August 18, 2012

Friday, August 10 (Day 2): Rylan's scare

Happy Anniversary to the love of my life. I never in a million years could have seen where life would take us when we started dating at the age of 16. Thank you for helping me become the person that I am. 

I never was able to fall asleep last night. I watched the clock counting down the hours until I could go see my babies. At seven o'clock it was time to get up. I had received pain meds earlier and once I was up in the wheelchair I got a dose of morphine. I was feeling warm but nothing was stopping me. We scrubbed in at the nicu and went first to see Baby D. We still had not named the babies because all we could see we're their eyes and chins because of the bcpap. Baby D was working hard. He was on a little bit of oxygen but was showing distress with his work of breathing. We had talked to the doctors since delivery about his work of breathing and possibly giving him curosurf which is surfactant that helps the lungs be less sticky. It works wonders but the baby needs to be intubated to give it which does have risk. We decided just to watch him because he was on low oxygen and still doing ok. While sitting next to the baby I started getting really hot. I told Paul it was time to go see the other babies. The other three babies were all in the same room so Paul wheeled me over and as soon as he got me situated I had to ask for a basin because I was going to get sick. Paul quickly got me out of the nicu and back to my room where I got some medications for nausea. I also tried eating some saltines. After about thirty minutes I was ready to try it again. I made it as far as the nicu sink before I started throwing up so it was a no go. 

At ten grandpa and grandma Lesnau brought the kids down to the hospital. Grandma Pat and Nicole also came. The girls and Drew met with child life and got to make dolls that had all the same things that the babies have. They also got big brother/sister shirts and wore them proudly. It was now time for the older kids to meet their siblings. They got to meet everyone but Baby A because her side of the room was very busy. They spent the longest time with Baby D and they were so excited to touch their brother. They were touching his hands and face and we had to remind them a couple times to be gentle. Natalie than sang him two songs and he tried to open his eyes while she was singing. I can't wait to see the bond between all seven of them develop! After meeting the babies we headed back to my room and they spent time looking at everything and attempting to play with my bed which was not permitted due to a fresh c-section incision! Finally at about 12:30 I had about all I could handle and sent Paul, the kids and Paul's parent home.

Grandma Pat and Nicole brought me to the nicu so I could spend some time with my babies. It is amazing to see all of you but I can't wait until we can see your faces. I also can't wait to name you but it is too hard with all the contraptions on your face. I went back and tried to get some rest. I also was busy pumping every 3 hours trying to get my milk in. 

In the evening mom and dad headed back to the nicu. We stopped and talked to Dr. Manalo and we had noticed earlier that Baby D was not looking good. Your retractions were worse and your oxygen needs were going up. You were now at 50% fio2. I asked if you could possibly have a pneumothorax, air around your lung, but she didn't think that was likely. It was decided it was time to give you the surfactant. While they were setting up to give you the med it was time to hold Baby A. I was so excited to hold a baby! I was amazed that you were stable enough to hold less than 24 hours after you were born. 
Daddy and Baby A

She has herself already wrapped around daddy's finger

Mom and Dad with Baby A

A mom that is so in love with her peanut
About 30 minutes into holding Baby A, Paul had stepped out and came back asking why there were so many people around Baby D's bed. I said I wasn't sure and maybe they were just helping set up. 

Fifteen minutes later our world was rocked. Dr. Manalo came over and said we have a problem. They could not get a breathing tube in and now the bcpap was not enough for him. They were bagging him but he wasn't doing well with it because of spasms in his trachea from the multiple intubation attempts. We quickly put Baby A back and headed over to the other room. They had already called a peds intensivist, a peds ent, and a peds anesthesiologist. They could get a 2.5 tube in but it was too small for you. A size 3 tube would not pass. Dad left the room because he couldn't handle seeing people work on his son. I stayed in the back of the room and had to keep backing up as more people came into your room. Your heart rate was dropping and so were your oxygen sats. I finally could see your hair because they had taken your bcpap hat off and I couldn't believe how much hair you have. The intensivist was now attempting and I just kept praying that they would get the tube in. I literally wanted to jump out of my wheelchair and stand next to you and just shout please help my son. I was now silently crying. The tears were running down my face. Your vitals were getting worse. They had to give you a dose of atropine to get your heart rate up. I was just waiting for them to have to start chest compressions but thankfully that never happened. 

The intensivist could not get a tube in either and the ent now called out for a trach tray. Daddy came in at this moment and he said he knew it was bad because I was crying hard and one of the advanced nurses who was working on you also had tears running down her face. He asked if I wanted to leave and I said yes. I knew how bad it was because of my nursing experience but I also could tell because not a single nurse or doctor would look me in the eye. They brought us to a room and I told Paul that my son could not die because he was just 24 hours old exactly, had no name, had not been held by his mom and was not baptized. I called my friend Dana and she quickly picked up that something bad was happening and said she was on her way. I tried calling grandma Pat but when I called her cell a man answered and it was not the right number. This happened twice and I could not remember for the life of me what her home number was. Nicole texted it to me but grandma slept right through the call. I then asked dad what he thought about the name Rylan James for Baby D. We had talked about it earlier but once he started having trouble I needed him to be strong like my uncle Jim is for his son who has spent many days fighting for his life in the nicu as a baby. It was then decided that Baby D was indeed Rylan James. I couldn't be alone any longer so dad brought me out. As soon as we came out Dr. Manalo and the anesthesiologist gave us a thumbs up. The full emotions of the situation came over me as I could see Rylan's vital signs had improved. He had an airway! Dr Manalo came out and told us that they were going to trach him but were waiting for a piece of equipment. While waiting the anesthesiologist attempted to intubate. When she put in the 2.5 she felt resistance and pushed through it and felt a pop. She then tried with the 3.0 and was able to pass it. It appears Rylan had a condition called a tracheal webbing that is a fibrous membrane that covers the trachea. It was not the cause of his breathing difficulties but didn't help. We later found out how rare this webbing is. One of the neos has practiced for 25 years and has never seen one. Dr Evans, the ent that took on his case, has only seen it a handful of times. Once the web is broken it usually disappears but without taking a look at Rylan's trachea with a scope we can't rule out narrowing or stenosis of his trachea which could cause life long issues. During X-rays Rylan was also noted to have a pneumothorax so a chest tube was placed and over 70ml of air was removed. Rylan was still having difficulty even on the vent so it was decided to give him the curosurf now since he had a breathing tube in but it did have its risks again because his lungs had taken a huge hit but thankfully he tolerated it really well and started showing improvement. Mom and dad were emotionally drained. Rylan was stable at this point and so we said good night to all the kids and went back to our room. 

Rylan...mom and dad love you so much and the thought of losing you was more than I could imagine. I pray to God tonight that he will protect you. I am nervous that there may be life long issues with your trachea and possible neurological issues because of the trauma that occurred but mom and dad couldn't love you more. You are ours and a true blessing. We love you buddy.
Our little Rylan James






More pictures to come of the older kids meeting their siblings!!

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