Monday, April 30, 2012

Monday update

What a big day we have had! Kirby's chest was closed today! Praise the Lord. She has had an open chest since her surgery 2 weeks ago. This is longer than the norm but with her being put on the ECMO machine and her swelling, it has taken longer. Josh and I are getting a good lesson in patience and trusting God completely. Kirby has done great so far and we know she will continue to do so. She is a fighter for took 2 doses of the paralytic medicine to knock her out for surgery....after one dose she just kept looking around like it was nothing. Josh said she gets it from me but I am not too sure. Ha! Thank you for your continued thoughts and prayers. We miss everyone back home so much but know we are now one huge step closer to being home. We have a long way to go but our prayers continue to be for a speedy recovery that will amaze the doctors. Our next steps will be getting off the ventilator, umbilical lines out and she still has had no food :(.....and of course getting to hold our baby girl (we have only held her twice since birth). The word is that feeding can be difficult with these babies since they have not had to use there suck/swallow reflex yet. We pray this goes smoothly with no complications. They will begin with very small amounts through her NG tube and then progress to "real" feeding. We love you all and thank you for your thoughts and prayers. We definitely feel them!

Sunday, April 29, 2012

Sunday April 29, 2012

Kirby has had several good days and a good night last night. They were able to take the ventilator rate down and the oxygen level down more last night. Praise God. They are doing another partial close as we speak. The next step will be to completely close her chest. Thank you Lord for answered prayers and progress.

Saturday, April 28, 2012

Saturday April 28, 2012

Kirby has had a good week since the last update. They decided to partially close her chest yesterday to see how she responded. Her vitals remained stable and she had a good night. She is definitely proving to be a fighter! They are thinking they may try to close her chest completely this weekend or early this coming week. We have a long way to go but we are making progress. Next steps: ventilator tube out, chest tube out, umbilical lines out, learn to feed/eat, etc. Thanks for your continued thoughts and prayers.

Tuesday, April 24, 2012

Tuesday April 24, 2012

Well yesterday was a great day! We rejoice that they took Kirby off the ECMO machine yesterday which was earlier than expected. It proved to be yet another roller coaster of a day. Once off the ECMO, her vitals were unstable for a period of time. This was another surgical procedure in which lots of meds were given causing some of the instability. As the day and night went on, her vitals leveled off and she maintained her stability through the night and so far this morning. They want her to continue to rest and heal from this procedure with the next step being to close her chest....yet another surgical procedure. In order for this to happen, her vitals have to continue to stay stable and they will continue working her off the meds. Pray for continued healing and no leaking of her valve. God continues to meet us where we are and give us comfort and peace each day. Thanks for your continued prayers.

Monday, April 23, 2012

Monday April 23, 2012

 Kirby had a good, stable weekend. She is recovering very steadily and regaining her normal functions. They are going to try her off the ECMO machine today to see how she responds. If she responds well enough, they want to take her off it completely Tuesday. That will be great!! It's awesome to see all of our prayers being answered day by day. God is working in a mighty way. Kirby is opening her eyes and very aware of her parents around her :).  The battle is not over yet, we need to continue to pray for the valves in her heart to stop leaking. This will determine when she can come off the ECMO. This leak problem is also critical to her coming home. So, lets all speak life and healing over the heart valve and command it to stop leaking!
Thank you all for your continued prayers and support! GOD is Good and Faithful!

Pre- Surgery Pics:

Friday, April 20, 2012

Kirby update

What a rollercoaster ride the past few days have been......but praise God there is now progress and stability! Since the last update, Kirby came out of her 13 hour surgery (Norwood Procedure) on Tuesday night around 10:00. There were some complications after the surgery was completed with bleeding and the inability to get her blood to clot. This is the reason for the lengthy surgery. In a nutshell, the Norwood Procedure is the rerouting or the veins and arteries to the right side of the heart. Kirby's left side was too small to use, therefore, the this was a necessary procedure. She will function one only a single ventricle heart. This is a brief summary without going into the exacts of everything they did. Following surgery and throughout the night, Kirby's vitals were strong and positive. Following this procedure, the doctors leave the chest open with only a thin covering over the chest.....yes this does mean we can actually see her heart beating. They do this to allow easy access in case of emergency and to allow swelling to go down.

Wednesday morning, Kirby's oxygen level was decreasing and blood pressure was unstable. The doctor decided to open the covering over the chest to see what was causing this problem. He found that the valve in the heart was leaving significantly due to dialation of the heart. This was likely due to the body being over-worked. The doctor made the decision to put Kirby on the ECMO machine to let her body rest and heal. The ECMO machine runs the heart and the lungs for her. Due to the leakin gof the valve and other factors, Kirby was retaining lots of fluids causing her to be very swollen. This whole process caused for a scary day for us as parents seeing her swollen and puffy, along with her open chest. The ups and downs are tiring and it can easy to become weary.

Wednesday night was a restful night for Kirby and she maintained her stability and vitals. Thursday morning we received positive news of some decreasing fluids,  the ability to decrease some of her medications for blood pressure and a decrease in the leaking of the valve. She maintained her stability throughout the day making for a much calmer day for us as well. We have had many visitors including Paster Tony, who joined with us in praying over Kirby in the ICU and with the family.

As of this morning, Kirby continues to remain stable with continual progress being made. Kirby has miles to go but we are getting there an inch at a time. Thank you Lord for watching over our baby girl!

We are so thankful for the many prayers going up for us not only all of the US but also worldwide. We have been humbled and overwhelmed by God's grace, goodness, faithfullness, strength, provision and more over the last weeks. It is comforting to know we can give it to God and rest in his goodness.

Tuesday, April 17, 2012


First of all let me apologize for not updating. It has been a whirlwind of a week. We have spent many hours sitting by Kirby's bedside, hours in the waiting rooms, moved from place to place, etc. We are now settled in a home  in Mt. Pleasant of some dear friends in Spartanburg. We have been blessed beyond measure with calls, texts, visitors, gifts, etc. God is shown us peace beyond what we deserve. We are tired but trying to stay strong through this journey.

Kirby went into surgery this morning around 8:30 (4/17/2012). This was probably the hardest thing we have ever had to face. Kirby is still in surgery as we speak at 8:00 pm.....nearly 12 hours. We have received updates hourly from the operating room. She is doing well, her heart is pumping well and her vitals are good. We are now just waiting for the bleeding to stop.....which seems to be a long process. We were able to hold her this morning before surgery. God has shown so many signs of things that were blessings to us and others. I could tell story after story of how God has worked though us and this situation. We love Kirby more than I could describe and are anxious to see her well! Continue to lift her up in your prayers as we approach this road to recovery. God is good and continues to be in control! We love you all!

I am uploading some new pictures so I will try to post those when they upload...maybe tomorrow.

Tuesday, April 10, 2012

She's Here!!!!

Kirby is here and she is BEAUTIFUL! She was born at 6:06 am on April 10th weighing in at 6lbs 6oz and 18 1/2 inches long. Upon her delivery she was taken to be assessed for period of time and Josh got to go with her. I was able to see her through the incubator as they took her to the Pedcatric Cardiology Intensive Care Unit (PCICU). Once I was settled in my new room, we were able to go visit her. There we talked briefly with the nurses and got to see Kirby's sweet face. We are not able to hold her at this point and not sure when we will, but we know God is working a miracle in her life. This has been the most difficult thing for us. It's not easy to just look but she is beautiful to look at.  Later we were able to go visit again and see the cardiologist. As of right now, they are basically seeing what we have been told the past few months. They will do continuous monitoring over the next few days and I will update. God is good and will heal baby Kirby. Thanks for your thoughts and prayers.

Our first family photo

Monday, April 9, 2012

Playing the waiting game

Just wanted to let everyone know we are still waiting but progressing. This morning upon arrival they said a day and a half to 2 days for this process to take place (not what we were expecting to hear)....however....I am moving along and my water broke on its own at 3:30. Estimating her arrival during the night. We are tired from no sleep last night but soooo ready. Can't wait to meet baby Kirby!

Sunday, April 8, 2012

It's finally here!

Well.....the day is almost here. We are beyond excited to meet our sweet baby girl! We have been blessed beyond what we could have ever imagined. We have definitely seen how God will take care of his children. Thank you for all your thoughts, prayers, generous gifts, encouraging words and support. I will keep everyone updated as we welcome Kirby into the world. How great is our God! Let the fun begin at 7am in the morning!

Her room is all ready for her arrival home....