The Start of Something New

It's been a while since my last post. Everything has been so busy and time has gotten away from me. Monday will mark 2 weeks since Lu's surgery and everything has been going great. We were discharged from the hospital on the Friday morning following my last post. It was so exciting. Around 8am, the nurse came in and started the discharge process, which surprised me because I figured it would be later in the day for some reason. They did another echo to make sure everything was fine after they removed the pacing wires, the day before, and then we started getting ready to leave. When the doctors did their rounds, they went on and on about how Lu was the ideal patient. She had recovered so quickly and with such grace.

By 10am, we were on our way out of the hospital with our healthy baby girl. I knew, in my heart, that after I walked out of those doors, everything I had been hoping and dreaming of for Lu, and for our family, would finally be happening, in the days to come. We went from giving her 4 different medications, several times a day, to only two different meds, twice a day, with lower doses. She is on Lasix for fluid retention and Zantac for reflux but can be taken off of them in a few months. I edited all of my alarms, on my phone, that reminded me to give Lu her meds and smiled as I deleted the 6am and 10pm doses. I couldn't wait to start having a normal routine with an earlier bedtime and having less medications made that much easier. I also looked forward to feeding her, watching her enjoy eating, and watching her gain weight. For 6 months, I had been worrying about her health, checking on her often while she slept, weighing her nonstop, and bringing her to the doctor twice a week and now I could just enjoy her and let her be a kid without worrying about every little thing she did. Needless to say, I was ecstatic!

Since we have been home, Lu has been a normal baby. We are amazed by how much she is eating. She has been gaining about an ounce a day and has been eating almost twice as much as she did before the surgery. She is also adjusting well to her new routine. She has a bedtime of 8 or 9pm and sleeps for about 12 hours, waking only twice to eat during the night. Next week we are going to move her from her pack n' play, next to our bed, to her crib in her own room. She is pretty easy going so we expect that it won't be too much trouble.

We saw her cardiologist, Dr. Appleton, in Orlando, last Wednesday. She got another echo and it showed some "mild to moderate" mitral valve leakage. He said that this is a common thing with these types of heart repairs and could improve over time. He also said that it shouldn't cause any problems in the future if it doesn't get worse. If it does get worse, it can be treated with medications and/or a possible surgical correction in 5, 10, or even 20 years down the line but it is still early in her recovery so we are hoping it will be okay. She still has no physical restrictions, which we are very excited about. She sees Dr. Appleton again in 2 months and can be taken off of her Lasix and, possibly, the Zantac as well since reflux usually goes away after the congestion from heart failure resides. After that she probably only need to see a cardiologist every few years.

Now we are just adjusting to our new routine and our hungry little girl but most of all we are enjoying Lu and her true personality, without the stress. :)

No more wires!

Time to go home!

Home and happy to be reunited with my cousin Sailor!

Piggy!

I love food!

Adventure Time- Tuesday Afternoon to Thursday Night

Tuesday (Post-op, Day 1):

They let us feed Lu a bottle on Tuesday afternoon. Before surgery, she had a hard time eating. She would normally eat about 1-2 oz. at a time so we had a lot of difficulty getting her to gain weight. Not only did she have reflux but eating with a hole in your heart is painful and exhausting. Only 1 day after her surgery, she ate 2 ounces of Pedialyte around 1pm, 2 oz. of formula around 2pm, and 4 ounces of formula around 6pm. This was amazing for everyone to see since she had never eaten that much and she had a serious operation the day before. She continued to eat well for the rest of the night.

I also got to hold her. I was so surprised and excited when they said I could do that. Lu didn't seem to mind it either. She went right to sleep and was still and quiet for the first time since her operation. It was a truely amazing feeling.

It looks like I am holding her but she is really holding me.

Lu got to hold Yaya too.

 She was still pretty groggy from the morphine that she was getting every few hours but as they started weening her off the pain meds, she started getting a little playful but you could tell she was very out of it. They would take her on and off the oxygen, depending how her O2 saturation levels. They took the her arterial line, in her wrist, out and removed the Cerebral Oximetry Monitor patch off her head so she looked a less "hooked up." They also removed her restraints. 

That night, Matt's parents went to the hotel and Matt went to the Ronald Mcdonald House while I stayed with Lu. She did pretty good during the night. She tossed around and whined a little bit and got up to eat a few times but was pretty calm. Overall, Lu's progress was pleasantly surprising. I went to bed pretty late and didn't sleep much, not from worry, but from excitement to see what kind of progress the next day would hold.

Wednesday (Post-op, Day 2):

At 5am, Lu got a chest x-ray, which really upset her. She had become very weary of anyone unfamiliar, especially if they came near her and touched her. I guess having so many people causing her physical pain was confusing. She is just too young to understand that they are helping her to get healthy. The look she would give me, when she was scared, made me want to cry. It was like she was trying to get me to help her, even if they were just checking things without hurting her. I know most mothers would take their child's place in those situations, if given the chance. I was always the kind of mom that recognized that a child needed to learn how to cope but at those moments, I would have taken her pain times infinity for the rest of my life, if she could have had just one minute without pain.

A few people from physical therapy and occupational therapy came to play with her and move her around. One of the goals for that was to make her comfortable and ease her anxiety about strangers and after a little while, she seemed to ease up and be more welcoming to people. The fact that she was being poked and prodded less and less, over time, had something to do with that too.

Wednesday was a good day. Lu was starting to look less swollen and would stay awake for longer periods of time without seeming uncomfortable. She was getting pain meds less often and eventually they switched her to Tylenol. She played a little bit and watched Handy Manny on TV but she was still a little uncomfortable at some times and was not very vocal or smiley. Her throat was a little sore from the having the breathing tube on Monday so that, and the pain meds, might have been the cause for her silence.

They removed the chest tube and the CVL (the line in her central vessel in her neck). This was great because not only was the chest tube pretty big and uncomftable, but it was draining into a clear tube and emptied into a large measuring device at the end of the bed. The CVL was also very large. It was held in her neck with stitches and about 3 or 4 IVs were hoked into it. It was very hard to move her and got tangled up a lot with the other wires on her body. They took another chest x-ray after they removed the tube to see if any air got sucked in through the chest tube wound during the removal. The results of the x-ray looked good. This was relieving because if there had been air, they would have had to re-tube her. The wound was bandaged and she seemed much more comfortable after that. It was also easier to hold her without all the extra stuff. 

Bye Bye Chest Tube

They took her off a few meds and all IV fluids so she began taking her meds orally. After that, she had nothing going through her IV ports. Two IV ports remained, one in her hand and one in her foot, so that they could collect blood and administer something through the IV if needed. Everyone, including Lu, was very happy. After every removal of a piece of equipment, her body got a little less cluttered and our hopes for her speedy recovery increased. This also allowed us to give her a sponge bath, which she did not like. It is way to cold in a hospital for a sponge bath but she got all cleaned up and dressed in some pretty PJs which made her happier in the long run. 

Paging Doctor Lu

That night, Matt's parents went back to Melbourne and it was my turn to sleep at the Ronald Mcdonald house. I wanted to stay but I needed some sleep and I knew she was in good hands with Daddy taking care of her.


Thursday (Post-op, Day 3):

In the morning, I had a nice walk to the hospital. It was very wet and cloudy out but the air felt good. I had been having severe headaches, back pain, and an earache so I figured I needed some exercise and fresh air. 

When I walked in, Matt was standing at Lu's bedside while she played and watched TV in her bouncy seat. I greeted Lu and she gave me a huge smile. I didn't know then, but her smile was just the beginning to a great day. As I scrubbed in, Matt told me that she had just eaten a bottle and a jar of sweet potatoes. He also told me that they removed her IV in her foot and she was scheduled for an echo. If the results were good, she could be discharged the next day. It was great news to hear and suddenly my aches and pains went away. 


She played and smiled and talked all day. She was, pretty much, back to the normal, happy, and spirited Little Lu. As the hours passed, and her stats remained good, the positivity in the room peaked. We had a new, more normal, feeding and sleeping routine and Lu was happy to be around Matt and I all day. We hung out and read, watched TV, talked, and played. It was a day we were not expecting for at least a week. Lu's strength amazes everyone each day and her character seems to put everything into perspective. 

I can sit up by myself!

My favorite toy, Mrs. Crabby McCrabberson III

After the echo, they removed her pacing wires. They also ordered another limited echo for Friday morning. We will get the official results by mid morning but the nurse read the first echo report to us and it said something about regurgitation and enlargement of some sort. We are not sure about what this means so we are not sure if it is normal or not. 

Right now, it's about midnight and Lu is sound asleep. Her heart rate is a little low, but not bad, and everything else looks good. The decrease could just be because she is in a deep sleep but I are going to bring it up to the doctors tomorrow.


I've got about an hour before I have to wake her up to feed her. Funny how something that was difficult before is something I know look forward to. It is something new to me, that she actually likes to eat, and I will never take that for granted.

Don't Worry, Be Happy :)

Adventure Time- Sunday Afternoon to Tuesday Morning

We left Melbourne around 3:30pm on Sunday and arrived at The Ronald Mcdonald House in St. Petersburg around 6pm. We checked in and went to dinner with some friends, in the area, around 7. We had a pretty uneventful night, got up around 4:15am, and got to the hospital around 5:15.

Ronald Mcdonald House West

After completing registration, we went up to the PICU for some testing. They started an IV, took some blood and nasal swabs, did a chest xray and EKG. This all took about 2 hours and during that time, Lu did great. She did not like the tests but she slept and played in between. We spoke to the anesthesiologist who had, incidentally, had open heart surgery himself as well.

Registration

Waiting to take tests

She loved eating my visitors tag.

What a fashionable gown. She was pretty happy even though she hadn't eaten anything in a while.

Sleeping during the pre-op EKG

After a lot of waiting, the nurse took her away for surgery. She was sleeping when we handed her off so that made it a little easier. It would have broken my heart to see her scared or sad.

My in-laws are here with us but my mom had to stay in Melbourne since my dad is having some medical procedures this week. It is a lot of help to have their support and my mom is being updated through phone and Facebook.

The wait during surgery was easier than I thought it would be. I slept a little bit, we ate lunch, and hung out in the family waiting room. The nurses updated us every time something significant was happening. The time went by pretty quickly and we all knew she was in great hands.

In Lu's open-heart surgery , the surgeon makes a cut in the chest and a heart-lung machine is used to maintain circulation while he closes the hole. The ASD is closed by sewing a patch of pericardium tissue over the defect.  Eventually, the tissue of the heart heals over the patch, and by 6 months after the surgery, the hole will be completely covered with tissue.

After surgery, which lasted about 3 hours, we talked to the surgeon. He actually had to close up 2 large holes in the atrial septum called the ostium secundum and the ostium primum as well as a small PDA, which they tied off. He explained to us that, although the next few days would be intense, children tend to heal much quicker than adults and she will feel better than ever after she has recovered. Because of her ASD, the blood flow in her heart and to her lungs has been very inefficient for her entire life. The holes have prevented the heart from operating correctly and the non-oxygenated blood has mixed with the oxygenated blood which has made her lungs have to work harder as well. Normally the non-oxygenated, or blue, blood in the heart travels from the right side of the heart, through the lungs, turns to oxygenated, or red, blood then travels to the left side of the heart and throughout the body and back. But with most CHDs the red and blue blood gets mixed together and blood and fluid can collect in the lungs and other organs and back and forth between both sides of the heart, causing several problems, as you can probably imagine (see diagram). This has also caused the right side of her heart to be 2-3 times larger than normal and the left side to be 2-3 times smaller. As you can imagine, this has caused every exertion of energy, from eating and playing, to even breathing, to be like running a marathon. But after her repair, the proportions of the right and left sides of her heart were closer to normal and the blood flow was normal.

She was moved to the Cardiovascular Intensive Care Unit (CVICU) around 2pm and we got to see her shortly after. We were prepared, ahead of time, for what we would see but it was still pretty hard to see her hooked up to so many tubes and machines. They sometimes extubate in the operating room but Lu was not breathing well enough on her own, then, so she had a breathing tube (intubation). She also had a chest tube (to drain fluid and blood from her surgical area) and temporary pacing wires, several IVs, a pulse oximeter (to read how much oxygen is in her blood), a catheter, and a few patches and wires that recorded her vitals and O2 stats. She was very swollen, especially on her face so she kind of looked like a different baby. She looked pretty comfortable and would open her eyes for a few seconds here and there and she would grimace and try to cry, which was hard to see, especially since she couldn't make any noises due to the breathing tube in her throat. After she started to wake up a little more, they attached her arms to the bed with arm restraints to prevent her from pulling at the breathing tube. They slowly lowered the level of oxygen going through the tube until she was breathing well on her own. They removed her breathing tube around 9 or 10pm and replaced it with a nasal cannula.

A few hours after surgery

We all left after 10pm since she was still out from the anesthesia and pain meds. I had a severe headache so we chose to get some sleep so we could be able to care for her better when she was more alert. We got a phone call a little after midnight, which scared me pretty bad. The nurse was just letting us know that Lu was having trouble breathing on her own so they gave her a CPAP mask (which is just a mask that forces air in her nose) and tweaked her pain meds. They also inserted a NG tube (Nasogastric tube- a small tube that is inserted through the nostril into her stomach to remove air. It is also used for tube feedings).

Tuesday (Post-op, Day 1):

We got to the hospital in the morning as they were taking the CPAP off, which upset her a lot. Her numbers were good so they are slowly removing things to see how she tolerates it. They have taken out her catheter and NG tube and removed her brain oxygen monitor (a patch on her forehead). She is still receiving morphine but less often. She seems pretty comfortable and is trying to sleep but you can tell she is hungry and wants to roll over onto her side or stomach.

If she continues to do well, they will let us bottle feed her this afternoon, which should make her very happy. Right now, we are just letting he rest and hanging out. I will try to update the blog tomorrow night.

No more breathing tube or CPAP