Charlotte’s Web

The past few days have been big steps for us. Thursday we finished our holiday decorating in the morning. A step toward celebrating the holiday to come. In the afternoon we moved into the nursery and packed everything into bins. Amanda has a sister who is expecting a girl in the spring, so some things we set aside to share. Other items we packed for the possibility of another daughter some day. And then there were the momentos, the items that we emotionally associate with Charlotte. It was hard, but could have been more difficult. Charlotte never lived in that room. She never used much of what we had for her. So most of what did have a connection to her were the items that made it to the hospital. Stuffed animals and blankets mostly. Those items we will pack and keep close for a while. The rest we put in storage for another time.

Friday we went back to visit the place Charlotte did live. We swung by Muddy’s bakery for some cupcakes, and then drove to LeBonheur to deliver the sweet treats to the staff of the CVICU as a thank you. We were able to see Angela, the nurse who was on watch when Charlotte came in from surgery, and when she passed on. We also got to see the RT in charge that day and some of the other staff who had been around through Charlotte’s stay. It was a sweet time. It was also kind of a time for packing up things at the CVICU as well. They are moving everything over to the new building on Saturday. So much of the furniture was already gone. Art was off the walls, and a couple of rooms were empty. The surgeons had not scheduled any cases this week so there were few patients to be moved. It is a time of transition. For everyone.

It was hard to go back in many ways, but important. It was important to say good bye to that place where we lived as a family for so short a time. For me it was also good to experience that space without the fear of the unknown, the dread of the moment, the weight of stress that hung over those days. It was good to feel that peace also existed there. It was good to reach out and offer something good to others. The doctors and nurses at LeBonheur gave their skills to helping us have time with Charlotte. The least we could do was give them a cupcake. (The best cupcake one can find in Memphis.)

Thank you all for your prayers this past week. Charlotte’s funeral was a bittersweet time of worship, attended by far more than the one hundred people that we had space for. Thanks to all who came, and all who were there in spirit. Thank you also to all who gave so much for Charlotte at her showers. She had know idea just how spoiled she was, but we know. We have big tubs full of items to prove it. Thank you all. It will be put to good use in time.

Amanda and I took Thanksgiving day to rest. While any other thanksgiving the rain would have bummed me out but it felt so perfect for how we were feeling. We slept alot, cried alot, and worked through so many thoughts about the last two weeks. Some time when I am more collected I hope to share more.

We did have family stop in and drop off some food for us, so we did get our turkey and dressing. Also Grandma brought Mac home to us. He has such empathy he has often served as a healing balm in times such as these. He lay beside us or on us quietly all day. It was good to be together again.

Today we went out with our pastor and made funeral plans.

Charlotte’s funeral is tomorrow.

Charlotte’s funeral will be at Memorial Park Funeral Home at the corner of Poplar and Yates in Memphis, TN. Visitation is at noon and a service will follow in the Fireside Chapel at 1pm.

It was so difficult, but one of my greatest honors to make plans to celebrate our little girls sweet life.

I want to take a moment here to thank the special people at LeBonheur who helped Charlotte. I know I have talked about how hard it was to see her little body go through such difficult procedures, but I in know way harbor any ill feelings to those who tried to help her. With HLHS a child will seldom live more than a few days. The efforts of the medical staff at Lebonheur gave us more time with Charlotte. We can never forget that Dr. Knott-Craig did a great deed to redirect the flow of blood in her body. We are grateful Dr. Muhammad kept pushing for  the heart Cath which we know gave her more days with us. We also thank, Dr.s Shapley, Shaw, Whalar, Rajit, Swingshackle, Figeroua, Goldberg, Craig, Boston, Alex, Sue (I forget the last names because everyone was on a first name basis) and Bushara. We also want to thank all the nurses who cared for Charlotte. I now know more than ever that nurses are the frontline eyes and ears for all patients. Their efforts to notice issues, resolve them, and do everything to help the patient feel comfortable when in great duress are an amazing blessing. Thank you Angela, Anna, Michelle, Michelle Harris, Linda, Amy, Anne Marie, Susanna, Noel, Sarah, Ashley, Christie, Linda Ware and Zina. Thank you to the amazing Pedi Flight crew who gave Charlotte her one and only expensive car ride, as well as a beautiful pink bear and a ride by our home on Poplar on the way to Lebonheur.  There were others involved whose names I know I am forgetting as well as countless others (like all the respiratory therapists, pharmacists, sonogram techs, x-ray techs, social workers, child life staff, chaplains, and lactation consultants) and I know that the whole team was involved. Please forgive me if I have left out your name.  Thank you so much. We value all our little girl’s friends, who became our friends too.

Charlotte Hope passed away today around 5:14pm. She had struggled through the night and throughout the day. All her friends in the CVICU that were on duty today came and did all they could to rescue her. But in the end her little heart needed to be at rest.

We have hope that God is good and that our child is with him safe from surgeries, medicines and procedures.

Thank you all for your prayers through these months and weeks. Please continue to pray for Charlottes mom and dad as we celebrate her life, and learn God’s purpose in her leaving so soon. I have hope that what hurts today will bring forth fruit and joy with the work of the Holy Spirit in our broken hearts.

Charlotte did not have a comfortable night. Her right chest tube was not draining the Chylothorax very well so it was building up around her right lung and creating difficulty for her to breath. This morning Dr. Knott-Craig instructed the nurse to replace the latex/plastic bandage sealing the chest tube with just a gaze that would allow any fluid to seep from the hole around the tube. Amazingly this actually helped the tube itself to start draining again. 30 cc’s in the first hour. So with that positive change she started Sating better and looked much more comfortable.

Then… They lifted her for a follow up chest x-ray, and the chest tube that was tenuous at best, came out.

So today miss Charlotte gets a new little incision in her side for a new tube to help continue draining the chyle. Our hope however is that doing so will help her stay comfortable and give the doctors more time to to see the Octiatride will kick in and stop the Chylothorax, thus avoiding surgery to try to fix it.

Keep praying.

Charlotte's first time to be held by mom since surgery.

Today Charlotte continued off the ventilator on c-pap. The mask you see in the picture above just rest in her nose and provides an extra burst of pressure when she takes a breath to help her expand her lungs and breath better. They can give it a rate to help produce a steady rhythm which is what they did through the night helping her be more comfortable. During the day today thought the cut the rate off most of the day and let her manage on her own, still with the pressure, but taking breaths on her own terms. Baby steps… moments of success that we view as milestones of progress.

Since she made it the full twenty four hours without a breathing tube, I kept a promise I made to her by bringing her a big stuffed bear. A token of celebration and a moment of fun for a proud dad.

It did not get a big reward, but another good bit of news was that they took her catheter out today. She is getting to wet diapers like any other baby again.

The biggest thing for mom and dad though was getting to see Charlotte in her mom’s arms again. It took 2 nurses and one respiratory therapist to orchestrate the move from bed to a pillow in amanda’s lap but it was a truly happy moment. Amanda called me at work to let me know. It was good to have happy tears at work today.

So there has been some progress.

Do keep praying for the Chylothorax to be healed. There was a discussion in rounds this morning about the possibility that they had taken her off octriotide too soon. Octriotide is a medicine that can sometimes stop chylothorax. The pharmacist feel that if it would work it would happen in the first three hours of use. So they had put her on it and stopped it. Dr. Knott-Craig however has left babies on the medicine for 72  hrs. So he ordered the medicine back on for the longer period to give it another chance to work. It is a preferable solution to having another surgery, so we are willing to give it a chance. Whether the medicine works or it just resolves, pray for a non operative solution. The tubes did produce less fluid today. But we are not sure if it is the result of the meds, or because of a possible clot in the tubes. The tubes are migrating out of her body as well so it is also possible that they just are not getting anything. I would not be surprised if they have to do new tubes tomorrow.

Right before we left the hospital tonight, Charlotte did start getting more uncomfortable and dropping her Sats. Dr. Figouroa ordered a chest x-ray and saw that there was a little haziness inside her lower left lobe. Charlotte did not urinate as much today and the chest tube output was low, so she could be building up fluid in the lungs again. So she ordered a one time diuretic for this evening to get her to pee, in hopes that might get the fluid out. If her x-ray in the morning shows continued haziness then they can order an ultrasound to see if it is they chylothorax building up in there again in which case the new chest tubes would be required.

Today’s nurse was Angela. Tonight she is with Ashley and Dr. Figouroa.

Dr. Swingshackle put Charlotte on a lower vent rate so she could be more comfortable, and she tolerated that well through the night. Today they will re-access and decide how to proceed with weaning her off the c-pap or re-entebate. Again I am proud of Babygirl Charlotte and how well she did through the night without her tube.

Today’s nurse is Angela, and the attending physician is Dr. Swingshackle.

When we left the hospital tonight Charlotte was still going off the ventilator. They have kept her on the c-pap. She was very shallow with her breathing, but she was still giving it a go. The new RT that rotated in tonight was very excited to see her off the vent and encouraged us that even if she was on c-pap that it was great.

Dr. Swingshackle, her new attending for the week, stopped in before we left and gave us a signal that it could go either way at this point. Meaning it is a tight rope that might require re-entebation as the night progresses.

We would not be surprised if they do have to re-entebate. And if they do it will be good for her to rest and build up strength to try again. Even a short time off the ventilator is like a training program.

The Respiratory Therapist compared getting of the vent to running a marathon. I told Charlotte I was impressed with how she was doing because there is no way I could run a marathon.

She did ok off vent at first. But her diaphragm was weak so she was taking short breaths. A sonogram and x-ray showed that She also developed a little adelectisis, meaning the air pouches in parts of her lungs were constricted a bit. And there was some secretions building up.

They suctioned her, did chest pt to knock things loose, and put her on c-pap through her nose. This just pushes a little air into her lungs to help them expand. So she is off the ventilator, but is getting some help to keep going. This is not uncommon.

It has been stressful to watch, but we think progress is being made.

They removed the breathing tube at 1:15. She is doing well so far.
We are in a waiting phase to see how she does. A successful entabation requires 24 hours of observation. But the first four are a good indicator.

She seems to be favoring one side of her chest, so they are going to do an ultrasound to make sure both sides are pulling equal.

So pray for success and healthy lung function.

Charlottes 3am sprint was postponed till 6 this morning because she was sleeping so well. She did a great sprint.

Rounds were a bit late this morning. Dr. Knott-Craig reported that she does look like a completely new baby from when he saw her on friday. That was a good report. The team will try to take her off the ventilator today. So it is a big day.

They are pulling another round of cultures from all her tubes today, because she does have an elevated white blood cell count, which can be a sign of infection. She was also spiking a low fever occasionally yesterday, which is an indicator as well. They are just trying to find the source.

I am back at work, but Amanda’s aunt is staying with her through the morning as support. We don’t know when the extabation will occur, I am sure they will just show up and do it between operations or something.

If Charlotte gets extabated I have to find her a big stuffed animal. I promised one for when she got extabated. It’s not a bribe… just a gift to celebrate.