The holidays...

The holidays are usually a time for cheer and laughter. Excitement and love...especially being a new parent of a wonderful little boy. And for sure it will be. The holidays for the new parent are a whole new ballgame.

But we are not only new parents. We are also bereaved parents. And that throws a whole different perspective on the holidays.

Things were supposed to be so different. We were supposed to be frazzled and probably out of our minds. We were supposed to be exhausted. We were supposed to be overwhelmed by juggling two little boys. Instead we are overwhelmed by juggling immense gratitude for the health of one and for the ability to watch him grow...and the incredible grief of losing another. We were supposed to be buying them both toys.

It was supposed to be different.

There are so many things to be thankful for. Noah is the biggest blessing I could have ever asked for. And I am very thankful for having had Charlie in my life. Such an amazing boy. But I can't get past what these holidays could have been. I am trying to keep a smile on my face, get through each day, but my heart is broken. I will do my best to enjoy what I can, and remember that Charlie is in a good place...even if my selfish heart wishes he were here with me.

Please be patient with me in the coming weeks. I burst into tears at the drop of a hat...I withdraw easily...and now you understand. I know I will never be the same person again...but hopefully I can be close to that. Just be patient. I'll be back.

With love,
Mina

One year changes everything...

(A note from Mina)

A year ago today, I was staring blankly at a second thin pink line on a pregnancy test. Convinced it was a broken test, I took another one. Then another one. I immediately thought they were too faint to be real, so I went to bed, and retested again in the morning. Then a fifth time. That evening, at dinner, I sheepishly told Josh, "Um, I think I'm pregnant? But I'm not sure. Maybe it's just a hormone secreting tumor." My darling husband looked at me like I was somewhat crazy and said "Um, okay..." I was convinced it couldn't possibly be. Who gets pregnant on their first try?

That Saturday I took a sixth test (I know, I'm neurotic). No longer able to deny a big plus sign staring me in the face, I went to work in a bit of shock. My OB saw me, ordered a blood test, and there it was, confirmed. Pregnant. Me being one of "those" people, googled the level of HCG my result showed me. From what I saw online it was very high compared to what the charts said someone at 4 weeks and one day should be. Later that evening, after telling my sisters, Lucy joked that maybe I was having twins.

It's amazing how the events over 4 days one year ago can still seem so clear to me now. At times it feels like forever ago. At other times it's like it just happened. Josh and I have been through more in the past year than most people will see in a lifetime. We had just gotten back from our BIG trip to New Zealand. I finished nursing school, became a nurse. We both started new jobs. We moved to Annapolis. We had two sons. We lost one. We became part of the CHD community, whether we ever wanted to or not. We learned to cherish Noah more than ever, because we've been slammed with the alternative. It has been a rollercoaster with more tears than I care to admit. More heartache than anyone should ever have to know. But more also more joy than I had ever imagined.

I look back on that extra thin pink line and how my life changed instantly, in that moment. I can't say I regret a single part of what has transpired in the past year. Of course, I wish Charlie were still with us. I miss him and I hate that he suffered and fought so hard, and the passed away. But he has taught me so much, and filled me with so much love. And of course, without Charlie, there'd be no Noah.

So of course I am heartbroken. And still feeling like a part of me is missing. (It is.) But I look back on the past year and think, I am a lucky woman to have been blessed with such two amazing little boys, as well as an amazing husband. I'm a completely different person than I was 365 days ago, as is Josh. But everyday I hear throaty giggles or see a gummy grin flashing at me, or hear about how our story has made an impact, I know we are really and truly blessed. A year ago, I would have told you I could never survive what has happened - I would never make it through. But here I am. Still standing.

Indeed, one year does change everything.

Been quite a while...

So it surely has been quite a while since we updated. When time starts moving, it sure moves quickly. Mina got a postion as an RN at Sibley, working in postpartum. It has been a little rough for her, being away from Noah, but so rewarding to help new moms and new babies during such a joyous time! Working in maternity is a true blessing.

Noah is growing like a little weed. He is almost 15 pounds already - meaning he has tripled his birth weight in just 4 months! He has started to laugh, and smiles all the time. We feel so blessed to be his mom and dad; every day with him is such a miracle and blessing!

We thought we would just update, if anyone still reads this, that we are doing okay - just taking it day by day. Some days are harder than others, but we are slowly pulling through. We have decided to start a team in the first annual Congenital Heart Walk - Team Charlie. We are asking for people to either join us or donate to our team at this link: Team Charlie. Please help us raise awareness and money to benefit two great organizations assisting folks living with CHDs.

Also, tonight, just please say a little prayer for the people who are affected by CHD. I've gotten to know so many people who are helping their child fight for their lives daily, or whose children have unfortunately lost the battle against CHD. Pray for the mommies, daddies, brothers, sisters, babies and grown ups, and little angels in heaven, all touched by the number one birth defect in the US - congenital heart defects. Thanks!

Father's Day Weekend

This weekend, we finally came out of hiding and visited with a few people. On Friday morning, we watched the USA match at the Hammers' house with several friends. Noah got to meet some new buddies of his, Caleb, Amanda, and Jonathan (such cuties). Saturday, we got to visit Josh's grandma; it was her first time getting to meet Noah. She's had a bit of a rough couple of months, and with everything that had been going on with us, we just never got a chance to visit. In the afternoon, Patience, Jordan and Eliana stopped by to visit on their way to the Eastern Shore. It was our first time seeing them since the boys' birth, and it was so good to finally see them. The kiddos eyed each other warily while visited, and we can't wait to set up future play dates, and hopefully see them again soon. As the only other people we know to have gone through this, they have been so kind, so understanding and so wonderful to us throughout this whole ordeal. We know we couldn't have made it through without them.

Today was not only Father's day, but a big day for Mina's family - Brasil soccer! We headed to Lucy's house to watch not only the Brasil match, but the earlier New Zealand match as well. Needless to say, we were pleased by both results. While we were there, Noah and Maya got a little more acquainted and played (or maybe more wary staring). There was lots of family time, and we had tons of fun.

At the end, it was a mostly good Father's Day - yet bittersweet. We can't forget that one month ago today, our family experienced a loss we can never truly recover from. It was a good day - but we remember our buddy Charlie and how much we miss him today.

Noah lovin'

Has it really been 7 weeks since delivery? Sometimes it feels like forever ago, sometimes we feel like Noah is still a newborn! He's been doing well, he has quite a bit of reflux and colic. Some nights we get some sleep, others...well, thank goodness for coffee. No matter how tired we are, though, he brings smiles and laughter to our daily lives, and we are absolutely in love with this little man.

We found a great book online this week, called "Always My Twin" by Valerie Samuels. It's a book about being a surviving twin. We think it is very important for Noah to always know about Charlie, and know what a brave little soldier he was. We've also started to sort of get into a routine, somewhat, now that we are settled back at home. The next step, Mina begins the job hunt as an RN which is a little difficult at the time. Financially, because we are living with Josh's parents, it isn't completely necessary however, we'd like to work on what our primary goal of moving here was - saving to buy ourselves a house! So hopefully Mina will be able to find something soon. She'd love to go back to where she worked before, and hopefully it will work out!

Lastly, our friend and amazing photographer Janete came to take pictures of our little munchkin last weekend. She did such an incredible job, we can't thank her enough. Thanks Janete!!! Here they are...Mr. Noah, 7 weeks old, cutest baby ever (and we're pretty sure he knows it):

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.

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

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.

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

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

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

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

Holding Steady

Brothers

Charlie continues to recuperate from his emergency stomach surgery. His blood pressure and heart rate are stabilized. He is back on a higher dosages of Lasix to help his kidneys and Fentanyl for pain and to keep him sedated. Charlie can still move his mouth and eyes and wiggle his toes and fingers. Today the doctors found a pleural effusion on his left lung. They hope he will be able to get rid of the fluid through the Lasix. If they are unable to remove the fluid Charlie will need a new chest tube. Tomorrow, they will remove the packing from his abdomen and close it since the drain has shown no signs of active bleeding.

Aside from these new complications we have noticed that Charlie seems to do better with his family by his side, particularly since Noah was allowed on the CICU. It's almost like Charlie can feel his brother's presence. It really makes us that much happier that we are able to all be together again.

Lots of love,

Josh and Mina

Emergency Surgery

Charlie is definitely a fighter! He's doing slightly better than he was late Monday night and early Tuesday morning, but is still very sick despite being stable. His pressure and blood count started dropping pretty seriously beginning at midnight, and his lactate began to elevate. At 3:30am, we got a phone call that Charlie was bleeding, but they were aggressively keeping up with it, and they were just giving us a heads up. At about 6am, we got a phone call that Charlie had taken a turn for the worse. They needed to operate on Charlie immediately and asked us to come in right away. We were there within 15 minutes. He had been receiving albumin and blood, and they were getting him ready to go to the OR. The doctor explained to us that they wanted to do exploratory surgery to find the source of the abdominal bleeding. Since midnight, his abdominal girth had grown 5 centimeters. She told us that their biggest concern is that while trying to clot off whatever was bleeding, they would cause damage to his Sano shunt. She warned us that there was a chance Charlie would not make it. We were able to spend a little time with him before surgery. We waited anxiously and it didn't take long for them to to come out and tell us what happened - they found a small laceration on Charlie's spleen, and a couple of blood vessels within his abdomen. They left his wound open to drain by vacuum, and were able to repair the vessel damage. They are hoping to close his abdomen within 48-72 hours.

Now we are back to waiting. Every now and then, his heart rate and blood pressure will occasionally escalate, sometimes a response to pain, sometimes for unknown reasons. He is back to having some pretty serious edema throughout his body, so they are really pushing the Lasix in order to get him to diurese. His platelets are down to 68,000. If he reaches below 50,000, they will have to replace those with more blood products. The good news is, Dr. Sinha came to us to reassure us that everything heart-wise looked great. The general surgeon also told us that everything was looking great post operatively. His lactate came back down. The rest of his blood count looks good.

We are deeply grateful for the flood of prayers and encouragement we have received for our brave boy. This journey has been an emotional roller coaster. Each day brings new highs and lows. In a few short hours this morning, we felt every human emotion imaginable. Even though it is extremely difficult, we continue to place our trust in God. We know he is in control and has a purpose and a plan for all of this.

Slow and steady wins the race...

Milk coma + Garden State Soundtrack = Happy Noah

Charlie getting his tape changed around his breathing tube

Hello all! We haven't had much to report, hence the lack of update yesterday. Charlie is still regaining his movement very slowly. The doctors have explained that the paralytic he was on is excreted by the kidneys, and since he had some acute kidney failure in the beginning of his recovery, it is just taking that much longer to get it out of his system. He is slowly moving more though - we've gotten lots of finger squeezes, quiet gazing, and twitching of arms and legs. He is also beginning to breathe over the vent on his own - great signs! As of tonight, he will no longer be on total parenteral nutrition and will be only receiving breastmilk - hooray! He is also no longer on insulin or fentanyl. However, they would like for him to diurese a little more, so they are adding another diuretic. His kidneys are working well, but they just want to push the remaining fluid out. He is also going to begin the methadone tonight to help with his fentanyl withdrawal.

Noah is quite an opinionated and feisty little dude. He's going through a growth spurt, we think, so mommy has turned into his own little snack bar. We've also figured out he enjoys listening to music now that we have our iPod connected to some speakers at the Ronald McDonald House. So far, he seems to enjoy the Garden State and New Moon soundtracks. We're trying to keep it mellow for him!

Reunited, and it feels so good!

Brothers, together at last :)

Our Family

For the fourth consecutive day Charlie's miraculous recovery continued to impress his doctors, his nurses and his family. His physical appearance, and the difference since last weekend, is incredible. His edema is now localized exclusively in his lower extremities. His heart rate and blood pressure are trending toward normal levels with only moderate assistance from his dopamine drip. His kidneys with help from Lasix are functioning better with each passing day. The paralytic medication is still working its way though his body but he can now move his tongue, blink his eyes and wiggle his fingers and toes independently. Charlie's breastmilk feedings have been increased to 3cc per hour, and TPN (total parenteral nutrition) is being given intravenously. These will help him gain energy and enrich his diet beyond the simple dextrose fluids he has received since birth. He remains on the ventilator that so far has done virtually all his breathing for him. Charlie must demonstrate the ability to initiate breaths, inhale and exhale without assistance before he can go home. Today the doctors took out the last remaining chest tube and his peritoneal dialysis tube. The nurse also removed the dressing over his chest incision. The gauze and Tegaderm is removed because the exposure to air helps the scar heal faster. The incision currently runs the length of Charlie's newborn chest nearly to his belly button but as he gets older the scar will shrink proportionally as he grows. Seeing his incision for the first time was a mixed emotion. On the one side, it is a source of joy that his recovery post-Norwood operation is going very well. On the other side, the few sutures are a reminder that this journey is far from over and that in six short months the surgeon will reopen his chest again to perform phase two, the Glenn Procedure.

As Charlie's condition steadily improves we are finding out how difficult it is to live in the moment and take things one day at a time. We try to temper our excitement with caution and awareness that his situation remains critical. It is difficult to remind ourselves of the long painful journey that lies ahead as we celebrate each small yet significant achievement.

Also, our nurse, Amanda, gave Marina an early Mother's Day gift by pulling a few strings and allowing Noah into the CICU. For the first time since their birth, the twins were together in the same room. We snapped up two quick photographs, including our first family portrait. It was completely unexpected and a wonderful experience. At long last our family was together.

We also had quite a bunch of visitors. We had Josh's parents visiting, as well as Marina's sisters, and our niece and nephews. It was wonderful to have everyone together! It was truly a great day, and the best Mother's Day present a girl could ask for - a son healing, a family reunited, surrounded by laughter and love.

Lots and lots of love,

Josh and Marina

The boy cousins, minus Charlie

Cousin Maya gives Noah a hug

Mina, Noah, Felix, Patrick and Maya

Good Vibrations

Noah hanging out in his Boppy

Sleepy time

Charlie's sweet little hand

Pumpkin resting up - he has a lot of healing to do!

Today was another great day for both boys. Every day, Noah gets better at feeding. Since he was born at 36 weeks, he's had a bit of trouble getting the hang of it, and it's still a tough task every time - but getting a little better nonetheless.

Charlie is also doing fantastic. His dialysis is turned completely off, not just draining. His epinephrine continues to be off, his dopamine is down to 5 (yesterday it began at 13). He had two chest tubes pulled out. He is still putting out urine on his own, though they are still giving him a low dose of Lasix so that they can keep ahead of the edema (his lower extremities are still pretty swollen). He has begun breastmilk feedings via nasogastric tube, only 2cc's an hour so that they can make sure he tolerates it. His Fentanyl is keeping him sedated and comfortable, but it has been turned down as well. There were glimpses of movement today, but he's still pretty much out.

The plan for tomorrow is to begin weaning him off the vent if possible. They are going to have to place him on methadone to help him withdraw from the Fentanyl, so we will see when that will happen. Hopefully they will be able to wean completely off of the dopamine soon, and hopefully his blood pressure will remain steady!

The power of prayer is such an amazing thing. We are praying that Charlie will be as comfortable as possible through this healing process, and that he holds steady as he has. The support has been so incredible; so many people offering to help us and watch Noah whenever we need it. The prospect of having twins and having one hospitalized was terrifying at first - we couldn't fathom how we would be able to pull it off. Thank you so much everyone for your kindness and help! Even the simplest words of encouragement mean the world to us. We will update tomorrow, as always!

Lots of love,

Josh and Mina

A pleasant surprise!

Noah is not so sure about this bath business....

Charlie after his chest closure!

Today, the surgeons were set to begin the process of closing Charlie's chest again. They had planned to do this one to two stitches at a time. The surgeons put in two stitches and watched carefully...after Charlie showed that he could handle the first two stitches, they decided to try to close the chest entirely. Charlie did wonderfully! His vitals remained stable throughout the procedure as well as immediately post operatively. They turned the Vecuronium off (the paralytic). They said that he should begin sporadic movements 12 hours after turning it off, and it should be out of his system completely by 24 hours. They will be weaning his vent throughout, which they have been doing since yesterday because he was getting too much help. Praying that our pumpkin will be breathing on his own soon enough! He will remain sedated, obviously, because of the post operative pain, not to mention he is still hooked up to about a million tubes. His dopamine drip is also being weaned down - from 13 down to 10, and hoping that it will be turned down to 5 soon enough. His epinephrine remains off. He is making more urine than ever before, and his peritoneal dialysis has been turned off. The tubing is still in, just set to drain in case his body needs to drain anything extra. Charlie has proven to be a fighter! We are hoping the night remains stable - his pressure, heart rate and pulse ox have remained stable throughout.

Noah is doing extremely well too. For such a little peanut, he sure has quite a bit of personality! He makes us laugh and giggle everyday with his expressions and sounds he makes. He had his second pediatrician appointment yesterday. He had his second metabolic screen done, and another quick lookover by his doctor. He looks great, and he is back up to birth weight! We are slowly getting the hang of feeding, and though we don't have much of a routine, it's still been a wonderful experience.

We have been through quite a rollercoaster ride since the 26th of April, but we couldn't be prouder of our two boys! They both have hurdles ahead of them - some more serious than others - but each one is stubborn and a little fighter in their own right! We are truly blessed! Praying for another good night :) Thank you all so much for your prayers as well. The power of prayer is truly amazing. We really are the luckiest family!

Lots of love,

Mina and Josh

A stitch in time

Charlie had a very good night. He steadily improved as his doctors had hoped and by morning he was weened off the Epinephrine. During the day, his lactic acid level fell below 2.0 for the first time and this evening is holding steady at 2.0, right where his doctors want him. The edema in his chest and legs continues to become less noticeable, a result of the dialysis and improved urine production. Charlie is now consistently producing more than 10 cc's of urine an hour. His fluid levels have dropped enough that the doctors finally scaled back his dialysis. His heart rate and blood pressure have also improved since being stabilized last night. In summary, everything the nurses and doctors have been monitoring improved today!

Now on to the most important next step, the chest closure. His surgeon has decided to move cautiously and gradually close his chest over a period of several days. Each day the surgeon will add a couple of stitches then monitor Charlie's vital signs to make sure they never put him in a situation with too much to handle. While moving slowly with the chest close has its obvious benefits it also carries a major risk. Each time the surgeon opens Charlie's chest they expose him to an increased risk of infection. Charlie's nurses and doctors have been very attentive to the risk of infection during the entire process and always take extra precautions to maintain a sterile environment. Tonight's prayer is that over the next few days Charlie will be surrounded with God's protection.

We never cease to be amazed by all the love and support. We feel it with us everyday and it has meant the world to us. Thank you all so very much!

Mina and Josh

If at first you don't succeed, try again.

Today was scheduled to be the day the surgeon closed Charlie's chest. It's an important milestone in the recovery from the Norwood procedure. A closed chest indicates that the heart is functioning well and that the long, slow recovery will begin. After close, Charlie will remain hospitalized for weeks of observation to see how the rest of his body responds to the procedure. Closing the chest after the Norwood procedure is a tricky and unpredictable process. Sometimes a patient will show signs of regression within minutes of surgery and the surgeon will have to reopen the chest. Unfortunately, after less than fifteen minutes Charlie regressed. His blood pressure dropped and heart rate increased as a result of too much fluid in his chest that exerted pressure on his heart and lungs. The surgeon responded by quickly reopening his chest to relieve the pressure. After a scary couple of hours Charlie stabilized.

Tonight Charlie is resting comfortably. He began receiving Epinephrine and Dopamine right before the attempted chest close and will continue to receive them in decreasing doses throughout the night. The hope is that Charlie will improve enough overnight to be back off Epinephrine by morning. Charlie continues to lose fluid while on dialysis and is now producing 10 cc's of urine per hour. There is a chance that his surgeon will attempt to close the chest again tomorrow if enough improvement is made. Please pray that God grants the surgeon wisdom to make the right decision for our sweet boy.

With many thanks and much love,

Mina and Josh

Chest Closure

Josh had to go back to work today, but Mina and her dad headed over to Children's in the morning to visit Charlie. Mina's wonderful friend, Jordan, came by shortly after they got there to meet Charlie and take care of Noah for the day. Just walking into his room was amazing! He has lost so much fluid, it's incredible. Yesterday's total was 320cc of output! By the time we left today at 6pm Charlie lost an additional 270cc! His face, chest and belly have compressed almost back to their size and shape at birth just one week ago. The little socks which were digging tightly into his ankles yesterday were loosely rolled around his ankles today. He is putting out 5cc of urine an hour, which is the low end of what they want to see him putting out. His dopamine is still lowered, and his epinephrine is still off.

All of the doctors and nurses were thrilled with this development. So much so that closure is set for tomorrow, late morning/early afternoon! Though we knew the moment was coming up, it makes it so real to have it so close. It warmed our hearts so much to hear the genuine excitement in the doctors and nurses voices about our brave son's progress. We will be sure to update everyone as soon as we can and as always thank you everyone for your prayers!

From the bottom of our hearts,

Mina and Josh

Today was a good day

First, some pictures of the little men:

Noah snuggled in his car seat

Mommy gives Charlie a kiss

Holding Charlie's hand

Our brave boy

Noah napping with his Aunt Pat

Onto the Baer bunch news. After a day of rest, Charlie was given an opportunity to prove to his doctors that his body had begun to recover from his Norwood and subsequent modification to his Sano shunt. Charlie made some significant progress. He has begun making urine on his own despite being on dialysis which indicates his kidney failure may not be as serious as once feared. This afternoon for the first time since the Norwood procedure Charlie is not being administered any Epinephrine. Also his Dopamine dosage has been reduced. His lactic acid level is now 2.9. The physicians want it below 2.0; two days ago it was 14.9. His chest x-ray today indicated that there was very little fluid in his lungs. He is looking much less puffy because of his output, which means we are looking at possibly closing his chest tomorrow or Tuesday, latest. We know that we are going to face a lot more hurdles once that happens, but we are excited for this next step forward! From 7am yesterday to 7am today, his output was 350cc. Today, from 7am to 3pm, it was 110cc. There was 23cc of urine in his diaper alone! (His foley leaks a bit). All wonderful news, considering he was putting out nothing at all before dialysis!

Noah is doing well, being spoiled rotten already by his mom, dad, aunts, cousins, and grandparents. He is such a snuggly one! He's been doing well on the sleeping front, sometimes better than others, but Mina was able to nap today while not at the hospital. He doesn't like being put down very much though; we think it's a combination of getting spoiled, and maybe he just misses sharing his space with his little brother. Hopefully, it won't be too long before they can be reunited!

We know this is going to be a roller coaster ride, but it feels so good to have a day of good news to share. We will be sure to call tomorrow when we have a better idea of the surgeon's plans. Please pray for another good day! Thanks everyone!

Noah's First Appointment; Charlie's Second Procedure

Hello all! We've had quite a busy couple of days, with Mina and Noah getting discharged from the hospital, getting settled into the Ronald McDonald house, Noah's first pediatrician appointment, and some setbacks for little Charlie. We'll try to go over it all, and hopefully we don't forget anything!

Yesterday, we had been unsure of whether or not Noah would be able to go home because he was jaundiced. He spent Thursday night in the nursery under bili lights, rockin' his little sunglasses. Mina pumped lots of breast milk to make sure he got extra supplementation if needed. Yesterday morning, his jaundice had gone WAY down, and he was allowed to go home. Hooray! We had our first appointment this morning, and he got a clean bill of health. His weight has been stable, his jaundice is under control, and he's eating like a champ. We go back in a few days so that he can have his second PKU screen done, as well as another weight check. The way he's been snacking, we're pretty sure he'll be okay.

Charlie, however, has been fighting hard. His urine output has been minimal (at times none). His O2 sats were higher than they would like, and his lactate was still rising. His blood pressure was lower than they would like. The doctors were unsure of the course of action to take. They were between putting him on ECMO to allow his body to rest and recover, or just waiting and seeing if he could recover. The compromise they came upon was that they would go back into his chest (which is still open from the Norwood), and put a stitch into the Sano shunt they placed. Their reasoning was that maybe the shunt was too big, and allowing too much blood to enter the lungs, and not enough to flow through the body. They were hoping this is why the kidneys were not being perfused.

The procedure went well, but only half of what they had hoped would happen did. The lactate levels are down, his oxygen levels are down to where they should be. The kidneys, however, are still not functioning, and his blood pressure is still low. Pretty much the end result of this procedure is that, overall, he is a little better - just not exactly where they would have liked him to be. The way they worded it was, this is where they would have liked to have seen him right after surgery. He just took a little longer to get to this point than we had hoped.

As of last night, they placed him on peritoneal dialysis in order to give his kidneys a break. The dialysis is going well so far. His kidney function tests are not very good, and at this point they are trying to figure out if any permanent damage was done, or if maybe there are some congenital issues they were unaware of. He had a renal ultrasound today whose results we are waiting on, and will have more renal function tests this weekend. We are praying that they will find what may be wrong, so we can work on how to fix it.

We have been blessed to have our family members here on a daily basis thus far. Noah has always had someone watching him and snuggling him so we can spend time with his little brother. The staff here is incredible - the one time it was just the two of us, the unit clerk stayed with Noah so we could talk to the doctor together. It has been a really difficult, but amazing experience. Thanks so much for the prayers and the love. If you'd like to know how to help, what we need the most now more than ever is prayer. We've already seen the power of prayer at work all week! Please keep them coming, especially prayer for strength - that we can all be strong enough for Charlie when he needs us the most.

Lots of love,
Josh and Marina

Day of Surgery

Spending time with Charlie before his Norwood surgery

Mommy snuggling Noah

Noah gets a tan

Our brave little boy, a few hours post Norwood procedure

As we are sure many of you figured, today has been quite a roller coaster ride. We went to Children's early this morning to be with our little buddy before surgery. We got to hold him and snuggle him, and remind him that he needs to be strong. He listened quietly and attentively, and we dropped him off at the surgery wing with his CICU nurses at around 8:15am.

Josh remained at Children's with Mina's dad, and Mina went back to WHC to be with Noah. Josh had a pager which gave him surgical updates, which he posted on Facebook and texted to Mina to make sure everyone was in the loop. His surgery went pretty smoothly; towards the end he had trouble stabilizing his blood pressure and we were unsure whether he would have to be placed on ECMO (Extra Corporeal Membrane Oxygenation) or not, however, he stabilized and was able to return to the CICU without it. Mina was able to come back from WHC in the evening to see her boys. Josh is staying the night with Charlie in the CICU.

And so now, the hardest part begins. So far he has been relatively stable. His oxygenation is pretty good. He had a bit of bleeding (expected with this surgery), so he is currently being transfused. His lactic acid levels are slowly rising, which as of now, the doctors are keeping a close eye on. He is also not putting out a lot of urine, so they are also keeping an eye on that. His heart rate and blood pressure were not stable, so they lowered the dosages of Dopamine and Epinephrine. Since then, his BP and heart rate have stabilized.

So, thus far, the news is mostly good. We did not expect to come out of this with no issues, so we are taking it in stride. It is difficult to see our little pumpkin this way, but we are so proud of him for being so strong so far. Charles Matthew is truly one amazing little guy!

As far as Noah, due to his prematurity and his breastfeeding issues, he is now pretty jaundiced. He is getting his little suntan in the nursery at WHC, which is why Mina spent a fair amount of time here - making sure he's getting fed and his jaundice is getting under control so that he can come home tomorrow with her.

Another answer to a huge prayer - somehow, although they have been full for a while, the Ronald McDonald house has just enough room for us starting tomorrow after discharge from WHC. We had been told at first it was full; we were then told only two people could stay there - Noah counting as one of the people. Now, all three of us can stay together! Pray that Noah is able to come home tomorrow It has already been quite a beginning, but there's one thing we are both quite sure of...we are both possibly the luckiest people ever to be blessed with such wonderful babies! No matter the hurdles, they're already teaching us so much. There have already been lots of tears, of course - but lots of joy too. We can't wait until our family is all together again!

We will update as we receive more information, probably towards the end of the day. Sorry if we don't get back to people personally - we are a little overwhelmed, but trust us when we say we appreciate every single little word of prayer and encouragement. Yet another reason we are blessed.

Love,

Josh and Marina

Charlie's Surgery Tomorrow

This afternoon we were called in for a meeting at Children's Hospital with the surgeon who will perform Charlie's Norwood Procedure. The surgeon drew us a few illustrations of Charlie's heart and explained to us in detail the operation and the risks associated with it. The surgery is expected to take approximately six hours and is scheduled to begin at 8:30 am tomorrow. We will have a transport team take Marina to Children's before the surgery to spend some time with him before the operation. Children under 12 are not permitted in the Cardiac Intensive Care Unit (CICU) so Noah will not be able to join us. Once they take Charlie, Marina will return to Washington Hospital Center to be reunited with Noah. Josh will remain at Children's to wait on the results and spend the night with Charlie while he recovers. The twins are only days old and already have us wishing we could be in two places at once. The Norwood Procedure is very complex and affects virtually all of his vital organs. One major risk during surgery is bleeding. Charlie will likely need several blood transfusions during the operation. With so much uncertainty around his operation and recovery, Marina and I really have no idea what the next few days and weeks will require of us. All we are left with is the reality of the situation that since diagnosis we have tried so hard to ignore. We are overwhelmed by the outpouring of love and support from our family, friends and colleagues. We ask that everyone keep Charlie in their prayers tomorrow. Charlie has surpassed his doctors expectations up to this point and we continue to hope that his strength will not leave him during the difficult days ahead.

With Love and Many Thanks,

Josh and Marina

The boys are here!

Charles Matthew Baer

4/26/2010 @ 8:09am

5 pounds, 4 ounces

Noah Raymond Baer

4/26/2010 @ 8:08am

4 pounds, 15 ounces

Noah Raymond and Charles Matthew were born yesterday, at 8:08am and 8:09am respectively! Noah was 4 pounds, 15 ounces, and Charlie was 5 pounds, 4 ounces. Noah was breathing a little fast, so he went to the NICU to transition, but is rooming in with Mommy and getting the hang of breastfeeding little by little :)

Charlie is also doing very, very well! He was intubated shortly after delivery, and a quick 2D echo was done at Hospital Center to see the severity of the ASD they were expecting - only to find that the Foramen Ovale was closed a lot less than previously anticipated! He was stable and transported to Children's with Daddy by his side. The nurses at Children's commented on how feisty he is for an HLHS baby! He is very squirmy and doesn't like to be messed with. He was doing very well breathing-wise, so he was extubated yesterday evening, and has been on room air since! He is doing really well, only on the prostaglandin to keep his PDA open, and Zantac, because he is not eating. Mommy got to hold him for the first time today, since he is extubated. Hopefully, Daddy will get some snuggles in before the surgery.

The surgery date is not set yet, and will be decided by tomorrow afternoon. It is looking like either Thursday or Friday. Mommy and Daddy are loving their new roles, albeit getting very little sleep. We both feel so blessed to have these boys finally here! The power of prayer has proven itself once again, and we thank everyone for keeping us in their prayers the past few weeks. The ride has just begun, but we are thinking positively, and are excited to see where it leads us! We will update tomorrow afternoon when we find out when Charlie's surgery will be.

Love, Mama and Papa Baer :)

We are all set!

So today's appointment was relatively well. We had a slight scare where Charlie had a decel during the NST, or, his heart rate dropped for about a minute. We were sent to labor and delivery for extended monitoring and everything was fine. Mina is back home for the weekend!

Delivery is set for 0730am on Monday! We have to be at WHC at 0530 just so Mina can have her labwork done, get prepped and all of that jazz. Charlie will be going to Children's following an echo which will determine or not whether he will need to be catheterized. Josh will be following him there. Hopefully Noah will not give us any reasons to worry on Monday.

We will update whenever we can, as soon as we can. Thanks for the prayers, everyone, and let's all pray for an uneventful weekend! :)

Great news!

So Mina had another NST/BPP today, both boys once again did great (Charlie certainly dislikes being monitored and kicked the monitors a LOT during the NST!). Dr. Downing did another cervical check, and the great news is, since Mina is still 2 cm, she did not need to be admitted!! She's back at home, resting and happy. She is battling a bit of an ear infection, but Dr. Downing gave her a prescription for eardrops so hopefully it will end up clearing up soon!

Next appointment is Thursday, we are bringing Mina's hospital bag just in case, but hoping to hold out until Monday, when Mina is scheduled to have her c-section. We will update on Thursday! Thanks for the love and prayers!

35 Weeks!

Today we had our NST/BPP/Growth scan/cervical check appointments at WHC. NST and BPP were fantastic! The boys were having a party in there. The growth scan was alright - they get more inaccurate as the boys grow, because they are so squished in there. However, they each only grew about half a pound - they should have grown a pound since last time. So while we're not TOO concerned, we certainly are a little concerned. Cervix was unchanged, which is wonderful.

So the game plan is now as follows - Mina will go in for her NST/BPP on Monday morning, and follow up with Dr. Downing afterwards. After that, she will probably be admitted to the hospital for the remainder of the pregnancy, and we will deliver the boys either on April 26th or 27th (unless they decide to come earlier).

It feels very good to finally have a game plan. We are praying the boys are willing to stick to this plan :) We will be sure to update everyone on Monday.

Echo & OB Visit

Hello! Today we had Charlie's monthly echo as well as another OB visit for Mina. The echo went fantastic - Charlie's heart function continues to look good, and his foramen ovale is actually still open. Dr. Donofrio explained that she had been anticipating it to progress to closing, which is why she had wanted to deliver at Children's - but at this point, she feels comfortable delivering at Hospital Center. Great news! Dr. Donofrio stated that Dr. Downing was beginning to feel more comfortable with delivery next week, but she wants to hold off a little bit longer to allow the boys' lungs to mature a little more.

We then went over to Hospital Center, where Mina had her NST and BPP - once again, both babies are doing great. Heart rate tracing was reactive on both children, and they both got an 8/8 on their BPPs.

Lastly, we stopped by Dr. Downing's office just to check in with him. He seems to be comfortable with the idea of holding off on delivery and being put on hospital bedrest next week if need be. He then checked Mina's cervix, and unfortunately she is now 60% effaced and almost 2cm dilated. Not exactly the news we were looking for. We are going back on Friday, where she'll be checked again, and we'll have a better idea of the game plan then. Until then, Mina is off her feet and desperately trying to keep the boys cooking!

It's finally real now, though, that within the next two weeks, these two little boys will be making their debut. We are so excited to meet them, scared of what is to come, but hopeful that it will all turn out alright. Thanks again for the prayers, and we will update everyone again on Friday after the next appointment!