Saturday, August 11, 2012


I want to start off by apologizing for the lack of updates since we have arrived back home with our little lady about 4 months ago. It has been a whirlwind of emotions to say the least. I figured never a better time than now to fill everyone in on what the Rosene family has been up the past few months. Where do I begin...

The day we brought Charlotte home from the hospital was one of the craziest days of our lives. We had planned on staying up in LA for about 6 weeks and instead found ourselves loading our little miracle into her car seat after just 2 weeks. I know we shouldn’t have been surprised at the speed of her recovery but Jon and I found ourselves looking at each other like dears in head lights not knowing what to make of all this. Those 2 weeks felt like years and we both felt a sense of disbelief that we were actually taking her home.

I will never forget walking through the front door of our apartment carrying our sleeping Charlotte in her car seat. We placed the car seat softly in the middle of our living room and waited for her to wake up. Take note that we had just been able to hold her for the first time just days before so the thought of somehow holding her wrong and causing her any pain was paralyzing to me. Now for the real stuff; being parents!

The first few months were tough to say the least. Charlotte was not an easy going, quiet baby. She would scream and scream and scream for hours and hours every day. We would touch her wrong and she would scream, we would look at her wrong and she would scream. Jon and I would take turns just walking her around trying to sooth her. We were warned that a few of the heart meds she was given in the hospital might stay in her system for a while, making her uncomfortable. We then discovered she had acid reflux which was contributing to the hours of nonstop crying. Our pediatrician put her on medication for it, which we hated, so we ended up taking her to a chiropractor. Much to our surprise she was completely healed of her acid reflux within weeks of going to the chiropractor and is now completely off all medication. Praise the Lord!!

That first few months being home were the hardest months I have ever gone through. I felt as though I had been through a war and was sent home and told, “OK! Now live normal.” Normal? I had no sense of “normal” and felt completely lost in how I was supposed to feel after that whole experience. Everyday turned into survival for me. I would look at Charlotte and lose it. Her crying felt like someone was ripping my heart out of my chest. I felt helpless not being able to sooth her. I would walk around our apartment crying with her for hours. Thank God for Jon. He stayed so strong for his girls through the whole experience. I wasn’t able to be alone with her. The fear of something going wrong and somehow it being my fault made it hard for Jon to get any alone time.

I would compare her to other babies who were born around the same time as her. They would just hang out in their mother’s arms and seem so happy and content. Some would even just fall asleep while being fed. That was totally foreign to me. I wasn’t even able to take Charlotte to the grocery store or out to run errands because if she woke up the screaming would start and who knew when it would be over. We became prisoners in our apartment. I didn’t want anyone over because the idea of having to entertain someone and hold a conversation while feeling extreme anxiety with Charlotte didn’t sound fun at all. There were many restrictions on the ways we were able to hold her since her sternum was still healing. This made it hard for me to allow anyone to hold her. So I figured if no one came over and I didn’t take her anywhere she would be safe. I know now that this wasn’t healthy. I started living a very isolated and lonely life. I didn’t feel like anyone understood or could relate to what we were going through. These were the lies I was living with every day. I had to fight and pray for my freedom from these thoughts that were disabling me from enjoying being a mother. I ended up seeking help to sort out my emotions. Thank God for the people who helped me navigate through that confusing and extremely emotional time. I suffered some PTSD and was able, with help, to recognize the lies and irrational thoughts that were floating around in my mind.

Every day I started off with a personal pep talk. “You can do this! You can get through this day. Lord give me strength.” Then, we woke up one morning and it was different. I will never forget laying Charlotte down on her play mat and after a few minutes she looked content. She wasn’t crying! Noon came and Jon said in utter disbelief, “She hasn’t cried yet.” There had yet to be a day where she hadn’t put in at least a few hours of screaming before noon. Every day since then has gotten better and better. We are now realizing how thick the tension and stress was in our apartment, our marriage and our lives in general. We are also recognizing the endless amounts of love God poured out over us through the hardest times. He has allowed us to curl up in His lap and find comfort whenever we need it. I have been able to find peace in the promise of His sovereignty and control. The reality that my boat could flip over and sink in the storm and I could die or Charlotte could die or Jon could die doesn’t scare me anymore. I know that Jesus will be right there in the boat with me. No matter what happens.

This last month has been amazing! Jon went back to work and I’ve been taking care of Charlotte. I have come to terms that Charlotte will never be like “other babies”. She is temperamental, sensitive and loves being on a predictable schedule. She is the perfect baby for us. Charlotte was made for Jon and I and I feel extremely privileged to call her mine. She’s mine! All mine! Forever! She takes my breath away! She’s perfect!

Charlotte is now 5 months old and sleeps through the night. She wakes up in the morning happy as a clam ready to experience a new day in this world. She has made the perfect little schedule for herself with nap times and feedings. I am now able to take her places! She loves being out and about, people watching. The pride I feel as a mother walking around with my baby, MY PERFECT BABY, is something I have never experienced. From time to time I will pause to look her and remember that she would have had only 7 days to live without her surgery. But she was born in a time and a place where she could be given life. She is meant to be here for something bigger than we could have ever hoped for. Just being alive is a testimony of how incredibly loved she is by God. I pray that Charlotte walks with the truth and knowledge everyday knowing she is a miracle. We all should. I want her to own her scars and show them off as blessings. As her mother, I pray she lives without fear and with the knowledge that she is able to accomplish whatever her little heart desires. I will never stop rejoicing over her and thanking God daily for her life.

We see the pediatric cardiologist often getting echo’s on Charlottes heart and check to make sure everything is looking good. So far all the ECHO’s have come back positive. The only concern they have had is that her pulmonary artery is a little narrow, but not narrowing, meaning it’s not getting smaller. This is causing a bit of a heart murmur. They say that it is unusual NOT to see this, so they are not concerned, just closely watching to make sure it doesn’t get any narrower. I try not to focus too much of the 40% chance of having to go back in for more heart surgeries. The thought of that paralyzes me so I can’t go there. I am aware that that is an option but I walk in faith that no matter what, God will be holding our hands and carrying our sweet baby girl through the whole process.

Thank you all who have been alongside us on this journey. All your support, love and prayers have been our light and our hope. We love you all! I plan on updating the blog and turning into more into of a journal through our life with little Charlie Bear. She sure keeps us up on our feet.

Wednesday, March 21, 2012

Home stretch!

A lot has happened since the last post. All for the good!

We have been back at Kaiser Sunset for 6 days now, recovering and working on feedings.

All the cultures for bacteria and viruses came back negative, but they still have her on antibiotics until her incision fully heals.

But the best news is that she is off Oxygen AND her feeding tube! She's breathing and eating all on her own! She is rockin through this recovery so fast and we are loving every second of it.

With all that being said, it looks like she'll be going home any day now! The Dr.'s are all saying she has recovered extremely fast. She's our little fighter!

She has gone through so much and has been poked and prodded so many times. We cannot wait to take her home and start living life with her. It is so hard having to leave her in the hospital every night. We can't thank you enough for all the continued prayers and support from our closest friends to people we have never met. Thank you for loving our daughter along side of us. God is good.

I've included some recent pictures of her.

Friday, March 16, 2012

Day 8

Hey Everyone.

We celebrated Charlotte's ONE WEEK BIRTHDAY yesterday! Lydia made cupcakes and some of our friends and family brought over food. It was a great way to celebrate our little girl's milestones. We have celebrated every single second that we've had with her. She has forever changed us.

Lydia's over at the hospital with Charlotte and I'm doing some laundry, so I thought I'd update everyone with what's going on.

Charlotte is still doing great. The ONLY issue, and they don't think it's anything right now, but she had a mild fever a day ago, and again this morning. The plan was to transfer her to Kaiser Sunset for a step down recovery to learn feeding, but with this, they are going to keep her at Children's and step her down in their facility for observation. She is still recovering very well, which is why they are planning on taking her out of the CTICU, but they would still like to monitor her status closely. One of the Dr's said that she is doing so well that he really wants to keep a close eye on her so there are no setbacks. So this is more precautionary than something they are worried about.

One of the issues with the fever is that she has a carotid central line in her neck that they haven't been able to remove because they haven't been able to get a line anywhere else. It's heartbreaking to know they had to poke her so many times to try and find another spot. The carotid line is a highly sensitive area and can be very prone to infection, which is why they want it removed. All the cultures so far to check for infection are negative, Praise God. They were able to secure a line on the side of her head (another heartbreaking moment) but they can't draw blood from that site.

All this being said, she still needs lots of prayer and love. She's a fighter and this part of her journey is almost over, she just needs to finish this race strong so we can move on to the next step with our precious angel.

Thank you guys for all the kind words, prayers, and support. Charlotte already has quite the story to tell. Can't wait for you all to meet our little miracle.

Love ALL of you,


Here is a recent picture of our little girl:

Wednesday, March 14, 2012

Vent is out!

Charlotte's vent was taken out and she's breathing on her own. The best part is that we've been holding her for over an hour now! We are in love all over again. Praise God!

The next step is to start feeding and wean her off all the meds she's on! Pray that goes well.

Monday, March 12, 2012

"Yay! My chest is closed!"

Charlottes chest was successfully closed today by Dr. Kallin! She did great, but she had another JET rhythm episode where her rate went over 200. Things have settled with meds and they expect it to normalize. Next step is getting the chest tube out and then the ventilator. She's a fighter!

Big Day Today - Closing her chest

Sorry I haven't updated in a bit. Mostly been posting quick updates on Facebook.

I first want to thank all the nurses and doctors at both Kaiser Sunset and Children's Hospital Los Angeles. I really can't express the gratitude we both feel for the care we are receiving. First, a thank you to her surgeon, Dr. Kallin. Your precision and skill saved our daughter. Thank you. We've been with the nurses at CHLA the most now, and the love they have shown our daughter is incredible. Sara, Carolyn, Stephanie, Charmaine, Unique, and all the other staff that we have met, thank you for loving on our sweet angel. Oh, and thank you for naming her, "Cutest Baby on the Floor."

After her surgery she hit some rough points. After surgery, it's a big balancing act between her rhythms, blood pressure, and fluids. She was in a bad rhythm called JET which made her heart rate over 200. She was also in a 2:1 heart block. Meaning the top of her heart wasn't talking with the bottom. Because of these rhythms, she was place on a pacemaker. The surgery also went longer than they had expected, so they had to pump her full of a lot more fluids than normal to maintain her pressures. Needless to say, she had gone through a lot. So the next days were critical to see how she will recover. The things I mention are within the "normal" things that can occur after this surgery. Except for the JET rhythm.

But yesterday we got the great news that she was in a normal sinus rhythm All on her own!!! That means that she has a normal heart beat and no JET or heart block and no need for the pacemaker! Praise God!

She continues to fight and show progress each day. The prayers and love everyone has shown us is palpable, thank you.

Now we enter the next critical step, closing her chest. They plan to do it today since her fluid levels are getting back to normal. They have kept it open to relieve pressure and in case they had to go back in right away. Once the chest is closed, her heart and body might take a hit because the heart and lungs are now under more pressure and in a new environment. Please pray for today and the next days to come as we come closer and closer to our daughters restoration.

Thank you.

Love, Jon and Lydia

Our dear friend, Alex, sent us these verses and they have been the echoes of the strength we have experienced from our Father.

Romans 8:26-27 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.

Psalm 55:22 Cast your burden on the LORD, and he will sustain you; he will never permit the righteous to be moved.

Matthew 11:28-29 Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.

John 14:27 Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.

Colossians 3:15 And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful.

Deuteronomy 31:6 Be strong and courageous. Do not fear or be in dread of them, for it is the LORD your God who goes with you. He will not leave you or forsake you.

Friday, March 9, 2012

Post Surgery Update

Quick update. Surgery was successful!! Praise God! Arteries switched and the VSD was closed. She has all kinds of tubes in her and she's on a ventilator. Her chest is still open too. The next few days will determine if they can close the chest. It's still open in case they have to go back in and also to relieve pressure from swelling. Not easy seeing your daughter in that condition, but she's being very well taken care of. Pray for continued healing. Lydia's doing great, too.

Thank you for all the love and prayers!