Tuesday, March 30, 2010

Take Me Home, Country Roads - Tuesday, March 30, 2010

Two weeks ago tomorrow the Lord blessed us with the arrival of Parker Liam Britton. Within the two weeks since then, we've truly had our faith tested. There was a point where we almost lost Parker- on more than one occasion. The Lord gave us a MIRACLE in Parker- and for that, we will forever praise HIM.

Parker did great last night! He took full feeds all night- and did super again today! So two weeks after his birthday, we are finally going home! We hope to be discharged after rounds in the morning- hopefully by noon. We are so excited! I cannot wait for tomorrow to get here! We are so ready to take him home- introduce him to Spencer and Brooklyn- and then LOVE him forever. We have been SO blessed! I cried on the way back to the hotel tonight- I finally feel the 'release' of everything we've been through. The ups and downs of the last two weeks- and especially the 'unknown' has been so difficult. I told Jeff that two weeks ago tonight, we had no idea that our lives would change so drastically, so fast. Before then I took so much for granted- my family, friends, health, another day, etc. I don't want to ever do that again. I will always remember how quickly it can be taken away.

I would like to ask you to pray for other children in the NICU. Jeff and I met so many families of premature, or sick, babies. Some families have been there since December. A mom I met today said they plan for her daughter to be there until June. It is heart wrenching to have to leave your child in a hospital bed every night, knowing YOU should be the one to wake up in the middle of the night for your baby- not someone else. Jeff and I were only here for two weeks. I can't imagine staying for months. So please pray for these children and parents.

Again we thank you for your prayers! 'Prayers for Parker' started as a small blog to keep our family and a few friends updated. But it turned into a huge chain of prayers, love, support, and encouragement that helped us survive such a difficult time. Thank you...thank you...thank you!!!

So 'take me home, country roads, to the place I belong, 'west' Virginia, mountain momma, take me home, country roads.' :) 

PS- GO WVU in the Final Four!!! :)  Parker will certainly have on his blue and gold!

Monday, March 29, 2010

Our hungry, hungry hippo! - Monday, March 29, 2010

Parker made great progress today! He was much more awake and super hungry. He strictly breast fed all day and will eat from only a bottle tonight- the NG tube will not be used. If he still gains weight tomorrow then I feel we should be discharged on Wednesday. If he doesn't gain weight, or loses weight, then I expect to be here for a few more days.

We're sorry for the short post- we'll update again tomorrow. As always, thanks for your prayers, love and support!

Sunday, March 28, 2010

Our Lil' Sleepyhead - Sunday, March 28, 2010

We're sorry we haven't updated the blog in a few days. We got our hopes up that we would be able to take Parker back to Roanoke on Friday. So we checked out of our apartment and waited at the hospital. Our insurance approved the hospitalization at Roanoke Memorial- but didn't approve the transport. So in Charlottesville we stayed. We've been in a hotel since then- hoping each day that we'll be discharged. Parker continues to do well- but he hasn't met his requirement for daily feeds. He's currently on a medication that makes him sleep almost 24 hours a day- therefore unable to eat. The doctors finally decided to lower his dose of medication by 20%. Hopefully this will help Parker awake more for feedings. Today was the first day of a lower dose and I got him to take three feedings by bottle (I can't nurse him because he gets too comfortable and falls asleep!). So once his feeding improves, and the NG tube is removed, then we will be discharged....and not to Roanoke- but to go HOME!

We will keep you posted on our status. Hopefully we'll be home by the end of this week- I'm actually hoping to be discharged on Wednesday. Right now it depends on Mr. Parker. When he decides to take full feeds by bottle, then we're out of here!!! :)

During rounds yesterday we spoke with a doctor who hadn't been working when Parker was admitted. She said that she had heard about the case and, "...if I'm not working and I later hear about a case, then it's bad! For a baby to be on milronone, dopamine, dobutamine, fentaynal, TPN, lipids, etc. last week- and to be this healthy today is quite remarkable." Thanks again for your prayers, love and support. With your help the Lord gave us a miracle- and we couldn't be more grateful!

Thursday, March 25, 2010

By the Grace of God - Thursday, March 25, 2010

We just got back from our nightly visit with Parker. It is truly by the grace of God that we are able to say that. This time last week we didn't even know if he would survive. I don't think Jeff and I have fully processed what we've been through- it's like we've been on auto-pilot. But the one thing I do know is I will never look at life the same.

-Anytime I see a medic helicopter, I will say a prayer for their passenger. I now know what it feels like to be the mother of someone in that helicopter.
-When someone cuts me off in traffic, I will try to be more forgiving. I will remember Jeff trying to quickly get to Parker at UVA.
-When I work with doctors and nurses, I will be thankful for all their knowledge and skill. They work so hard and know so much- and saved my son's life.
-I won't use words like horrific or devastating. I now truly know the meaning of these words.
-I will pray daily for parents of infants in the NICU. I will remember the pain of spending the day at the hospital just wishing I could take Parker home.
-When someone is in pain, I will say a kind word. I now know what it is like to be lifted up by words of encouragement.
-I will praise God that I have been given a second chance to have Parker in my life. I will remember how precious life is- and I will never take my family for granted again.

Please know that Jeff and I cannot express our gratitude enough for the love and support you've shown. We'd also like to thank all the doctors, nurses and staff at UVA Children's Hospital. They gave our son the best medical care possible- and showed us compassion and support through every heart wrenching day. We honestly cannot thank them enough.

Thank you again for every prayer for Parker. He was in my arms tonight because of your prayers...and most importantly, by the Grace of God


Jeff taught Spencer how to use the water fountain today!

Our Miracle - Thursday, March 25, 2010

I only have a few seconds but wanted to quickly update you on Parker's MRI results. The exact words of the neurologist were, "Although there are a few small hits- they are extremely small. If I had to use the word mild, I would make sure it was with a lower case 'm'. I don't expect him to have any neurological problems from this event at all. Mr. Parker is going to be just fine."

The only issue that keeps Parker in the hospital is his lack of nutrition. He isn't taking in the amount of milk that he needs- thus the NG tube remains. Since this isn't a major issue we may be able to transfer to Roanoke. What a blessing this would be!

This truly shows the power of pray. Thank you all for seeing us through this difficult time. Saying thank you just doesn't seem like enough.

Wednesday, March 24, 2010

You Raise Me Up - Wednesday, March 24, 2010

Today has been a very long and draining day. We still don't have any news from Parker's MRI- and we're both exhausted so this entry will be rather short. We've spent most of the day and night at the hospital. Parker made improvements today- getting the IV out of his belly button and moving to a bassinet (from a radiator bed). However he is not eating as much as they would like so he had to have a NG tube inserted (this is a line that goes in his nose directly to his stomach). This will allow them to supplement his nutrition- whatever breast milk he does not take by nursing or through a bottle will be supplemented. The sooner he gets his strength up, the sooner we can come home!

Thanks again for all of your kind words and support. Jeff and I are truly amazed at how many people care. We are grateful to have such wonderful family and friends in our life! Thank you keeping us positive and encouraged. It is because of YOU that our load has been made a little lighter. 

Happy 1st week Parker! We're so blessed to have you! 

Tuesday, March 23, 2010

Mr. Blue Eyes - Tuesday, March 23, 2010

Today was a BIG day! The morning started with rounds where the neonatologist team decided that Parker could come off of the EEG (a cap full of wires taped to his scalp that monitors his brain). They also decided Parker could begin breastfeeding since he took a bottle last night and did really well. He had his eyes open while the team was there and moved around like crazy. Once they left, I breast fed Parker and he took to it like a champ! Which was a big deal because they were worried about his sucking reflex. He then became 'milk drunk' as our friend Gloria likes to say (the lactation specialist at Lewis Gale Medical Center). It didn't take Parker and I long to create that bond that we've both desperately needed.

After lunch the occupational and physical therapists evaluated Parker. His report was mostly good- except for some slight tremors that have occurred. Although these tremors could be related to certain medications, over stimulation, or results from his traumatic event- they won't really know until they have the results of the MRI. But the therapist reminded me of all the positive behaviors that Parker exhibited and no matter what the MRI shows, they will treat him with early intervention regardless. Jeff and I were both reassured by this since we'll have home visits to keep Parker developmentally on track. We joked with each other that we wish we had the same for Spencer- who knows if he's on the right track developmentally- and Jeff said, "Spencer's on his own track". :)

The day ended with Parker being moved to a 'step down unit' inside of the NICU. This is a less critical unit where there is more space and less noise. Jeff and I spent the evening rocking Parker while he slept. The hardest part was leaving him. Every minute I want to rush over there to hold and love him. But Jeff reminded me that I'm still recovering and haven't stopped since the day after I gave birth. I also know that I need to save my energy since I will have my hands full with lil man Spencer and sweet Parker. But mark my words- you won't hear me complain! All I've prayed for is to be able to raise my two precious boys- and my prayers have been answered.

We continue to ask for your prayers for tomorrow- Parker will have his MRI. We ask the Lord to bless his brain and continued success in his improvement. Thanks again for all your love and support.

PS- Thanks to the friends of my sister who made the prayer blanket for Parker. I used the blanket to snuggle with him this afternoon. I know it will bring great blessings.


Monday, March 22, 2010

Open Arms - Monday, March 22, 2010

Our prayers, along with your help, are being answered. Parker continues to do well. The dopamine (blood pressure medicine) has fully been discontinued- and this evening they discontinued the Milronone (medicine for his heart). His heart function continues to do well and he's been awake a few times today. I had the privilege of holding him tonight. This is the first time I've held him since right after birth (which was only for a second). He nuzzled into my chest and seemed so comfortable. I look forward to tomorrow just so I can hold him again.

We ask for your prayers for Parker's MRI on Wednesday. We need prayers for a clear MRI and continued improvement. We hope to have some type of result by Thursday evening (at the latest). We are amazed at how many people are praying for Parker. The Lord hears all of us- and I know He will answer those prayers.

On a lighter note- Jeff and I were recognized today at the hospital by a complete stranger who had seen our blog. Turns out she is a nursing student at UVA who is a friend of a friend of Jeff's in Rhode Island! It's such a small world- or maybe a very big one where Parker's becoming quite famous! Jeff and I know that God is truly at work when we are recognized by someone who had only seen pictures of us! :) Thank you to Brittany for your kind words and offers of support. You really made our day!

Happy 22 months Spencer! We love and miss you!
Mommy & Daddy

Sunday, March 21, 2010

From a Fathers Eyes...

Today I held Parker for the first time while the NICU nurse changed out his bed linen and switched over a few of his lines. I cannot begin to express the emotions that I experienced during the short period of time that it took for his nurse to complete her tasks. It will definitely be etched in my memory as one of the most emotional moments of my life. It has been four LONG days since Parker was wisked from the delivery suite to the nursery then to a Helicopter for his flight to UVA. The only contact I have had up to this point was holding his tiny hand while feeling completely helpless by his side. Today was also special for me as he opened his eyes for a brief moment and we looked into each others eyes and created that father -son bond that I have so desperately needed. I have up to this point withheld most of my emotion in order to stay strong for my wife and family. It was today that allowed me to let my guard down slightly and decompress most of my anxiety and emotion which has taken much of the weight from my shoulders. I know this is just the beginning to a long road ahead but each day seems to be getting slightly easier for me. I dream of the day that I can take Parker home to hug and kiss him at will as I do with Spencer. Parker will get the same daddy to son talk that I have given Spencer which is that I will never get tired of telling him I love him even if it embarasses him in front of his buddies ! Each day continues to bring a new challange but also a new milestone and victory......

Please excuse my grammar and spelling as I am exhausted.

Family Day - Sunday, March 21, 2010

Our parents visited today- with Spencer! We had the best day! We really needed to be with him. It brought both of our spirits up. Hopefully we'll be home with him soon.

Parker continues to make slight improvements. He opened his eyes for a moment today- and even smiled a few times. We spoke with the neurologist this morning and the concern seems to be the extent to which his brain was injured. We won't really know any answers until the MRI- which is scheduled for Wednesday. Until then, please pray for Parker's brain- for there not to have been permanent damage done to his brain, and if so, that he may recover. We truly need your prayers by Wednesday.


Saturday, March 20, 2010

Every breath you take - Saturday, March 20, 2010

We got to see Parker's face today! He was taken off the ventilator around 2:00 this afternoon. He is still somewhat sedated- but he's trying to open his eyes. We feel good about his cardiac function progress. However a small setback came this evening when Parker may have had another slight seizure. The neurologist checked him and thought it was very borderline. Hopefully we will know more in the morning.

What we know so far...
~ Parker is extubated and is doing well from a pulmonary standpoint.
~ Cardiac function seems to be stable and possibly improving.(Mean arterial pressure averaging 40)
~ Parker may be having seizures. (EEG evaluation is pending)
~ Phenobarbitol level is 27 mcg, Neurology resident wants a therapeutic level of 30
~ Fentanyl was discontinued early AM.
~ Color and cap refill look good.

We are blessed to have our family visit tomorrow- WITH Spencer! We have missed him so much and cannot wait to spend the day with him. We look forward to the day we can have our entire family together- Daddy, Mommy, Spencer, Parker and Brooklyn. Please continue to pray that day will come soon!

Friday, March 19, 2010

Baby steps - Friday, March 19, 2010

Parker is making small improvements. We spoke with both the cardiologist and neonatologist today.They seem to be leaning towards some type of asphyxiation during delivery- however they are running more tests and continue to monitor his progress for 'clues' of what happened.

After the v-tach yesterday, Parker had a small seizure. He has been placed on anti-seizure medication to lessen the likelihood of another one. He is still on the ventilator- mostly to give his body a rest from such a life threatening birthday. The MRI has been postponed until next week- hopefully Tuesday or Wednesday.

We want to thank everyone who has touched Parker's life- especially the staff of UVA and Lewis Gale Medical Center. All our doctors and nurses at Lewis Gale have been so gracious and supportive. Jeff and I truly thank you. We've also had such strong support from family and friends. We appreciate all your kind words, love and prayers. We ask that you continue to keep Parker in your thoughts and prayers. With your help, we know that we are watching a miracle in progress.

First email about Parker - Thursday, March 18, 2010

Below is a copy of an email Jeff sent to his co-workers today about the current condition of our new baby boy, Parker. I'm sorry that I have to communicate through Jeff- but I'm just not up to making phone calls yet. We just got back from visiting Parker and he continues to make improvements tonight. Although this is truly the hardest experience of my life, I continue to live in faith and know the Lord will provide. I am also blessed with the love and support of my husband. Jeff has been the rock holding our tiny family together. I certainly could not have made it without him. Please continue to keep us in your thoughts and prayers. We hope to start a blog to keep everyone up to date. Until then, thank you again for your love and support.

Jen
PS- I have attached a picture of Parker. It was taken before his small set back today- but he's still as gorgeous as ever!
*********************************
All,
I have a few minutes of downtime and wanted to send a quick update regarding Parker. It has been a very draining few days, both mentally and physically, but Jennifer and I are standing tall and strong. As many of you know Parker was born 12:58 pm Wednesday weighing 6 lbs 15oz. Initially all looked ok except for his lack of a cry. As the next few minutes passed I quickly realized something was different as he became quite pale with O2 SATS in the 70-80 range on blow-by O2. He was then taken to the nursery where he was assessed in detail. My first impression and the pediatricians was that he obviously had some sort of congenital heart defect so the Roanoke Mem transport team was requested. Upon their arrival Parker continued to decompensate. The plan was to take him downtown and do an echo. I personally thought this was not an option since they do not have pediatric cardiac surgery- so I requested air transport to UVA which turned out to be a very wise decision. Before his departure I found out that he was critically acidotic which made me glad I insisted on air rather than ground transport. When Parker arrived at UVA he seemed to stabilize after a bicarb infusion and intubation. I arrived approx an hour after he did and was greeted by John Quigley, which was a very welcome site! John was extremely helpful expediting my direction to the NICU and certainly streamlined the process to get signed into the hospital. The resident at UVA basically stated that my persistence to use air transport may have saved my child’s life in lieu of his acidosis (6.84 pH). I stayed with him late into the night but quickly accepted that my exhaustion, after being awake for 34 hrs, was not going to help Parker. I was impressed to see that not only had John waited for me but Jeff Snyder had also arrived to ck in on Parker. So the guys helped me find a place to stay and get cleaned up. I returned to Parker around 9am this morning to find the he had extubated himself and was actually doing much better than the night before, which left a HUGE smile on my face. So I went to grab a bite to eat and a cup of caffeine. When I returned to the NICU I was shocked to find Parker surrounded by approx 10 staff members which made my heart drop. The chief resident came over to me to inform me that Parker had a pulseless VT arrest that they were able to correct fairly quickly but was none the less alarming. The next hour or so was filled with both fear and anxiety but lucky for me, Jessica Kiernan arrived to offer her support which I will never be able to express how comforting and grateful I was for this gesture. So as of right now Parker is doing better and seems to be stabile for all that he has been through but remains critical at this point.

What I know so far….
~ All heart structures are present and accounted for.
~ His pH is trending toward normal
~ He has pulmonary hypertension (But is better than yesterday)
~ Right and Left Ventricles appear to be contracting weakly (Also shows improvement from yesterday)
~ Re-Intubated but is on minimal settings.
~ He has a Patent ductus arteriosus (seems to be closing)

On Deck for tonight and tomorrow….
~ 12 Hr EEG
~ Follow up echo
~ MRI of the brain

Jennifer was discharged today from Lewis Gale and was brought to UVA by her sister to be with us. She is still recovering but very relieved to be here. Spencer is back in Salem with my mom and dad and is rambunctious as usual. I certainly miss him and call to hear his voice a few times a day.

Unfortunately at this time the Dr’s do not have a clue what is going on with Parker to create the issues he continues to overcome. I will try to keep you all up to date with his condition as the hours seem to be creeping by slowly. All we ask is that you not worry about us but instead focus that energy in Parker's direction as he needs all the thoughts and prayers he can get.

Jennifer and I certainly will never be able to express our gratitude for all your kind words and thoughts….. And personally I cannot tell you how great it feels to have friends and co workers like all of you who have shared your thoughts , prayers and comfort for myself and my family.

Jeff Britton
Sales Representative
Cardiac Rhythm Management Division