Monday, April 30, 2012

Setbacks



If I don't get this out, I may emotionally fall apart.

Mylah has had a few setbacks, all beginning with not wanting to eat. She has been fussy and sad all day long. The doctor finally realized that she was pretty dependent on a drug called Precedex. It was a drug to help her relax post op and because she had it for so long she now was withdrawing from it, per se, and staying awake for long periods and then being overly tired and not being able to sleep.

This was a bad cycle and was happening all morning. She had her chest tube removed as well, and after some morphine for that, she rested.

She spent the day not eating or having any urine output, so they put her back on an IV after she was successfully freed of most of her lines and medicines. Bummer.

Along with that she spiked a fever of 103 and had to have her blood cultured and a urine sample taken. It could take a few days to get the culture back so we will see how much longer we have to stay.

It's just been so overwhelming and frustrating. I am so sad that we might stay because Dallin has his very first Little League game tomorrow and we will miss it. He also celebrates his 6th birthday this Sat. and I was so hoping to do something special with him. Rylee mentions daily that I miss her...in her vocab that means she misses me. I know I can't be two places at once, but how I wish I could.

My heart aches for Mylah and her pain and setbacks. And I wish I could be home with Dallin and Rylee. It's so hard.

I have tried to be so strong this entire time, but sometimes you just need to cry. I bawled to my Mom on the phone and feel a little better. Things will work out for our family's good. They always do. Our Heavenly Father knows what we need and can handle. It is such a blessing and honor for us to experience this trial.

Say a little prayer for our precious miracle heart baby. Pray for no more setbacks.

Love to you all...

Lara

Post Op Day 5

Last night was another hard night. Poor Mylah was taken off of the Precedex which relaxes her and it was a pretty quick process so she had a sort of rebound/withdrawal from it and was wide awake for seven to eight hours straight.

She was so tired and upset and in a little pain so her nurse gave her morphine. That helped her a little, but we didn't get much sleep.

We also spent most of the night trying to get her to eat. She wasn't wanting to do that either. It was another horrible night.

This morning she was able to have her chest tube removed that was a big step forward. But, she still hasn't eaten much! We are hoping she will soon because if not they will have to pit her IV back in. She has everything removed yesterday and it was a step closer to returning home. But not eating can set her back.



We have had numerous visitors, including family and friends. Mylah had a special one today...a heart friend named Jenni.

Jenni has had numerous heart surgeries and stayed in the very room we are in! She has since grown onto a beautiful young lady and its a treat to have her stop by!



Though Mylah still has some feeding.issues to figure out, we hope we can come home soon!

Thank you again for the love, prayers and thoughts!

-Lara

Sunday, April 29, 2012

Smiles and Playtime

Mylah has felt more and more like herself today! This is what we have been looking forward to!



She was relieved of her urine catheter, her arterial line, and her nasal canula today. Just a few steps closer to discharge!



Because she has been awake a little more today, we have been able to play with her and give her more toys to be entertained by. She has loved it! We have been showered with numerous smiles, enough to melt.our hearts! We love our sweet heart baby!



We are so proud of her and amazed at her progress. Hopefully tomorrow we can have her chest tube removed and work on preparing to go home.

We are so very blessed and thankful for everyone's kindness and love. It is overwhelming to realize the amount of people worried about our precious girl. The prayers and thoughts have been felt and noticed. Thank you.

- Neil and Lara

Post Op Day 4



Mylah had a rough night. She was in a bit of pain, her bowels were backed up, and she was hungry and wanted to eat, but her throat hurt. I felt so bad for her and woke often in the night to comfort her.

It's SO hard for me to not be able to hold her. The crazy nurse she had kept trying to hold her and thought it would help. I was thinking, um...I am pretty sure that she doesn't want YOU to hold and comfort her, she wants me!!! They won't let is because of all the lines and tubes still connected to her. I breaks my heart. I know she needs to be held. :(

She finally had to have Precedex again, which calmed her enough to rest for a few hours. But classic hospital routine, as soon as she was on a deep sleep, in rolls the x-ray techs to do films at a ridiculous evening hour!!!

Needless to say, last night was the worst night here to date. Praying for a better one tonight!

Today's goals are to get her to eat more, remove some of her lines and her foley (urine catheter) and hopefully hold her!!

Thanks again for all the love and prayers!

-Lara

Saturday, April 28, 2012

Extubated

Shortly after writing the last post, Mylah was extubated (had her breathing tube removed and is off the ventilator)!!





She was so upset and fighting to cry and breathing over it. Our nurse and good friend Becca, took a blood gas. That measures her balance of gases and such in her blood. It looked really good so the Charge Nurse and Peds doctor said she could be extubated!



It's always hard to see and watch, but she did really well! When she let out a small cry my heart smiled. She is slowly progressing towards discharge and healing well.

Now maybe she can eat later tonight!

- Lara

Post Op Day 3



Mylah is alert and awake today! She is such a fighter and is progressing well.

She is on CPAP which is making her practice breathing on her own while still ventilated. If she forgets to breathe the CPAP will breathe for her. Basically she is breathing on her own. She is able to have her ventilation tube removed sooner (extubated) if she does well while on CPAP.

When we arrived she saw us and immediately started tearing up and frowning. She can't cry because of the tube in her mouth, but she tried. She also mouthed her tired/sad words...Na-Na. That is the hardest part of all of this, watching her become sad or frustrated and not being able to help! Once she is extubated she will be feeling much happier!

Her daddy held her hand to comfort her and she wouldn't let it go. It is so hard for us to not be able to hold her and rock her and tell her all of this is for her good. :(

So today's goal is to extubate and then we will move to feedings. They will manage her pain and we will all continue to pray that her body keeps healing.

Thanks for the love and prayers!

- Lara

Friday, April 27, 2012

Post Op Day 2 Pic

Here's Mylah today! They cleaned up her chest, closed everything and she's doing really well. We are so blessed and are so grateful for the blessing of a wonderful surgeon and fabulous doctors and nurses. She is progressing nicely and we are hopeful that she will have her ventilator tube removed tomorrow.



As always, thank you for your prayers and concern. Love to you all!

-Neil and Lara

Thursday, April 26, 2012

Post Op Day 1 Pic

Here's our sweet girl today! She is keeping all of her numbers where they should be and her color looks amazing and she has minimal puffiness! We are so proud of our little fighter and sweet miracle!





Thank you again for all of your comments, thoughts, and prayers. We feel them and know they have helped srengthen us and furthered her successful recovery! Love to you all!

-Neil and Lara

Wednesday, April 25, 2012

Mylah's Full Heart Repair



Today Mylah had her full heart repair. We have been dreading this day for months, now that it has happened, we are relieved its over, and grateful for the prayers for her. They pulled her through! She's such a fighter and an amazing little patient. All of the doctors and nurses love her!

I had to wake her up to feed her last night because she slept so good. Her last feeding had to be at 3:00 am to prep her for surgery. Because of this, I ended up waking around 6 to her fussing because of hunger. She is such a good baby and quickly calmed down enough to sleep while Neil and I took turns comforting her and holding her hand.



Around 7 they came to get her and take her down for surgery. We followed her down to the surgery floor, met with the surgeon, Dr. Ciccolo and the Anesthesiologist. Finally they took her away. We said our goodbyes, kissed her, told her we loved her and walked away. It's one of the hardest things to do, trust your daughter's life to a team of doctors and nurses, but we have learned to trust their skills and expertise.

{Waiting for Mylah to get out of surgery...we sent this picture to the kids to tell them hi!}
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After 4 1/2 hours we met with Dr. Ciccolo and he explained his findings and what he was able to do to repair her heart. Upon opening her up and found that she was what he calls a challenging Tetralogy. This means that she indeed does have Tetralogy of Fallot, but a little worse than what they saw via ECHO. On top of having a VSD (hole which was the size of a nickel!!) between her lower chambers, significant stenosis (oxygen restriction) in her pulmonary artery, and tenting (pulling) of her BT Shunt, they found an ASD (hole) in the upper chambers. He fixed all the holes, and discontinued the shunt. He also said her pulmonary valve was very small at about 5.5 mm and should be around 10 mm. So he divided it and she will now need a valve replacement when she's 10-15 maybe sooner. Lastly he reconstructed her pulmonary valve to create a better flow from her heart to her lungs.

They left her chest open to reduce swelling and because she had a lot of bleeding. She is paralyzed by meds to keep her from moving too much and they have her comfortable and stabilized. Her heart sounds amazing too! Before it sounded like shoes in a washing machine. Now it is sounding just like yours and mine. Truly a miracle.

Tonight they will monitor her, watch her fluid release and keep a close eye on her open chest.



Thank you again for all of your prayers, comments, concern and love. We know that all of it pulled her through and blessed the surgeons and nurses as they worked on our precious girl.

Love to you all.

- Neil and Lara

Tuesday, April 24, 2012

24 hours

It's been twenty four hours since our arrival here at the hospital. I'd forgotten the lack of sleep you collect. The familiar sounds of the hospital - monitors humming, oxygen water bubbling, voices, carts, and beeping - all do nothing in way of inducing sleep. But it is the best place for our sweet girl.





She rested a little, whined a bit, and drank a few bottles. She even nursed once and I was so grateful.



We also had a visit from Mylah's Aunt Jessica and her cousins Jakob, Mason, and Hannah. They brought her an adorable pink bear, a balloon, a card, and even dinner for Neil and I. We are so blessed to have family who love us, support us, and to take care of us.





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Mylah has just spent the day resting and letting her body prepare for the surgery. She has been a trooper and endured it well. We love her and are thankful for your thoughts, comments, and prayers.

-Lara

Monday, April 23, 2012

Heart Cath



We took Mylah to have a heart Cath done today. She was such a happy baby and all smiles as we waited to go back. She had only had one feeding and was tired, but kept on smiling.






We often comment on what a good baby she is. It is such a blessing to us, but makes watching her suffer that much harder. She is always happy and has no fear. She strengthens us.



The procedure took about two hours. They took her into the Cath lab and sedated her as we held her hand and watched her drift off to sleep. She fought the anesthesia and then relaxed and slept.

The results of the Cath confirmed that she has a VSD and significant narrowing of her pulmonary artery and near the site where her shunt meets her pulmonary artery. Her O2 stats were about 75% at the doctors this past Thursday and now were about 70%. Her doctors are concerned enough to keep her here at the hospital until her surgery Wed. morning.

They moved her to the PICU and when we came to see her she was chewing on chords, playing with her wristband, while intermittently sucking her thumb. She was so tired and didn't really smile. She needed rest.

After she wakes up a little more they will let her eat clear fluids. For now she is resting and her saturations are at 80%. Good girl. :)

We are anxious and nervous for her surgery but are grateful that they were able to see what they needed to internally in her heart.

Keep those thoughts and prayers coming. We know they work and have felt them and your love. Thank you.

- Lara

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Sunday, April 22, 2012

Imagine

Never did I imagine that my Heavenly Father would bless Neil and I with two children who have medical needs. Growing up I always feel that I would have a child with special needs. But I never expected to be asked to watch my children endure surgeries and pain. I never dreamed of the aching I would feel as I watch them suffer.

I am grateful daily for modern medicine and the ability nurses to take the edge off of our children's pain. I am so thankful for the skilled doctors and surgeons who are able to fix and heal our children. Truly a miracle.

As we prepare to turn our daughter over to the surgeon for yet another surgery, my heart is full of peace. As hard as it will be to endure this trial this week, I know she will be watched over, and come out of surgery fine.

I am thankful for the knowledge that my Heavenly Father loves me and has a plan for Mylah and our family. He understands our fears and stress and brings comfort. It will all be ok. He is a loving Father and wants only the best for our family, though it may come through trials.

Pray for Mylah, keep her in your thoughts. She can use all the support and love she can get!

Thank you, from the bottom of my heart.

- Lara

Thursday, April 19, 2012

Peds and Cards

Peds - Mylah had her 6 month check up today with her Pediatrician. She unfortunately only gained 12 oz in almost 2 months. He said to just nurse her more and they will check where she is in three months. She grew an inch as well. She finished her visit with three shots and won't have more until she's a year old.

With such a low weight gain and the fact that we've noticed she is sleeping more and is awake only for a couple hours between naps, we were concerned. So off to the Cardiologist we went.

Cards - We had Mylah's EKG done and then went to have her ECHO done. Dr. Thomas tried to get as good of pictures as he could, but she was tired and wiggly. Her oxygen saturation was between 75% and 77% and his cut off for her is 75%. He was concerned enough to discuss her with the surgeon and they decided to be on the safe side they want to do her surgery next week. Next week?!!! I was shocked.

When asked if that was ok, I fought back tears, and said I didn't want to do it, but knew it was best.

So come Monday, she will go in to have a heart cath done. This will give the doctors and surgeons the images and results they need to properly repair her heart.

If they decide all is well, they will proceed and do her full repair that Wed.

I can't believe how fast it all happened and realized that everything worked out as it should have.

We originally were supposed to bring her in on April 2nd, the day after Neil's emergency appendix surgery. If we had, and they wanted to schedule the next week, it would have been the week of my sister's wedding. I am so thankful to my Heavenly Father for knowing our family and doing things on His terms and time. It benefited all of us. We are so blessed.

As scary as this all is, she is in the best hands. His hands. And in praying tonight, I thanked Him for the skilled doctors and nurses. They are truly miracle workers.

Please keep her in your prayers. She's going to need them! Thank you all so much for the love and support. Check back here often for updates and progress. Her recovery will be longer and slower this time around, and I will do my best to keep blogging!

- Lara

Aching and Awe

Tomorrow we take Mylah to a Cardiologist appointment. Nothing out if the ordinary, but there is cause for nervousness. We should be scheduling her full heart repair.

I can hardly believe this appointment has come. For so long now I have been anticipating it, but known that it's still a while off. Now it isn't. Here we are preparing to pick a day for her surgery. The day that we will hand over our baby girl to the surgeons and pray that they carefully repair her heart and return her to us. Just thinking of the long wait during surgery and the pain she will endure post-surgery, makes my heart ache. Nothing can take that away.

As I nursed her back to sleep tonight, I just held her. I softly whispered reminders to her of how sweet she is, and how special. I told her how blessed I am to be her Mom, and I stared deeply onto her eyes. She coo'd and smiled and then gently touched my face. I knew she was comforting me in her own way. As my eyes stung with tears, I felt a peace. I was reminded that she is Heavenly Father's first and ours second. He knows her path and will choose where it leads. No matter what happens it will be for our good.
I am in awe daily of the sweet miracle and blessing Mylah is in my life. She brings comfort, love, happiness and has taught me so much. I pray that I can find the strength to get through this next chapter in our lives. I pray for peace, comfort, and patience. I know things will be alright. I just know it!

- Lara

Friday, April 6, 2012

6 Months Old

When we found out about Mylah's heart condition, it made looking towards the future unbearable. Everyday would be a challenge, would she make it to one month, would she make it three? And now here we are at six months old. Six Months! I am honestly amazed at Mylah's little body, and it's ability to thrive, even with an over active and weakened heart. What a miracle she truly is!



Here are Mylah's stats at six months old:

♥ She weighs 16 pounds.

♥ She is 26 1/2 inches long.

♥ She eats two jars of baby food a day.

♥ She still loves to nurse but does it less these days.

♥ For some reason she has reverted and wakes up about two times a night. Boo.

♥ She sits on her own, but we keep a pillow behind her for safety.

♥ She has found her feet and loves to pull her socks off and play with them when she is laying down. Such a silly girl!

♥ She loves to put anything and everything in her mouth!

♥ She loves to touch your face when you talk to her or put it near hers.

♥ She adores her brother and sister and watches them all the time.

♥ She has a very ticklish neck and laughs hysterically when you tickle it!

♥ She loves Yogurt Melts and tries to grab them off her highchair tray and put the in her mouth. She hasn't quite gotten the hand eye coordination down, but she tries!

♥ We missed her appointment to see her Cardiologist this past week because her Daddy had to have an emergency appendectomy. She is scheduled for the 19th and on that day we will plan for her surgery. For now she is really healthy and shows no signs of cyanosis.

She brings us so much joy and we just love having her in our family!
Happy Six Months Mylah Leilani!

MRI

Today Mylah had an MRI to map out what we will do in the near future for her heart health. Currently her left ventricle is slightly ...