Lexis in NICU

We’ll a lot has happened since Lexi was born at 8:36am on 2/9. I’m going to try my best to break it down day by day.

2/9 – at 8:36 Lexi was born at Providence in Everett and she came out alert and as far as everyone can tell, very healthy. We spent most of the day with friends and family, taking turns holding her and being amazed at the small miracle that was just delivered to us. At around 4:30pm, my wife was going to try and feed Lexi and she called in a nurse to help and it was at that time we noticed her feet were a little blue, so we brought this to the attention of the nurse and they immediately started to monitor all of her vitals.

The nurse noticed that Lexis oxygen level in her blood was extremely low, so at around 5pm they rushed her down to the NICU at Providence to put her on oxygen and to find out what was wrong.

After hours of monitoring her vitals and multiple doctors looking at her, they came to the preliminary decision that she has a heart defect, but wouldn’t know for sure until they could take a better look at her heart in the morning.

It was at this time that they also told us that they think she has down syndrome and they would send out her blood to be checked, but could take anywhere from a couple of weeks to a month before we get an answer back. As you could imagine, this was a real shocker to us and still doesn’t seem real and we are praying that they are wrong

The Doctors also came to the conclusion that she doesn’t have a third kidney or any issue with her kidneys, which was great news, but she does have some type of Mass near her kidney. They told us it might be one of two things 1) Teratoma Tumor 2) neuroblastoma, but they wouldn’t know for sure until they could get a better look at it. After multiple ultra sounds they decided that a CAT scan would be the way to go, so at 1am they transported her from the children’s portion of Providence to the main hospital, so they could take a look and we should have more answers in the morning.

2/10 – After a couple of hours of sleep, we awoke to the realization that this was indeed happening and not just a bad dream. We washed our faces and brushed our teeth and went back down to the NICU to be with our baby. They didn’t really have any new info for us except that they would be doing an echogram of her heart in a few hours.

We spent most of the morning crying and in shock, praying that everything will turn out ok.

The results came back from the CAT scan, but they still couldn’t tell what it was and they were going to come up with a new plan and they would let us know what it was as soon as they did.

The tech was done with the echogram around 11am and once the radiologist reviewed it they would be down to talk to us. We spent most of the day waiting and answering calls from our friends and family that wanted to know how Lexi was doing, but had no idea what was going on and each time we had to explain it, it broke our heart all over again.

Around 8pm a doctor from Children’s hospital in Seattle came over to Providence to talk to us about her heart and he said she has a heart defect called AV Canal and (this part is a little fuzzy) her main artery was restricted and they needed to transport her to Children’s Hospital in Seattle in the morning.

We spent most of the evening with Lexi and comforting each other and after an hour or two of sleep we went back down to be by Lexis side.

2/11 – At around 8am and team of four showed up in Lexis room to transport her to Children’s Hospital, which of course we weren’t ready for, but the entire team was great at explaining what was going on, where they were taking her and what we needed to do when we arrived.

(This part broke my heart) I stayed at Providence with Roxi, so we could talk her doctor into discharging her early, so we could go to Children’s Hospital with Lexi, so after a few hours they remove the staples from the C section and made us swear that she would stay off of her feet as much as possible, sleep and would eat and drink lots of water.

We left Providence around 5pm and stopped by our house, so we get a change of clothes and check on our older daughter and dogs and off to Childrens we went.

The first night they didn’t really have any information for us, except that the team was reviewing the information and coming up with a plan and we should have more info tomorrow.

We spent time with Lexi and after a few hours, we went home, so Roxi could get a good night’s sleep and prepare for another long day.

2/12 – We arrived back at Childrens and spent a few hours with Lexi and at around 1pm the cardiologist came in to talk to us about her heart and I have to say it was the best explanation ever.

It turns out the artery wasn’t restricted (Great News!!), but she does indeed have the heart defect, but they want to hold off for 4 to 6 months before they operate on her heart and if the only thing that was wrong was her heart we would most likely be able to take her home the next day, but they still don’t know what the Mass is near her kidneys and until they do, they don’t know if it needs to come out right now or at a later date.

At round 2am, they were going to take some blood, so it can be tested in the morning to see if the Mass is releasing hormones and if it is it could be very harmful to her heart and body and they would need to operate on her ASAP.

We went ahead and drove home to get a few hours of sleep and recharge for the next day.

2/13 (Today) – So far we don’t have any more info on the Mass, but we are hopeful we will hear something this afternoon.

I want to say thank you to all of the support we have been receiving from our friends, family and my coworkers from TSG and Microsoft. I’m going to do my best to update this blog in the evening, so if you’re interested, please check back.

I’m confident that God will be looking over Lexi , but please say a prayer for her.