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 busy...to 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.

What am I thankful for?

God took my baby from this....


To THIS.....


So Thankful.....

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."

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.... =)

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?

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....

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 pacifier......so 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...