Linden's Story
Linden was born on April 30th, 2013, 3 1/2 weeks early. The first 9 weeks of her life were very normal; Jake and I adjusting to two kids, sleepless nights, and a lot of dirty diapers, feedings, and baby cuddles.
At about 8 weeks, we noticed that Linden's skin color was very yellow.
She did have a touch of jaundice at birth, so we assumed she was still fighting the jaundice and it would go away with time. At 10 weeks, July 7th to be exact, we were at church and one of our dear friends, Lauren was visiting from Florida. Lauren is a nurse and she mentioned her coloring to us. She calmly, but highly suggested we take Linden to the doctor to be checked out.
Side note: Even though Lauren was in Florida through the next few weeks, she was there for us every step of the way. Texting, calling, praying, encouraging, and an answer to those crazy medical questions that we didn't understand. She will never know all she did for us. <3
Jake and I were both still at ease, thinking her pediatrician would send us home with a phototherapy blanket and she would be fine. I called our pediatrician on Monday and made an appointment for Tuesday afternoon. On Tuesday, July 9th Graham, Linden, and I moseyed on in to the doctors office, still not very concerned.
I remember the nurse looking at her and then calling our doctor in immediately. One by one several nurses came in to get a peak at her and give their opinion; pretty unsettling, but still talking myself through the fact that everything was going to be fine. Our doctor said he was going to make a few phone calls and would be right back.
He returned what seemed like an eternity later and said he wanted us to go straight to the Children's hospital in Peoria. THAT scared me. Her coloring, now a greenish yellow, was worrisome enough that she needed to go to a Children's hospital??
I remember texting Jake at work a billion times. Our pediatrician came back in and I asked \"How serious is this?\" and he answered, \"If this were my daughter, then I would want her seen right away.\" My heart sank.
As we drove to Peoria (45 minutes away), we prayed, cried, and consoled each other. The unknown was so scary…was our sweet baby sick? What was wrong? We checked in and they immediately did bloodwork and sent us to get a sonogram of her liver.
Side note: we happened to get the meanest sonogram tech on the face of the Earth who sighed at Linden's every squirm and cry. I wanted to punch her at the end of it, in Christian love of course. ;)
After the sonogram, which again seemed like an eternity, the meanie tech told us \"the sonogram looks okay, but her bloodwork is worrisome, so they are going to admit her. Let me lead you to admitting.\" We asked questions and she had no answers for us. We were scared, trusting our God to lead us through what we were about to encounter.
The first few days we met what seemed like a several dozen people. Everyone from doctors, to nurses, to the cafeteria staff were so kind and compassionate. After a week of running every test under the sun, they did a final test, a hydascan on Monday, July, 15th. This was the big test that they were pretty sure would give them the answers they were looking for. It would show if Linden's liver drainage and if her liver had any obvious blockage. I remember during the hydascan she had to lay under a machine for over an hour, and the sweet thing slept the entire time while Jake and I took turns rubbing her head and praying over her.
They sent us home on Monday and we returned on Tuesday to complete the final part of the test. After her test on Tuesday, the radiologist told us it didn't look like her liver was draining, but she couldn't know for sure until the hydascan was officially reviewed. In the mean time, they went ahead and admitted us on Tuesday afternoon (at this point, we obviously knew something was up since they didn't send us on our merry way). After being admitted we met with our GI doctor, who in such a short time we grew to love and trust. He gave us the news we were hoping we weren't going to get. \"Linden's liver isn't draining and we think we know what is wrong, but we can't know for sure unless we do surgery.\" My heart ached and the tears started to stream.
\"Surgery will probably be tomorrow and the surgeon will be in shortly to talk with you.\"
Looking back, I can't believe I wasn't more of a basket case than I was, but I know that is only the grace of God. Many people were praying and we truly felt a peace like none I've ever experienced. Even though, it was such a difficult trial in our lives, God felt so near. I remember my sister Kari saying, \"You are being so strong, how are you doing this?\" And without even letting me answer, she answered \"It's God's grace. He gives just enough to make it through.\" She was right, I know my personality (worrier, planner, facts oriented) and those traits did not show their face much during this….only by God's grace.
Within the next few hours, we met our surgeon and was immediately impressed by him. He explained and drew a picture of the exact procedure they were going to do. First, they would double check to make sure Linden's liver was actually not draining, which would involve laproscopicly injecting a die into her and they then would hope to see it filter into the gallbladder. If it did not drain, then they would go ahead and open her up and reroute her intestines directly to her liver to allow for drainage. This procedure is called the Kasai procedure.
At this point, our surgeon was the first to mention the word transplant to us. He said two-thirds of BA kids end up with liver transplants. This blew our minds as we realized the seriousness of her disease.
After receiving all the information about her surgery and asking as many questions as we could possibly think of, the surgery team went on their way. I remember anticipating that Tuesday night would be difficult. However it wasn't... another gift from God. Linden wasn't able to eat 6 hours prior to surgery, but she did great. I remember the whole walk down to the surgery room, she smiled the entire way.
I remember feeling sad, but not scared. Anxious but not worried.
We were able to go with Linden down to the surgery floor and be with her until they actually took her to the surgery room. While there, we met with the nurse who would be giving us periodic updates during surgery and met with the anesthesiologist who explained his part in the process. The anesthesiologist asked us about Linden's name. He told us he had Linden trees in his back yard and that they are the sweetest trees that he knew of…fitting for our sweet girl.
We had met with everyone that we needed to and it was time to pass Linden off to the nurse. This was the most difficult part; leaving my baby in the hands of someone else, not being able to be near to love on and cuddle her. She made it easier on us and smiled as we walked away. I cried.
We waited in the surgery waiting room and held our buzzer tight. The buzzer would go off when there was an update for us. Within the first 30 minutes we got an update that Linden's liver wasn't draining and she did in fact have biliary atresia, and that they were going to go ahead and perform the Kasai.
Side note: I've never once googled biliary atresia, so please don't ask me any questions from google or tell me something that you heard or found…ignorance is bliss. :)
After 3 longs hours of surgery and several updates later, we finally got the final buzz telling us that surgery was complete and we could meet with the surgeon and then finally see Linden. Our surgeon explained to us that Linden did in fact have biliary atresia and did not have a developed gallbladder; her gallbladder was simply scar tissue.
He said she did \"beautifully\" during surgery and the next 24 hours were the most important.
After our meeting, Jake then went to meet Linden in recovery while I moved our stuff from gen peds to the PICU. I remember walking into Linden's PICU room and seeing Jake holding her. She was swollen, had wires everywhere, but was sleeping soundly. We were happy to be on this side of things and ready to get our baby girl feeling better. My sweet family was able to be there too and I am so thankful. They were a perfect distraction, encouragement, and brought a feeling of normalcy to this very abnormal time. I will never ever be able to thank my parents enough for all they have done for us in the past year. I feel so blessed.
The next four days brought no road bumps and Linden recovered as quick as she possibly could.
They told us that we would be admitted for 7-10 days but on day 5 (July 21st) we were headed home.
Linden's follow up appointments all brought good news, her liver immediately drained and her numbers were normal within 10 days. This was such a blessing, considering they told us they hoped for normal numbers within 3-6 months! The first leg of our journey was complete and we were praising God for his goodness through the previous weeks.