it breaks our hearts to see him so beaten and hurting. We are putting our trust in the medical team, who seems to have hope that he has a chance. We want so badly to be able to bring our baby boy home, but that's not up to us. We know that ECMO is his last chance to recover - if he does not recover from this, it will be time to let him go. We pray that whatever the outcome may be, that he doesn't suffer any more, and that we can be strong enough for him and for Noah.

So this roller coaster ride seems never ending - has it really only been three weeks since these boys were born? We can't believe all we have been through in such a short amount of time. The support from family and friends continues to be incredible - even if we are unable to tell each person individually how much it all means to us, every little message saying we're on your mind, and every status update on Facebook that states "pray for Charlie" warms us and reminds us that we are not alone in this fight - Charlie is not alone in this fight.

Since the boys can't be together anymore, we got them each a little plush sheep to keep by their sides. Here they are:

Charlie today on ECMO


Noah napping


We are expecting the next day or two to continue to be 'wait and see'. However, Charlie has shown us time and time again that he has his own plans. We will update whenever we can. Thank you all for everything.

Lots and lots of love,
Josh and Mina