Monday, May 26, 2014

Well, that was easy.

Our little 14 month old, Miles, had his 9 month post open heart surgery cardiology appointment.

From start to finish, the appointment was 3 and a half hours. They take forever, but that is okay.
We check in, we head to floor 3 which is cardiology, fill out some update papers and wait. M is all over the waiting room and so excited to be running free. We get our little beeper and it goes off about 5 minutes after we sit down.

Start off in triage, where they do weight/height/pulse ox/blood pressure. Sometimes they do a mini EKG. We got to skip that this time. Then we head off to the exam room.

After the exam room, we head off to ECHO! Whoop! The tech asks if we want to strap his arms down and we deny that. She asks if we need to wrap them, we say maybe, but let's start off with not. We just plopped him down and pulled out our little bag of goodies to keep him busy.

ECHO starts and so far, so good. Lots of red & blue on the screen, you can see all four chambers, and that is as far as my expertise goes. Yup. I can't read ultrasounds well. Hence the reason why we never found out our babies' genders.

After a super long ECHO and all the toy "freshness" worn out, it is complete. Now we move back to the exam room and wait. And wait. And wait. Our cardiologist has to read the report and watch it just prior to coming in to speak with us.

Miles is climbing the walls, the chairs, under the table, under the desk, opens everything and scrapes his legs from falling over a million times. I never bring enough stuff to keep him busy.

Anyways, the card comes in and we chat. We get our questions sort of answered (we still see cyanosis and he sweats too much still). The answer is essentially that he will probably always do that since his heart is repaired and not 100% perfect. We can accept that and since we have a pulse ox at home--I'm cool with it. After the chat, he tells us to come back in a year! A YEAR!!! We get a full year before we have to return. This is HUGE in the heart world.

This is a quote from a mom on one of my heart boards~
"One of the surgical team explained it to us in terms of sewing. When you repair a shirt, patching the hole "fixes" it, but the very act of sewing on the patch also damages the shirt. You create stress points where the needle goes in and out and where the thread tugs on the cloth. You may say this is "as good as new", but it isn't because you have more risk later on. Risk from both the original hole and the repair work. Chances are good you'll never have problems, but you still have to watch out for it. Our son is doing very well, but a repair is not a cure. He will have to see a cardiologist for life."

Next up for me is to order his medical records. In full. Including the nurses reports.  I'm just in the part of our journey where I am ready to read about my son's battle with CHD.

Thursday, May 22, 2014

Our 2014 Summer Wish List

Our family makes one of these every year and we actually do most of the items on there except for summer 2013. We pretty much were in a health-safety bubble to keep baby M from getting ill before his first (and hopefully only) open heart surgery. He got the "OKAY" clearance from his cardiologist to start living life a bit more. We are grateful and very appreciative of this opportunity and chance at a somewhat normal life.

We aren't going to get to do ALL of these this summer, but we are going to attempt as many as possible. If it doesn't feel like a good idea, we'll scrap it. If it is a great idea, we'll go for it. I'm not a glutton for punishment, nor a complete crazy mom. I love the idea of a slow summer, but the reality is that I have 4 boys that can't be cooped up all day. Well, I could, but that means they would be behind a screen for a huge portion of the day and I don't really like that idea. Some are trips, some are at home activities, some are wishes, but they are all fun. The three older boys came up with many of them and I added a few in.  I bet you will be able to tell which ones are from me:) All the activities are designed for the Dallas/Fort Worth area.

  1. Devour an ice cream cone from Beth Marie's
  2. Go to the Dallas Zoo with our zoo pass and take the DART train in
  3. Build a sandcastle on the Isle du Bois at Lake Ray Roberts
  4. Have a round of golf AND rent a golf cart at Texas Woman's University's golf course
  5. Paint rocks for the courtyard
  6. Make homemade bubble solution and see who can make the biggest bubbles
  7. Make confetti eggs and smash them on each other at the park
  8. Make homemade lemonade
  9. Join the summer reading program at North Branch
  10. Join the Recycled summer reading program
  11. Finish the library program and go to the waterpark if they have that reward option
  12. Plant sunflower seeds
  13. Go on a scavenger hunt
  14. Take a night walk
  15. Make a hide-a-way in the bushes
  16. Pick a topic or activity from SCISTARTER and make it happen
  17. Visit Goat Man's Bridge but don't tell the kids the legend behind it.
  18. Walk over a $2.5 million  bridge
  19. Watch the airplanes take off and land at Founders' Plaza at DFW International Airport
  20. Make homemade ice cream
  21. Go peach picking
  22. Create an original oil panting
  23. Catch a fish
  24. Try ten different parks
  25. Go to the Dallas Arboretum in August (when there is a huge discount)
  26. Fireworks-go see and buy sparklers
  27. Enjoy a treat from Atomic Candy
  28. Listen to Twilight Tunes with a picnic dinner
  29. Color the boys' hair with temporary color or Kool-Aid
  30. Hit up happy hour at Sonic for a half price slushie
  31. Make s'mores over the fire pit
  32. Have a pajama day
  33. Be in the Yankee Doodle 4th of July parade (promote CHD awareness)
  34. Donate Day! (the big toy sort and donate them to an organization)
  35. Put together a puzzle
  36. Sew a tooth fairy tooth holder bag or a pillowcase for each boy
  37. ONE Screen Day (unlimited computer, t.v., Wii, or DSi) and Mom can't say turn it off until dinnertime
  38. ONE Screen FREE Day (no screens at all--even for Mom)
  39. Feed the stingray sharks
  40. Make treats for our local firefighter station
  41. Make treats for Daddy to take to work for the police station
  42. Have a movie day or night
  43. Go bowling
  44. Feed the ducks cracked corn (but not bread)
  45. Fly a kite
  46. Watch a sunset at the lake
  47. Watch a sunrise ** not to follow watch a sunset**
  48. Bring back the roller skating memories
  49. Go backyard camping (or if we are brave, lakeside camping)
  50. Write a letter to a friend **an actual handwritten letter with a stamp**
  51. Walk the dogs
  52. Have a "be afraid" dinner night where mom picks weird and crazy foods to eat.
  53. Make a pool noodle marble run
  54. Dye eggs since we never do it at Easter
  55. Tie Dye a t-shirt
  56. Eat a watermelon and have a seed spitting contest
  57. Make homemade milk shakes
  58. Make popsicles to eat
  59. Make ice chalk
  60. Skip rocks
  61. Take family pictures
  62. Make a dough-handprint design and bake it
  63. Have a recycled art project
  64. Play Bocce ball
  65. Destroy and remove the old playground set in the backyard *I think it can be scrap recycled*
  66. Go on a day trip without saying where we are going
  67. Have a water balloon fight
  68. Make something out of paper maiche
  69. Attempt to geo cache a hidden treasure
  70. Go to the Geometric Art Museum in Dallas
  71. Try to go to Fantasy Landing
  72. Attempt to go to Fountain Palace
  73. Use our free ticket to the Perot Museum and take the DART train in
  74. Check out Klyde Warren Park
  75. Buy a I "heart" Denton bumper sticker
  76. Go to the Denton Community Market
  77. Make a watermelon cake
  78. Visit the botanical garden in Grapevine
  79. Champion's Days try to attend at least one
  80. Sew 3 Christmas stockings **already have the stockings, but need to actually sew them**
  81. Celebrate Miles' 1st Heart-iversary 8/22
  82. Celebrate 20 years of marriage to my love
  83. Make a school scrapbook album for boys 2, 3, and 4 (similar to boy 1's)
  84. Finalize school registration for boys 1 and 2
  85. Buy school supplies for preschool, 2nd grade, and 8th grade!
And, sorry that there isn't a super cute photo to go along with the post. Blogger wouldn't let me upload anything tonight.

Tuesday, December 31, 2013

2013...A Year in Review

One of my preschool friends has a blog and she asked for submissions for guest posts. I thought and thought about writing something up to submit, but I didn't do it. The topic was a year in review for 2013. So, here is what I would have submitted.

2013 for me was raw. It took everything I had to make it through. It brought me to my knees, kicked me in the heart and then it smirked at me while kicking me again and again. It made me so deliriously happy that I cried tears of joy and laughed out loud. I wouldn't have asked for anything more, nor anything less.

The birth of my fourth son was one of the best days of my life. I had a normal birth. I had people surrounding me that loved me for who I am. I had planned birthing my other three sons in the water, but something always derailed the plan. This baby was water-born. This baby was guided by something other than me. This baby literally had angels guarding him through birth. The simple fact that if we had known from the ultrasounds he had 4 heart defects, he never would have been born at home. He wouldn't have had the most gentle transition from womb to earth. He would have been whisked away from me and I wouldn't have gotten my hands on him for hours or even days after he was born. Knowing what we know now, I am so thankful for the blessing of him being born at home. I am grateful for him being alive and healthy. His open heart surgery (at 5 months) was immense and all-consuming. Some parts of his recovery are still too hard for me to discuss openly. There were mistakes made and my son suffered because of it. I failed him as a parent. The guilt haunts me daily still.The pictures bring me to tears. His journey will continue for the rest of his life. He has captured my soul and will never let it go.

Watching my oldest, 13, a man-child grow has been astounding. He is smart. He is caring. He is a gentle giant and bothers his little brothers. He teaches me how to parent. He makes mistakes and learns from them. He refuses to change a diaper. He is messy, doesn't like making his bed, and keeps growing! He is taller than I am.  He does stuff that either drives me (or his brothers) insane or makes us laugh. He is my firstborn son and I love him.

My 6 year old is teaching me what it is like to parent a child who has the exact same temperament and personality as I do. I'm learning to read his heart instead of his mind. I'm watching him take volcano breaths to get control of those wild emotions. I'm understanding that he has to do everything his way to learn. He is a child of intelligence and honor. He is passionate and crazy. He is my second born son and I love him.

My 3 year old is allowing me to feel emotions I normally suppress. He is quiet, happy, emotional, sneaky, fun loving, and gentle. He has taken a spot where he isn't the baby nor is he the big kid. He feels lost many days because of this. He takes you in, holds your hand, and wants you by his side. How can someone so little know so much about life already? He is my third born son and I love him.

My husband has been my rock. He has held me up, supported me, supported this family, in ways I don't fully understand. We've fought hard & ugly & too often this year, we've laughed, and we have loved. We ebb and we flow. He's my best friend and I don't know what I would do without him. He stole my heart when I was a 15 year old girl and never gave it back.

I've learned so much this past year. For every closed door, two more have opened for us. The blessings have been bountiful and very appreciated. They been humbling and joy-filled.
I have cried more this year than I ever have in my entire life. I've yelled to much, eaten too much sugar, and some days have barely gotten enough sleep to function. I've seen perfect babies being born, supported other heart moms through the diagnosis, cried with them when their baby's fight has ended, and prayed with them. I volunteered with the PTA and birth groups, had coffee with some of my besties, prayed more than I ever had, essentially stopped my doula business, kept in touch with far away friends, had a few too many glasses of wine, and relied on friends and family to make it through 2013.

I never, ever, ever want to have another year like 2013, but I can't bring myself to throw away the calendar that I kept on the wall. 2014 is almost here. I'm ready.

Wednesday, November 27, 2013

The Birth of Miles Landon...


"Oh, what will you do with this one very wild and precious life?" Mary Oliver

There are so many ways to label my pregnancy, a rainbow baby, a VBAC, a homebirth, a water birth, but really none are a perfect fit. This is our sixth pregnancy and our fourth baby. We are overjoyed about this baby joining us earth side. Each of your brother's births have been vastly different and embraced with love and celebrated for their differences.

Your birth will be my last. I write this with a bittersweet heart. My pregnancy is easy with very little complications and just the one big scare with the subchorionic hemorrhage. Our midwife, Abbie, and doula, Susan, are ready for the emotional journey of this birth.

Ultimately, this birth, your birth, has never been about healing from my cesarean birth. It is about celebrating your arrival and allowing it to be as sacred, peaceful, and as un-interventive as possible.


Sunday, March 3, 2013 42 weeks 1 day

We have seen your February 16, 2013 estimated due date come and go. This evening something is happening. It is filled with prodromal labor. Surges, every two to three minutes, then slowing to every ten, then stopping completely. It is devastating to me emotionally.

Monday, March 4, 2013 42 weeks 2 days

I ask for a stretch and sweep from my midwife. Labor needs to happen. I need to hold you in my arms. I am 4 centimeters, -1, 50% complete, and not in labor. You are straight OP. Mentally, I know I can birth you OP. I pray you cooperate and change position though.

After dinner, I notice surges. Light, but uncomfortable, tolerable. We go about life, dinner, dishes, and bedtime routine.

After bedtime, they start becoming more noticeable and I need to take a moment to be present with them. Accepting and welcoming each one as much as possible. Shower and bedtime for me by 9:30pm. I doze, contract, doze, contract. I wake up and can't do this in my bed anymore. It is 12:30am.


Tuesday, March 5, 2013 42 weeks 3 days

I wake up Dale, who can't think straight. He tries to help, but is really out of it. Surges are intense and I worry about having another night of full prodromal labor. I don't want to do that.

By 1:30 am, the surges are intense and I must lean over the arm of the sofa. I call my midwife and can't speak into the phone when one hits. I can't focus and throw the phone to Dale. More calls to my doula, photographer Heidi, videographer Tasha, and my mom are made. Time stands still for me. My mom and Abbie are here in a moment. I don't know how they even got here. Contractions are engulfing me. Dale is still slow to wake up fully. I don't realize I'm in labor, but having horrible prodromal still. Everyone arrives and it is like I just wished them here and they appeared. I move from the living room to our bedroom.

Contractions radiate from back to front to back. Dale puts his hands on me and the heat goes through. Perfection. No one else can match it.

Susan asks if I want my music on. I say no at first, then I change my mind. I worked hard putting the playlist together and I adore my songs. It is turned on and Sting starts singing to me in French. Everyone gets to listen to my eclectic taste in music.

At one point the surges are so strong that they take my breath away. Abbie suggests the TENS unit. It works on my left side, but not my right. It feels great in-between surges but not when they happen. All I need is verbal support, my candles and bracelet to look at and Dale on my back with his magic hot hands. The candles are important to me since each one lit represented a friend who lost a baby.

Sometimes I pace, sometimes I speak, "oh my goodness" or "thank you", but most of the time I just close my eyes, melt as much as possible, and believe my baby will be here soon. As in today. As in preferably now. We are all waiting to  meet you. I loved knowing how much you were loved before anyone ever laid eyes on you.

The surges are overwhelming me and time has stopped for me again. I cry. Not tears of pain in the physical sense, but tears of the unknown and tears from prior births. Being in labor is a joyful work. It was taken from me before and I don't want it to be taken again. Fear because I still don't believe labor is here.

Abbie asks if I want to be checked. Again, I am indecisive. The whole "if I'm a 4 and not in labor, I'm going to die thing" crosses my mind. I cry some more. Susan and the village keep telling me I'm in labor and not to worry. I agree to the exam and I'm 8 centimeters. I finally believe I'm in labor. A huge relief comes over me and leaves my shoulders. I cry again. My contractions get funky in their pattern and I'm tired.
Liam wakes up at 5 am-ish and Dale has to be with him. Liam never goes back to sleep. I am alternating between freezing and sweating. Someone suggests getting into the birth pool. My thoughts are that I may have a baby before lunch time and at least by bedtime! I'm getting excited.

I change and step in and I realize I am now in Heaven. I smile a lot! I laugh a lot! It doesn't hurt in-between. I am lucid, talkative, joking, and resting. I am so very thankful. I hear my music and my collection of songs that make me smile and remember parts of births I have attended as a doula. Each one helps me to focus on relaxing and enjoying this baby's journey. Susan rubs my feet and automatically brings me back to your brother Liam's birth. That connection of touch is vital for me.

After two hours of being in the water, I am tired. I am asked to step out. Ugh! I don't want to, but know it is best. It is 7am ish. I end up leaning over my dresser again, then in bed, then sitting on the toilet backwards (facing the tank), and falling asleep. Literally. It is just Dale and I in our teeny-tiny 1950's bathroom. I sleep and he pushes on my back when I contract. I love him for the support he gives me. He loves me back.

At one point, I feel surges and my response is "ouch, this isn't fun anymore." I feel myself push-grunting. I do this for what seems like forever. The contractions are seemingly spread out over hours instead of minutes. All I know is that I am now on the bed in a side lying position. I push and the baby moves down. A lot. It is around 9 am.

Abbie tells me if I want a water birth, I need to move. Now. I respond with an okay--soon. I feel lethargic and not ready to push. My water is not broken. I rest. I have a surge and I must move out of this position. Now!
I get into the water--hands/knees/modified child's pose. I can't move. I can't think. I can't speak. I push. It hurts. I push more and it hurts more. My water is still intact.
It hurts and I welcome it as much as I can. I didn't get this with Liam--it pushes me forward. I push and I push. I say I am going to split open. I've never had pushing hurt. It normally is the reward feeling. I push again and feel a huge movement and lots of burning. I'm almost there. I'm going to meet my baby soon. I push more. My water breaks. There is no relief from that pressure. I feel every second of time. I feel my baby moving further down. I feel my body allowing the head to pass. I push again. The head is out. This is the moment of in-between for me and my baby. Where my body was forcing the baby out and where it was still half inside me. That moment in time is the most sacred.
I must have my baby. Dale is getting ready to catch his child. I'm still in modified child's pose. I push again and my baby is almost out. One more push through the pain and baby is here! I open my eyes, move backwards to sit, and pull up this precious life out of the water.

I VBAC'd. I birthed in the water (after having planned three water births). I am holding my baby. All I can think of is that I'm touching my baby first.The next thought is the cord is compressed and wrapped around the baby. The next thought is we don't know if it is a boy or a girl. I look and smile! We have a son. Our fourth son! I am the mom of four boys!
Abbie helps me to unwrap our son and he is a bit stunned. My cord seems short and he responds weakly and he is floppy. He perks up a bit, but still seems slow with his responses. We speak to him, we love on him, and most of all, I get to hold him close to me. He is responding better.  For a moment, I remember my two lost babies and I see my candle still lit. Without them, this son would not be here. I am thankful.
We gaze at each other for a short time and then our three sons come into the room. They meet their new brother. There is magic in the air and joy and gratitude is on every face present.

This birth was pure and sacred. I am very thankful. After a quick discussion, we announce your name to all in the room. Miles Landon.
We linger in the water for a little while longer and there is no rush.  There is mention of a nuchal hand which explains the extra pain I was feeling when I was pushing. I am ready to get out. My baby is still connected to me and I carefully stand up. I think I tug a bit and as I stand I start to bleed. The hemorrhage I fear the most has begun.

We wait for the placenta to release and it doesn't. I bleed more, we nurse, we snuggle, we get to meet each other, and the bleeding doesn't stop. The placenta is retained. I move to the bathroom, nothing. I try to push, nothing. Gentle traction, nothing. Two IM shots of Pitocin to get everything under control, slowing it down, but no release. I feel very weak and dizzy. Two hours pass and we have to transport to the hospital.

Before we leave, I need to have the newborn exam done. My midwife's assistant, Kim, starts the exam and  everything is perfect. Dale is out of the room, so my mom cuts the cord, my doula weighs and their is a slight anxiousness to get me to the hospital quickly. The baby stays home with my mom, my sister, and his brothers.

We Conga line out to the car so I don't pass out. I have been doing dual-care with an obstetrician.  He is already at the hospital when we call in. Thank goodness. We get to the hospital and I have to use the wheelchair since I'm too weak to walk. The registration nurse is giving us a hard time and I just tell them that I need to get to a room since I'm still hemorrhaging. She calls us down to labor and delivery.
We get into the triage room and the nurse is awesome. I've worked with her before and I love her. I bleed more, Dr. Cummings. checks on me and he needs to get that placenta out quickly. Manually. He tells us it is an acreeta. No rupture, no windows. It's whole, odd shaped, and extremely tiny. My midwife gives me a tour of the placenta.  The it goes off to pathology instead of encapsulation.
We change from triage to room 2. More work to get the second part of the hemorrhage under control. Dr. C pushes so hard-blood literally arcs out and hits his shoes, coat, arm. I think I'm dying a second time. The pain is going to make me pass out. His arm is shaking so hard while he pushes. I'm dizzy and very cold. Transfusion talk is brought up. For some reason, I bring up a joke about him working out daily. I'm still hanging in there.
He steps out to help another mother. The nurse brings me a heated air blanket. I'm in heaven. She brings bags of food, drinks, and ice cream to celebrate the birth of our son. After a few hours, Dr. C allows me to be released. Another blessing. We go home. I get to snuggle in our bed with our precious newborn son. It is around 4pm.
Five days later, I am strong enough to get into the herbal bath I have wanted for so long.

While this birth wasn't about healing, it truly was healing. You complete our family and we welcome and embrace this birth as our last. You make me realize how strong I am and how precious our family is. The true miracle of this birth is that you, Miles Landon, were birthed in peace and calmness. A birth of protection. Fourteen days later we discover you have four congenital heart defects that will rock our world. For now, you are protected by God and His angels.

Miles Landon's birth video  by Natasha Hance

Miles Landon photo gallery by Heidi Thaden-Pierce

Miles Landon

Tuesday, March 5th, 2013
9:24 am
6 pounds 8 ounces
21 inches

Sunday, August 25, 2013

Take Two: Pre-Op & the First 12 hours.

Eight O'clock in the morning comes early when you live an hour away from the hospital and you have to deal with rush hour traffic and have to deal with a parking garage. We made it with 15 minutes to spare. SCORE!

We check in to the surgical waiting area and Miles' name was called quickly. We do the usual, weight, height, head circumference, and move to X-Ray for chest/lungs photo shoot.
Blood is drawn after I looked the paramedic in the eye and asked her if she was a good infant draw. She didn't respond, but the nurse in the room did. They used a JTip to numb the area first. I wasn't too keen on that, but Dale felt it was okay. After lots of crying, tubes were drawn, and we get the tour.

If you are ever in the situation where you get a tour of the hospital, DO IT!! It was so good to see the cardiac ICU, PICU, and the Cardiac step down room. I will try to explain the set up in our hospital, Cook Children's Hospital in Fort Worth.  It is a locked unit and you must have a certain color band to gain access to it during certain hours. Once you step in the doors, you are required to wash your hands. There is no bathroom, so you have to exit the unit to potty. The room is a long rectangle and there are several beds in a row. These beds are separated by curtains. No food, no open drinks, shoes/clothing on for visitors at all times (hee hee), and there is a small cushioned couch behind each bed. That is the parent sleeping area. There are two isolation rooms which close off and are a private room. These rooms are for kids that are more critical or have something contagious. We get the luck of Irish and get an isolation room for Miles.

They have a 24 hour Pediatric Critical Care Doctor on the floor at all times and there are 10 beds.
The surgery waiting area is tiny and one parent has to be present at all times. They call you once surgery begins and then every hour until you get the hallway drive by.

We went home praying that all babies would be stable and we wouldn't get bumped again.

Now, for us, surgery started Thursday the 22nd at 3am. That was the last time Miles could nurse and he could have water until 5 am. So, he nursed until 4:20am, when I woke up to my alarm. We had to give him a bath and be at Cook's at 7am. Thank you for very little traffic and a close spot to the elevator.

We went to the surgery waiting area and Miles was weighed/measured a final time. We didn't loose the red band (from the previous day's blood work) and proudly showed it to the nurses. If you lose it, you have to be redrawn. Yikes.

We hung out in the room for a bit and then it was time to go back. Double Yikes. This is really happening. Dale carried him down the hallway and I gave him a kiss goodbye. Then we handed our baby to the nurse. We were apprehensive, but Miles was totally flirting with that nurse. Within 3 minutes of him being in the back, he would be smelling the watermelon anesthesia scent we selected for him. It was 8:20 am. We now run to grab a bite to eat and get a few things out of the car. We are back in the waiting area by 8:45am.

At 11:10 am, we received the call that surgery had begun and Dr. Tam was already working with the valve, then the canal/septal defect, and finally the two smaller holes. When the phone rings in the room, the entire room goes silent and everyone attempts to answer the phone. They state the family's name and the look on the parent's face is pure anxiousness. We only saw smiles as the phone was replaced on the receiver.

Another call at 12:10pm; more smiles. A family of 12 comes into the waiting room and takes over and they are super loud. Another call at 1:10pm; more smiles and I have to tell the other family to stop being so loud. They were completely stressing me out and we couldn't hear what the nurse was saying. We get another call after 2pm and they say that surgery is complete and Dr. Tam would like to speak with us. I don't think we were able to hang up and get into the hallway any faster.

Dr. Tam tells us that the surgery went well, Miles tolerated the by-pass machine well, his heart was throwing solid rhythms, that he was comfortable with the surgery and he finished a bit faster than expected. WOO HOO~  We are overjoyed to hear this news.

We have to go back to the room to wait for the "drive by" call. We packed up our busy work and waited. We get the call about 2:30pm and run out to the hallway to see our baby.

We get a quick peek, give him a kiss, and now we travel down another area to wait in another waiting room for an hour or so. The PICU waiting room is nice and has a little courtyard to get some fresh air.

An overhead speaker announcement tells us to go to the child's treatment area. WOOT! This means we get to see our Miles in his area. Each bed or crib has their own dedicated nurse that comes along with it. So far, we have an itty bitty girl, with a big pink headband bow, on one side and an adorable bigger itty bitty boy on the other. He's a charmer and can smile and wave.

He is heavily sedated and stable. Two amazing blessings. We stay for a while, then prepare for Dale to leave to go home for the boys.

I do my thing for preparing for some quick naps and pumping. The decade of birth doula work has prepared me well for this part of surgery. I can nap anywhere and wake up quickly in a hospital setting.

Dale leaves and we get ready to start the healing process.

Monday, August 12, 2013

10 Things I Learned in July

  1. Menu planning is my friend.
  2. The official grocery shopping job has happily been given to Dale to do.
  3. Christmas gift planning and shopping has begun.
  4. Miles rolls over and there is no stopping him.
  5. Liam idolizes his big brothers. I pray daily for them to be the best role models they can be.
  6. Brian is so very passionate about everything!  He's going to change the world one day.
  7. Grayson has a beautiful soul and is trying to fulfill his vision of growing up with grace.
  8. I hope when I am old I am able to recall the feeling of the weight of a sleeping baby in my arms.
  9. Meeting the cardiothoracic surgeon was a great idea.
  10. I feel like I am stumbling through the gift of motherhood most days, but have realized that all mothers are too. No one knows the journey.

Wednesday, August 7, 2013

Pre Op and a Sucker Punch!

Today was the day for our pre-op steps. We were told to be there at 10 am, which we were spot on time! Go us! We were ushered into our room and the people kept coming in. We had a CNA (certified nurse anesthesiologist), our cardiac nurse, a phlebotomist, a regular R.N., and a nurse from Dr. Tam's office. All is going well and all of our questions are asked. Answers are given. The bad outcomes and risks are explained. Blah blah blah. So, we are getting ready to sign consents and do the blood draws.

Yeah! Our appointment is about halfway completed at the 2 hour mark!! We are looking forward to the blood draw being OVER and the tour to begin so we can see the floor, where we will be, and get that part settled in our heads.

Now, this is where the sucker punch comes in. Get ready, wait for it, wait for it, wait for it, and BAM! Sucker punch straight to the heart. Then wiggle it around for a few more minutes for fun.

Yup, we got BUMPED from surgery on 8/8. I feel the tears start to form and the lump in my throat burning. "Keep it together chickie!" is all I can think of. This was my second biggest fear and I KNEW it would happen since Miles is so stinking healthy looking. What ticked me off is that everyone keeps downplaying his defects except for Dr. Tam. He was completely taken aback that he looked so healthy when he had so much going on and the size of the ASD. But, we know, somewhere deep in our hearts and minds, that another baby is needing his care and thank God Miles is healthy enough to go forth and thrive. It doesn't really make it better nor easier.

It is such an emotional upheaval and we were praying that we wouldn't get bumped and we were hoping that he would be on the other side of the healing process before school began. What is going to happen now is that we are scheduled for 8/22. It was mentioned that we could even get bumped again. So, we wait. We pray. We put our lives back on hold for 15 days and then we hold our breath before plunging into the deep water.

This game sucks. 

Sunday, August 4, 2013

What Can You Do to Help?

What an outpouring of love we have been given on this journey. Our family, friends, and even acquaintances have been rooting for Miles and his heart. It is very humbling to our family to be the recipients of such love. Dale will be bouncing back & forth between from home to Cook's and I will be staying at Cook's the entire stay. We are hoping to get a room at the Ronald McDonald home ,so I can nap a few hours here & there, and find out on Wednesday if they have anything available.

I have been asked by many what they can do to help us while Miles' has surgery and during his recovery. These are a few things that we can think of.

First, please continue to pray, send good karma, happy vibes for Miles, his surgical team, the anesthesiologist, and the nurses who will caring for him. THIS is our number one request and the most important to us.

Second, we are blessed by having family in the area to help with the older boys. They will be staying at home or at my mom's house for most of our hospital stay. You are more than welcome to call & see if they are available to goof off with your kids for a few hours.

Third, one of our dear friends is going to set up a meal schedule for when we get home. She is in another state and really wanted to do this for us. If your budget and time allows, you are more than welcome to sign up to bring a meal. Our goal is to have a few meals when we come home from the hospital so we don't have to stress about cooking for the first week. We aren't fussy eaters at all. Look for something on my facebook wall if you want to bring something. The hard part is that we don't know when we are coming home, so exact dates aren't here to make it easier.

Fourth, please feel free to text, message, email us for any information you want to know. I will be posting updates on facebook when I can. The last time we were at Cook's, my reception was pretty spotty, so I will do my best to get back in touch with you as soon as I can.

So, that is what we need. If you are open to anything on the list, please feel free to do so. We are extremely thankful for our support circle surrounding us.

Saturday, August 3, 2013

Details! Details! Details!

We met with our cardiothoracic surgeon, Dr. Vincent Tam, who is the medical director of the Heart Center at Cook Children's Hospital in Fort Worth, Tx., on 7/25.

This appointment was a "meet & greet" along with a Q&A portion. I'm glad we had it since it gave us some answers about very specific questions we had. Some questions he wasn't able to answer, but assured us that the nurses during pre-op would be able too.

The BIGGEST thing that we discovered during this appointment is how much heart defect repair is not an exact science yet. The diagnostic tools have come so far in the last few years, but essentially, until Miles is opened up, Dr. Tam isn't exactly sure how messed up everything is going to be. On the bright side, he hasn't lost a baby to this surgery since 1996.

We went over the ECHO results and while reviewing, he was giving us a tour of the defects. Right now, Miles is weighing in with a whopping 4 defects in his heart. This is different than the original thought of two.

The original atrioventricular defect was about 7mm, it is now approximately 12 mm. The primum atrial defect is about 10mm, the small ventricular defect is about 2mm, and finally, the mitral valve is currently stuck in the open position.  Surgery is expected to be between  4-6 hours in length with a hospital stay of 4-5 days with zero complications. Miles will be 22 weeks old.

Pre-Op is Wednesday at 10am.

Miles 16 weeks
Photo Credit: Heidi Thaden-Pierce of Better Birth Doula

Thursday, July 25, 2013

Pity Party for One, Please

I didn't ask to be a heart mom. I had 4 freaking sonograms ( 2 in 1st trimester, 1 in 2nd tri, and 1 the day before my EDD) and not one picked up on anything that was wrong. In hindsight, that was an amazing blessing, which I will explain later, but for now, I'm just going to rant and ramble.

We meet with the surgeon tomorrow morning. I'm a bundle of nerves, can't sleep, and my 20 week old baby is sick. Again. For the fourth time in his short life. His immune system is weak, I have 3 older boys, and I have to get out of the house sometimes. This time we picked something up and one is on steroids for croup and the baby has a fever. My panic button goes off. I know his oxygen levels are too low. You can see it in his eyes, his face, and you can hear it when he cries. His cry changes when his levels are low. I don't need a monitor to tell me that.

When I saw the surgeon's office phone number pop up on caller ID, my heart sank. I immediately went to "that" place. You know, the one that gives you negative thoughts and you believe them. Yeah, that place. I figured the office was calling to tell us they were bumping us again from the hour long consult appointment. While they did bump us a second time, this time it was just an hour. Whew! I felt like throwing up after that call.

I haven't had a cry about being a heart mom because honestly, I'm just too damn busy with being a heart mom. Managing appointments, keeping records, dealing with insurance, SSI paperwork, more forms, more calls, well, it is overwhelming at times. I need a good, ugly cry soon though.

We are exclusively breastfeeding. That is incredibly fabulous and scary at the same time. Here are reasons to breastfeed a baby with CHD:

Why breastfeed?
Babies with heart problems that breastfeed:
  1. Maintain higher and less variable oxygen saturation levels while feeding (Marino, 1995)
  2. Maintain higher transcutaneous oxygen pressure levels during and sometimes for several minutes after feeding (Hammerman, 1995)
  3. Gain weight much quicker than their formula fed counterparts. 
  4. Are released from the hospital quicker. 
  5. Breast milk protects babies with heart conditions (who are more at risk) from getting respiratory illnesses
The scary part is that his weight gain is all on my shoulders. If he doesn't gain, it's my fault.

I've caught myself saying things like, "He has an easy CHD." Umm, I need to shut my mouth. Anytime a baby, who will be barely 22 weeks old, is preparing for heart surgery is crazy. They should never have to undergo open heart surgery. His heart is not in a happy place. No CHD is easy. I need to accept that.

He is in my arms right this very minute. I see his beautiful face, feel his slumbering body next to mine, and realize, I can't fix him. I can't change him. I can't do this fight for him. I can only love him.

That is all heart moms can do.