she just keeps getting better...

Two days post-op and we couldn't ask for better results...Mia is doing sooooo well.  Her tummy and chest are pretty swollen from the operation, but she is nowhere near as puffy as she was when she was on the ECMO.  Her ventilator settings (pressure and rate) were lowered this morning, and her Morphine was decreased. Her UAC (umbilical IV) was removed this morning, since she now only requires a blood test every 24 hours. She has still been hanging out under the photo therapy lights, but hopefully they'll be removed tomorrow. The best news of the day is that if she continues on this path of improvement, her ventilator might be removed by Friday, and then she can start being fed. I'm trying not to get too excited because Friday still seems a long way off, but I know my little girl is definitely on the mend.

Tonight, Ryan and I popped in to say good night to Mia just in time to see her little eyes uncovered for a bit. The nurses perform an evaluation on her every four hours, which includes things like taking her temperature, repositioning her little body, drawing blood if necessary, listening to her heart and lungs...AND turning off the photo therapy lights for a little bit to give her eyes a rest from the goggles. She was so alert tonight with her little goggles off. She looked around and moved her little arms, and we had a good "conversation." It is the most alert I've seen her yet. After about 45 minutes of checking things out and fighting off the sleepies, she fell asleep with my hand on her head. It was almost like putting her to bed - a very special moment for sure.

The resiliency of these sick little babies and kids just amazes me. I can't imagine going through what she has gone through and recovering so quickly.

I am expecting big things from this little girl over the next few weeks. She has a lot of family anxious to meet her, especially a big sister who can say, "Meeeee Ah" very, very well. And I'm anxious to have our little family of four under one roof, even if that roof is the roof of a trailer under the roof of a shop.

today is a good day

Today I am feeling the relief I was hoping for last night. I think my brain just needed a rest so it could process all that has happened in the last week. Mia is doing amazing today, she is so strong. Except for some puffiness, especially in her abdomen and chest, she hasn't taken any of the steps back that we were warned about. She is down to only two IV's - a broviac IV in her neck, and a UAC in her belly button. Her hands and feet are needle-free. She is being slowly weaned from the oxygen on her ventilator (down to 25% today from 40% yesterday), and is also being slowly weaned off the Morphine. She is still hanging out under her "tanning bed" lights, but opens her eyes and looks around when she gets a break from her goggles every few hours. I changed another diaper today and she had a small bowel movement (you can tell I'm a mom when I get excited about poop).

Obviously, we are not completely "out of the woods" yet, but I feel really good about Mia's recovery. She has already proven to be a fighter so many times, and I'm sure she is as anxious to come home as we are to take her there. There are many milestones she will have to reach before we can take her home with us, and it will probably take several weeks, but the baby steps she is taking to recovery let me know that we'll get there soon enough.

***

Ryan pulled our trailer down here on Sunday afternoon. It was a difficult decision to make for me, easy for him. We obviously cannot afford to stay in a hotel and we weren't entirely comfortable staying at the Ronald McDonald house. Fortunately, the Kiwanis House has RV hookups and we will be camping in their parking lot for a while. And since we were already living in the trailer, moving it down here and "setting up house" really didn't take too much effort.

When your life turns upside down, I think you subconsciously seek out any form of stability you can hang on to. While our first night (last Sunday) in the hotel was miserable, our room quickly became the one constant we could rely on. It provided TV, hot water, and a place to step away from the hospital. As strange as it sounds, it became home-like very quickly...at least for me. Even though I knew we couldn't afford to stay there indefinitely, I was comfortable and I didn't want to leave. Of course, now that I'm sitting on my own bed in our trailer, I have different feelings, and I'm really glad Ryan was ambitious enough to go home and get the trailer on his own.

Speaking of Ryan, have I mentioned how amazing my husband is lately? Seriously, wonderful. I can't even begin to list all the ways he has helped me through this, and hopefully, I've been able to help him too. In our relationship, he is very much a rock for me - steady, someone I can lean on (literally and figuratively), calming, supportive...basically everything I've needed, especially in the past nine days. When he looks at our sick baby, I know he is feeling the same pain I am and we've taken turns crying on each other's shoulders. I couldn't ask for a better partner.

We say "I love you" a lot in our little family. Ryan and I say it to each other several times a day. We tell Laci we love her, pretty much all the time, and of course, we tell Mia we love her every time we see her. Even little Laci says "I love you," although it usually comes out sounding like "Ah mahd oh" (ummm, what?). I can't tell you how important it is to tell your loved ones how you feel. Life is very precious and also very fragile, you just don't know when someone you love might be taken from you. As I've gotten older, I have grown out of the habit of telling my parents and sisters how much I love them. And even though I know that they know I love them, it still needs to be said, out loud. I hope my girls never outgrow saying, "I love you."

(sister needs a bath and some lotion like you wouldn't believe)

monday night post-op update

Mia's surgery went well today. The surgeons were able to repair her diaphragm without any major complications, and she is resting comfortably under heavy sedation.

They initially made three small incisions in her left side and attempted to do the repair using a camera. All of her intestines and also her spleen were found in her chest cavity, and the surgeons were able to push them down to the abdominal cavity where they belong, They were unable to repair her diaphragm through the small incisions, so a larger incision was made just below her ribs. Through this larger incision, her diaphragm was sewn back together, requiring only a small postage stamp-sized piece of Gore-tex to patch the hole completely. She did not require a chest tube to drain the fluid from her chest cavity, which is a relief. A chest x-ray taken shortly after surgery shows that her left lung has inflated, and although it still needs to grow and develop a bit, it eventually will be a fully functional lung.

There is a chance that the diaphragm could tear again, either immediately, or as she grows bigger, but if all goes well, she will not need surgery again in the future. Only time will tell.

As for her recovery, we continue to be on the "take one day at a time" plan. We saw her shortly after surgery and she looked like she was already breathing more comfortably. Before the surgery, you could tell from the outside that breathing was a struggle for her. Her chest would rise and fall unevenly and her abdomen would "suck in" from time to time, especially if she was trying to cry and couldn't take a deep breath. Now, her chest rises and falls with each breath much more naturally and her little belly looks full, since her abdomen is properly filled with internal organs. I'm looking forward seeing her little eyes again, but for now, I'm glad she is sedated enough that she will not feel the pain from her ordeal.

Sending such a tiny little one into surgery was stressful, but we had plenty of family waiting with us that provided a good distraction. I am still waiting to feel the relief I thought I would feel after the surgery. I am glad she tolerated the operation well and the surgeons were able to repair her defect, but I'm still hesitant to feel true relief. She looked so healthy this morning as we followed her transport bed to the surgical unit, eyes wide open and looking around. We have been warned by numerous nurses and doctors that she will likely take some steps back as she recovers. For example, she may need to be placed back on the INO (nitrous oxide machine) to help her breathe, she may need to go back on the Dopamine to help her heart contract. It will be difficult to see her back track.

I am hoping the relief I need comes as we see her make small improvements each day. Hence, the "one day at a time" strategy I have come to live by...sometimes it is just hour by hour. Ryan and I will go up and say goodnight in a few minutes and then try to get some sleep, and that is about how far in the future I can plan at this moment. We will face tomorrow's challenges tomorrow.

Little Mia - one week and one day old - one big surgery

Baby Mia went to surgery this morning, she was wheeled downstairs about an hour and a half ago.  We are anxiously waiting to hear from her doctors, but most likely have a few more hours to wait.

I snapped a picture this morning while she was awake and looking around.  She has been hanging out under the lights for some jaundice since yesterday and doesn't like the goggles that cover her eyes.  I think she enjoyed looking around and just hanging out for a bit.  She looked pretty healthy this morning, considering the circumstances.  She has a great nurse today who let me change her diaper, take her temperature, and wipe her mouth with a warm cloth...the normal things moms do for their babies.

Surgery for little Mia is absolutely necessary, but obviously risky, and we've been warned that she will be taking some steps backward as she recovers.  She will have a chest tube to drain the fluid from her chest cavity, she will likely need to be placed back on Dopamine to help her heart work, and she will be heavily sedated for a while so that she is comfortable.  Her puffiness will return since so many fluids are given during surgery.  She might need some extra help with her blood gases as her lungs heal, but we are hopeful that she will not need the ECMO again.

Much of the outcome remains uncertain at this point, because until the surgeons can actually see it, they do not know the size of the diaphragm defect or the condition of her lungs.  They will begin the surgery with a small incision on the left side below her ribs and attempt to repair the defect using a camera.  However, if the problem is too severe, they will need to make a larger incision.  The best scenario would be if the defect is small enough to be stitched closed, but if it is too large, they will use a Gortex mesh to help close the hole.  Mia's rate of recovery will depend on all of these factors.  I feel prepared to see her sick again, but I'll be anxious to see her recover.

If there is one thing we've learned about Mia in the past week, we know that she is tough and has a strong will to live.  I know this will help her recovery most of all.  She has already proven her strong will just by surviving through her first night here.

In our short (yet long) time here at UC Davis, we've seen a lot of sick people, and sick babies, but I have already been able to see a few go home.  It is such an uplifting experience to watch a two year old boy walk himself out of the PICU just two days after heart surgery.  There are great healers that work here and we are so thankful that we live close to a facility like this.  I am certain that no matter how risky, Mia is in the best hands possible.

As we sit here and wait, I think about my little girl on a big table with brights lights and skilled surgeon hands, just hoping and praying they can put her back together in the way God intended.  I pray for her strength and for her health and for a quick path down the road of recovery.

good morning, Beautiful

Good morning beautiful!

When I walked into Mia's room this morning, this is what I saw: my little girl looking around, soaking in her surroundings.  Now that the tubes have been removed from her neck, the nurses are able to reposition her head and body.  As she continues to eliminate much of the excess fluid she has been retaining, her head and face are returning to their normal size, and repositioning her is allowing her head to regain a normal shape.  To say she looks a million times better this morning than she did two days ago is an understatement.

Since she no longer needs the ECMO, or a cardiac specialist, Mia was moved back down to the NICU this morning.  At this point, the NICU is better equipped to meet her special, tiny needs, and we consider this a type of graduation for her.  Several of her medications have been stopped, and they are reducing others.  She is doing so incredibly well compared to Sunday.  We have been taking little baby steps each day, but in seven days, we have come so very far.  The strength of the human body and the medical technology available can be quite an incredible force.

~ getting ready to head to the NICU ~

Mia is tenatively scheduled for repair surgery on Monday.  Of course, this will depend on how she continues to progress.  If it appears that she needs to have the surgery sooner than Monday, then she will, but at this point, Monday is the target day.  We won't know for certain until Monday morning when we speak with the surgeons, but I am praying that we don't have to wait much longer.  While Mia's condition is very serious, it is usually repaired in a single surgery and the children who go through this usually do not have any long-term effects.

We still don't know many details about Mia's internal organs.  That is information we will know only after the surgeon is able to go in and take a look.  However, we do know that Mia's heart is anatomically normal and she has at least some lung tissue on the left side.  I am hopeful that her left lung was able to develop normally before being crowded by the bowels.

~ freshly washed hair ~

Some people have asked what the ECMO machine did for Mia so that she no longer needs it, this is how it was explained to me.  When Mia tried to breathe after being born, her heart was unable to pump adequate blood to her lungs, and some damage was done to the lung tissue.  The ECMO machine allowed her heart and lungs to rest for some time, since it was oxygenating the blood for her, and this allowed her lungs to heal from the initial trauma.  Now, both her heart and lungs are stronger, and they are better able to oxygenate her blood and pump it out to her organs.

Tomorrow, we will be playing the waiting game again.  No big changes are planned for Mia, she will just "hang out" - getting stronger, and preparing her little body for a big surgery.  We have quite a few out of town family members who will be visiting and I'm hoping the day passes quickly.

Mia will be one week old tomorrow, but somehow I have aged years.  Ok, so it probably just feels like I've aged years, but never before have I experienced so many emotions and life altering events in such a short period of time.  To watch her make small improvements each day has been so uplifting and encouraging - I can almost imagine all four of us home together as a family.  Although I know the next month or so will be trying and difficult, I feel good about Mia's health and recovery.  Our family and friends have proven to us that we have plenty of support and with their help, we will make it through this.

Once again, thank you to all of you who have commented on the blog, sent a text, sent an email, called, prayed, or even just visited our blog.  It is comforting to feel your love and read your words of encouragement.  And if you have any questions about Mia's condition, please feel free to ask.