Monday, May 28, 2012

Her Ol' Self

Mylah is doing so well these days. I am almost in denial that we just went through such a hard period in our lives. I can't believe it's almost been five weeks since Mylah's surgery. She is recovering miraculously and getting her personality back.



She's babbling, smiling more, crying less, playing, eating, and enjoying a healthier life and a healthier heart.


(First Strawberry)

We are reminded daily of the sweet miracle she is. Nothing is taken for granted and every precious moment savored.

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She has learned so many new things and is growing nicely. I am so grateful for the blessing of having her here, and to finally be getting a few more hours of sleep at night! It is amazing how quickly little bodies heal. We are so thankful that Mylah is finally back to her ol' self!


Tuesday, May 22, 2012

The Mended Heart

I can't believe I haven't posted here about my recently opened Etsy shop! It's geared towads creating awareness about CHD's and all the funds I receive from selling products will go towards medical bills from Mylah's surgeries and our travels to take her to appointments. It is something I am so excited to share and passionate about. Check it out!

Monday, May 21, 2012

Self Feeding

Mylah has mastered a new skill!! She can feed herself! She worked and worked and worked on it and finally has figured out how to grasp her snacks and shove them in her mouth. Now she can't eat fast enough!





I am so proud of her and as always am impressed by her developments. Heart babies are most often delayed in their development and each milestone is a miracle. We are truly grateful for our sweet miracle.


Sunday, May 20, 2012

Enduring

It's quiet here on this beautiful Sunday evening. My kids are sleeping soundly, Neil's at work, and I am alone, in my thoughts.

Things have been tiring and emotionally challenging lately. I have wanted so badly to sit and write here on Mylah's blog, do an update of sorts, but all I can think of is that things are going well. Each time someone asks how Mylah is, I reply, "Good, still kind of fussy, but good." I assume my boring response is just due to the fact that I am enduring. Continuing. Living.

I never really let my emotions surface during the long two weeks we spent in the hospital. A defense mechanism I assume. I cried once, when Mylah was having horrible days and nights and we weren't sure what was wrong. Once. Isn't a Mother of a Baby who has endured two open heart surgeries supposed to cry more? Aren't I supposed to be some sort of emotionally unstable? What is going on here?

I have asked myself these questions numerous times, the answer always come back to this. I endure. I don't fall to the floor sobbing and inconsolable. I endure. I hold my head high, I snuggle my sweet heart baby, I love my husband and children, I pray to a loving Father in Heaven with all of my being, I smile, I laugh, I joke, I endure.

In living through the numerous experiences Neil and I have in only six (almost seven) years of marriage, I have learned to just endure. It's all I have. It's all we have. Our relationship is stronger than it's ever been. Our love is deeper. And I thank my Heavenly Father for that. He NEVER sends us anything we can't handle. I am so grateful he knew we could handle what we've been given. I endure because I know there is a reason for all this.

Lately we've endured sleepless nights, crying fits, and aching to find a solution to Mylah's tears. She hasn't quite been herself, and everyone says to give it time, she'll come back. I am slowly seeing that, S-L-O-W-L-Y. She's such a fighter, and never am I frustrated with her. NEVER. This isn't anything she asked upon herself. I don't really blame anyone, I just endure. :)

I am so thankful that through all of our trials Neil and I are able to laugh. We laughed so much, and joked even with our sweet precious heart baby lay healing in the hospital. Insensitive you say?? No, enduring. Laughter was our best medicine and I we are better because we have the smiles and joy to make it through another day.

So here we are, almost four weeks post-op, and things are slowly getting better. The beautiful weather, our small town, our wonderful family and friends, and a precious heart baby's healing body have all helped to make it tolerable. As tired and frustrated as I am, I see a glimmer of hope in the delightful squeals that emerged from Mylah's mouth tonight, in the laughs and smiles. She is starting to feel better and we continue to endure.

Saturday, May 12, 2012

Days at Home

I am so sorry for leaving everyone hanging after our Goodbye PICU post! As soon as we returned home, life went back to full swing normalcy! I am frantically trying to catch up on our family blog as well as Mylah's here, along with wifely/motherly duties. I apologize for my delay in updating you on Mylah's progress since she's been home!

Mylah took her last dose of Methadone on Monday morning. The next couple of days she seemed ok, but has still never really stopped fussing around certain times. She seems slightly inconsolable, and agitated, but nothing like we saw at the hospital, and not making us think we would have to give her Methadone again.

She is loving being in her own atmosphere again, with her brother and sister, Mommy and Daddy, and Grandma and Papa H. She loves having her toys to play with and nice weather to enjoy days outside.

She is having a horrible time sleeping at night. I am not sure what the reasoning is, but she wakes about 5/6 times a night. It's like we have a newborn again! I am tired most days, but am realizing that after something as traumatic as open heart surgery, it will take her a little while to get back into her routine.

Her incision site and her chest look really well, as do her central line site and art line site. All is healing up nicely. She has a few horrible looking bruises from too many IV sticks, but those are slowly fading.

We still don't pick her up underneath her arms and are mastering the art of "the scoop" as we call it, really well.

We are so happy she is home and doing well. We are blessed beyond words for the numerous phone calls, texts, emails, drop ins, meals, letters, donations and love from everyone. We couldn't have gotten through this without each of you! Thank you!

And for those of you who have been waiting, here are some beautiful smiley pictures of our happy heart baby,

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Love to you all!

- Neil and Lara

Sunday, May 6, 2012

Goodbye PICU!!

It's discharge day!!!




Goodbye Pulse Ox,

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Goodbye Leads

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Goodbye small cramped bed/chair thing,

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Our bags are packed,

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We are all ready to go!





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Goodbye Surise PICU!!

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Today was the day! We left the PICU after 14 long days! We are so grateful for the care Mylah recieved in the hospital, but are glad to finally head home. Thank you everyone for your love and support while we were in the hospital. Thank you for the visits, meals, and nights out. We will spend this next week recouping and getting back on schedule!

- Neil and Lara

Saturday, May 5, 2012

Day 11 - Post Op, Day 13 - Hospital Stay

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Here we are, day thirteen. Things went really well last night! Mylah slept all most of the night, only waking once to eat. She is getting so much better at just having the nurses bother her and going right back to sleep!

She ate breakfast and took her meds well. Shortly after that we had Dr. Marquardt come in and talk to us. He is the PICU Physician. Basically he said all we need Mylah to do is go poo. Once she does and they see that she is tolerating her methadone wean well, we could possibly go home tomorrow.

We can't wait! Dallin and Rylee ask everyday when we will be home and we are getting cabin fever! Hopefully they are really going to discharge Mylah tomorrow. We need to get out of the hospital!!

Other than all of that, Mylah is so happy and healing really well. She had an ECHO done this morning and her heart looks beautiful!





We are so blessed to have had such wondeful medical professionals care for our sweet girl! Hopefully we will be headed home tomorrow!

- Neil and Lara

Friday, May 4, 2012

Day 10 Post Op, Day 12 Hospital Stay

We beat our previous record of an eleven day hospital stay. We are now on day twelve this time around.
Ugh. It's getting to be really hard. Hopefully we will hear when Mylah will really be discharged sometime today. Can't count on it, but we are hoping.

Mylah had her best night to date, last night! She slept the entire night, ate once, and was awake for a little bit when the nurse came to take her vitals. But she feel asleep right after all by herself.

We slept ok, crammed on a small bed/chair thing, sleeping opposite directions, so we could both have some room. It's a pretty funny sight, but works for us! We are glad to just be here together. It makes dealing with all of this, a little easier.

Mylah has been taking her methadone orally and does really well. Hopefully that will give her a real good chance to go home soon. She has had no more signs or symptoms of withdrawal, this wean seems to be working really well.

As usual, thank you for your love and prayers for Mylah and our family. Pray that we get out of here soon!!! :(

- Neil and Lara

Thursday, May 3, 2012

Discharge Date

I swear everytime I post something changes around here!

So the Cardiologist team came by this morning and told us because we live so far away discharge from the hospital will be more like Sunday or Monday. It's been some of the longest eleven days ever!! But what's another four?!!! Ugh. Maybe things will change by tomorrow.

Keep those sweet comments and words of encouragement coming! They make these long days a little better!

- Lara

Day 8 Post Op/Post Withdraw

Yesterday we both woke feeling completely helpless. Frustrated and tired we were at our wits end with Mylah's sleepless nights, agitation, and aversion to eating!

After figuring out that Mylah was withdrawing, we were able to breathe a sigh of relief.



Finally with the methadone in her system, Mylah had such a good night! She ate twice and never fussed. It was so nice to get pretty good sleep and to know that she was eating!

We are so thankful to our nurse and dear friend, Laura, for realizing her symptoms and getting her the medicine necessary to calm her and work towards discharge.

We are hoping today is the day, but will have to wait until her doctor and Cardiologist give the green light!

Thank you all again for your continued prayers, comments, and concern. We are so thankful for each of you and your love for our sweet girl and our family!

- Neil and Lara

Wednesday, May 2, 2012

The latest about Mylah

Our sweet girl has been doing really well post op. We have only run into one little snag and finally her doctor this morning figured it out!

Mylah has been showing signs of several symptoms of withdrawal from the strong drugs she was on. They are called opiates. Symptoms include irritability, loss of appetite, diahrrea, a random fever spike, yawning, sneezing, gagging, and long periods if restlessness. She has had all of those. Because of this they are doing a test and giving her some morphine. This is to see if they are right about her withdrawing from opiates.

After having her first dose, she has calmed a little after having it and is more like herself. This confirms their theory and they will work on weaning her.

Once we go home, she will be on a medicine called methedone. This will help her wean off the opiates. Not sure when we will get to come home, but at least we are working towards figuring out why has hasn't eaten in days and is so irritable and restless.

Her heart is doing really well post surgery...we are now just dealing with the opiate withdrawals. We also got.her out of her room and walked the halls and them let her play in an excersaucer. She loved it!



Please pray for her and that her body will start to be less dependent on the drugs.

Thank you for your love and support and help. We appreciate each of you and all you have done!

- Neil and Lara

Tuesday, May 1, 2012

Post Op Day 6

Today has been better for our heart baby. She slept really well last night. She woke a couple times to eat and only fussed for a little each time the nurse came in.

This morning they stopped her Precedex for the final time. Hopefully we don't get the reaction we did yesterday.

She had another ECHO done this morning and her heart looks really good. No fluid around it.



Later today our nurse Becca was kind enough to help me bathe Mylah. The poor girl hadn't been cleaned since last week Post Op. It was nice to smell a clean baby.



The only setback we are still having is that she won't nurse. She won't even take a bottle. They have to remove the lines she has in her thigh because they are over a week old. So she is having another IV line put in so they can keep her on fluids. She will most likely stay on those until she eats more.




Please continue to keep her in your prayers. She can't come home until she takes in more feedings.

As always, thanks for all your love and concern!

- Neil and Lara

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 ...