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!

Just the beginning

Hello everyone! I decided to create this blog to not only document our journey but to hopefully reach out to other families with heart babies. 

             My husband and I are 26 weeks pregnant with our first child. On the morning of April 8, the morning we were leaving for our honeymoon, we had our 22 week anatomy scan ultrasound. The doctor came in with devastating news. There was something wrong with the left side of our little one’s heart. We were referred to a high risk perinatologist in Reno to be given more definitive answers.

                We decided that we would still go on our honeymoon and enjoy it the best we could.  We thought spending our honeymoon with a little worry and lot of prayers was a much better choice than in mourning. Up until this point we had not wanted to know the gender of our baby and wanted it to be a surprise at birth. After a little thought, we wanted to know who we were praying for.

We are praying for our son, Colston James Krische.

                On April 16, we had our appointment with the perinatologist and pediatric cardiologist. After an hour long fetal echocardiogram we were ushered into a conference room and given the results.

                They found that our son has a very poor functioning left ventricle and his aortic valve is showing very little blood flow. Lots of medical terms were thrown at us that day and they could not give us a definitive diagnosis but basically it came down to needing to strengthen the left ventricle and widen the aortic valve for proper blood flow. The pediatric cardiologist immediately began trying to get in touch with his colleagues in Las Vegas to see if we were candidates for in-utero intervention. After about three days of trying to get the team of doctors together, he decided he didn’t want to wait any longer and began talking with other colleagues in San Francisco at UCSF. UCSF called us almost immediately.

                We spent two days at UCSF running more ultrasounds and echocardiograms and even had a fetal MRI on his brain. We were ushered into yet again another conference room but this time with the surgeon, a social worker, a nurse and another doctor.

                We were given the official diagnosis of Severe Critical Aortic Stenosis with evolving Hypoplastic Left Heart Syndrome (HLHS). 

                This condition is very rare. 1 in 10,000 babies are born with it and only 1 in 10 of those babies are a candidate for intervention in utero. We just so happen to be a candidate.

                The surgeons at UCSF believe that expanding a balloon catheter in the aortic valve to open it up will not only generate better and more sufficient blood flow, but will help strengthen the left ventricle with the hopes of preventing HLHS.

                The chances of this working are slim. 25% to be exact and three out of four babies that have this intervention are still born with HLHS. We feel like we have to give our little man this slim chance.

                So what will happen to Colston if this doesn’t work?

If Colston still develops HLHS by the time he is born, there are three heart surgeries that will be needed. The first surgery is done the first week of life, the second around 4-6 months, and the third around age 4-5.  The doctors say that to make it to age 5 with this diagnosis is a feat in itself due to the nature of the surgeries on the heart. Eventually a heart transplant may be needed, however, we don’t know when that will be. It could be when Colston is 5 or 50 or possibly never.

                This procedure is technically experimental. We agreed to be a part of a research study with the hopes of helping another child with the same diagnosis in the future.