Into Loving Arms

Yesterday had its fair share of ups and downs for me. My morning started off normal. I dropped Sebastion off at school at 8:15, texted my friend Jolene a bunch a times, and read new posts on the blogs I follow. Something mentioned in one of them made me want to call CHKD and ask about chromosome labs they did while Caris was there. I have wondered what the results were of those tests, but we haven't wanted to call... I mean, it doesn't matter now, right? WRONG! It will forever matter...

So, I called and apparently they'd received the results on February 4th, while she was still there, but hadn't shared the findings with us for some reason. I asked if she would give me the results but due to privacy laws I would have to sign a faxed consent to receive those results. Or, I could drive to CHKD (about a 40 minute drive) and get them personally. I told the receptionist that I wanted a copy of her medical records as well, and I would be there within the hour to pick them up.

When I arrived, the lady handed me a consent form to sign, stating that I requested the records and informed me that it cost .50 per sheet before 50 pages and anything over was .25/page, but she didn't know how many pages it would be. She assured me that since she was only there for 5 days, it shouldn't be too many pages. So, I signed the form stating I would pay for the records. While I waited for them to print I called down to the Billing Office to request they print me out a detailed record of the $121,449.87 bill we'd received.

I was called back into the office to get the medical records and the lady handed me a manila envelope that weighed at least 2lbs. Caris had a medical record file that spanned 357 pages long...$81.75

I didn't know what to say... except "here is my money... thank you."

I walked out holding every shred of information on Caris that CHKD had... and I could only decipher a third of it. So, I decided to be gracious, and brave, and go up the the 4th floor NICU Family Waiting Room, which was so inviting, as it was my second home for a week.

I was greeted by the receptionist who remembered my face, but couldn't remember my name. When I said "Tate" she said "Oh, yes, baby girl Tate... I am so sorry for your loss, we've been praying for you around here." Wow. They remembered her. They remembered me. They knew what happened. I held back the tears as I asked her if she could see if Dr. Bass, Caris' attending doctor her entire stay, was available for me to say a simple 'thank you.' She asked me to take a seat and he would be in momentarily.

The waiting room was full of people, from all different families. One couple had just delivered, and they were waiting to see their baby for the first time after delivery, a feeling I knew all too well. A set of grandparents were sitting talking about how beautiful their grandson looked today. A woman talked on her cellphone about the cafeteria food, and how they had an awesome salad bar. I smiled to myself because I ate that salad bar for lunch and dinner every day that week.

Then I heard Dr. Bass' voice, talking to a woman at the counter who had a child in a stroller. She must have come in when my back was turned. Dr. Bass commented on how good she looked, how happy he was that she was doing so well. The little girl in the stroller looked like a perfectly healthy baby, and Dr. Bass was one of the reasons for that. In that moment, I felt so happy for that mother, and for her healthy baby.

I stood up and walked towards to counter, and Dr. Bass turned and saw me. I held my hand out to shake his, and I thanked him for doing everything he could to save our daughter. He shook my hand back, and looked at me with such pity in his eyes. He said that no thanks were necessary, and I began to weep. I apologized for crying, and told him I just wanted to thank him and his team who loved on my baby when I couldn't, and who tried to save her, when my body was no longer able to sustain her. I told him I was there for her medical records and to find out some information on some genetic tests they had done. When I told him the record was 357 pages, he said "Come to my office, we'll look at them together."

I followed him to his office and he proceeded to explain a lot of things to me that I am sure were explained to me when Caris was there being treated, but those moments seem to all blur together in hindsight. He explained the treatments they had to use on her, why they had to use them, etc. He also explained that Caris was extremely sick, and they did not know why.

What they did know, and what they have ruled her death as (unofficially) is Congenital Heart Disease (CHD). Congenital heart disease can describe a number of different problems affecting the heart. It is the most common type of birth defect. Congenital heart disease is responsible for more deaths in the first year of life than any other birth defects. 

When Caris was in the womb, she did not have to breathe. I did that for her. Her heart had to pump extra hard (for reasons we won't know until the final autopsy results come in, which should be before May 2nd- that is when we will know 100% what the diagnosis was) and since the heart is a muscle, the extra pumping made the walls larger. When she was born, I was no longer breathing for her... I was no longer doing anything to sustain her life. Therefore, with her thickened heart wall, it was hard for the blood to pump from her heart to her lungs and oxygenate her entire body.

Dr. Bass told me there is nothing that I did, nor could have done, to prevent this disease. I have been told that a million times, but for some reason when he said it, I felt better.

I was still concerned about the genetic testing results, as our 20-week ultrasound showed Caris had some markers for down syndrome. A common thread with down syndrome is heart defects... so, naturally we wanted to know what those results were. Looking at our baby, she didn't look like she had any visual genetic defects- but her medical records proved otherwise, in regards to her appearance. I wanted to know what the actual chromosome tests had to say.

Dr. Bass called down to the genetics lab and sat on hold for ten agonizing minutes... when he hung up the phone and looked at me, he smiled. I began to weep. He said "Maggie, she had no genetic defects, those tests came back negative!" and also some Metabolic testing had been done, which would prove yay or nay on other genetic defects. My baby did NOT have down syndrome! God's Girls prayed against that the evening we had our 20-week ultrasound and were told she had those markers- and God heard those prayers and either healed her from it, or the doctors were wrong! We are still thankful we opted not to do the amniocentesis, even knowing what we know today. The risks weren't worth it- and having 6 days with our beautiful baby girl is better than having no days with her.

Dr. Bass sat with me for over an hour explaining different things to me regarding her medical history. He answered every question I could think to ask. He gave me hope and reassurance. He told me not to be discouraged from trying again, to have a baby, because he believes that what happened to Caris was just like "a lightning strike" - which in some ways brings comfort. In other ways, it makes us more furious. We cannot change what happened to our little girl, but we can get every ounce of knowledge there is so we can be more proactive in monitoring any pregnancies in the future.

Dr. Bass did suggest I see a high-risk OB in conjunction with my regular OB if I do in fact get pregnant in the future, just to be on the safe side. He also said if I haven't heard back from UVA regarding her autopsy results by May 2nd as they promised, to contact him and he would call on my behalf. He also said he would sit down with my family and discuss those results if I wanted him to.

After about 90 minutes of feeling calm and reassured as we spoke, I got to hug the man who spent every second of my daughters time at CHKD fighting for her, praying for her, and believing she would  be made whole, whatever the outcome.

I praise God for Dr. Bass.

I walked out of his office, went down to the KD Cafe and got a salad from the salad bar and a vanilla yogurt with granola parfait, for old times sake. I said grace and thanked God for MY grace- my angel- my baby girl. And felt at peace knowing that her life was fought for, not only by myself, my husband, my entire family, all of our friends, and total strangers, but honestly fought for by the medical staff at CHKD.

It is easy to harbor resentment for medical staff when they don't provide the outcome you believe to be the best- and send you a $121,000 bill... It was easy for me to thank Mary Immaculate, it was easy for me to thank UVA... I sent their thank-you cards out the week after the funeral. I had not, however, done anything to thank the staff at CHKD.

In hindsight, I can see why I was so bitter towards them... even though it has NOTHING to do with them... My brother was there in 1989, they couldn't save him; he died of congestive heart failure.

My niece and nephew were there in 1995, they couldn't save them; they died of undeveloped organs as premies

My friend's son was there in 2007, they couldn't save him.

But you know what? Last fiscal year, there were more than 5,800 inpatient admissions and more than 156,900 outpatient specialty and surgical clinic visits. The Emergency Center handled an additional 47,217 visits. 

While I don't know how many of those patients were able to be saved, I do know that my God had (and has) the ability to see His will be done. It is SO STINKING HARD to believe that Caris was not meant to be with us, that she was only meant to grace our presence physically for 6 days. I don't have any clue as to why it was not God's will to save Luke, Kody, Kaitlyn, Carter or Caris... but I know His will is perfect- and there is no flaw in His ways.

So, I must keep believing that in time He will teach us how to understand His will for the lives of children that are lost, and for the families that are left behind to grieve. I honestly never knew that infant loss was so common, until I lost a child of my own and went searching for other parents to help me cope.

I spent the majority of today looking over Caris' medical records... I made it about a third of the way in. Tomorrow I will dig further. It actually brings me comfort seeing every single note that was written about my daughter. Down to the amount of urine they collected at a certain time, to the '0's in the 'Pain' column on her stat charts (I LOVE seeing that 0 there!) to the notes about when I called, "mother called, inquired, has been updated", to the visit logs where the nurses would write who visited.

I have the chaplains forms, the lactation consultants notes, the social workers 'diagnosis' about the stability of our home- I spoke with her for about 30 minutes on the phone the Wednesday Caris was in the hospital. All of her notes about me were positive, she noted how 'upbeat' I sounded, how she felt I had a good grasp on the situation, on Caris' prognosis, and a strong support system. At the end of her notes, in the 'Assessment' portion, she noted that "When BG Tate goes home, she will be received into loving arms"

I read that line over and over and over again... and then it hit me, and the tears began to stream. She was right- When my baby girl went home, Luke, Kody, Kaitlyn and Carter were all there to receive her into their loving arms. What a beautiful vision!

I have a new appreciation for CHKD.