Two more weeks!

Brynn's surgery has been postponed. We got through a difficult week of preparation and anticipation only to find out that we haven't quite gotten the green light from the surgical team.

Brynn did very well with appointments leading up to Friday. She enjoyed getting to meet the Child Life Specialist and although she didn't seem to quite understand why were at the hospital or what the lady was talking about, I like to think that the experience prepared her in some way for what was coming. They read Brynn a story about a camel who came to the hospital for surgery and showed Brynn pictures of the actual operating room and recovery. They showed her the playroom and library and gave her a quick tour of the floor where she will recover. Brynn loved getting to play with the stuffed camel and pretend to give it medicine and put on its tiny oxygen mask. She did seem anxious and didn't seem to really believe that she wouldn't have to see a doctor while she was there. We tried to give her as much power and control as we could throughout the appointment so that she could feel as in charge of the process as possible.

Tuesday was a little more stressful and upsetting for her. She did not want to be vulnerable and lie down on the table for her echo. It helped for me to climb up there with her and together we watched Tangled while they got the pictures they needed. It took some convincing but we were able to get her to lie still for the EKG. We met with Brynn's cardiologist, anesthesiology, and the cardiac cath nurse. Brynn allowed them to examine her and they grilled us with questions about her health and development. They let us postpone all the lab work and Xray so we were able to got home after lunch (but not soon enough to avoid a serious meltdown in the parking lot). 

Brynn struggled that night and early next morning with not being able to eat or drink or anything. She was grouchy and confused when we arrived at surgery center at 8am but knew the drill at this point and cooperated while they got her height, weight, blood pressure, O2 saturations, and temp. She started to get pretty agitated in the waiting room and was being sort of aggressive with the other kids but overall I was so blown away by her ability to keep it together. I was tired and and hungry and anxious (and I had had coffee and was sneaking sips of water and a granola bar) so I can only imagine how she was feeling. I am frequently in awe of her strength and bravery in these situations. I almost lost it when they came in and told us it would be another hour before they could take her back and I was probably pretty frosty towards the Child Life Specialist they sent into the room to try and help Brynn cope with more waiting. Child Life had Brynn decorate the mask they would use to administer the anesthesia and then allowed us to leave the room and get some fresh air. I took Brynn to see the train and play in the courtyard to kill time. By the time we got back they were ready for us and we headed back to pre-op. 

Once there Brynn really began to perk up. We had gone over and over what would happen next so she was very cooperative with changing into her "jammies" and swallowing the medicine that would help relax her and help with what they call "mask refusal". We got to meet the doctor who would be performing the cath, her nurse, the resident, and the same Child Life Specialist we had met in the waiting room. Brynn played with her dolls and loved that she could watch Frozen on the TV and control the volume. She was so content that she didn't want to leave when it was time to roll her down to the cath lab! Thankfully, the quick thinking and sympathetic doctor quickly paid $1.99 and downloaded "Let it Go" to her Iphone. She had it blasting the whole way with Brynn doing all the moves from her bed. It had to happen Brynn style! I literally felt just held up by a sense of security and positivity that I'm certain came from all the prayers and positive thoughts that have been coming our way. 

This last week has been difficult but all the prayers, text messages, emails, phone calls, meals, and encouraging words have made us feel so loved and supported. I feel like Tony and I are able to pass on all that support to Brynn and really nurture and care for her in those more difficult moments. 

The cath procedure took a couple of hours and they only found one large collateral (a blood vessel that grew to compensate for her her small heart size) that they had to coil off. Unfortunately, her pressures came back a little high and we were quickly informed by the surgical team that her surgery would be delayed until her case can be presented in front of the review committee and everyone can agree she is still a good candidate at this time. We were blown away and kind of reeling from the news but also relieved that Brynn was doing well. 

She had a long five or so hours after that where she had to lay flat and still on her bed to prevent bleeding where they inserted the cath in her neck and groin. We finished the day with an Xray and then headed to Grandma's for some rest and TLC. The next day Brynn was feeling pretty good. We baked cookies, had a campout in front of the fire, and tried to process and prepare for two more weeks of back to normal before the surgery. 

We thought we were in the clear until Brynn woke us up at 1:30am crying and shaking. I thought she was just scared or upset until later that morning when we realized she was in a lot of pain. She was whimpering and wouldn't let us pick her up. She kept saying her armpits and side hurt so we panicked and immediately thought she might have developed some sort of pleural effusion (fluid around the lungs). We called the cardiologist who fit us into to her morning clinic schedule so we could bypass the ER. She examined her and called the cath doctor who said it was probably inflammation and pain from the collateral she coiled off during the cath (which is apparently not uncommon to have). Well! That would have been nice to know! 

We are treating the pain with Tylenol and Ibuprofen and watching the low grade fever she has had on and off. She has terrible bruising on her neck and groin area but doesn't seem to be too sore in these spots. Changing the bandages and getting her into the tub and out of the PJ's she's had on for two days was painful and scary for her but once again her bravery and ability to bounce back rivals any adult's I've seen. We are so unbelievably proud of her and grateful for some extra time for her to heal.

I am truly blown away and amazed by the awesome hand of God who knows all things and knew that Brynn would need this extra time to heal and recover. We are grateful for every extra moment we have to snuggle and care for her before she has to go back. It has also given us a glimpse of what to expect and prepare for when we return.

In a bizarre twist of fate, February 6th will end up being an important day for our family anyway. My sister gave birth to beautiful healthy baby girl on Friday! Anna Constance Leitch we love you and are so glad you are in this world!

Thank you to everyone who has supported us and given us strength during this challenging time. Letters and cards are already coming in and we can't wait to share them with Brynn. We are so blessed and grateful.

    

Here we go again!

Hey Everyone!

I'm not sure really where to start but I wanted to reach out to everyone before Brynn's surgery next week. I can't believe we are here already. We've always known that this surgery was coming but “sometime during her third year” was always in the future. Now it is here.

On Monday we are visiting the Child Life center at Lucille Packard to meet with a specialist who will help us prepare Brynn emotionally and psychologically for surgery. I'm not sure exactly how you do that but I think puppets are involved. And of course a coloring book. :) We might even give her a tour of the ICU and recovery if it looks like that will be helpful. The goal is to give her simple and factual information so that she is reassured she will be okay but not too much information so that she gets scared. Three is a tough age for this surgery since her imagination is already in overdrive and phrases like “open heart surgery” are scary even for adults.

Tuesday is our marathon day at the hospital. Brynn is scheduled for an echocardiogram, EKG, and clinic visit with her cardiologist. We will meet with the team, sign consents for the surgery, talk to anesthesia, and then hopefully break for lunch. In the afternoon we will complete all her lab work and X-rays. A nap is probably not in the cards for us that day so this might make things particularly grueling. Brynn is really a champ when it comes to her cardiology appointments so hopefully she will be able to get through this long day with the usual promise of a trip to the gift shop for a balloon when it's all over.

Wednesday is the cath procedure. We will have to arrive very early in the morning. They will do an examination and then we will take Brynn to the cath lab. Last time we were able to stay with her as they put her under so I'm hoping they will allow us to be there this time as well. It's an operating room with lots of doctors and bright lights so its a very scary place for a little kid. I'm pretty sure they don't start her IV until she is already asleep. During the cath they will place a long flexible tube into a blood vessel in her arm, neck, or groin. They will inject ink into her blood stream this way and take pictures of her heart. This will confirm that she is still a good candidate for the procedure by measuring the pressures in her heart and determining that she does not have high pulmonary vascular resistance. The cath will take a few hours and then she is in recovery for two hours. If everything looks good we can go home that night. We are pretty apprehensive about the cath since the last time we had a really negative experience with a nurse and doctor there, Brynn had a complication after the procedure, and we ended up in the hospital for a week. This time it should be more straightforward but it's still scary for us to think about going back.

Thursday we have a day to recover, pack, and prepare for the surgery. We will be staying with my parents who live pretty close to the hospital. Lucile Packard will call us on Thursday and let us know if we will be the first or second case of the day on Friday. They will give us instructions for when to stop food and fluids and how to bathe Brynn before the procedure. Because Brynn is not an urgent case there is always a chance the doctor could be called away in an emergency and have to reschedule or delay the operation. We are really praying that this doesn't happen for all the obvious reasons.

The procedure is called the Fontan. Brynn was born with a single ventricle supplying blood to her lungs and body. The first two procedures she underwent allowed her body to be delicately balanced between inadequate blood supply to the lungs and oversupply to lungs. When she was born her single ventricle had to do twice the work of a regular heart since it had to pump blood for both the lungs and body. When she underwent her Glenn procedure they redirected the oxygen-poor blood from the top of her body by disconnecting the superior vena cava and connecting it to the pulmonary arteries . The Fontan procedure involves redirecting the blood from the inferior vena cava directly to her lungs without having to be pumped, its driven only by the pressure that builds up in the veins which will allow her heart to then be responsible for only supplying blood to the body. Or so says Wikipedia. :)

Recovery will be anywhere from 2-6 weeks. Right after surgery she might experience a pleural effusion, which is a complication she dealt with last time. This is fluid building up around the lungs and the longer it continues to build the longer it will take her to recover since chest tubes are required to drain the fluid. This can also be an indication of further complications so we are hoping the chest tubes can be removed within a few days and that Brynn will be up and moving around.

We have been warned that the first few days after surgery are the roughest. She will probably be in pain, be disoriented, and very cranky or withdrawn from everything she just went through. Hopefully, this will only last a few days and we should see her feeling more like herself around the third day.

We are so grateful to all of our friends and family and church community who have reached out and supported Brynn and us leading up to surgery. Many people have asked what they can do to help and we are very open to support during this difficult time. First and foremost we are asking for prayer! Please, keep Brynn in your thoughts and prayers that she might have a quick recovery and that her pain and trauma will be minimized. Please pray for our surgeon Dr. Reddy, and all the nurses and doctors who will be caring for Brynn while she is in the hospital. Please pray that our family has the strength and stamina to support Brynn and care for Ryan over the next few weeks.

Many people have offered to help take care of Ryan while we are at the hospital which we might need at some point! I am planning on being there from 7am-7pm and Tony will be there from 7pm-7am. He is not able to take any time off from from work so he will especially need prayers and support that he gets enough rest. We will both need to be relieved at some point and are so grateful to everyone who has offered to sit with Brynn if we need to go home and get some additional rest. I promise, we will call you if needed!

Food would be great too. There is a kitchen next to the ICU where we can store and reheat food as long as it's labeled. My parents also have a second fridge where we can put meals as well. Thank you in advance for those who have signed up to bring us something!

Visitors are limited while Brynn is in the cardiovascular ICU (CVICU) but when she is feeling better and up on 3 West we might be up for brief visits. Please just send us a text and let us know if you are planning on stopping by so that we can let you know if it's a good time.

Finally, Brynn would love to receive cards, pictures, letters etc. while she is there. She has a tiny Frozen mailbox with Anna and Elsa and likes to check it and play mailman. We are planning on bringing it with us to the hospital so that we can read and display any mail she receives. If you would like to send a letter please message me and I will forward you the address.

Thank you again to everyone. We will be updating the blog with pictures and her progress as often as possible.