4 weeks post op

Thank you all for praying for us so much! I know Maelyn has been doing well because of your prayers. 

5 Months old

Today is 4 weeks since Maelyn had her surgery. It has been a really long month, but she has been doing really well. Other than being on oxygen she has been a pretty normal 5 month old baby. She had a good week or so of sleep regression and she is teething like crazy. She has been nursing and growing well, and is back to sleeping well. Luckily her doctor agreed with how well she is doing and is letting her come off her oxygen and lasix! And we do not have to go back to see him for 6 months! (I just have to monitor her oxygen for a while and make sure she can stay in the 80's.) I am so happy to have no cardiac appointments scheduled for her. That hasn't happened since January. And I am so happy to not be lugging the oxygen tank around with me and watching out for the tubing every second! We are so close to getting back to normal life! She has 2 more weeks of 'recovery', where she can't get sick and can't be lifted under her arms or do tummy time, but we will hopefully start getting out more. Since 2 weeks before surgery we have not really gone any where or done anything. We haven't been to church in 6 weeks. While my parents were here we did a couple things outside, like pumpkin picking, but since they left, I haven't really left the house. Luckily this weekend is Halloween! We are going to trunk or treat at church tomorrow and trick or treating on Saturday (thankfully without an oxygen tank in tow).  Ben has been asking to go places and see friends so I am excited to get the boys back to normal too. 

Brothers!

Please pray for continued healing and great recovery for Maelyn. For continued normal development, hitting milestones and health. Pray for getting back to normalcy and for getting out of the house. Pray for sleep in our house. Even though things are going so well, pray for a positive attitude for me and energy. It's been a hard month (year).

2 weeks post surgery

Two weeks post bidirectional glenn, open heart surgery. I am amazed at how well Maelyn is doing. She is still on oxygen and lasics for a while to help with healing from the surgery. We are still giving her Motrin, but only twice a day to help with the discomfort caused by her being moved around during the day. Giving her the oral medications is getting much easier. She is typically her happy adorable self and she is pretty much back on her daily schedule. We have had a few nights were she was up a lot, ok most nights she is up a lot. I don't know if she is just needing to nurse more to make up for the few days she lost or if she is just needing the extra comfort. She just started taking a pacifier and bottle again (sometimes). She's actually more set into her schedule. The days that we have done things that have messed with her morning nap have been the harder days. The worst days have been the doctors appointments. I think she has learned that the hospital is not a fun place so she just cries through the whole thing now. It's hard to tell what of her fussiness is from surgery and what is just her being a 4.5 month old baby. I think she is teething and hopefully going through a growth spurt. 

Her last appointment was Monday. She cried through most of it so it was hard for them to assess her. I had to assure them that she is much happier at home and seems fine at home, other than not liking the oxygen tube. They lowered the amount of oxygen she was getting, which I think helps a little bit. They noticed that her heart rate was low for her and something (I'm not sure what) looked slightly off on the EKG. So I need to monitor her heart rate a little bit, which has been fine at home. They were also a little bit concerned about her weight gain, but trusted me that she is eating well. I am not concerned about her weight at all, I think she was still loosing fluids from surgery and catching up from missing two days of  not eating at all. Her incisions look good. All of the external stitches are out and the glue is off. The bruising has pretty much gone away. It needs a couple more weeks to heal on the inside and for the scabs to fall off. But I am amazed at how well it is healing and how little she seems to notice it at all. She still has other bruises and scabs from all of the IV placements. She also had a couple rashes from the tape they had on her but those are gone and now just healing. The only other thing is the stickers on her cheeks that hold the oxygen on. I move them every few days but her cheeks are starting to get a little irritated. The oxygen tubes also irritate her nose but that seems to be getting better. At the appointment on Monday we saw another little girl who was probably two and a half who also had oxygen on. She called the cannulas 'owies' and pointed out that Maelyn had owies too. It was really cute but really sad. I'm sure they do cause owies. 

I am feeling ready to get back to normal. I want to get out of the house and get the kids playing with their friends again. We've been shut-ins since a couple weeks before surgery because we can risk getting any bugs and we're getting lonely. I'm hoping to have a few play dates next week but we will still be limiting our exposure to the outside world for a couple more weeks. Also, sometimes the oxygen tank is like having a 4th kid, and that will be sticking with us for a couple more weeks too. Once we get her off the oxygen, and loose the tank, she will also be on the tail end of recovery and be able to get out more. Her next appointment is in 2 weeks. 

Please pray for Maelyn's heart rate and function. Pray for her nursing and weight gain. Pray for her discomfort and healing. Pray for nights. I am feeling drained and just done with all of this medical stuff, so just pray for strength and energy and refreshment and a positive attitude. My parents left today, so I am on my own with all three kids during the day again. So far it's been a good day, but pray for us! 

4 days post surgery

We are home! We were told to expect to be in the hospital between 4 - 10 days. While I was packing to go, I was being optimistic and only packed for 4 days. Once we got there I started to worry and started to wonder if I should have packed more. But God was with us, and we got home in 4 days. It felt like she would take three steps forward and one step back, and I would get upset, but those three steps forward made up for so much that she recovered very fast. And every time we put out a prayer request, you prayer warriors were there for us, and He answered! I thought we would need to stay one more night but her doctor was the one on the floor and he helped us get discharged sooner. He knows her, he knows us and he knows that we live close enough that we could easily bring her back if something were to come up. I even thought we wouldn't get out until after dinner time but this time we knew what to ask the nurses and doctors and they were on top of it and got us out around 3 pm!

Getting very bored in her room.

Pre-op was hard. Handing over a seemingly healthy and happy baby to go through open heart surgery, with all of the possibilities ahead of us was pretty horrible. Watching her recover the first couple days was hard too. She was (seemed) perfect before we handed her over. Seeing her awake, but not really there was bizarre and sad. And being a mommy and not being able to comfort your baby is the worst feeling ever. It's all just feelings you hope you'll never experience and then when it's over you're relived and then there is that feeling of 'we did it, it's over and we shouldn't have to go through it again'. Unfortunately, we will have to go through it again. But I keep reminding myself that we have a few years, and she will be older and it will be different.

Driving home!

It feels good to be home. Our own beds are just the best. I will say, staying at the hospital this time was much easier because of the fact that I had not just given birth, and we had a shower. We were also very blessed by many people with food while we were there. That was huge too. We didn't have to think about eating or worry about spending money to eat 3 times a day. Biggest thank yous to those who sent care packages with snacks and goodies, and to those who ordered us meals while we were there! I am glad to be home with the boys but I am very glad my parents are still here to help. I am still trying to figure out how to care for her from home. She is still on an oxygen, so every time she moves, the tank has to come too. Her tanks also need to be switched out every twelve hours and refilled. She still hates taking her meds. She gets them twice a day, plus tylenol and motrin as needed, which are her least favorite. We are still trying to figure out the best way to get them in her. She still wont take a pacifier or bottle, but is nursing ok. She is still sore but actually seems to be doing well with the pain, even when we skip some tylenol and motrin. But there is something about being home that makes it so much better.

Hanging out at home.

Praise God for hearing our cries and answering our prayers. Thank you God for being our Sustainer. Praise God for creating little bodies that are able to heal so quickly. Thank you God for Jesus, who brings us so close to you and who brings us your Spirit at all times.

Pre/Post Surgery Pictures

Waiting to go into the OR

This is when we first got to see her after. Still asleep and on the ventilator.
The stickers on her head measure oxygen consumption in the brain. The big tube in her nose is the ventilator. The small tube is the gastric tube. She has 4 IV lines, a catheter, a temperature probe, a pluse ox and the heart rate monitors stuck to her. The red tube in the middle is the chest tube, below the incision bandaid.

Close up, still asleep.

A wake and breathing on her own. She was switched to oxygen through the nose.
She was very fussy so we were trying to comfort her without picking her up.

She has slowly been having lines and wires removed. She has already gotten rid of the two tubes in her nose (replaced by oxygen), the two head stickers, and two IV lines (technically three but one got put back in because she kicked it out). By tomorrow we hope to be down to just the monitors and oxygen and then be move to the CPCU.

She is still very upset and on a lot of pain medications. She is eating, but not great. We are hoping both of these things improve a lot by tomorrow. When I can get a picture of her not crying I'll post a more recent one.

Recovery, day 1

Surgery went great. It was a little faster than expected. There were no surprises or complications. The only thing that came up was, her blood pressure needed to be controlled with medication. We handed her off at 7:30 am and got to go back to her room with her around 2 pm. Everyone had told us she looked great and was doing really well. Once we saw her she actually looked better than I expected her to look. The breathing tube was through her nose and there was a gastric tube in her nose. To me the nose doesn't look as uncomfortable as through the mouth. She wasn't as swollen or puffy as I was preparing myself for. Her color looked good. She ended up only needing one chest tube, which does not look as bad as I imagined either. She had 4 IVs, one in her neck, one in her arm, one in her leg and one in her ankle. She also had a catheter, temperature probe, pulse ox, blood pressure cuff, heart rate monitor and big stickers on her head to monitor oxygen consumption in her brain. Oh and one big long bandaid on her chest, but honestly it is the last thing I noticed.

She didn't wake up until closer to 5 pm. Once she showed that she could breath on her own they were able to take her breathing tube and gastric tubes out of her nose. She was then given an oxygen cannula. Once the breathing tube was out she was still very fussy. Nothing was soothing her. She was already on every medication possible, she wasn't allowed to eat yet and we couldn't pick her up. When she would get really fussy her stats would drop so eventually we were given the ok to hold her. Two nurses helped get her into Tim's arms in a chair. She calmed right down but Tim was stuck. I, the loving wife and mother, hand fed him his guacamole burger and fries. It was pretty entertaining. She slept in his arms from 6:30-9:30. At 9:30 she was finally allowed to eat. We needed to start with pedialite, which she downed, then we have her breast milk from a bottle, which she downed. Once she ate fine she was able to take some different oral medications which really seemed to have helped her pain. Getting her back into bed was a mess but we eventually got her untangled and swaddled and to sleep in the crib. We were able to get a parent "sleep room" (aka a random tiny room with a pull out couch and a bathroom), so I was able to get a good nights sleep and a shower this morning. Tim stayed in her room. She was up for bottles twice durning the night. Right before I came back down this morning they removed her neck IV and the catheter, which she hated, and then she fell back asleep.

We are hoping to start to breast feed again today and try to start to get her back onto some sort of schedule, at least day vs night since she slept the entire day yesterday. They are pretty sure that the reason she was so fussy is that she is having the "Glenn headache". When kids have this Glenn surgery, it changes the blood flow and pressures in the top half of the body causing headaches. No one is sure how long it will last or how she will handle them. I've heard that the worst of it should be while we are at the hospital, it should get better in a couple weeks but could last a couple months.

Over all things are going really well. Please pray for continued healing, no infections, pray against swelling and headaches. Pray for feeding and scheduled to get back on track. Pray for rest and energy.   Pray for thing to go so well that we can go home in a couple days. We are missing the boys but they are having lots of fun with their nana and g-pa. Pray for them too.

I've been going back and forth about posting her post-op picture on here or not. I think I will because it's not too graphic or gory and I think it could be helpful for other parents about to send their child into surgery to see before hand. However, I don't know how to from my phone. I've never posted on here from my phone before (sorry if there are lots of auto correct errors)!