It's getting real

Today I started to pack my suitcase and hospital bag. As I was packing stuff for Colston it really hit me, he is going to be here in just a couple short weeks. I doubt they would do the c-section on a Saturday but part of me is secretly hoping he is born on 7/11 so that he will always get a free slurpee on his birthday. ;)

I am still doing research on my own as we are running on limited information until our next doctors appointment, but I wanted to provide you guys with more information regarding the Hybrid Stage 1 procedure that we will be having. 

The Hybrid procedure is done in the "Hybrid Suite". This specialized suite is a combined operating room and cardiac catheterization room. The baby does not require heart-lung bypass for the first stage. It can be used on smaller weight infants and for families who request Alternative Non-Blood Medical Management. Stage 1 usually is done within the first week of life.

The Hybrid Stage I consists of:

Placement of bands around the right and left pulmonary arteries. This restricts blood flow to the pulmonary arteries, thereby balancing the circulation (to the lungs and the body). This also reduces the extra blood flow to the lungs.

Stenting of the PDA (pulmonary ductus arteriosus) keeps the PDA open and maintains the connection to the aorta and the body’s circulation.

There must be enough of a connection between the top two chambers of the heart (the atria) to provide open blood flow and mixing of the oxygen-rich and oxygen-poor blood. This can be done through a balloon atrial septostomy. In this procedure a small tube (catheter) is passed across the septum between the two atria. Then a balloon on the end of the catheter is inflated and pulled back across the septum to enlarge the opening.

There is also a video on youtube that Justin and I watched that is of the procedure. Fair warning though, it is not for the faint of heart. It is very graphic. 

https://www.youtube.com/watch?v=8VPhqo5ucpo

He's coming early!

Justin and I had an appointment in Las Vegas yesterday to meet with the doctor that will be delivering Colston and the surgeon that will be doing his open heart procedures. They were both very nice and informative and we are so blessed to be in such good hands. 

Dr. Wold, the doctor that will be bringing our little man into this world, informed us that Colston is a small baby. We told him we've known this for a while and that we've always been told he was measuring about a week behind but that it was nothing to be concerned about. 

Until now. 

Colston is now measuring about two weeks behind and only weighs three pounds, they are concerned he won't gain much more weight before birth. Normally, babies with severe heart conditions like Colston's need to be kept baking inside mama as long as possible. It's simple math, the bigger the baby-the better to do surgery. From what it's looking like right now, Colston is not going to be big enough or strong enough for a natural birth, let alone for the first open heart surgery.  Dr. Wold believes that a a natural birth will put too much stress on Colston and his heart. He also believes that the longer he is in the womb and not growing, the greater the chances are for still birth, thus the need for a C-section.  

Colston will be here in just four short weeks. We are so excited we get to meet him sooner but are still beyond terrified at what he has to go through. Dr. Wold won't let me go past 37 weeks which puts us at July 17 as the latest date he will be here. We will have an official date scheduled soon.

Since Colston most likely won't be big enough for the Norwood procedure (the first of the three open heart procedures), he will have a "temporary" heart procedure, also known as the Hybrid procedure, done after birth to sustain his heart until he is strong enough to do the Norwood. He will have a couple different shunts put in to help with blood flow and keep the valves open. It all depends on Colston how long that will be. 

In the mean time, I will be trying like crazy to fatten him up and make him into a little butterball!  

Thank you everyone for the continued prayers. It means more than you know. 

Unfortunate News

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.

Helpful Verses

"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

Home Sweet Home

         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. 

        

Surgery went great!

          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.

Surgery in 2 days

           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!