Thursday, October 6, 2011

Mylah's Timeline

We both feel like Facebook is not an appropriate platform for posting about Mylah's progress, so
we will only post updates about Mylah here on her blog.
That was our original intent, so we will stick with that plan.

We are going to begin with an abridged timeline of the events over the past few days.
We hope this keeps you informed.

Saturday - 10/1/11
Mylah's Birthday!

She was born healthy, natural delivery, and was pink all over.
She was immediately assesed by the NICU team and after a kiss and love from Mommy,
she was taken to the NICU while Daddy followed.
She did really well and kept her oxygen saturation high.

Sunday - 10/2/11
Mylah continued to do well.
She stayed pink, and in Tet-Baby lingo, that is a good thing.
She had her Echocardiogram done and the Cardiologist was please with what he saw.
Mylah indeed had Tetralogy of Fallot, but her Pulmonary Artery looked nice and open.
They were happy to see her doing so well and finally let Mommy nurse her!
She did really well and kept all her vitals and sats where they were supposed to be.

That afternoon the Neonatologist - Dr. Ramsey, came and talked to us about Mylah's kidneys.
They had a small amount of Hydronephrosis about a grade 2.
They were going to watch it and start her on antibiotics to keep them from getting infected,
and to keep it from going to her heart.

She did well throughout the night and nursed really well.

Monday - 10/3/11
Mylah continued to eat really well and keep her vitals and oxygen saturation high.
By 1:00 p.m. the Neonatologist was really impressed with Mylah' progress.
She was satisfied with how well her blood was saturating and with her nursing.
She decided to take her IV fluids to down to half the dosage and watch her blood sugar levels.
If those stayed up she was on track for discharge to go home.
She also needed the go-ahead from the Cardiologist and to pass the car seat challenge and she would be ready to go!

They watched her for the rest of the day and she was remarkable!
I got to stay one more night with her in what they called a Home Room.
It gave me the chance to feed her and spend the night with her.
We were hoping all would go as planned and that she would come home!

Tuesday - 10/4/11
Tuesday morning Mylah had done really well all night.
Her Sats and Vitals stayed constant.
She passed her car seat challenge and nursed well all night.
The Neonatologist wanted her back down in the NICU to observe and check her before they dis-charged her.
The Neonatologist was confident that she be released to go home within the hour.
The Cardiologist came and did another quick Echo of her heart, things looked good to her.
Next was her hearing test.
She was an hour behind on her feeding and screamed the whole time but finally passed.
The final item was her RSV immunization.
Because she is a CHD baby, they wanted to make sure she had a defense against RSV while at home.
The nurse then removed her IV and was getting ready to write down her vitals and sats, and Mylah's saturation shot way down.
She had a reaction to the RSV shot and her heart couldn't handle it.
They eventually determined that she couldn't go home because her sats were too low. Also, the pressure gradient at the pulmonary out-flow went from 25 (good) to 60 (bad)
They kept her overnight to observe her.

Wednesday - 10/5/11

I went in at 8:30 a.m. to feed Mylah for the morning.
She was saturating well and ate well.
After her feeding the Cardiologist came to do another Echo on her heart.
While doing the Echo he determined that her Pulmonary Artery was looking more restricted.
Her outflow wasn't what he wanted it to be and unfortunately that meant that she wouldn't be going home.
The Neonatologist talked to me and said they would be putting in a PIC line - larger IV- to start what is called Prosteglandins.
They hoped it would re-open what is called a ductus in her heart, so they could place a stent in it, to allow better perfusion to her lungs and body.
They poked numerous times and never got her PIC line in.
They decided to put two lines through her belly button.
Those were successful.

They pushed the Prosteglandins and she took a downward spiral from that point on.
Follow intubation, and after being placed on two different types of ventilators, they administer numerous drugs that she never responded to.

  Her color was very poor, and we were quite nervous for her. The Cardiologist on call performed outstandingly, and never left her side. He lead the NICU team with amazing authority and expertise. After what seemed like an endless waiting period of monitoring and preparing and calling in surgeons, Mylah was given a blood transfusion, and they rushed her in for open-heart surgery. Her surgery began at 8:30 p.m. She was given a BT shunt...a procedure where they tie into her aorta, and shunt, or supplement blood to her pulmonary artery...thus supplying her lungs with sufficient blood to be oxygenated and carried throughout the rest of her body. She was in surgery for about two hours ending around 10:30 p.m. The surgeon walked with us up to the PICU, and explained how well she responded to the surgery, and mentioned how he felt that "there are a lot of people watching out for your little girl", and acknowledged the miracles that took place before and during her surgery. He remarked how she "was born at the right time", where modern medicine has made significant progress, and there are so many advances in the technology available to them. He mentioned how the human body is so amazing, and adapts around the procedures that they can perform. We made sure he knew how grateful we were for him, and the rest of the surgical team.

We spent a few minutes with Neil's parents visiting her in the PICU, where she will recover for a minimum of 1 week. Regardless, she will determine how long she will be in the PICU. We will be here to support her all along the way. We thank all of you from the bottom of our hearts, for the many prayers, and unfailing support for our little heart baby.


  1. Oh Lara~I am so sorry! What a hard thing to go from being ready to take your sweet little girl home to rushing into open heart surgery!! Know that we are praying for you & your family! I can't imagine what you & Neil must be going thru ~ I was in tears just reading your post!! Lots of love from Panaca!!

  2. Our thoughts and prayers our with your family and baby Mylah!

  3. We will continue to keep Mylah and your family in our prayers!

  4. What a precious little baby! She is adorable! So Sorry that you have to go through this hard trial in your lives. I hope everything will work out for the best!!!!

    You and Neil have been through so much! Best of Luck! It will get better. There is always a rainbow after the storm!!!

    Love the Lively's

  5. How quickly things can change, going from thinking she would go home to having major surgery in such a short time, how scary. It is just amazing all that they can do though, it is definitely a miracle. Sorry for all that you are going through and I hope her recovery goes smoothly.

  6. She's so beautiful, Lara. All of you are in our thoughts and prayers! Love,Emily Mattson

  7. What a special and precious little bug. Born to amazing parents no doubt!

  8. It is so amazing to see the Lord's hand in everything. He is definitely watching over you and little Mylah. I hope and pray that she will recover well and get to come home with you soon! You are amazingly strong!! Keep it up!!

  9. Lara, I am so sorry for this trial, but just from reading this post I can feel that you guys are so strong and you seem to have such peace about everything. I am so grateful for that! She is such a beautiful little girl and she is so lucky to be born into such an amazing family with such faithful parents! Your family is in our prayers for sure!

  10. Mylah is such a beautiful little girl, but all those tubes just break my heart. I have been praying for her everyday and I will continue to pray for her. She is a sweet little angel from heaven that will bring your family so much joy and happiness forever! Heavenly Father has sent her to you and Neil because you are strong enough to handle this trial with her little heart whether you know it now or not...I strongly believe that. Please know that I'm always here to help you guys with anything you need. Love ya!

  11. I cried through this whole post. I am so sorry for you as a mother to have to go through this. I admire your strength and wish sweet baby girl a speedy recovery and peace upon your family.

  12. Oh Lara, I am crying! She is so beautiful, and I know she will be fine, but I am just so terribly sorry for the emotional rollercoaster it has been for your family. To think you were about to take her home when all this happened! My heart goes out to sweet little Mylah, but no doubt angels are watching over her... can't wait to meet her! Sending lots of love and prayers your way.

  13. I am getting choked up, words cannot express how sad I feel for you as parents. but, I am sure she will be ok. I can't imagine going through that. Best of luck we are keeping you in our prayers, this music is amazing as well.

  14. Mylah is such a beautiful little girl. I am sorry that you and Neil are having to go through such a difficult trial. I will keep praying for You and baby Mylah.

  15. She is in our hearts and prayers!!! Love from the East Coast.

    Patrick, Linnea & Tyla Simpson

  16. Oh Lara!! I cant even imagine how heartbreaking it is to have to watch your baby go through that. I'm so glad everything is ok. Your family will definitely be in my prayers. She is absolutely beautiful. I hope you get to take her home soon.