Saige is now in Heaven right along side of God.
I had been in labor for probably a week before I went to the hospital. It wasn't pain, just pressure...until that last day. By 9:30, Friday night, December 3rd, I couldn't take it. At 11:30, the nurse came in and looked at the fetal monitor. She left the room pretty quick and came back, put me on oxygen and informed me that they were going to have to do an emergency C-Section. Oh boy, did I freak. Saige's heartrate had dropped to 60 and I was only dialated to 2. They didn't want to take any chances, since I still had a long way to go. I had Saige at 2:00am on Saturday morning.
The nurses brought her in my room around 11 that day. I was so drugged up, but still held her and tried to feed her. She wouldn't eat. I wasn't sure if that was because I wasn't doing it right, or what. I have 2 neices, one 5 and one 2, and helped with both of them as babies. So, it wasn't like I'd never fed a newborn before. Then I figured that maybe I was just too drugged up. So, the nurse in the nursery tried to feed her and had the same problem. She gagged and just wouldn't eat. She switched her formula and that helped. I guess they thought that was the problem.
The next day, Sunday, I called the nursery around 10:30 to have them bring Saige to me. It rolled around noon and they still hadn't. I just figured that they were really busy. It was time for pain killers, so I called down and told them to not bring her, I would call again when I woke up. The nurse who answered told me that another nurse was on her way to talk to me. It wasn't a good conversation. She came in and said that Saige had turned dusky(bluish) in the nursery and they wanted to do a spinal tap on her. I started bawling. Here, my brand new baby, and a "procedure" already. Of course, I allowed it. They admitted her to the NICU and did the spinal. The results came back clear. I was so happy.
The doctors ended up diagnosing her with pneumonia. They said this was probably a result of my c-section. The first time I walked in the NICU and saw my precious baby in the incubator with an oxygen hood over her whole face, I could have died. It took a few times before I could handle it. The had her on oxygen for a few days and that was it. She seemed to be fine.
I went home on December 7th and they kept her until December 15th, which was when she finished her antibiotics and she came home. I was so excited to finally have her home. I found out after she came home that they had done an echocardiogram on her in the NICU. This was an ultrasound of her heart and lungs. They found the pressures in her lungs to be in the 50's. The normal pressure should have been from 15-20, but because of her pneumonia, they weren't too worried.
I had to take her to the cardiologist for a follow-up about a week and a half after she came home. I took her on January 4th and her pressures were still high. Her cardiologist called me and said that he wanted me to get her to Riley Hospital in Indianapolis, IN as soon as possible. That in itself scared the crap out of me. On January 7th, I took her to Riley Hospital for the first time. The cardiologist, Dr. Ebenroth, from Riley decided to do another Echo on her to check her lungs for himself. He backed up exactly what her cardiologist said. Then came the bad news. He then told me that she might have PPH(Primary Pulmonary Hypertension). It is a lung disorder, which causes high pressures, but is also not curable. So, I said, "Basically you're telling me that if this is what she has, that I have to just sit back and wait for my baby to die?" He answered with the most horrifying answer possible. "YES". I could have dropped right there, but I wasn't giving up without a fight.
They admitted her to the heart unit that day and put her on oxygen to see if that might help. The next day, they did another Echo on her and no change in her pressures, but I do think that the oxygen was helping her breathe.
I hadn't actually realized how much of a problem she had breathing until then. I started thinking about how she was when she was home. I would feed her an ounce and while burping her, she would fall asleep. I would have to wake her up, after almost every ounce. That stopped in the beginning of her being on the oxygen. She actually started eating and sleeping better.
I took her home on the 11th of January and had her home for another week and a half. They had me schedule her for a cardiac catheder on January 20th. This was a test where they would knock her out, intubate her and then put a catheder straight into her lungs. They would test her lungs without anything special. Then they would test her on 100% oxygen, and then add Nitric Oxide to the oxygen and see if her lungs react to that. If they would open up at all. If they do, that is a good thing, and then they have a medication to put her on at home.
Well, her lungs did react, but not as much as they would have liked. A little was better than nothing. They had decided to keep her for 24 hours for observation. That night, Thursday, she was having problems. I fed her and within 20 minutes, her oxygen saturation, which should be above 90, was dropping into the 70's. About an hour after she ate, it came back up. This continued to happen all that night and the next day. The doctors just decided to stop feeding her. They put in a feeding tube and wanted to see if that would stop the de-sating. They also decided that in a week they were going to try and do a lung biopsy to see if they could figure out what was wrong with her. They wanted to wait a week just to give her time to rest after her cardiac catheder.
On Saturday morning, January 22nd, around 7:00AM, I got a, not so nice, wake up call. They were rushing Saige to the ICU. They couldn't get her oxygen to stay up. I was so terrified. They got her there and told me that they were going to have to intubate her to give her higher amounts of oxygen then she could get through the nasal canula. They also told me that they were going to try and put in a central line. This is someting they surgically place that has spots for about 5 different IV's. It is so they don't have to stick her numerous times. They put it in one place and they hook up all the IV's to this one thing. While Michele(my friend who went with me to Riley) and I were in the waiting room, a doctor came in to tell me that Saige was doing worse than when I left her. I asked him if she was going to die and he said that it was possible. I lost it. I just couldn't understand what was going on. They had no idea what was wrong with her and she might die. I didn't know how to deal with that. So, I cried for the next half hour, until the doc came back in and said she was stable. I gave him the biggest hug...probably scared the poor guy. He was an intern. I got to go see her shortly after that. The saddest sight in the entire world. Blood everywhere and my poor baby laying there with tubes coming out all over.
Then, I found out that they were going to have to put a chest tube in because when they were losing her, they had to "bag" her. They had to bag her so hard that they blew a hole in her right lung. I was starting to get numb. I was so scared again. They got the chest tube in with few complications. Saige just didn't want to be messed with. That actually became somewhat of a joke between me and the staff. Saige was always, for the most part, fine until someone "messed with her". I used to say, just like her mother.
The rest of the day Saturday and then on Sunday, were hard. She was up and down all night and the next day. By Sunday night, they decided that there was nothing else they could do for her. They had given her every medication possible and nothing would keep her stable for long. What was I supposed to do? Her wonderful doctor, Dr. Nitu, then decided that she wanted to try her on steroids. She said that if they would have had the chance to do the biopsy, this was one thing they would have probably put her on anyway, so why not try it now. She said it couldn't hurt. And, she was right. Within an hour after her first dose, she was stable.
Then, they came to me with the idea that they need to do the lung biopsy now. They didn't want to wait. They didn't think she could make it too much longer and they knew that only a biopsy was going to give them any information into what was wrong with her. It was so hard to make the decision to do that because they warned me that she could die during the operation. As scared as I was, I had to let them. I then decided to put Saige's life, 100%, in God's hands. It was the weirdest thing, but as soon as I gave God the control, I was fine. I knew in my heart that she was going to come out of the surgery fine. I didn't even cry when I left her room. I was fine the whole two hours she was gone. The doc came to the waiting room to tell me she came through it. I hugged him and told him thank you, but I knew she was going to be fine. He just smiled.
Well, as soon as she got back to her room, the problems started again. They couldn't keep her oxygen level up. About three hours after she came out of surgery, another doctor came to me to tell me that he wanted to put her on the ECMO machine. ECMO is Extracorporeal Membrane Oxygenation, which is a heart and lung bypass machine. It gave her lungs and heart a break from having to do any work. Another, oh so scary, decision to make, but an easier one then the biopsy. The doctor told me that if I didn't agree to put her on ECMO, she probably wouldn't live another 2 hours. That was all I needed to hear. I couldn't just sit there and watch her die. Her life was still in God's hands and if it was her time to go, then at least I knew I did everything I could for her. When I left her room, right before they put her on the ECMO, her oxygen sats were in the 50's...she was purple.
I wasn't as calm this time, but still not as bad as I would think. Again, she came through. What a fighter Saige was.
Saige's biopsy results back the next day and her Doctor came in the room, so excited. She informed me that Saige was diagnosed with PPHN(Persistent Pulmonary Hypertension of the Newborn), which was curable. I just couldn't believe it. I have never wanted to scream for joy, so loud, in my life. I almsot knocked Dr. Nitu over, jumping up to hug her. She stayed on the ECMO machine for 6 days. That whole week was wonderful. All I could do was think about all the things that I was going to get to do with my baby, that for a short time, I didn't think possible. I started keeping a journal. I wanted to have everything written down, so when Saige got older, I could show her how strong she was and all the nasty things she fought through. She did so well. The day they took her off the ECMO machine, her lungs pressures had gone down into the 40's...they had actually gone over 130, which is very bad. She had to have felt like she was suffocating. Poor baby.
Then, the day after she came off of the ECMO machine, Dr. Nitu came in with this horrid look on her face. She proceded to tell me that Saige's initial biopsy results were wrong. She doesn't have PPHN, she has ACD(Alveolar Capillary Dysplasia). But, this one isn't curable. I stared at her with the most intense feeling of numbness that I've ever experienced. How could that be? How could they have been wrong about something like this?
I decided to do some reading on ACD and found out that it is a so very rare lung disease. As of now, there are only 116 diagnosed cases in the ENTIRE WORLD. How is this possible? Why my baby? What are the chances? All the questions going through my head. They aren't positive, but they belive that her disease is genetic. She had a 25% chance of recieving both abnormal genes from both her father and I, and she did. I felt so guilty.
Here, I went a week beliving that she was going to be fine, and then get smacked in the face with this news. I wanted to hit something. I just kept telling myself and the doctors that God was going to work a miracle. Saige was going to be fine. God brought her this far. He's not going to take her away from me now. I felt that way until the day she passed away.
Almost 2 weeks after she had come off of the ECMO machine, she started having problems. Two days before she passed away, her lung pressures were over 100 and the day she passed, her pressures were over 125. I knew that there was nothing else I could do for her...except to stop her suffering. It was another hard decision, but one I knew I had to make, if I love my baby as much as I knew I did. It was again in God's hands and knew that is she was meant to live, he would bring her through this too. At 9:30pm on Monday February 14th, 2005, they took Saige off of her ventilator. 20 minutes later, she passed away in my arms. I was lucky enough to have close friends and family there with me, but nothing could ease the pain I was feeling. I will always love my precious Saige and know that someday I will see her in Heaven. Without tubes and the happy baby she should have been here on earth.
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