Day 6 - Tuesday

I feel like we're at a little bit of a standstill with Sofia's recovery. She still has her oxygen, chest tubes, and still has fluid around her lungs. She's still tired a lot and in pain at times. I think the pain is related to the chest tubes and the incision, not so much the gastro pains she was having. She really perked up last night, which was nice. We were able to wash her hair and put her in real PJs. She seemed to be in much better spirits than she was during the day yesterday. Her chest tubes are draining less fluid, which is a good thing. Really hoping she gets them out soon, but trying not to rush things. A Fontan surgery can be either fenestrated or nonfenestrated. If you have a fenestrated Fontan, the surgeon puts an intentional hole in the Fontan circuit, which is kind of a top off if pressures were to get high. The benefits are that the recovery is a bit faster. The downfall is that doctors often need to go in later, usually through a heart cath, to close the hold. And another downfall is that often the child is still blue (cyanotic). In the nonfenestrated version, there is no hole (so she is pink, not blue anymore) and as a result fluid can be a problem post-operatively. Sofia has a nonfenestrated Fontan, so the fluid that we're seeing is not unusual. Dr. Edwards, her cardiologist, stopped by as he has been doing almost daily. It was nice to have a chat about things. He is not the cardiologist on the floor this week, but he often stops in to see how Sofia is doing.

We learned something interested about the M-40 floor today. In a month's time, the whole "pod" area (I need to post pictures of the pod for those of you who have never seen it) is changing. They are expanding the in-house pharmacy and this whole area will become part of it. As a result, they will be losing patient beds and the only beds on the floor will be the ones that actually have doors. And apparently, this floor will also only be for peds cardiac patients. She has two noisy baby neighbors at the moment, so the thought of doors sounds very appealing. We have heard that if something opens up in one of those rooms, she'll be moved. I'm not holding my breath for that to happen though. We just have to suck it up and hope that our stay won't be too much longer.

Sofia played a little bit in the play room tonight, which was nice. I'm not sure how she's going to do when Oliver goes home tonight and I stay. She is really used to her daddy being her with her all of the time.

When she woke up from her nap today I asked her if she slept well and what she dreamed about and she said "Oma's sandbox." She had tears in her eyes and I felt so sorry for her that she can't enjoy things at home right now. Oliver's mom just bought Sofia a sandbox and it will be set up for her when she comes home. She also got some cute finger puppets as a gift from Oma and we were playing with them yesterday. I was pretending I was the nurse finger puppet and she said, "Maybe we can ask this nurse if I can go home." Soon, baby, soon! I forgot my camera today, but will post more pictures soon.

Day 5 - Monday

Poor Sofia. We are trying our best to combat her sadness. She just seems so down today. She threw up twice, which I know is no picnic. She is still struggling with gastro issues, which hopefully resolve themselves soon. She is getting regular miralax. She is still on oxygen today because she is still desating when she's in pain. She doesn't want to take deep breaths because it is probably hurting her chest. She doesn't want to move around a lot today, which is discouraging. We took her to the play room and she didn't have interest in anything. Adelaide came to see her today. They have never been apart this long before. Trying not to get discouraged by today because it is just one day. Once these pesky chest tubes can come out and once her belly is feeling normal again I think we'll see our old Sofia come back. Can't wait.

This is the face of the day :(

but when I asked her if she was sad, she made this face. This picture made my day

Day 4 - Sunday

Sofia is pretty weak, but making progress. The doctors rounded this morning and Dr. Qureshi (the cardiologist) said that her chest tubes would probably stay in a few more days. It will be nice when these come out because I'm they are causing her some pain, as they are sewn in right now. She perked up today when Oliver arrived and we took a walk down the hall. She has had a little effusion (fluid build up) around her right lung, which apparently looked better today. Also, her liver felt better today after feeling enlarged yesterday. She is doing better on a reduced amount of oxygen, which is good too. When she is in pain she quickly de-sats because she's not taking good breaths. She got an infusion of albumin (protein) because her blood work showed a decline in numbers. She still had a little morphine today, and she she is on coumadin (blood thinner). She also got the dressing changed again today on her wound and her incision looks good. Her IJ (internal jugular)/central line came out today too. The risk of infection is not work keeping it in. She still has one I-V. The downside of having the IJ removed today is that for her daily blood draws she will now need to be poked. I'm glad Oliver came at the time he did today. I was solo all night, which was ok, but it was nice when he got here. Sofia seemed like she was becoming sad and she always gets excited to see her daddy. Also, I was starting to get irritated at some things related to life in the "pod." For example, please don't wake me up to ask me if you can weigh her at 2 AM. It can wait until she wakes up, given how restless sleep is around here. Also, at about 3 AM I couldn't fall asleep because I the doors to the hallway were open and there were 2 staff members chit chatting right outside her curtain (aka door) for what seemed like a long time, even though I know it was probably just a few minutes. I know it's the middle of the day for you, but is the middle of the night for everyone else around here, and it is really hard to stay in the pod for an extended period of time. I don't want to rant too much because overall things have been really good. I was just starting to get frustrated and Oliver is usually much less bothered by things than I am, so it was good that he got here when he did. Looking forward for more improvements tomorrow!

Day 3- Saturday

Saturday started out pretty well, but ended a little bit on the rougher side. Oliver had stayed the night with her on Friday night and had an uneventful night. She ended up staying in the PICU on Friday night, which we were grateful for. It was much quieter and apparently it was too busy in the step down unit for her to get enough attention, and because she was still de-sating they asked if we wanted to stay in the PICU on more night. I slept at home again on Friday night and drove back to the hospital yesterday. When I got to the hospital, Sofia was awake and very alert in the PICU. Looked very good. She even had gotten up and taken a walk down the hall to see the aquarium before I had gotten there. She napped on and off during the afternoon. Chris came up to see her, and I had driven Oma in with me so she had a nice time visiting. In the evening, she wanted to take another walk, but ended up wanting to ride in the wheelchair instead. Walking is encouraged at this point because she had a little fluid around her right lung and walking would be good for strengthening her lungs. Respiratory therapy is also coming a few times a day to do some exercises. After moving over to the step down unit, Emily and T.J. came up in the evening and Oliver left to go home and be with Adelaide. It was a nice visit, but Sofia wasn't feeling particularly well. She kept complaining that her side hurt. She ended up throwing up twice, which was kind of unexpected because she had been fine up until this point. She also looked pale and didn't appear to be feeling well. The step down unit is full and there is are crying babies on both sides, which are essentially separated by curtains (the dreaded "pod" area). A good night's sleep is almost out of the question. At about midnight the nurse woke me up because she had been de-sated for about 15 minutes and the nurse paged respiratory therapy check her out and she also paged the doctor. The doctor came and checked on her and wasn't too concerned with her sats. There appeared to maybe have been a kink the in the humidifier on the oxygen and when they got a new one, her numbers were better. He was a little concerned that she hadn't pooped yet though since surgery and was pretty distended. He gave her something to help with that and she was uncomfortable all night and was up for a few hours. At one point I asked her how she was feeling and she said "kind of awful." Poor baby. She kept falling asleep sitting on the potty too. Finally this morning after being able to go to the bathroom, she felt much better. Her color looks better and the resident said that they will be taking out one of the chest tubes today. I'm waiting to get the results of her morning x-ray to see how her lungs look today. Progress is slow, but I think we're getting there. She is such a good girl. Let's hope this mother's day turns out to be a great one.

see the resemblance? Sofia at 3 and a half

and Sofia at a few days old

getting ready for her stroll

with one of her favorite nurses getting some morphine before our walk

Day 2 - Friday

Our spunky and fiery 3 year old made an appearance today. She is weaning from the morphine, which will probably be totally off tomorrow and is on tylenol and something else that I can't seem to remember the name of at the moment. Her pain management has been really good. She doesn't seem to be in much pain, just discomfort at most. And that is mainly from being confined to a bed. She gets really fiesty when it comes to the nasal cannula that is giving her oxygen. She is being weaned off oxygen, but will desat (pulse ox drops) when it comes off so she still needs it now. She hates having something up her nose and I can't blame her. If that is the biggest of her problems, we'll deal with it. She has gotten pretty mad that we keep making her put it back in. Hopefully, she won't need it much longer. Her arterial line was removed this afternoon. She's eaten some food and had lots to drink. I think her chest tube drainage is at an amount that is to be expected. She hasn't complained that the area that they are connected to on her chest has bothered her, so that is good. She looks great. She has talked to about wanting to see a pink robot. She's so silly. She's hoping to see the therapy dog, which will be around Wednesday. I'm hoping to see home by Wednesday. We should be moving over to the step down unit sometime shortly this evening. She would have gone over earlier, but apparently it's been busy over there so they pushed back the time. That's fine by me because the PICU has been quiet and she has had good nurses. Actually, all the nurses have been wonderful. Dr. Stewart and Dr. Edwards both have dropped by today. Dr. Stewart says that it doesn't get any better than this, so we are glad that they are pleased with her progress so far. Post op recovery is slow going and she's doing well. There isn't much action (which is good!) and we're just passing the time and giving her a chance to heal. She is sleeping now and Oliver just went to grab some food so I'm just going to chill. It's hard not to reflect on past experiences in the PICU, which were not nearly as calm. I'll leave that for another post, but I can really sympathize with the families of the little tiny babies here. And it seems like there a lot of little tiny ones here now. Time and Sofia's good health have erased a lot of those painful days. I hope these other families are as lucky. Here are some pictures to end with...

I told her to smile, so this is her half smile.

This is the Gortex tube used to make her conduit...it is actually this big in diameter!

sleeping comfortably

Goodbye Blue, Hello Pink!

I'm pretty darn tired, but I wanted to write a quick update before I go to bed. Sofia did wonderfully today from beginning to end. We were up at the crack of dawn and surgery got underway pretty early. We left her in the OR t about 7:45. We got a few updates from the surgical nurse. Dr. Stewart came to talk to us at around 2 I think. Some of the highlights of surgery: she didn't t need any blood, she didn't need any heart meds post surgery because her heart was pumping so well, I got to keep a big piece of Gortex tubing that was used, and they finished up with a chest x-ray because there was an abnormal count (read: there was a missing needle and they had to make sure it wasn't left inside before they closed). We got to see her after she was extubated. She's on morphine, an antibiotic, and pepsid for her stomach. She stirred a lot and fussed a little, but for the most part she just slept. She has two chest tubes for drainage, which at the earliest will come out after two days if there is little to no drainage at that point. She communicated with us that she loved us, wanted her daddy, saw a robot cart in the hallway ( she was amused by one of these the other days and it must have made an impression), and was thirsty. She can't drink yet, but hopefully will be able to soon. I can't get over how pink she is! Her pulse ox was as high as 97 (she is on oxygen, but still). I have never seen her with such pink lips, hands, feet. She is in the PICU overnight, and they have mentioned she will go down to the step down unit as early as tomorrow. Sleeping is limited in the PICU, so we decided Oliver would stay with her overnight and I came home to be with Adelaide and get a good night's sleep. I will head up to the Clinic early tomorrow morning again. She should be more awake tomorrow and coming off the anesthesia. Grey's Anatomy is on in the background as I'm typing this and I just heard them mention a Fontan surgery. I am so glad we are now post-Fontan! So proud of Sofia. Such a strong girl! I hope she has a good night. Thank you everyone for all the wonderful gifts for Sofia and for us, they are truly appreciated, but most of all the good wishes and prayers from so many people!

Pre-Op

I'm going to try just to make this a quick update because it's already Tuesday night and I have a lot to do before surgery on Thursday! Pre-op went well today. We had to pre-register for Thurs. and then Sofia had to get a chest x-ray, EKG, seen by surgical nurse and cardiologist and get blood work. Things went pretty smoothly until the blood work. I'm pretty sure she had a trainee try to draw blood, which resulted in having to go to the other arm by a different person to get the draw. Poor Fia. She was screaming by the end of it. All was forgotten though when we stopped for frozen yogurt on the way home. We didn't really learn anything new while we were there. Their plan is to extubate in the OR, which is good. We have to be at the Clinic at 6:15 on Thursday morning, which means we'll leave around 5:15, which means I'll be getting up way before the sun comes up. We are almost there. I'm working on getting laundry done tonight. My mother-in-law comes in from Toronto tomorrow night, who will be watching Adelaide at home for us. My sister Kate is coming in from Pittsburgh tomorrow night and will sit and wait with us at the hospital on Thursday. My parents will come up to the hospital too. My sister Emily will come up whenever we need her. Thank God for for family and friends! Sofia received a lot of nice gifts and new things to play with while she is recovering and I know so many people are thinking about her. Will update more probably on Thursday during our wait. Say an extra prayer this week for Sofia.