A Journal Entry

This last weekend has been a time of great joy and great fear. The chaplain that stopped off by Boy's bedside last night really urged that I journal what I went through, how I felt, what I saw. Since I hate writing with my hands and it will just get lost as a word file, here it is.

Saturday, Oct 1

The mother in law showed up out of the blue to see the Boy so I was the one to take her up there. No big deal, just a small change in schedule. I was met by the Boy's doctor at the door. Nothing new there. I haven't seen her in a long time. She ran down the game plan that he was going to be getting his 2 month shots this weekend. They would be spaced out over 3 days so as not to be such a shock to his tiny system. She expected he wouldn't nipple (eat from a bottle) as well and be crabbier and sleepier and may need a little more oxygen. I understood. I know infants have a bad day when they get their shots. He got his first shot around noon and I came back about 330. He was just finishing up his feed through his feeding tube and then he just snuggled in with me after a little fussing. The kid was out hard. I was glad he was getting some good sleep. Gramma and Grampa then showed up about an hour later. Boy got pissed that somebody woke up him up from snuggle time with mommy. He almost busted out his big boy cry he was so mad! His nook soothed him then. I swear he was trying to suck it right off its base. He did great then. We played pass the baby so he could get time with the grandparents. He woke up enough to interact with them both and it was just precious. It was getting to be meal time again and he was fussing more. We were waiting for daddy to get there to try and teach him another new trick- breastfeeding. We couldn't wait any longer so Boy and I assumed the position with the help of his fantastic nurse. I'm going to call her Amy in the rest of this. She helped me get boy in place and watched over us to see the progress. Boy really didn't care about the boob since it didn't pour the milk in like the nipple kinda does. Amy went to go get a nipple shield to see if that would help. Right after she stepped away Boy got a little mad at the whole situation. He grunted and groaned and wiggled. Then he put his head back as far as he could get it and then farted and slammed his little mouth over my nipple and started sucking. He sucked a few times but really wasn't getting anywhere. By this time, Amy was back with the shield. I swear this little piece of plastic is from heaven. It's sorta like a nipple condom with wholes and some rigidness. It goes right over the nipple and is like a fake one for him to latch onto but still does the sucking and work of breastfeeding and getting the goods right from the source. I loved it! It was so much more gentle than the Evil Pump. He sucked and paced himself for 15 minutes. We had to stop then so he wouldn't completely wear himself out. No problem. We tried to give the rest of the meal in a bottle. He ate about half then he was too tired. His oxygen was dropping and staying there, his heart rate kept slowing down. His ques that he was done. He had the rest through his tube and daddy snuggle with him for awhile and that was it. He needed just a little extra oxygen to get through the eating and that was it. Par for the course. Amy celebrated in our little triumph with us. Boy was awake when we left so she was going to snuggle with him instead of ignoring an awake little boy in his crib. Amy has been a God send up until this point and will be even more than I knew a this point.

Sunday, October 2

I awoke early with the ambition to get some thing accomplished for the Boy's homecoming. Scuddle bug has it it could be as early as Halloween. That's only a few weeks away! I have none of the housekeeping things ready and finding time during the week is impossible. I get up, go to work, come home just long enough to grab the morning milk or just head straight to the hospital, snuggle with the boy and feed him, maybe do a bath, then come home, find something to eat that requires no prep and then I'm so exhausted it's off to bed by 9ish. Weekends have been hectic since I went back to work too. I could have started some of this while I was off but the room wasn't ready for clothes, I didn't know what I would be getting from the shower, and none of the furniture was in there. Well, as of a week ago, it is semi set up with the crib and dresser and old shit out. The job for the today was to go through all the clothes that I have procured from family, friends and rummage sales and go through round 1 of baby shower gifts that I brought home. I got washing and ran to the store to buy hangers and organizers. When I got home I sifted through the first load of dry laundry for the hat and sleepers he could wear now. I was putting his name in when the phone rang from the hospital. It was the day nurse giving me an update that Boy had a spell after his shot and eye exam and they had to put him back on high flow oxygen. Ok. 1 bad spell isn't so bad. It sucks but the doctor warned me. I let Hubby know and finished packing the clothes up. Off I went to the hospital. I got there just in time for his 330 feeding and had Boy snuggled on my chest like we have been. The feeding went in and that's when it all started going downhill.

He was breathing hard like he usually does after a feeding. His poor tummy gets so full that it's harder to expand his lungs. Think of it like going to an all you eat buffet and how icky you feel after eating all you can. Then he decided he'd stop breathing for a big. His oxygen sats would drop and he'd breath a few more breaths and stop. Well this sucked. Amy was sitting by me and noticed this too. She said to reposition him so I held him like you would normally cradle a baby. This got him to breath again. He was good for a few minutes like this and then I heard the reflux of milk. Shit. Normally he'd stop breathing but a good rub and he'd come back around.

Chest rub. Nothing.

Sit him up. Chest rub. Back rub nothing.

Amy rubbed his back. I rubbed his chest. Nothing.

Boy turned blue and limp and lifeless. His monitors went off for his heart rate slowing down to dangerous levels now too. Amy picked him up and put him back in bed. Sometimes this will get him to start staggered breathing again but my son laid there limp and lifeless. Amy started to place a bag and mask over his face in the hopes of the full oxygen blow and facial stimulation would get a couple breaths but nothing. Lower his oxygen went. Lower his heart rate went. My baby was fixing to die right there. Amy started giving him breaths with the bag. Usually this will stimulate him to breath also. No dice. Another nurse came to help and suctioned out the milk that was still in the back of his throat and up into his nose. Finally he took a couple breaths and decided to stop. Cry. Stop. Cry. Stop.

I'm standing at the end of the cube watching in horror. I don't want to be in the way. I don't know if I should go out to the family room. I didn't want to abandon my child in his time of need. Amy and the other nurse worked hard to get him to breath again. It was comforting to hear the cry but heart wrenching to see him still blue and mainly limp. I questioned how this could be happening in my head. He has come so far and was going to be weened off the oxygen completely this week. Here he is not wanting to breath and heart slowing down to the worst thoughts ever a parent could have. Every mother believes that if they are there they can make things all better and I was there and I was so helpless and I was not able to make things better.

He finally did come back around and stabilized for the minute. Amy gave him back to me to hold while the doctor was consulted. Boy was working way too hard to breath still. This prompted the doctor to put him back on more supportive breathing machines. Cpap is one step below the ventilator. Boy was on that for a long time. It doesn't look the greatest on him and actually hinders his eating ability. I provides a constant pressure to keep his lungs open. I held my son while respiratory was called to get the machine set up. I was fighting back the tears. Amy sat down next to me with tears streaming down her face too. She said how they are told not to get attached to their patients but every once and awhile you just get attached to one and are very protective of them. Boy is hers. I cried some more. His big boy bed was changed out to a more medical type bed. At this time, Boy was tired from breathing again and started heading downhill. Before he crashed completely, he was put in his new bed where Amy rubbed his back and chest and stimulated him back. I tried to keep a hand on him when RT wasn't setting up the machine, when Amy wasn't getting his set with the apparatus applied to his face. He has to wear a plain beige hat to have the air tubes pinned to, across his face is a tube that has prongs that go up his nose, that tube is then attached to the 2 air tubes on either side of his face. His nasal tube for eating would have to be in his mouth again. There is not much open skin on his face when this gets applied. I did sneak in one last kiss on his cheek since I don't know when I will be able kiss it again.

RT said she had the system set up and was ready to go so Amy could change over from the oxygen that Boy was on to the CPAP prongs and set up. She got him all set up and prongs in and went to attach the air hoses to the tube. They did not fit. She worked hard and quick at it but they would not fit. In the mean time, Boy crashed again. He didn't have oxygen support, his heart slowed and he turned blue and limp. Amy gave up and had to bag the boy again to get him to come around. She couldn't see her partner nurse and didn't just want to yell so I went to find her for some help. I'm ok with that. Anyway I can help. The partner nurse came to help while Amy was bagging boy, still trying to get him to breath on his own. Partner nurse figured out that RT did not attach an adapter that is needed for NICU patients. RT lady was already long gone and said it was ready to go. The nurses tried to bite their tongues about this particular RT. I was pissed. I still am pissed. I'm really thinking about reporting her to someone. I'm not sure if it's the NICU coordinator or if I should find out who her supervisor is. Her oops caused my child to have a pretty severe hypoxic episode. It should have never happened if she did her job right.

Once they had everything attached to him, Amy let me hold him again. His pulse was just through the roof because he was so upset with the change. I tried to sooth him the best I could but in the end I had to take away his nook since that caused extra stimulation. The seal that is created to keep the pressure slowly started leaking and he needed his sticker changed again, so back in bed he went. He did fairly well with this change but he needed some time in bed so I could pump. Right before I started pumping, I noticed he looked white as a sheet. I had Amy check him and it was basically from the shock of everything that went on. By the time I was done pumping, he was pink again. I was fried from everything that went on. I couldn't even get the steps down for labeling the milk. Amy handed me a sticker, I found the pen to write the date and time and handed her the sticker back. I still had the milk sitting in front of me and she looked puzzled as to why I gave it back to her. Hell, I was puzzled too.

Hubby finally showed up after the major storm was done. That was good. I was able to let my mind rest and regroup. Boy looked so peaceful now. He wasn't working hard to breath and maintained his vitals well. Just as we were thinking about leaving the chaplain showed up. Yup. He as the timings. He sat down and talked with us about what just happened and offered a prayer for Boy for which I cried through.

Hubby and I then went home exhausted and praying no more calls would come in. So far they haven't. Thank God.