March 4th 2015 will forever be the day that I replay over and over and over in my mind. It's been 7 and half months since this day, and there hasn't been one single day that I haven't replayed this day in my head often times multiple times a day. I've been trying to write this post for months, but it was too fresh and I wasn't strong enough to do so. I have cried multiple times writing this but it has been quite therapeutic so I apologize for the scatterness of it. I've even posted this multiple times but taken it down because I just wasn't ready. I'm not sure I ever will be. But I hoping this provides me with some much needed strength.
When we went to bed on March 3rd, the day the girls were born, I had spoken with the neonatoligists about how my girls were doing. Lorelai was doing well, she just continued to have some higher pressures, and they were concerned about possibly having to put her on blood pressure meds. There was talk about having to ventilate her one more time to give her a second dose of surfactant. Surfactant is a compound that helps the lungs move air in and out of the lungs and helps to prevent them from collapsing and helps ensures they are working properly. This is something that occurs naturally in term babies but often times premature babies need some synthetic form of it to help their lungs. If Lorelai was going to need a second dose of it they were just going to keep her on the ventilator to give her lungs a break. But for the time being she was stable on her CPAP, so they continued to monitor her closely for the night.
When it came to Laynie they were slightly concerned that they were not able to advance her feeding tube. She was super tiny at only 1lb 8oz so they thought it might be because her airway was swollen from having to be on the ventilator so they were going to give her a rest for the night since they weren't planning to use it and retry in the morning. I had gone down to spend some time with the girls at 6:30 in the morning on March 4th. Lorelai looked great and so did Laynie. Laynie was proving to be the fighter she always had been. Her ventilator settings were only at 28%. I was hopeful as was her nurse. I was able to go back to sleep and rest. I was at peace.
At about 8:15 Adam and I were just getting moving and getting ready to head down to see our girls when in walked the man that would change the course of our lives forever. It was the neonatologist that was caring for both our girls. He came in with his med student and resident. They explained to us that there were some concerns when it came to Laynie. They had done a chest X-ray early in the morning to see how her lungs were doing. Due to her extreme prematurity her lungs were not fully developed at birth and she had received 2 doses of surfactant already and they wanted to see how the surfactant was working on her lungs.
In the chest Xray the radiologist found some air. This was concerning because we weren't sure how it got there. I can't remember what they told me exactly but they had come to some not so great conclusions. They believed that Laynie had a perforation in her stomach that was caused by the air they were pushing into her body by ventilator. In a normal infant being on a ventilator wouldn't cause them to be concerned about this. But Laynie we were learning had some very unfortunate anomalies.
Laynie they believed was suffering from esophageal atresia and a tracheal esophageal fistula. Which means that Laynie's stomach and esophagus were not attached (esophageal atresia). This was not ideal but could be dealt with. On top of this she had a connection from her trachea to her stomach (tracheal esophageal fistula). This was a major issue that would require surgery to fix. This is also what caused the perforation in her stomach. Due to her need to be ventilated air was being forced into her body so that her lungs could do what they needed to oxygenate her body. However air moves in the path of least resistance and premature lungs are very resistant to air so instead of the all the air going to her lungs some of it went to her stomach via the fistula causing her tiny, frail, immature stomach to blow up like a balloon and perforate.
During our conversation with the neonatologist the pediatric surgeon walked in. I remembered him from nursing school where I watched him perform a few surgeries on infants during my pediatrics rotation. My heart sunk. They told me that in order for Laynie to survive she needed surgery. She needed surgery to repair the fistula most importantly and eventually the atresia so she could eat. The problem that we had was that she was only 1lb 8oz, a pound and a half. They didn't have instruments small enough to do these surgeries. She needed to be at least 3 lbs to do surgery. Panic began to creep through my body. That was DOUBLE her current size...that was bigger than Lorelai was now. How was she ever going get that size, we had worked so hard to just get her to 1.5 lbs. This seemed impossible. The feelings rushing over me are something I can't quite articulate with words.
However they weren't ready to throw in the towel just yet. The surgeon's NP began to explain everything as best as possible to Adam and I. They were wanting to place a drain into her abdomen to help drain some of the free air from her abdomen. They also wanted to place a PICC line (more heavy duty IV) and then they would have to place a drain in her stomach to drain the air from there. The issue they would have would be that she was so premature and therefore her tissues were immature and the drains may not be able to hold. Adam and I of course gave the OK. They told us they would be placing the first drain into her abdomen in the next 30 minutes and would come back to let us know how things went and discuss the next steps. Adam and I said ok. they left. and then it was just Adam and I.
I will never forget the look on Adam's face. Panic, fear, all the things I was feeling were rushing across his face. I looked at my forever positive husband and asked him what he was thinking. His answer was simple. This is not good. I began to break down like I had when we were told just 1 month before when we were told we would lose both girls. I was a ball of nerves as I know Adam was too. We broke down and prayed together. We called family, texted friends and patiently waited to hear how our girls were doing.
Around 11am with my family and Adams by our side the Surgeon came back to let us know that Laynie did great. She was a true champ and they were able to place the drain! WIN! They now had another neo placing her PICC line. We still had a long way to go but for the moment we relished in our little victory.
I remember being at her bedside and discussing with her nurse and the neonatologist that they were going to go and place the drain to her stomach around 2. It should take about 30-45 minutes. Her nurse gave me her number and told me to call her. We went back up to the room and waited. I'm so grateful my family was there to distract us. at 2:45 I called her nurse and I will never forget the tone in her voice when she told me they weren't quite done yet. I don't remember exactly what she said but I remember my stomach dropping. My heart sank. I got a horrible feeling. I remember trying to stay calm with all my family there and just said, they weren't quite done yet.
Next thing I know its 3:15 and the neo came into our room. Again I will never forget the look on his face. I knew it was bad before he said anything. All he said to Adam and I was that he was hoping to talk to us together alone. He seemed frazzled and almost afraid. Adam and I said we would meet him at her bedside.
I got in the wheelchair at that point and Adam wheeled me down to her bedside. When we got there he was waiting for us. I stood by her bedside and he said the words that forever changed me. "I'm sorry but we were unable to place the drain". He told us that they tried twice and on the second try her lung collapsed and she now had a chest tube. "I'm sorry but there really isn't anything more we can do."
I looked at my sweet, perfect, little angel and started to sob. Sobbing is probably a huge understatement. Ugliest cry ever. The neo began to say they could increase some of her meds and things to keep her alive for what I'm assuming would be a few days. I looked at Adam at that point, and to be honest I don't remember what his face looked like, but I knew in that moment he felt the same way I did. We were done. We weren't about to let her poor little body go through so much pain and agony for any longer. All we ever wanted for her was for her to not be in pain. We tried the drains to give her a chance. If they didn't work then it was God's way of telling us he needed her.
At that moment God spoke to us in a strong way. A lot of people have said what a hard decision it must have been, but I don't even remember making the decision. I truly feel it was a decision made by God. He worked through me to deliver the message. We put our little girl and her needs above our desires to have her here. I know without a doubt that God was working through me at that moment to help aide in our decision. Because looking back I don't know how I felt so at ease with that decision. Our God truly is miraculous. He provided me with exactly what i needed in that moment.
It was shortly after that decision that we called all our family that was waiting in our room to tell them. While we waited for them Adam and I prayed around our girl. I wish I could remember the prayer but I don't. I remember feeling an odd mixture of panic, fear, calm and love. Then our family arrived. They all rallied around us and our girl. We said prayer after prayer and my mom and Aunt called the hospital priest to come in and give her her last Rites. It was going to be awhile before he could be there so we waited and prayed.
Then the nurse told me I could finally hold her. what a truly beautiful feeling it was to hold her. Our family waited in another room for a short time while Adam and I had a few moments with just her in my arms. It was during those moments that she actually opened her eyes for us and looked at us.
shortly After Father John came in and gave Laynie her last Rites. I cried through the whole ritual but I'm so grateful he was there to do it. Once her Rites were completed, her amazing nurse had the idea to provide her with portable oxygen to Lorelai's spot so I could get a picture of my two girls alive together. I'm forever grateful for this, because I never got to hold both my girls together after birth. They never got to be together, touch each other and do all the other things twins do together, so atlas I have a picture of them together, even if it obviously is with tubes and wires, cords and all sorts of machines attached to them.
|Laynie was reaching for her sister|
After this the nurse began to remove all of Laynie's drains, IVs and eventually the breathing tube. Then we waited. We waited for her to take her last breaths. Luckily during this time a friend of our was on call for this amazing organization called Now I Lay Me Down to Sleep. Where they have professional photographers come in to take pictures of families who are having to go through the death of a child. I'm so grateful for this woman and what she did for our family. She has one of the biggest hearts and I'm grateful she was there to capture this time with our family.
At 8:38 PM Laynie left this earth to be with our Heavenly Father. She died in her daddy's arms which is truly absolutely perfect. She died knowing how much we all loved her, cherish her and admire her strength and courage. She may not have been perfect physically on the inside but without a doubt she was perfect to us. Even though the final outcome is no where even close to what we had hoped for Adam and I are at peace with the fact that she died knowing we tried our hardest to save her. We wanted to so badly to do whatever it took to keep her here, our only downfall is that God wanted her more. While we still struggle to accept this most days, we know she is with God watching over us.
During this whole process her nurse said something to me, that has to be the most comforting thing I heard through the whole process. She told me she had never taken care of such a strong little baby. She told me what a fighter Laynie was. She said no matter what they did to her, she took everything in stride. She never needed extra blood pressure meds or anything. She just allowed each and every procedure to happen and fought like hell to stay here. This provided me with so much comfort because I knew then that Laynie wanted to be here as much as we wanted her. She never gave up, she never wavered she was strong, she was a fighter and I love her so much for that. I know without a doubt that a part of her is always with Adam and I and I truly think I gained so much strength from her.
Laynie was an amazing little girl who touched so many people. She brought so many people together fighting for a common cause...her...She did so much for people in her short little life and I'm so grateful to her. I feel truly blessed to be the mom of such a miraculous little Angel.
I love you more than words could ever express. I miss you every second of everyday baby girl. There isn't a moment that I wouldn't change the outcome and wish there was more that we could have done to save you. But I know that your dad and I and the wonderful team of doctors from our OB, MFM and neonatologists did everything in our power on this earth to save you. God just needed you for something that may never be truly clear to us. But we have faith that one day we will be with you again and that is what gets us through. Your brothers and I'm certain your sister miss you too but thank you for watching over them and protecting them. I have seen you protect them several times in the last months and I'm grateful they have you to watch over them. You're our Angel, and our Saint. You're amazing and I'm so lucky I'm you're mom.