A lot has happened since my last post. I won't go into everything, I'll just give the highlights and catch you up to speed on where we're at now.
On my last post I had said that Dylan was having problems with Apnea episodes because of the amount of PGE ( the drug that keeps his PDA duct open, so that he's able to live and breath until they do his Norwood surgery) he was on. I have a love/hate relationship with PGE ........ I love it because it's what's keeping my sweet, precious baby boy alive right now........ and I HATE it because it is what caused me to witness the scariest thing in my life. I think it was the day after Dylan's surgery, or it might have been the day after that, but Joe and I went to go see our peanut at 8pm after the NICU re-opened after shift change, and the minute we got to his bedside, he had an Apnea episode. As we were walking down the hall into his room, I saw his nurse at his bedside kinda rubbing his head, and as we got up to his bedside Dylan started turning blue...... a deep midnight blue color that I NEVER want to see again. His whole body was stiff and his nurse was flicking his feet really hard and rubbing his head and patting his back to try and get him to breath. Nothing was working, so another nurse came to the bedside and started to "bag" him. I stood there in horror looking at my baby boy thinking that was the last time I was ever going to see him alive. I stood there watching everybody at his bedside working on him and there was NOTHING I could do. It seemed like hours that I was standing there crying, watching my boy fight for his life. He finally started breathing again and I was able to stand at his beside and hold his hand.......... only to have him stop breathing again two minutes later and to have his little hand turn blue inside of mine..... after that, they had to put him on something called a CPAP machine to help him breath...... the way it works is it goes through his nose, and in order for it to work, his mouth has to be shut so that the air doesn't just go through his nose and out his mouth..... Dylan likes to have his mouth open a alot...... so they had to put a chin strap around his head to keep his mouth shut. It was such a horrible thing to see your child go through and it was so hard seeing him on the CPAP because he looked SO miserable :(
Since those scary Apnea episodes, they lowered his PGE down to the "safest level" that they could that would still allow it to keep his PDA open, and he stopped having Apnea. YaY! He's been really good, he hasn't had any apnea at all in at least close to 2 or 3 weeks. As a matter of fact, he's been doing really good in general since then, with a couple of minor hiccups in the road. He was doing really good with his feedings, and gaining weight, but was set back a few days because he started having blood in his stools. We could tell a few days before they said that he had a stomach problem that he wasn't feeling good. I could see it in his eyes... I could tell he wasn't feeling good, and then he started having the bloody diapers, and he stopped eating and wouldn't open his eyes for anything.... just wanted to sleep. They did a series of abdominal x-rays and blood work, and everything came back "normal" .......... they couldn't figure out why he was having blood in his stools, so they took his food away from him and put him on bowel rest.... and let me tell ya... our baby boy likes his food!! He was NOT a happy camper when they took it away from him :-( After a few days he was able to be back on food, but this time he has a different formula that supposed to be gentler on his tummy..... and so far, so good...... no more bloody stools :-) It set him back a little bit on his weight gain...... but he's pluggin along now, and getting back to gaining.
He is now off of his Nitrogen, and they are going to start weening him off of his oxygen. Yay!! Once he's off the oxygen, we'll be able to take his nasal canula's away, and we'll be able to see and kiss his whole face!! <3
All of his grandparents were FINALLY able to meet him!! Because of flu season, the NICU where he is at had a two person visitor policy...... Joe and myself, and then two other people...... now you would think that isn't bad right? Two people at a time right? Wrong........ Two people... period. Thats it......... we had to pick two people and ONLY those two people were allowed in to see him.... there was no switching or trading allowed...... once we wrote those two names down, it was set, they couldn't be changed.... so for the first 3 weeks of his life, only the Grandma's were allowed to see him. It really sucked....... we really wanted everybody to be able to see him, to meet him and I didn't think that was going to happen..... until we were informed last week that now that flu season is over, we are now allowed to have SIX people on the list..... so both the Grandpa's and my sister were able to come in and meet Dylan! It was so great to have the rest of our family be able to see him. <3
We had to fire a few nurses........ there has been PLENTY that I have not really cared for...... but could tolerate, because I know that we can't fire every single nurse that I didn't really care for... BUT ..... there has been two nurses that Joe and I just did NOT want anywhere near our son...... and they had to be fired :-)
We left the Ronald McDonald House this week. We came home on Monday night. It was time to come home. Time to TRY and get into some routine and have some "normalcy" in our lives. Part of me was ready to come home, and another part was not. I knew it was going to be hard for me to come home. Although I've had to be without Dylan since the day he was born, I still had still been at the hospital and had not come home since the day he was born.... I was right across the street from him the whole time and I could go see him any time I wanted........ So it was really hard going home without him.... coming home to all of his baby stuff and all of his clothes hanging in my closet waiting for him was a really hard and emotional thing for me. All I want is to be at home with my baby boy in my arms. :-(
So that about puts us up to speed on whats happened since my last post. Yesterday he had an Echo on his heart done, and they thought that his PDA looked smaller than what it has been, so they upped his PGE medicine to see if they could open it a little more and they did a repeat Echo this morning. The results from the Echo are not what I wanted to hear. It does show that his PDA was restricted yesterday, and it had opened a little with the increase of his PGE that they did yesterday so they didn't have to increase it anymore today. The neonatologist told me that the cardiac team was going to meet tonight and discuss a plan and what they want to do with Dylan, but that she was told that surgery might have to be sooner rather than later. She said that she doesn't have a date or anything yet, but that the Cardiac team was meeting tonight to discuss things, and then they would inform the Neonatal team of their plan in the morning when they do rounds. So we'll know more tomorrow about what the plan is. I really hope they tell us that they can give Dylan more time to grow. He isn't ready for his Norwood yet. He is just barely back up to his birth weight which really isn't that much :-( He's such a strong boy, and he's been doing so good, and I am so so proud of him. I know he'll fight just as hard if they have to do his surgery soon, but I'm really hoping he has more time. <3
Here is one of my favorite pictures of Dylan and his wubbanub <3
Aww he is the cutest! I'll be thinking of you guys and praying for more time to grow until surgery. It's amazing how much strength they really have. Caleb went through his Norwood at 3 days old, and did great. Hugs to you both.
ReplyDelete