Today has been a more encouraging day. When we arrived at the hospital, Victoria’s cardiologist here at UAB (Robb Romp) was doing a heart echo. Once he was done, we sat down and talked with him. He let us know that Victoria was stable during the night, which was a huge relief. He said that he was seeing a large space in the middle of the heart where the septum should be. We’ve known this for some time, so it was no surprise. He also saw the mitral valve and bi-cuspid valve defects. We’ve also been informed of this for some time. He talked through the surgical procedure to repair the defects. He was hopeful and seemed positive. He did say that there was concern with one of her valves when it came to leakage, even after the surgery is done. The surgeons are being made aware of this so they can pay special attention to that particular valve when operating.
We also met with her physician, Dr. Toms. He said they were treating Victoria with antibiotics just in case there was any infection. They have done several cultures, which they will not have results of until another day or so, to tell if there is, in fact, infection. Regardless, she is being treated as if she does have some infection, even if there is none.
At this point, they are trying to “tune her up” for surgery. Dr. Toms seems hopeful that she will have surgery on Tuesday at some point. Of course, this could change depending on if a more severe case comes in that needs more immediate attention over her case. Hopefully, that will not happen and she can get her repair done on Tuesday.
Mark and I will be taking a few pictures of her tonight to put up on the blog so you can see what she looks like. We feel it’s very important for you to see where she is and how she is looking these days. If you are like me, you’ll be alarmed at the tubes and wires you see. And, if you are like me … you might cry. But, I’m thankful for those little arm holes on the sides of her bed that allow me to rub her little arms and legs and touch her sweet face. We can talk to her through those holes and Mark even sang “Daddy Loves Victoria” to her today. It was sweet.
Thanks again for all of your prayers. We cannot begin to tell you how much they mean to us.
Last night when we arrived at UAB, when went to see Victoria in her unit. They had tried to start weening her off of some of the oxygen. Mark noticed when we actually first walked in to see Victoria that her oxygen level was in the upper 60’s. Mark mentioned that her level was low and the nurse agreed and increased it. At Women and Children’s Hospital, they wanted her oxygen level to be kept in the 80’s. Her doctor arrived and updated us on her condition. He explained that they were in the “weening process” and Heather and I noticed that he turned down her oxygen support to 21%. About two minutes later, Victoria started breathing very quickly and the alarms started to sound. Several nurses and the doctor quickly surrounded her to address Victoria’s problem. I saw the doctor and male nurse use their stethascope to listen for her heart beating. I could see them shake their head “no” a few times, which I was pretty sure meant that there was no heart beat. I could be wrong, but I felt pretty sure that is what was going on. The doctor increased her oxygen and did a few other things on the piece of machinery she was hooked up to and eventually, her color came back and she became stable. Mark and I prayed for her during this entire episode, but looked at each other with blank stares. I knew we were both thinking that this may be it. We may lose our little 8-week old baby right now. The doctor and nurse were so sorry that we had to witness those events.
Thankfully, we did not receive any calls overnight of her having any other episodes like that. We are praying that she remains stable. We are leaving now to get a little breakfast and will head over to the hospital.
Please pray today for little Victoria to remain stable. Pray the Lord gives Dr. Romp guidance concerning her case. Pray that the Lord does something amazing in her. Pray that the heart surgery is able to happen before the weekend.
We love you all and thank you for your prayers and support! You have been a true blessing to us and our family.
As we drive to Birmingham tonight, our hearts feel so many mixed emotions. We feel so blessed that God saw fit for Victoria to have an appointment with the geneticist today and that of all people, the doctor’s resident noticed her coloring. If it weren’t for her insight, we wouldn’t have known that she needed any immediate attention. We feel blessed that our cardiologist’s office worked so quickly to get Victoria on oxygen and transported by ambulance to Women and Children’s Hospital for treatment to stabilize her. We feel blessed to be offered so much help from friends and family in so many amazing ways. We feel blessed that our little baby is on a jet to UAB to be cared for by some of the most skilled physicians and nurses in the country. Even in the midst of such an uncertain situation … we feel blessed.
At the same time we feel the blessings of God, we are sad at seeing our tiny little baby with tubes and wires hooked up to her beautiful body marring its appearance. It’s a breaking experience to see her helpless body lying limp in the baby unit being attended to by so many people. You know then that there is nothing that you are in control of, but it’s all in the hands of the Lord. That doesn’t mean that we don’t break down every time we see her in this state. It means that in the midst of our breakdowns, we receive an unexplainable comfort and peace from the Lord. We know there is nothing that we can physically do for her, but there is everything that the Lord can do for her. He is her ultimate Father looking over her and loving on her more than we ever could. As much as we want to protect and provide what she needs, Father God is her ultimate protector and provider. We are thankful for such a wonderful Father.
On a more detailed note …
Victoria arrived at UAB around 9:30pm tonight in stable condition. She is on a ventilator to relieve the stress on her heart. We will arrive there probably around midnight or a little later. Our wonderful Pastor Ed and Pastor Scott are accompanying us on our trip and we might possibly have family join us there. At this point we do not have definite information on her surgery arrangements. We’ve been told her surgery could be as soon as Thursday or Friday if she is stable enough for the procedure. If they feel she needs time to rest in her current stable condition a little longer, we would probably be looking at surgery on Monday or Tuesday. There are medications that can aid in keeping her stable if the surgery will be put off for a few days.
On a more personal note …
As a nursing mother, I had to use a manual pump for the first time during the trek to UAB. I had grabbed a blanket from the house before we pulled out for UAB, but not just any blanket. A friend of mine gave me blankets for all three of my girls not long ago. I took Victoria’s blanket from the shelf to use to cover me while I pump manually in the van. Her blanket has the following embroidered on it:
Victoria
“The Lord Is My Shepherd”
So, as I pump to provide nourishment for her, her name lays gently on both of my shoulders reminding me that the Lord is her shepherd. He will not lose this little sweet lamb named Victoria Jayne.
Today has been a whirlwind day to say the least.
Mark and I took Victoria to her appointment with a genetic doctor. While there, they noticed her coloring and called Victoria’s cardiologist. We ended up taking her to the cardiologist office. Her oxygen level was very low and they could tell immediately by looking at her that she had deteriorated since her visit with them last week. They gave her oxygen and called an ambulance. She was taken to Women and Children’s (they let me ride in the front seat of the ambulance while Mark drove the van over) and she is now in Pediatric ICU. She has been put on a ventilator, not for her lungs, but to relieve the work of the heart. They assured us that she had just been breathing so hard, that this would help her relax and help her heart out.
She will be put on a jet this afternoon around 6pm and flown up to UAB while Mark and I drive up. We do have to stay at the hospital to sign paperwork so we cannot leave the hospital any earlier. She will have surgery either tonight or first thing in the morning.
Please be in prayer for little Victoria. Pray that God blesses her and heals her.
We will give more information as we have it.