Thursday, November 26, 2009

Myra's Testimony

One of my church pastors asked Paul and I to share Myra's testimony at our Thanksgiving service. Though nervous, I am honored at the opportunity to share what God has done for our little girl. This story is not in it's completion; I will some day write out every little miracle we've seen. But, it's a story to share with the world on what our God is capable of, willing to do and desires to do for all of His people.

For our 5th baby we had a home birth planned. We had a successful homebirth with #4 and were looking forward to the experience again. When I was 3 days overdue I had started some light contractions. My last two children were 10 and 15 days overdue, so I figured I still had another week. After slowing down from my day that evening, I felt uneasy that I hadn’t felt the baby move during the day. Within 30 minutes of calling my midwife concerned, my water broke and our baby had, had a bowel movement due to some form of stress. My water was thick and green. I called for childcare to come immediately and headed to the hospital as quickly as I could. I called a few friends and family members to be praying. On the way, I begged God to be able to hear my baby’s heartbeat. I told Him that I wasn’t ready to let this baby go, and I didn’t know if I would be able to delivery a baby knowing it had died. I didn’t care if they gave me a c-section, I just wanted to see my baby alive. I felt numb. The fact that my water had broke was a miracle. I was then alerted to the fact my baby was going to need significant help after birth that I would not have been able to provide at home.

When we arrived at the hospital they hooked me up to a monitor and I heard my baby’s heart beat. My midwife, Paul and I praised God in that little room.

I labored for 3 hours with a baby’s heart rate that wasn’t ideal. Suddenly, baby’s heart rate dropped during a contraction. It recovered that time, but the next contraction it didn’t recover. I was rolled away immediately for an emergency c-section with general anesthesia. Neither my husband nor myself watch our little girl being born. Which proved to actually be a blessing in disguise.

Myra was born not breathing with no heart rate and was put on full life support within minutes of birth. Some time between when her heart rate dropped and when she was born, 10-15min, she had suffered severe brain damage due to lack of oxygen.

She was hooked up to 2 large ventilators and had at least 7 IV meds going into both hands and her belly button.

At 4 hours and 24 hours she had uncontrollable seizures.

When people called and asked how she was doing, all we could say was that the doctors weren’t expecting her to live.

We visited her often in the first 48hrs. I felt strongly ever since I heard her heartbeat when we arrived at the hospital that she would live, and I believe God gave me a supernatural peace throughout this whole experience. But, that hope was sometimes hard to hold onto whenever we talked to the doctors.

On Day 2, the NICU doctor and pediatric neurologist sat us down and went through her body systems to explain her condition:
-she had no reflexes due to severe damage to the central nervous system
-her pupils were not responding
-she had no breathing efforts
-she was on blood pressure medication to regulate her heart rate
-her blood was having a difficult time getting oxygenated because of the pulmonary hypertension
-liver enzymes were leaking into her blood stream causing ongoing damage to her body
-her EEGs at 8hrs and 32hrs showed severe suppression of brain activity and deterioration from
the 1st one to the 2nd one
-her blood sugar and platelets were not stabilizing
-and her kidneys were not functioning at all and she was beginning to swell and retain water

The doctors told us that she was not likely to survive because there was nothing they could do to make her organs begin to function like normal. She was starting to swell and they said we should consider signing a Do Not Resuscitate paper or consider turning off her life support machines. They said she would probably swell up very large and then her heart would eventually give out. And because her EEGs showed little brain activity, if she did survive, she would likely be in a vegetative state for life.

It was that afternoon that Paul and I went back to my hospital room and sobbed, begging God to help our little girl. I believe God spoke to us through many songs and scriptures during this time. We listened to the song “Porcelain Heart” by Barlow Girl over and over. It says, “You pray, this can't be the way. You cry, you say something's gotta change and mend this porcelain heart of mine.” It was the hardest moments I have ever been through, and I still can’t listen to that song without crying. I told God we were helpless and needed His strength.

That day God showed me Isaiah 29:14, “Therefore, once more, I will astound these people with wonder upon wonder.” and gave me hope again. This verse has been proven over and over again these last 2 months.

And He shared Psalm 33:18-22 with Paul,
“But the eyes of the LORD are on those who fear him,
on those whose hope is in his unfailing love,
to deliver them from death
and keep them alive in famine.
We wait in hope for the LORD;
he is our help and our shield.
In him our hearts rejoice,
for we trust in his holy name.
May your unfailing love rest upon us, O LORD,
even as we put our hope in you.”

That evening we brought our four other children up to visit Myra. We weren’t sure they were going to have another chance to ever see her. Also, that evening Paul and his father put together a prayer time with our immediate family. Kevin brought his guitar and Paul and him stood over Myra praising God and proclaiming healing into Myra. At the same my mom, mother-in-law and a few others were praying in the lounge. At this point we understood that only a miracle would allow Myra to live. We were also able to pray for single mother who’s daughter had been in the NICU for almost a month with down’s syndrome and a plethora of other issues. He allowed us, in our suffering, to minister to someone else and it was Awesome.

It was the very next morning (Day 3) we went down to visit Myra, and the nurse told us she had began to urinate! Her kidneys seems to be functioning out of the blue. We got an email later that morning from a friend whose healing team has been praying for Myra. One of the members of the team said “God had her pray that the heavens would open up and that childlike in appearance angels were descending with all the organs that Myra needed from the warehouse of heaven. That the organs would be supernaturally transplanted into her and God himself would rub those organs and that she would produce urine that day.”

It was from that day forward that Myra began to get better, miracle after miracle. The doctors seemed to be amazed as each of her organs started functioning. There were many times they would report happy news and actually state they weren’t sure why or how that part of her began to work normally. We knew.

On day 3 she had her first voluntary movement
On day 6 Myra opened her eyes & yawned for the 1st time
On day 7 her blood pressure stabilized
On day 9 we were able to hold her for the first time
On day 12 she cried for the first time
On day 17 her lungs were completely healed

Those are just a handful of the many miracles we witnessed.

On day 16, Michelle King put together a world-wide prayer vigil for Myra through Facebook, of which hundreds of people attended from their homes. We prayed specifically for her suck, swallow and gag reflexes to start working, for her brain to be unaffected by this event and for her head to grow and the bones on her head to stop overlapping.

Four days later, one day before her surgery to place a g-tube in her stomach for feedings, she began to suck on a pacifier. In less than a week after surgery, the g-tube wasn’t being used at all for feedings and she was full-time breastfeeding in the hospital, a very special answered prayer.

After recovering from surgery, Myra came home on Day 30. She was given 22 diagnoses in those 30 days, almost all of which have resolved. But, the miracles haven’t stopped. Since she has been home:
-her tremors have gone away completely
-she is weaning off her seizure meds still with no seizures
-her gas issues related to her surgery have subsided
-her tone issues have improved on their own
-and she is tracking movements --- her eye doctor said her eyes seem to be normal after the CAT scan had showed the greatest damage to her brain was in the area responsible for vision - PRAISE GOD!

So, as of right now the only things we are still praying for are her brain to grow and move her skull bones so they aren’t overlapping, and for her brain to be unaffected by her birth trauma. Just yesterday her pediatrician said her head has grown .3cm!! Another miracle!! The doctors say she could still have severe handicaps and only time will tell. After all the miracles we have witnessed, it’s hard to even believe she isn’t going to be just fine. And we continue to pray and believe for God to completely heal Myra for His Glory.

Nicole Nordeman’s song “Gratitude” has really put much of this in perspective for me. Her lyrics say,
“Oh, the differences that often are between
What we want and what we really need
So grant us peace, Jesus, grant us peace
Move our hearts to hear a single beat
Between alibis and enemies tonight
Or maybe not, not today,
Peace might be another world away
And if that's the case . . .
We'll give thanks to You, With gratitude
For lessons learned in how to trust in You
We are blessed beyond what we could ever dream
In abundance or in need
And if You never grant us peace
But Jesus, would You please . . .”

For the remainder of Myra’s life we are going to trust God that He will use her miracle testimony to prove His love to us, to prove His power over this earth, and to strengthen the faith of anyone who hears her story. And no matter what her outcome, we are going to praise God and trust in His greater plan.

This verse has become dear to our hearts, as we feel as Paul did when he wrote to the Christians of Corinth. 2 Corinthians 1:8-11, “...We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.”

Please continue to pray for Myra, and to praise God for His faithfulness in her name. We give Him all the Glory for her continued healing and are thankful for His many blessings this holiday.

Monday, November 23, 2009

Puzzle Mania

The Klan was very proud of finishing this 3x2 puzzle with 300 pieces the other day. MommyK does NOT like puzzles.....but still helped put together the "easy" parts, as Mr. Prince would say. Mr. Prince and the Klan finished the rest before dinner. I was proud, but happy to have my dinning room table back, too!

BTW, sorry....Angelica Pickles is almost always naked.....

Friday, November 20, 2009

Family Photos

Myra 6 weeks

The girls

The Boys

The Klan

Christmas Photo - Myra is screaming and I don't like the pose, but oh well!

The girls in their outfits - this pictures didn't turn out the best, but I love their dresses!

Myra Stylin' in her New Nappies

We got Myra's BumGenius XS AIO cloth diapers in the mail this week! I had to force myself to not get all PINK because I know I will use them for other childREN. According to Mr. Prince, we are only having ONE more, but I have different plans....HA!

Isn't she so cute in them! We've used the BG one-size diapers since baby #2, but they are still huge on Myra. My other babies were 8lbs at birth and 11 or 12lbs by 1 month, so they moved into the one-size right away. Myra is still so dinky and the one-size hits her g-tube. So, anticipating buying another $100+ in diapers, we decided cloth would be better and an investment for the future. And PaPaw and Grammy were nice enough to purchase them for a "birthday" gift for Myra.

Wednesday, November 18, 2009

Myra Update : 8 weeks old

Myra has continued to do well these last few weeks. In a few days she will have now been home just as many days as she spent in the NICU - 30 days. These last four weeks went by a lot faster than the first four, that's for sure! And they have been much more enjoyable. =)

The children love to hold Myra. Boo Boo knows we use the Boppie to hold her, so he throws it on the floor, sits on it and then holds his arms up to hold her. He doesn't quite get why we use the Boppie when we hold her....ha!

Myra is having a lot more happy awake times than even last week. I think much of her gas issues are starting to work themselves out quickly (Praise!!). We have opted to not use the g-tube for burping so we can get it out next month (Praise!!). I think it's going better than I expected. We also have been giving her Zantac, but aren't sure if that's helping or not. I'll probably try to wean her off that in a week or so to see if her demeanor changes.

She has still had no seizures, as we wean her from her Phenobarbital. Praise God!! A seizure disorder was one thing I truly thought I could handle if it was controlled with medication, but God has continued to surpass my expectations with His Healing! Please continue to pray as she grows out of this dosage of medication, that seizures will not show up. How much easier life will be without a seizure disorder label and giving oral medications 2x a day.....

Myra's small head is of the greatest concern right now. I haven't gotten her head measured since early last week, but I personally have seen some changes in the last week. God is hearing all your prayers!! The ridge on the top of her head is starting to smooth out. I can't tell that much is changing in the back because I don't see it all the time, but so far I haven't noticed anything. It's still pretty overlapped back there. But, God has proved Himself to be All-Powerful, so we are just waiting for them to move.....expecting God to move them.

We will be starting therapy with First Steps next month. I am looking forward to getting some good advice on how to help Myra not prefer her right side. I have found that when she sleeps on me stomach to stomach, she prefers to turn her head to the left. So, I am trying to do this throughout the day to stretch out those neck muscles. Between that, positioning her on her side while sleeping, and a chiropractor, physical therapist and massage therapist, I see some great potential. Her tone issues are very slight, so I assume these will be correctly easily with a therapist.

We also have an MRI scheduled for December 8th. We had our 5th EEG done last week, too. After the 8th, I will meet with our new neurologist to discuss the tests. I really like our new neuro and look forward to hearing her opinion on Myra's current condition.

So, I am so pleased with how Myra is doing, hope you are too! God has definitely made Himself known as Creator and Healer in Myra's life. Last Sunday my pastor said...

A miracle is a strategically placed moment where God give us a tangible glimpse of His desire and ability to reorder and transform our world.

...I couldn't have said it better myself. Go God!

Wednesday, November 11, 2009

Myra Update - 6 weeks old

Well, in the last 2.5 weeks since Myra has been home I have had 25 appointments (8 or 9 have been home visits thankfully) and in the next month I have about 14 more scheduled. So, I have been say the least. =) Myra is seeing a pediatrician, neurologist, ophthalmologist, chiropractor, massage therapist and surgeon and is getting services from Parkview Home Healthcare and First Steps. I have a feeling this next year will be challenging dragging 5 children around to all these appointments. Fortunately, I have had help these first three weeks she has been home from Mr. Prince, my friend Andy and Grandmama, and I haven't had to venture out yet with all 5. Next week all that will change.

Myra is physically doing very well. She moves like a 6 week old baby with only slightly high tone in her legs. I haven't noticed her tremors for over a week now, but it's hard to tell since she has overactive reflexes anyway. But, she basically looks like a perfect little newborn. She is nursing full time and we haven't been using the G-tube. The surgeon said he will take it out in mid-December if we continue to not have to use it and she is gaining weight well. She is now 7lbs 13oz, a pound bigger than when she left the hospital 2.5 weeks ago, and they seemed pleased with her weight gain. She does have a herniated belly button, but her pediatrician said it is of no concern and will likely go away by 9 months old. Her bump on her wrist has gone away completely and was likely due to the IVs from the NICU. She is holding her head up well and tracking us as she watches us, so they are pleased with her current developmental status. She did pass her hearing test and will be seeing a ophthalmologist to check her eyes this month. So, physically she is doing well. Oh the praises God has received from this little girl and those around her!! We are SO very thankful that God chose to prove those NICU doctors wrong!

Neurologically, we still aren't sure how she is doing. She had a repeat EEG today and will be having an MRI this month, also. These tests will tell us a little more about how she is doing neurologically. She is still on Phenobarbital for seizures, but they are currently weaning her off this medication in hopes she will continue to not have seizures. A therapeutic level is between 20 and 40 and she is currently at a 17 still with no seizures. Please continue to pray she will not have any seizures. Both neurologists we have seen told us she is at high risk for having seizures at any point in her life. So, even if she doesn't seize in the first year, she could seize 10 years from now. So, unfortunately it's something we will always have to be prepared for even if she is able to wean from the meds right now. If she does seize, they will keep her on the Phenobarbital for a few years. We are also supposed to be watching for infantile spasms, which are different than seizures. I was told these are precursors to "not good news" for Myra, so we don't want to see these at all. We will be looking for these for the entire first year but are praying we don't see them. As far as her brain damage, the MRI will tell us a little more details but still can't predict the future. Her possible developmental delays and handicaps will show up over the course of her life. Good thing God will never leave us to deal with this alone...

Of greatest concern right now is the fact that her head has not grown since birth. She should have grown 2cm so far, but her bones on her head are still overlapped. They said this is because her brain has not grown, which is their concern. They aren't sure why her brain isn't growing, and don't know if it will grow at all. They said worse-case senerio is that her brain wouldn't mature at all beyond this point and her body would grow, but she wouldn't develop past an infant. Today was a hard day discussing all this with the doctors. I figured because she is doing well physically that she must be doing well neurologically. But, unfortunately, how she is doing now doesn't help predict how she will do in the future. And, the doctors can't make her brain grow, but I know God can! I am pleading with God to perform yet another miracle for Myra. Please join me, for God has answered the prayers of many for her in the past.

Thank you to all who have babysat, made a meal, called to talk, and sent up prayers. We feel very loved and supported. God has surrounded us with a fabulous church family and wonderful friends for such a time as this.

Monday, November 2, 2009

What am I thankful for?

God took my baby from this....

To THIS.....

So Thankful.....