Friday, October 30, 2009

Myra is HOME!!

Miracle Myra currently 1 month old, 7lbs 5oz

Well, our computer crashed the day we brought Myra home, so I haven't had a chance to update my blog. Our good friend was nice enough to rebuild the whole thing for a SECOND time over the weekend. We are truly blessed with our friendships these days!

The Klan has been waiting 30 days for their baby sister to come home!

Myra came home on Friday, October 23rd. She left weighing 6lbs 12oz and is now 7lbs 5oz, less than a week later! She is doing great! She is still full-time breastfeeding, too. She is having some gas issues from the nissen fundoplication and we are trying to work those out using Mylicon drops and Gripe water. I hope this won't be a long-term issue and she will start to feel better soon. After all she has gone through, I hate for her to be in more pain for many more weeks...

Angelica Pickles and Myra

We have received so much support and prayer during this time we are overwhelmed with thankfulness. A good friend of mine has organized meals 4x a week since Myra was born, continuing through the second week of November. My children would have had pb and mac and cheese for weeks straight if these wonderful meals weren't coming! It has been such a blessing! We have also had many friends and family provide childcare while we needed to be at the hospital. Another good friend from MI will be staying with us the first week Mr. Prince goes back to work and my mother is coming the following week to help, too. And I can't forget to mention the hundreds of people lifting Myra and our family up in prayer. He is listening and has been answering those prayers daily. Thank you so much!

Princess Pea and Myra

So, at this point we are doing well and adjusting fine. Myra seems to be doing better than anyone expected, and we know it's because her Father in heaven has been restoring her little body bit by bit, despite the doctor's diagnoses. I read her discharge paperwork this week and she was actually given 22 diagnosis during her 30 days in the hospital....all of which have resolved (except some slight hypertonia in her legs which will be treated with physical therapy). Wow! It's overwhelming reading through the paperwork and realizing just how sick our little girl was and how dire the situation was those first 48hours. But, we are so thankful for the peace that God graciously poured on us during those days and the hope and promises He gave us. He spoke to us very specifically through His Word and through many different songs during those weeks in the hospital. Those songs and scriptures I will always hold dear and can't wait to share them with Myra when she is older. I have also kept a daily journal for her, recording her condition and all the miracles God performed as he restored her. I'm so glad I kept up with it looking back on the experience.
Sid the Science Kid and Myra

As for the future, it is still unknown. Though, we know Myra's life is in God's hands and trust His omniscience and His love for Myra. He knows exactly what He created Myra for, and we've trusted that all along, whether in life or death. And, we are still asking for a complete healing for Myra. The doctors say she has "global atrophy" in her brain and that they can't pin-point specific areas of the brain that are damaged. They said we will see deficiencies as she grows and develops to tell us what has been damaged. But, we know the brain is an amazing organ that heals itself and creates new pathways after paths have been damaged. Anyone who works with the brain must know there is a Creator because of how complex it is and how unpredictable it can be. We are praying that whatever parts have been damaged are parts of our brain that we don't use anyway, or that God will restore the functions that have been damaged. Either way, we want Myra to have full capacity in the end. And, what greater testimony than a full restoration from a body that had no life when it was born!! And, it's quite obvious in this case that is was God restoring Myra. Even many of her doctors have attributed her success to God! The doctors sustained her body for a time, but they could not make her organs start to function, her breathing come back, her suck/swallow reflex come back, or anything else that has restored. Humans are still very limited when it comes to such medical conditions, and we are so thankful we had someone Greater to turn to in a time like this. I don't know how anyone could go through a situation like this without a belief in a Greater Power. And I'm thankful God found Mr. Prince and I early in our lives and prepared us for this situation, too.

Boo Boo and Myra

So, thank you to all who have been praying for Miracle Myra and we ask that you continue to lift her life up in prayer, praying not only for her restoration but for her testimony to "astound" anyone who hears it. Isaiah 29:14, "Therefore once more I will astound these people with wonder upon wonder."

This scripture tells our story perfectly....

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."

Wednesday, October 21, 2009

Myra, Day 28.....Homebound!

Well, Myra has been full-time breastfeeding since yesterday (though she will take a bottle a few times today while I'm celebrating Princess Pea's 5th birthday with her and Daddy visits). She is doing great and the doctors don't seem to think she needs any supplemental formula or even more milk through her g-tube other than what she is able to extract herself.

I have been bugging the doctors and nurses for a few days now to get all the details done so she can go home, and one doctor told me today it will be 24-48hrs and she will be home! Oh how nice it will be to parent my children all under one roof....though I might miss those 20 minute drives alone in the car someday.... =)

Sunday, October 18, 2009

Myra, Day 25

No more tubing in Myra's face!

Well, it's been a long four days since surgery. It took the doctors a good 15 hours before they were able to adequately manage Myra's pain after surgery. Then, they didn't feed her for almost 72 hours! Once we started feeding her, they found out 24 hours later that they had been using the wrong tubing for her G-tube. No wonder she had been extremely gassy and fussy those 24 hours! All that is finally worked out and she is taking close to half her feedings from a bottle already! And...I got to nurse her for the first time!! I think she does better on the breast than on the bottle, but doctors seem to think they know it all... In a few days I'll have her home and we can do what we think it best for her. We have a handful of appointments this week - speech therapist, ordering/training on her monitors, renal ultrasound to check out her high blood pressure, hearing test, car seat test, etc. - and after all those details are done...she'll be home!!

Thank you so much for your prayers. They are taking her off of her 2nd seizure medication today, so please pray no seizure show up. Pray her renal ultrasound doesn't show something that will keep her in the hospital longer and continue to pray for full healing of her brain. We are trusting that God is going to completely heal our little Myra. He's brought her from her death bed to where she is now, why should we doubt?

Friday, October 16, 2009

Myra's Successful Surgery

Daddy sang to Myra for 1.5 hours before surgery because she was so hungry...

Myra on her way to the OR

Well, Dr. Smith said Myra's nissen fundoplication surgery and g-tube surgery went by the book. Her scars will be significant, but we can easily feed our child without worry that she will aspirate into her lungs now. And after having two babies with reflux, there is an added benefit that she won't be spitting up all over us all the time!

There was concern she might not come off the vent right away, but we are thankful that Myra was off the vent before she even came back to her room! It was a long night and they doctors had some trouble keeping her pain managed. We changed her dosages two different times and finally, 15 hours after surgery, they were able to make her comfortable with a Fentanyl drip. Unfortunately, this is delaying when she will be able to eat again. Until she is off the drip, she can't eat. So, it will be close to 72 hours before she eats again after surgery. Either Mr. Prince or I will be at the hospital throughout the day today, and I'll be staying again tonight to comfort her hunger pains. Last night we were both able to rest quite a bit, so I should be ready if it should be another long night.

The clear "button" on top of the gauze is where we will attach tubing to feed her....hopefully for not very long....

Wednesday, October 14, 2009

More Miracles!!

Myra's surgery is scheduled for 5:30pm this evening. Please pray all goes well and she has a fast recovery. They are telling us Myra will be home in a week!!

We have other wonderful news to report too...Myra took 5cc from a bottle yesterday two different times!! I walked in around 7pm for my second visit of the day and a NICU doctor told me at her 6pm assessment she had the gag reflex they have been looking for and was sucking on a they tried 5cc in a bottle, and she took it! I gave her a bottle at 9pm and she took it
then, too. At 12am, 3am and 6am she was too tired to wake and try it (probably due to the seizure medications), but I know it's coming along and she'll be off the G-tube soon! What a great surprise of another miracle when we weren't expecting it! They will still be doing her surgery this evening to put in the G-tube and fix her severe reflux, mostly because she needs her reflux corrected before she goes home. If it was just the G-tube surgery, they said they would have no problem putting it off or not doing it, but with the reflux issues, they can't. So, we just plan to not use the G-tube very long...

I am seriously in awe of God's hand in all of this and am glad to share Myra's continuous story with all of you. Thank you so much for your prayers....He is hearing them and answering them daily! Our little miracle will soon be home and soon be whole...

Monday, October 12, 2009

Myra, Day 20

Well, Myra's G-tube surgery is planned for Wednesday evening. Unfortunately, she will be placed again on a ventilator and IV fluids and might take some time to wean off these and get back to where she is at right now. It looks as if we have at least another 1-2 weeks before we get her home. Princess Pea is bummed she won't be home by her 5th birthday. =) We are trying to be patient, but this next week will be hard to see her again where she was over a week ago....and we won't get to hold her for a while.

Please continue to pray for her suck/swallow/gag reflex to kick in, for her brain to heal and now for her surgery.

Romans 12:12 says, "Be joyful in hope, patient in affliction, faithful in prayer."

Saturday, October 10, 2009

Myra, Day 16

Well, we finally got a chance to sit down with the pediatric neurologist this afternoon to talk about the EEG and CAT scan results.

The EEG did show significant improvement from the last three. This was the first time they were able to do an EEG without sedation medication that alters results. I guess the anti-seizure meds can alter the results too, but with a "significant" improvement....I'm happy. She said compared to a "normal" brain, Myra's brain still shows mild to moderate suppression of brain waves, but that can only get better (and might be more without meds anyway). She will continue with her 3 anti-seizure meds when she comes home for now.

The CAT scan results were less helpful. The CAT scan showed that there were multiple areas of the brain affected by lack of oxygen. She said it was pretty global and that she did have many small brain bleeds that would eventually be absorbed back into her brain. She said one area where there was a lot of damage was in the back of the brain responsible for vision. BUT, she said that Myra is looking and focusing and doesn't seem to be affected even with that extent of damage to that area. How awesome! Exactly what I prayed for last night!! The plates on the top of her head are NOT fused together (another answered prayer), and they will continue to watch them and make sure her brain is growing well. So, basically she said it's a waiting game and that Paul and I would more likely tell her parts of Myra's brain that are affected as she develops, than her ever being able to explain them to us based on these tests. They will repeat a MRI when she is between 6 and 12 months and that will tell us better specific parts that seem to be affected still. Her brain has a lot of healing to do and can still make up for the damage that has been done. We will continue to pray that this damage does not affect her abilities at all. Though this report didn't give specifics, it leaves lots of room for God to do His work. And, probably having specifics at this point would only be negative anyway.

So, my next question was where we go from here. Myra is now off the cannula and doing well. They will get Dr. Smith to put in her G-tube in her stomach for her feedings and meds asap. After 48hrs they will test the G-tube and make sure all is working well and make sure Myra has recovered from the surgery, they will then take out her central line in her leg and then....she is coming HOME! In less than a week most likely!! We will have lots of training on her G-tube and meds and she will also be sent home with a heart rate/apnea monitor for a while. I can't believe she could be home 3 weeks from birth after they told us she probably wouldn't live! I was hoping she'd be home by Christmas! God has definitely surpassed my expectations!! And we are giving Him ALL the glory for Myra's recovery..and continued healing!!

Thank you, thank you, THANK YOU for all your prayers! God has been faithful and generous to our family in all this and we thank you for all your support and prayers and BELIEF in the power of our Awesome God! I have peace knowing Myra's healing is in the hands of her original Creator and knowing she'll be home soon so she can flourish and grow with her family.

Please, if you have been praying for Myra, leave the state you live in on my comments. We are keeping record of how many different areas prayers are coming from.

Monday, October 5, 2009

Myra is looking better!!

Myra has shown us her suck reflux and has now cried for us!!
Here is a photo of Day 12. She is down to 6lbs 8oz and has lost likely all of her water.

Saturday, October 3, 2009

Day 10 - By God's grace Myra continues to improve

Thank you for your prayers. God has been working a miracle and I wish I had time to share all that has happened the last ten days with Myra Annette.

Here she is on Sept 24th on the jet ventilator and full life support.

Background: My water broke before 10pm on Wed the 23rd and I had gross maconium. After monitoring Myra at the hospital for almost 3 hours, her heart rate dropped suddenly and we did an emergency c-section. She was born 3 days overdue on the 24th, 5lbs 15oz 20inches. We found out she had only a 2 vessel cord, not a 3 vessel like she should and that is why she was small. She may also have some kidney abnormalities from that, too. But, because she came out with Apgar scores of 0, 2 and 4, she had lack of oxygen for some time and they believe this has damaged her organs and brain significantly. We are now waiting to see what will recover.

Day 2, she started swelling

The Klan visited on Day 2 because we didn't know what the future held at that time.

Myra has moved from the jet ventilator to a conventional ventilator and now she is on the nasal cannula. She moved through these machines very quickly and continues to improve daily. Her organ systems are all now functioning. A great improvement from a week ago when no organ systems were functioning to their full capacity, or some not at all. She is still on 3 different anti-seizure medications, but she is off the blood pressure mediation, the sedation medication, her blood sugars and platelets have mostly regulated and she's off the warmer. She is continuing to get IV fluids and they will wean her off those as her intake of breastmilk is increased. Right now she's on 20cc and they want her to be taking in 60cc. They are doing it gradually, adding about 5cc daily. She is being fed through a tube right now and we aren't sure if she has a suck/swallow reflux still intact. Her third EEG is scheduled for Monday and we'll be meeting with a physical therapist this week. They also have an MRI scheduled for 2-4 weeks from now to see if there is any parts of the brain that have died from lack of oxygen. We have not had one day with setbacks since the first few very grave days, and we are finally out of the life threatening phase. Myra has had a long 10 days and a very rough start.

We are currently praying for compete healing of Myra's systems and brain. God took her lifeless body when she was born and has restored it thus far and we pray He continues until it's completion. We are praying specifically for her suck/swallow reflux to be restored soon, her tremors to go away completely, her EEG to show normal brain waves, and for her to cry and respond more to stimulation.

Day 3, Our first kisses - Myra was very swollen by this point and wasn't urinating

There are so many God stories tied in with her little life so far and we hope you will join us in prayer for her physical body and for her life to glorify the One True God! There is no way you can share Myra's story without including God's works.

Day 7, Myra has lost a lot of water but still 1lb more than her birth weight and she can open her eyes now (previous 4 pictures)

Day 9, Myra's feeding tube was taken out momentarily and we could see her whole little face and Mr. Prince and I were able to hold her for the first time

John 1:16 "From the fullness of his grace we have all received one blessing after another."

Luke 1:37 "For nothing is impossible with God."

Isaiah 29:14 "Therefore once more I will astound these people with wonder upon wonder."