Home Sweet Home

While it's had some challenges, being home has been wonderful for all of us. Mya is making small improvements daily; she's sitting like a champ now, working on getting her crawling strength back and has tried to pull herself up to the couch a few times (assisted, of course). Her voice is even coming back very, very slightly. She's even doing a few things that she didn't previously; identifying her eyes, stacking her tower of rings when previously she'd only take them apart, and putting balls into a toy rather than just watching us play with them. We are enjoying every minute she's awake. She's only sleeping 4-6 hours during the day now, when a week ago she was only awake 4 hours. Such a wonderful change. Her sweet little personality is clearly back to "normal."

A few of the stressful times we've encountered:

Last night I was cooking dinner and it was time for Mya's feeding and medicine. Rob noticed that her feeding tube was dislodged. We decided we had to put in a new one. This is nothing short of a very stressful process. Rob tried to keep her pinned down (not easy I might add) while I threaded the tube down her nose to her throat. We were worried that it wasn't in the right spot; we had to do the "tests" several times to make sure it was in her little stomach. Needless to say, I got more and more stressed out about it as we kept getting negative results to verify its location. Time was ticking and she was freaking out. Another deep breath needed. Finally we were able to relax enough to get everything done appropriately. In the mean time, dinner was on the stove burning. Soon after that we decided that she hadn't had a BM in a few days, so it was time. Enter suppository. Yes, Rob allowed me to do the dirty work on this one. This stuff wasn't in the pregnancy manual I read... no one told me I'd have to do this as a parent! However, we are so thrilled to be where we are, I'll do whatever it takes to get this little one to the place she needs to be. Just don't call me when your kid needs a suppository. I hang up the nursing hat when she's better.

Look! A curl! Her hair grew a lot during the past month!

We're Home!

After a long day of learning how to take care of our child, and waiting 3 extra hours for her prescriptions, we finally made it home last night. I have to say it was pretty overwhelming to get home, unpack the necessary things and to get all of her food pump stuff and medications organized. Once we made a list of what meds & food need to be given when, it's made it much easier to deal with! Otherwise, everything else has gone really well. Mya threw up twice last night, she's been doing it almost every time she wakes up from a deep sleep. She has so much mucus in her throat, she starts coughing really deep, causing her to throw up. Needless to say, that's the only negative right now (plus the formula she's on REALLY stinks). I'm really looking forward to her first bath tonight, we have to wait to have Rob's hands too, since I don't trust her strength of sitting alone right now. She has had a really good day, we've also weaned another step down on her meds, and no visible signs of withdrawal. Thank God. She's been awake a lot today, playing with birthday toys, books and gifts people have sent our direction. They've been awesome! It's so fun to see a normal little Mya. She even scowled at Rob today! It was great! She's been able to sit for a much longer time today on her own, and she tried a couple of times to crawl, but has learned her body doesn't want to work very well yet. We were also able to bring home a foam wedge that she can have in her crib and on the living room floor for nap time. It's working out really well. I'm not sure how easy this feeding tube will be to keep in her nose once she realizes how to take it out. I'm pretty sure the day is coming soon! We have an appointment next Thursday for a swallow test for Mya, back at Children's. This is the next thing we're praying for. They're going to give her a drink of her normal formula, but will put some dye in it and will track how it's being taken in. This is a benchmark time, because if she's not able to swallow thin liquids (which will be the most difficult for her, viscous liquids will be easier), then she'll have to stay on the feeding tube possibly a month or two longer. That would be a big bummer, as I'm pretty sure the daycare wouldn't be willing to manage such a difficult schedule. So, it could require a shift in lifestyle for a while longer. However, I'm praying that we don't have to make any different choices!

Here is Mya's personal pharmacy...

Surprisingly, my flowers are looking great! We've had cool enough weather that we came home to somewhat of a nice looking yard! My first harvest of my DELICIOUS cherry tomatoes! I sure wish Mya could enjoy them with me! Hopefully she'll be able to next week!

Chillin on the living room floor, listening to her CD from Aunt Michelle

I posted some incorrect information on 8/20 that I wanted to clarify. Mya's temporary vocal cord paralysis isn't affecting her ability to swallow. I misunderstood the information originally. I guess your vocal cords are lower than where you swallow, so the two things are not connected. She just needs healing time on her throat to be able to swallow.

Note to self: Surgeons aren't the most gentile with care.

Usually after surgery they wait 2 weeks to take stitches out. Mya's incision has healed so nicely, we've been a little concerned that they haven't taken them out yet, since it seems to have healed over. It's been only 10 days so they haven't wanted to take them out. Originally she had dissolving stitches in her incision and they use a glue to close the skin. Unfortunately, since they had to open her 3x, a slight infection was forming so they had to use external stitches with her third closure. A new surgeon "fellow" (surgeon in training) did the stitches, and the pattern was not the "norm," so our nurse had her come help take them out today. Keep in mind, patients are knocked out when in surgery, and I'm pretty sure gentile isn't a word used in the operating room. Mya about went through the roof when she started to take them out, it obviously caused her a LOT of pain. Even though she doesn't have all of her sounds, it was very clear that it hurt. Poor kid is bleeding from 4 different areas because they were so buried, not to mention it got blood all over her little shirt and blanket. LAME! She didn't have much sympathy for little Mya as she yanked them out (I was cringing all over) However, she did say, "remind me not to do this type of stitch again!"

Deep breath...

Thank God that they usually work on kids under anesthesia!

The nurse just came in and said we are no longer in isolation, her tests came back negative. Rock on! At least we got a single room out of the deal & now we have a much higher chance of going home tomorrow. Hooray! Isolation was more work for the nursing staff than for us, they had to put masks & gowns on prior to coming into the room so they wouldn't spread her possible infection to other patients if she had one. Crazy. Going home seems a fairy tale right now, a dream that may just come true, we'll see!

A Much better day!

Finally I got a few advocates for our opinion on Mya's pain meds... we now have a plan to wean her off of the high dosages that Rob & I agree with. The original plan was going to take a really long time (literally 3+ months) and had some adjustment times that gave her really high dosages mid way through that we thought would only make her crash. It took several conversations and a lot of different people, but we are finally all in agreement with the plan going forward. In the mean time, the reduction to 10 from 12 of her dosages have been a really positive step. She's been more "with it" when she has been awake, and she's been up longer. I wrote my blog posting yesterday at a very frustrated state, but she woke up that evening and was a very normal little Mya. She's sitting on her own finally and was trying to pull her self up in her crib yesterday. So great to see. Another reason we've been kept here longer is because of her junky sounding breathing. She has a lot of mucus stuck in her throat, and it's an area that could contract an infection. Usually she could cough it up, but since she's been on these meds, they seem to be acting as a cough suppressant, keeping it all in her chest. The bad part is that she may have an infection- she coughed up a lot of junk yesterday and was a color that they were concerned with. While I don't think it's anything to worry about, they put us in isolation. HOORAY!!! We now have our own room! I haven't slept better (while in the hospital) in over a week!

My brother Mark joined us for dinner last night, we went to our new favorite calzone place here in the U-district. Delicious food... and outside of the hospital! He's flying back to Saipan this morning to teach another year of school. It was nice to see him prior to being gone for so long! We're going to miss him (and his wife, Brittany who is already there), but Brittany he got to the airport on time today! He should be on his way! Thank you for your comments on my bummer day yesterday- we are so thrilled to be this far in her recovery. The original pain plan made the road seem much longer than the new plan so I've got a lot more hope to be back to normal soon! Today marks week 3 in our journey, 3rd week's a charm???

Will we ever get out of here???

So they've changed our discharge date to probably Wednesday at this point. The one thing holding us back is the level of her pain medication. Funny part is that she doesn't need if for pain anymore, just needs it to wean. If it would have been a "normal" surgery, she'd only be taking Tylenol right now. However, she's currently sleeping 20 hours a day, due to her really high dosage of Morphine and Ativan. I worked a good portion of the weekend to persuade the "pain team" to lower her dosage so she'd have more awake time. Unfortunately for us, it sort of backfired as they decreased one and somehow ended up staggering the timing of the other- which has elongated her sleeping time today. They took her down from 12mg/6hours to 10mg/6 hours yesterday, which for anyone who understands is a super high quantity for a little peanut. While lowering the volume is a move in the right direction, it's currently 2:00pm, she's sleeping, and it's time for another dose of Morphine. Ugh. It's going to be a long road, possibly 2-3 months to be done with these nasty drugs. I just can't wait for the normal Mya to return.

Play Time

Rob was so great to spell me off last night, I went home and got to enjoy 11 straight hours of sleep without any disruptions... wonderful. I ran a few errands and picked up a puzzle for Mya, it seems to be a hit! She also got a birthday gift in the mail that we've been waiting to let her open, Thanks to Benjy & Erin, it was a fun little thing to do today, she likes her funny little shaking pig!

Today we have to change her tube, just to get practice. Big yuck. The only good part is that we can put her medicine down the tube, so we don't have to fight her to get it in her mouth. However, if it means getting out of here, we'll do it!

Yesterday was a big day for Mya. She had a lot of tests of her little ears, nose and throat. They found that her right vocal chord has a temporary paralysis, caused by ECMO & the breathing tube, thus the reason for no voice. This could last up to a month, but it's hard to say when they'll repair. Your vocal cords help direct your food and air to the right spots in your body. Since Mya's aren't working quite right, eating & drinking isn't safe since the food could end up in her lungs instead of her stomach. Until they get a little better, she has to have a feeding tube back in her nose to get some nourishment. We have to learn to put it in, since we'll be taking her home with the tube in and it could come out easily on our clock. Definitely an unfun (even if I'm making up the word) thing to learn. Reason number 1,001 I'm not a nurse! She's also on some pretty high dosages of medication, so we have a long way to go with getting her back to "normal." We will probably be discharged on Monday, but will come back for a swallow test a week later. This test includes some dye that she'll swallow and they'll track where it lands. Until then we hope that her vocal chords start to get better so she start to eat again. She will have to start all over with rice cereal, baby food and then onto solids. Additionally, she's not able to hold her head up or sit, so we'll have to work on that again as well. I'm sure it'll come back fairly quickly, it's just a slow go of everything. Until then we get to continue snuggling our little one and she is still her sweet little personality, who loves snuggling with her new little friends! Thank you to those of you who have given her little cuddly critters!

Today we got to change rooms. We had a little 2 year old roommate last night who cried all night long... keeping all of us up. It's not as big of a deal when it's your kid, but it was pretty hard to watch Mya wake up due to his pain. Luckily they moved us this morning, Mya hasn't woke up yet! Luckily I got a nap in too. Our new little roommate is 3 weeks old, her name is Zoe. Please pray for her, she's awaiting both a heart and liver transplant, but has already had a heart surgery. I met her Mom & twin sister today as well- they've got a lot going in their family.

Mya is still not able to speak from having the tube down her throat. I it could take up to 2 weeks to get back to normal, assuming no permanent damage has been done. She was doing pretty well eating until last night, and now she doesn't want to have anything down her throat. We think she has a really sore throat from the tube. They're coming soon to watch her swallow and possibly put a camera down her throat to see how things look. Unfortunately for Mya, she may have to have a feeding tube down her nose again if she doesn't start to consume on her own. They want to give her a diarrhetic to get some fluid out of her lungs from today's Xray, but can't give her that medicine if she's not taking in any liquids. However, with all of this, they're still planning on kicking us out this weekend. I can't wait to go home! Between monitor alarms, baby roommates who cry all night long and hospital food, we're all ready for a good night rest in our own beds. We bought Mya her first doll, she loves it! I've never noticed her hugging anything previously, but she naturally grabs the doll and holds it tight! Of course she has matching hair, they're pretty sweet together.

Whew!

We have had a long 24 hours. After Mya's cath test, her medications were decreased. While this usually an okay thing, it was probably too aggressive for Mya bug. She was awake for 11 hours straight yesterday, dealing with withdrawals from her medication (in a normal day she isn't up for more than 3-4). While she was seemingly happy the whole time, playing and wiggling like a 1 year old, she couldn't relax to sleep and was kicking and "playing" the whole time. She got a fever and began to sweat a lot too... poor kid is really going through an addictive withdrawal! It was a lot of work for me- not that I don't love to play with her, but for 6 hours straight trying to find activities to do in a hospital bed without pulling out all of her cords & wires was actually really challenging and exhausting. Included in that she had most of the yucky stuff taken out of her, including the drainage tube (which is really painful) & blood lines (kind of an IV that they can take blood samples from). It took several hours to "prep" her to leave the ICU, including 3 different people trying to get a IV into her little arms and about 7-8 pokes in the mean time. She was such a trooper. Once we moved to the "main floor" I learned quickly that there is a definite difference in amount of time with a nurse/care. I'm lucky I got the "training" from the nurses in ICU, they taught me a lot! They've gone back up on her meds right now, and will be weaning them a lot slower from here on. So, luckily that has been ironed out and she slept thru the night. The wonderful part is that we can hold her now when we want to- so great. Mya enjoys it too. I've been feeding Mya every 2 hours from a bottle, and I tried to do some applesauce with her today sitting in a high chair. She got pretty tired sitting up for so long, her head got really heavy, but it was good for her to try! They're trying to kick us out of the hospital by the weekend, I'm really looking forward to being home. We'll still have some major pain medication to get off of, but we luckily don't need to be off of it completely prior to going home. It could be a 2-3 week process. Now, time for a nap for me!

We're getting kicked out of ICU!

The past 24 hours have been monumental for us! Mya got her chest tube out, the pacemaker wires (standard procedure to add post surgery), her blood lines and is essentially disconnected from all the tubes; with the exception of one IV line that they're going to add. I will even get to hold her again today. So wonderful. We are going to be sent to the main floor this afternoon! She's been wired since 2:00am and hasn't taken a minute to relax. They were weaning her from her medication, possibly a bit too fast, and she's wearing out our nurses and I'm just getting the 1st chance in 4.5 hours to sit back down. She's playing like a champ and keeping us super busy. I have a feeling this will be my last posting for awhile. She's going to start to suck more of my time- I love it!

LIFE IS GOOD!

After a lot of frustration and crying (her throat is probably pretty sore) we finally landed on the calming item... none other than her trusty pacifier. This may be the best day ever for Mya! I've never been more excited to give it to her. Sure, we could have taken this time to wean her from the thing, but this little stinker deseved every minute of enjoyment tonight!

Mya's Surgery Was A Success!

The news we've been so anxious to hear has been confirmed. Mya's surgery worked! We are so amazed by the results; genuinely a situation that will be written about in medical journals! The other wonderful news is that they took her off the ventilator too after her heart catheritization test, so the breathing tube is out after 13 days!!! I'm thrilled if you can't tell, it's such a blessing. They haven't taken out her chest drainage tube, but I assume it'll come out in the next day or so. She is breathing really heavily right now and pretty froggy, due to the junk in her lungs. She'll gain strength soon (possible by tomorrow) to be able to cough it out again, she's just been unable to do it herself for the past 2 weeks. She has also been hanging out for the past two days with her legs in the air. Since they went through her thigh area for her procedure, she has to keep it lowered for 4 hours, so they've restrained her little leg. It's definitely cramping her yoga pose style.

Everyone is amazed by her recovery. We just had a nurse call her a miracle baby. Our surgeon was even pressing the heart cath team for outcome information; as he was very interested in her status. We've had many nurses in our room checking on her and giving their congratulations! What a wonderful story for all of us to share, about our amazing little angel.

Rob is headed back to work tomorrow; hard for him to leave his little girl in the hospital, but real life is awaiting our return.

Mya hasn't gone to her cath lab test, possibly in the next 30 mins.

Monday, Monday

This morning Mya had a great xray. She has one every day around 4:00am that they wheel into our room. Her lungs are beginning to clear up a lot. Great news. It also seemed that the left side of her heart looked smaller too; it'll be confirmed today with her test at around 1:00pm. That would be the best news since that was the entire objective of our surgeries.

As for getting out of here, several people have been asking an approximate timeline at this point. We asked our ICU doctor and he thinks that we could be out of ICU possibly by Friday and then out of the main floor a week after. She is on really high levels of medication that she'll have to be weaned from, slowly. Additionally she hasn't been eating much at all. She'll have to be eating solid foods again; baby steps. She hasn't even been able to speak at this point! We need that tube out first! Please pray for her test and that everything would be as expected- for once in our experience!

A Time of Healing

Mya has had a great 24 hours. The nurses have finally got her to a good level of comfort with her cocktail of meds. She's been having a fever off and on for a couple of days, but othewise, her "stats" look really good. Today she's suprisingly more alert and awake than we expected- possibly because she's gaining more of a tolorance to the drugs she's on, which will be harder to come off of due to the duration of our stay. However, she's so sweet in her silent way, raising her legs in the air, kicking her feet and looking around, she seems to be pretty content. Here is a picture of her new incision (with the yucky drainage tube still in). This time they had to put stitches on the outside because she had a slight infection in the original incision. Not as pretty for sure, but we'll take it for a healthy heart! Tomorrow is the day of our heart cath test, a pivotal decision day. We're praying that the surgery did everything that it was intended to do, and they'll be watching the blood flow through her heart. We pray that everything goes as expected (although with Mya's history here, we should learn not to expect the normal outcome!) so she can get the breathing and chest tubes out. Our friend Noelle was moved out of ICU today to the "main floor," we're so thankful for that! It's a real blessing for kids to be able to be moved out of here!

Day 12 of Our Journey

Last night we ended up moving rooms in the ICU. We had our own room previously, but we needed to change because a little girl who has to be in isolation required a single room. We are now sharing a corner "suite" with a tiny little infant who has had some kind of heart surgery. Please keep her in your prayers! She looks like she was premature, she's so small, I'm not sure of how long she's been here. We're so blessed to have a little stinker with extra chub- her size has been very much to Mya's benefit through this whole ordeal. I went home last night and finally had a peaceful night's sleep. Rob wanted to stay with Mya in the hospital. I had a lot of errands to run, so I was able to get some of them done prior to coming back to the hospital today. Funny how life continues, a bummer how those bills still have to be paid! Apparently she had a pretty restless night (so did Rob...), the nurses have been trying to find the right combination of sedatives and pain medications to keep her comfortable. They're both sleeping now. Time for rest.

The Details...

So, with humble hearts, we are proud to say that Miss Mya should OFFICIALLY be on the real road to recovery. This situation is nothing short of a miracle. God is good. Mya's left cornoary artery was imbedded in the aortic artery wall. Dr. Cohen went in and made a very small incision to open it up so more blood could move through. This was a very complicated procedure, due to the tiny size of our 1 year old's heart. We are back in her room- she looks great. They didn't even turn up her ventilator level- so she's breathing a majority on her own. There aren't any new incisions, and since she didn't have much time to heal from last Friday's surgery, the process was quicker to open her back up. Mya will need to take aspirin for the rest of her life, since it thins her blood to the level she needs to avoid clotting. She has to have another heart catheterization test on Monday, to verify the improvement of blood flow, so she'll have to keep the breathing tube in until that time. I CAN'T WAIT for it to come out! I'm pretty sure I've said this 100 times, but this one feels much closer to being real. It will be so wonderful to hear her little voice again. I can't wait for her first "hi!" and for her to blow us unobstructed kisses. All of the staff are as relieved for her as we are, they've become personally connected to our family. We've encountered such wonderful emotional support in addition to the physical support by each staff member that has graced our room. Every one seems to really like Mya, they haven't even seen her super cute antics when she's healthy! Lots of comments on the red hair... It's difficult to express our level of joy at this time, and we are so thankful for every moment we've experienced for the past two weeks. As difficult as it's been, we have learned many different times how our lives are so precious and to live for & enjoy every waking moment we have with our family. The amount of support we've been given has been a wonderful blanket of love wrapped around us. From friends bringing us meals, to small gifts for Mya to the immense amount of prayer that we know is happening- we are loved. People we don't even know have been praying for us- how amazing. Thank you for your commitment to our blog and I look forward to posting more videos of our growing girl and the crazy fun kid stuff she does.

12:45pm Update: MYA IS OKAY!!! The procedure seems to have fixed her issue, HOORAY!

10:15am Update: We just kissed Mya goodbye for surgery and were able to walk with her to the doors of the OR. From the meeting this morning, they apparently talked about her situation for a long period of time. The good news is that they are all fairly certain that option 1 (from my other postings) is the reality. However, because the size of her coronary is smaller than a

• bullet point on this screen, the procedure is VERY complicated. If it is too small/difficult to fix when they get into her heart, they're are several other options for what they can do and how there are other fixes. However, we are convinced that this is the last time that they have to go into our little girl's chest!!! We even told them all that as we kissed her goodbye.

Thank you for your continued prayer!

7:30am Update Mya is the only one having surgery today. Because of the complexity of the situation, all of the sugical & doctoring staff have a conference every Friday. Mya's case is the first on the docket to be discussed. Although Dr. Cohen is fairly confident in his plan (he's the top surgeon of the Cardiac division), they're getting a lot more opinions on the situation to make sure everyone agrees with the procedure today. That should last until around 9:00am, and Mya's surgery is scheduled at 10:00am. Rob & I are surprisingly at peace with the whole situation, and are confident that her issues will be solved today. We'll get more details of the procedure coming up, but are thankful to have some early morning time to play with Mya and read her a few books before she's out of commission again for awhile.