a big day for Mia

Today was a big day for Mia.  She has been successfully weaned from the ECMO machine and is now relying only on a ventilator to help her breathe.  It was a stressful day, with hourly changes, but the end result was worth it.

Thursday night, we were told that the ECMO machine could only be used for a certain amount of time before it would need to be cleaned.  Mia had reached the limit with her original machine and we planned on her being switched to a new machine Friday morning.

When we arrived at the hospital this morning, we were told that since she would need to be switched to a new machine, they were going to do a trial run of taking her off the ECMO completely.  The first trial run at about 10:00 this morning lasted only 30 minutes.  Her fluid levels were not optimal and they had to put her back on much quicker than planned.  After giving her some fluids, they again stopped the ECMO at around 1:30 pm.  She handled it beautifully, but the surgeon who would remove her neck tubes wasn't available until later in the evening.  So, for a short time, the ECMO was turned back on.  At about 5:30 pm the surgeon removed the tubes from her neck and she has been relying solely on the ventilator since then.  This is great news!

She was less sedated today when they were making these changes, so she moved more than I have seen her move in a few days. The highlight for me:  she opened her eyes today. Not much since they are so swollen, but just enough so that I could see her little eye inside peering out. It was such a special moment.

She will most likely be moved back down to the NICU in the morning where she will continue to gain strength in her heart and lungs, and hopefully be ready for surgery next week.  We have not had the chance to speak with the surgeon or neonatologist yet to determine which day she will be undergoing surgery, but her current status is promising.

We went up to "tuck her in" tonight and she is already looking much better.  For the first time since Sunday, the nurses are able to change her position slightly.  Since the tubes were placed in the right side of her neck, her head was turned to the left and couldn't be moved.  Most of the fluid she has been retaining in her head and face pooled to that side.  Her head is now turned more upright and I saw her left ear for the first time since Sunday.  It is beautiful, and as she continues to get rid of some of the excess fluids, her little head is returning to its normal size.  I am soooo looking forward to taking her picture in the morning.  I was able to stroke her hair tonight and remember how incredibly soft newborn skin and hair can be.  She'll soon be ready for her first hair washing, which is much needed, to say the least.

Tomorrow will hopefully bring more information about her surgery.  We still have quite a journey ahead of us, and we are far from being "in the clear," but for now, I am feeling very grateful for her progress. She is such a feisty little fighter, I am so proud of her.

I tried to take a picture to get a perspective on how much equipment is needed to support our little girl.  Unfortunately, my lens wouldn't let me get it all in a single picture.  This is little Mia on her bed.  To the left is a tree of drips and gauges.  I believe she is on about 15 different medications at this point, each with it's own tube and controller.  Behind her to the right is her ventilator, and some other equipment that I haven't even asked about. 

Further to her right is the ECMO that has been such a blessing in our lives.  Seriously, it doesn't look like much, but this machine is amazing.

Her room seems so much bigger tonight with all the machinery removed.  There is now room for chairs to sit in.  Up until now, we could only stand next to her bed and attempt to stay out of the way.  Of course, the nurses and doctors have been so accommodating, welcoming us into her room no matter how crowded, helping us understand what is going on, and doing their best to work around us.

There is so much more I want to say, but frankly, I'm exhausted.  I need to pump and then get some sleep.  Tomorrow should be relatively uneventful, and I welcome the break.  Laci will be coming to visit us, along with other family members.  But I can't lie, I'm most looking forward to seeing my "big" girl.

~ Ryan, Mia, and I just before she was removed from the ECMO ~

baby mia - four days old

Mia's status today is very much the same as yesterday.  She remains stable on the ECMO and the doctors and nurses are focusing on getting rid of some of the excess fluid she is retaining.  Their efforts at this point have been successful and she is already looking slightly less puffy than she did this morning.  Mia's cardiac doctor is taking one day at a time and it not ready to attempt any weaning from the ECMO machine yet.  She does not want to rush Mia's treatment, and we are comfortable with her decision.

It is reassuring to us that Mia has been fairly stable during her treatment.  There have not been any major crashes or reason for alarm.  It is simply a waiting game, a terrible waiting game that seems to drag on forever, though it has only been a few days.

Since Mia's status was stable and there were no plans for changing her treatment today, Ryan and I decided to head home for a few hours this afternoon.  Ryan dropped me off at my mom's while he ran some errands, checked on our house and animals, and picked up some clothes.  I did some laundry and played with Laci.  It was oddly normal to do such familiar things, almost as if the past few days weren't real.

I'm not a religious person, but I certainly believe in spirituality, God, and the power of prayer.  I've prayed more in the past few days than ever before in my life...prayed for strength, prayed for healing, prayed for a miracle.  We have received messages from so many family members and friends, and we know you are all praying right along with us.  I want everyone to know how much we sincerely appreciate all of it.  Truly, sincerely appreciated.  It is amazing how much love we've felt since the beginning of this ordeal.

This whole experience has been a roller coaster of emotions.  Sometimes, when I look at her limp body on the bed, I can't believe how incredibly sick she is and I feel so very sad and hurt.  At other times, it is almost as if she isn't real to me...I see a sick baby, but my body cannot handle the stress of the situation and becomes incredibly numb.  I don't feel anything.  I am able to answer questions about her status like a robot, void of emotion, regurgitating facts the doctor and nurses have told me. 

At the current moment, I am feeling a new emotion...true hope.  As odd as it may sound, I have been hesitant to truly believe in Mia's recovery, probably because I have needed to protect my heart from breaking further.  This morning started out rough, as it does every morning when I wake up and realize that I haven't been dreaming, but as the day wore on, it got better.  I spent some time with both my girls, and for the moment, am feeling more sure of Mia's recovery.

When I touched Mia's head this morning and told her how beautiful she is, she started to wiggle a bit.  She probably need some more morphine, but I was glad to see her try to move.  Her eyebrows lifted as if to open her eyes, but the swelling makes that impossible.  I've missed being able to bond with her physically...I was only able to hold her for a few minutes when she was born, and then again for a few minutes before the helicopter team arrived to take her to Davis.  But when she responded to me today, I knew in my heart that my little girl is still in there and she still remembers me, and for today, that is enough.

medicine for mom and dad

When we left for the hospital Sunday morning, I hardly said good-bye to my little girl.  After all, I would be seeing her shortly to introduce her to her new baby sister...the one she has been patting in my tummy for several months.  Little did I know it would be Monday evening before I would see her again.  Never in her whole life have I been away from my girl for so long.  True, it was only a little more than 24 hours, but so much had happened in that time period, it felt more like years.

I was so happy to see her pretty face on Monday.  She squeezed her daddy tighter than I've ever seen her hug anyone...then they went on 30 elevator rides together.  She came again this evening to visit us.  We played in the grass and ate french fries for dinner.  I know she is in the best hands right now, but it is difficult to be away from her.

She obviously has no understanding of what is going on, and I'm glad for that.  She still thinks baby sister is in my tummy.  When one of the nurses met her in the hall today, she asked me "Is this big sister?" and Laci responded by patting my tummy.  Since she doesn't really understand what a "baby sister" is, I think that is just fine.  Her innocence is so precious, I wish she could stay that way forever. 

Watching her leave with my parents is the hardest part for Ryan and I.  When they left this evening, I just hugged her quickly and went upstairs, it is too difficult to see her go.  As much as it usually irritates me, I would love to sing her to sleep while she picks at the mole on my neck.  I miss our routines.  The worst part is, she seems so grown up, much more grown up than I remember her being when I put her to bed Saturday night.  She is at the age where her vocabulary expands by a few words each day and I feel like I've already missed so much, even in just a few days.

But, as hard as it is when she leaves, Ryan and I need to see her, and she needs to see us.  Despite the fact that we are playing in a hospital, we can pretend we are normal again, if just for a few hours.

mia on wednesday - three days old

Today is Wednesday. A fact I know only because I was reminded by someone recently. Mia has been on the ECMO machine for 48 hours and is still stable. Her blood pressure and gas levels are where the doctors would like them to be and she is tolerating the machine well. The ECMO machine itself, which has its own nurse, is also doing well. There have not been any issues with clotting or any other complications that could arise from using an external machine as a heart and lungs.

The plan at this point is to stay the course. Mia's lead doctor feels she is doing well on the ECMO and would like to keep her as is for at least a few more days. When her heart and lungs are strong enough, she will be slowly weaned off the ECMO machine and rely only on the ventilator to help her breathe. I have read in some cases that corrective surgery can be performed while the patient is still connected to the ECMO, but since Mia is so fragile, the doctors want her to be weaned completely from the ECMO before attempting any surgery. Mia's blood has been thinned quite a bit to avoid the clotting issues that can arise from circulating her blood through a plastic machine, so attempting surgery with her blood so thin is too risky.

This is our baby girl. Looking past the tubes, needles, and tape, she is our beautiful little girl. From the outside, she looks perfect in every way. Two arms, two legs.  Ten fingers, ten toes.  A headful of hair.  Just by looking at her, you would never know the problems she has on the inside. She is quite puffy, especially in her head and face, because of the fluid she is retaining. She is heavily sedated and cannot be moved from her current position because of the tubes inserted in her neck. Since the tubes are connected directly to a main artery and vein, any disruption to the tubes could quickly become fatal. We have been allowed to touch Mia, on the top of her head only. We cannot stroke her skin or touch her fingers because she tends to respond too much. As much joy as it brings me to see her move, the risks involved with her movement are too great.

We call Mia our "Edwards" baby, while Laci is our "Silva" baby. Unlike her big sister, whose complexion and features are dark, Mia is much more fair. Her hair is light brown and even looks a bit curly, though it has now been combed down. She has light eyelashes and eyebrows, and pink, fair skin. She has the tiniest, cutest nose...one of the first features I noticed when she was born. I long to see her little face in its true form, without the puffiness, tubes, and tape. But for now, I take comfort in knowing that the puffiness, tubes, and tape are just a necessary part of the journey to a healthy baby, which is what I long for most of all.

Mia Lyann

Baby Mia before she was prepped for her helicopter transport.

Mia Lyann (pronounced Mee-ah Lee-ann) rushed her way into the world at 7:30 am Sunday morning, July 31, 2011. All 6 pounds 2 ounces of her were in such a hurry, she couldn't wait for her August 24th due date, and I was more than happy to meet her a little early. She has a speedy and beautiful birth story that I am anxious to share, but other issues have overshadowed her amazing entry into this world.

Baby Mia was born with a diaphragmatic hernia. The simplest explanation of this congenital defect is that there is a hole in her diaphragm that has allowed most of her intestines into the chest cavity. The intestines have pushed her heart to the right side of chest cavity, and compromised the capacity of not only her left lung, but also the left side of her heart. As a result, her heart cannot adequately pump her blood to her lungs for oxygenation, and she cannot take in enough oxygen through her one functioning lung in order to adequately oxygenate her blood.

The news of Mia's defect is a complete surprise to us. Our last ultrasound, done at 20 weeks gestation, showed no signs of any abnormalities. When she was placed on my chest, fresh from her whirlwind birth, she was petite, but plump and healthy looking in all the ways you'd expect a newborn to be. However, it quickly became apparent that she was having trouble breathing. The nurse took her to the corner warming bed and shortly thereafter whisked her away to the special care nursery. After much attention and some x-rays, the attending pediatrician determined two things: that something was critically wrong with Mia's organs and that the hospital and staff were not equipped to handle such a critical situation. At around 10:30 am, just 3 short hours after Mia's birth, we were told she would be sent down to UC Davis Children's Hospital for treatment.

She was taken by helicopter from our hospital in Chico around 12:30 pm and arrived at UC Davis shortly after that. My wonderful OB doctor released me as soon as possible, and Ryan and I joined our baby at Davis around 5:30 pm. Upon our arrival, we met with the NICU doctor and received a crash course in heart and lung functions.

Currently, we do not know the extent of the problems with Mia's diaphragm.  The focus has been on getting Mia's lungs and heart healthy enough to undergo the surgery needed to repair her diaphragm.  We also do not know the extent to which her left lung was able to develop before it was crowded by the intestines.  Since it appears the problem occurred at some point after 20 weeks, there is a greater chance that Mia's lung was able to at least partially develop.  After trying various therapies throughout the night, it was decided early Monday morning to place Mia on an "Ecmo" machine, which has a more scientific name, but I honestly couldn't tell you what it is. The "Ecmo" machine is a heart/lung bypass machine. Mia's blood is being drained from a tube in her neck, circulated through the machine for oxygenation, and returned to her bloodstream through another tube. The idea is to allow her lungs and heart to rest so they can adjust to being outside the womb and become functional enough for her to withstand corrective surgery. The procedure to insert the cannulae (tubes) in her neck went smoothly yesterday morning and she has been moved upstairs to the PICU for constant monitoring of her blood pressure, oxygen levels, and a jillion other vital statistics.

And now, we wait. She has been stabilized on the machine and has been showing some improvement in her blood pressure, but not nearly enough improvement to consider surgery. The doctors are giving Mia and her machinery some time to "do their thing" while Ryan and I wait helplessly nearby.

That sums up the clinical side of our situation in the clearest terms I can come up with. We have had so many concerned inquiries from family and friends, and hope to keep everyone as up to date as possible.

***

On a more personal note, Ryan and I have experienced more in the past two days than we ever imagined possible. We have been overwhelmed, not only by the amount of information we have received, but also by the range of emotions we have felt and the decisions we have faced, and are going to be facing. With the very strong support system of our families, we are holding up. Much like Mia, we take each hour at a time and baby step our way through very long days and nights.

As for Mia's care, I cannot say enough good things about the doctors, nurse, and staff we have met during our time here at UC Davis. She is in the best hands possible, but more than that, she is in very compassionate hands. Her doctors and nurses are more than willing to answer any questions we have, even if they've been answered 50 times already, and we've been welcomed into her room on every visit. It is comforting to be surrounded by such capable, caring people.

Ryan and I have been thoroughly supported by our parents, siblings, extended family and friends throughout the past two days and we can't thank all of you enough. We are so blessed to feel the love of so many people. Our parents and siblings have made sacrifices to be with us, take care of Laci, and help with the care of our animals. Countless others have sent their prayers, good wishes, and hope. We are so very thankful for all of it. Even if we don't immediately respond to your phone calls or emails, please know that we appreciate your support and would gladly return the favor at any time.