Yesterday we had our weekly echocardiogram at the high risk doctor to check on Colston's heart. The surgery that we did two weeks ago is still technically a "successful" surgery because he does have better blood flow in the aortic valve, however, the scar tissue in Colston's left ventricle has built up quite a bit since last week and the left side hardly pumps at all. Colston officially has Hypoplastic Left Heart Syndrome.
We knew that the surgery only had a 25% chance of preventing this but it is still a hard pill to swallow. Colston is measuring about a week smaller than he should be which has the doctor thinking he will require the first open heart surgery within the first 48 hours of his life whereas some other babies don't need it until they are about 7-10 days old.
Justin and I have complete faith that Colston is already a fighter. He is so active too which makes me even more hopeful.
We are planning on delivering and have the surgeries at Sunrise Children's Hospital in Las Vegas and I have to be there a month before my due date and then we plan on being there for about another month after he's born, depending on how he recovers.
"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous hand."
- Isaiah 41:10
"Peace I leave with you; my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid."
- John 14:27
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
-Jeremiah 29:11
"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight."
-Proverbs 3:5-6
"Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'move from here to there', and it will move. Nothing will be impossible for you."
- Matthew 17:20
"But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind."
-James 1:6
"For God so loved the world that he gave his one and only son, that whoever believes in him shall not perish, but have eternal life."
-John 3:16
"Faith does not make things easy, it makes them possible."
-Luke 1:37
"He will cover you with his feathers, and under his wings you will find refuge."
-Psalm 91:4
"So we fix our eyes not on what is seen, but what is unseen, since what is seen is temporary, but what is unseen is eternal."
-2 Corinthians 4:18
It feels like Justin and I have been gone for a month! The last three weeks have been an absolute whirlwind and it's only the beginning.
We had another ultrasound and EKG yesterday morning to check on Colston and see how he was doing. We still have promising blood flow in the aortic valve but only time will tell if we are the 25% that prevented HLHS. Colston has a little bit of fluid around his heart but the doctor didn't seem too concerned about it. She said it should go away but we needed to have a follow up appointment in about a week. Thankfully all of our follow ups can be done at home.
Our next process is figuring out where we are going to deliver Colston. The doctors at UCSF, though they were amazing and said they would love to see us again, didn't think it was imperative that we deliver there. They said it was up to us and if we wanted to stay in state for insurance reasons they would completely understand.
Yay!! The doctor's say the surgery could not have gone any better. I have quite a few poke marks where they tried but couldn't get the right angle to Colston. They had to poke through my anterior placenta twice but thankfully only him once.
They got proper blood flow in the valve immediately. Now, we won't know if this prevented him from getting HLHS right away, it will take some time and we might not even know until he's born but this mama is feeling so good about everything right now.
I was an absolute wreck going in the the OR room. I was crying as I kissed Justin goodbye and could not stop shaking as the doctor gave me the epidural but thankfully the meds they pushed through my IV relaxed me immediately. There was a nurse talking to me throughout the whole procedure, constantly asking how I was doing and updating me on the progress. She was a life saver.
They will be doing another echocardiogram tomorrow to check on his heart and make sure the valve is still doing good. They will also be monitoring me a little more. Even though I didn't feel them, the nurse said I was having contractions and if I had more than 5 in an hour they would give me meds to stop them. Thankfully I only had 3 contractions.
I am so thankful and blessed that this went as good as it possibly could have. Colston still has a long road ahead of him and today was his first step on that road, but today he showed us just how strong he is.
Daddy and I love you little man.
Got the e-mail with our official OR start time for this Monday. To say I am nervous would be an extreme understatement.
The procedure shouldn't take very long and I don't have to be put under general anesthesia. The doctor's consider this a minimally invasive procedure and will give me an epidural that will numb me from my chest to my toes and I will be given a "cocktail" through my IV so that I will be loopy and not remember anything.
I will be in the hospital for 1-2 days after in recovery and luckily Justin gets to stay with me on a pull out bed in the room.
Cross your fingers that all goes well!
