Trent seemed to improve a bit today and I think he’s starting to feel a bit better. He still gets REALLY, REALLY mad but it seems to be more tied to just being hungry now. The monitor also doesn’t seem to ring off as frequently. I’ve given up trying to figure out if it’s a false alarm and just jump up every time it rings. I’d rather be safe than sorry. We also know now that Sophie can sleep through anything. The monitor wakes Aaron and I out of dead sleep and scares all the animals but Sophie just sleeps right through it.
It was so sweet to see them snuggling in their crib this morning. I do believe they know each other is there and seem to reach for one another. I’m sure there’s still a fair amount of attempting to get fingers up each other noses- but they also seem to just like to touch hands. I also saw him gently touch her head this morning near where her shunt is. It was almost as if he was trying to tell her that it would be ok.
I’ll be glad to see the pediatrician tomorrow. My hope is that Trent can get off at least one of the bone meds and we can slowly wean down on some of his drugs.
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Our little man continues to struggle. We had hoped after 5 days at home he would’ve settled down but its just not happening. I am very glad we are going to the pediatrician on Monday. Hopefully she can give us guidance on making him more comfortable. He gets very upset easily and never seems to be able to relax. He holds his legs to his chest, clenches his fists and just cries. He seems to be uncomfortable and in pain- I just wish he could tell us what is causing his discomfort so we can help. He’s still on his 5 meds that he came home on (multiple times a day) but its almost as if they’re no longer working.
Although he was quite fussy today, we did take both he and Sophie to the farmers market and for a nice stroll today. Spending Saturday with our family is something we’ve dreamed about for a long time. It was wonderful to have that dream finally come true. Many people commented on the babies as we strolled through town. The funniest comment though had to be a lady in our neighborhood who asked us where we got the babies. Apparently she hadn’t seen me pregnant and was more than surprised to suddenly see us with two little ones.
We are hopeful that tonight and tomorrow are better for the Trentman.
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I finally feel that we’re turning a corner with the Trentman. Last night he slept much better and seems to be adjusting. Per the recommendation from the visiting nurse, we’re not putting him in his bouncy seat at night to sleep. The upright position seems to help his reflux, which in turn helps to avoid bradies. The monitor doesn’t seem so scary now and we’ve learned not to freak out when it goes off and just go right to Trent to stimulate him. (No matter what time of day or night it happens. I also was able to reinsert him feeding tube all by myself today. I know that sounds like a small thing but for me it was like winning the lottery. I was so close to going to the phone to call one of the neighbors or my girlfriend who live 2 blocks away but Trent and I made an agreement that he’d give me two tries on my one – and on the second try I was able to get it in. My successful at getting it in on my own almost felt like winning the lottery. I was so frightened to do it without Aaron and then when I had to do it- I could.
Sophie girl continues to do well – eating like she has a bottomless pit- and I can’t figure out where she’s putting it all. Tomorrow we will go to the farmers market both out babies. Spending a weekend hanging out with them is something we’ve dreamed about for so many months. I can’t believe that they’re both home. We are so blessed.
Today Sophie had her recheck with the neurosurgeon. We were thrilled to learn that her recent CT scan showed marked improvement in the size of her ventricles and all signs show that the shunt is working. We were still cautioned to watch for signs of infection and symptoms to watch for reviewed with us but so far so good. The doctor was also pleased to see how active Sophie is, that she continues to eat well, and is responsive. All these things point to positive neurological development. Our next scan will be in 3 months. She was also weighed and is now a robust 7lbs!
The Trentman had a bit of better night but still continues to struggle with reflux and breathing issues. Last night we didn’t use the monitor because he was so fussy we couldn’t get the sensor belt on him. However today when the visiting nurse came she warned us that it could be very dangerous to allow him to sleep without it and so tonight its back on. We pray that he is able to get through this soon. Its very frightening and we can tell that he’s uncomfortable.
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The Trentman continues to struggle. Last night we had him wear the monitor all night and while he did Brady from time to time (which made me jump up and stimulate his chest), we both were able to get some sleep. However, he had a tough day and spent a good part of the day being very upset – which us trying to figure out what’s wrong. He just gets so mad – which then comprises his breathing and heart rate. It’s a vicious cycle. Hopefully tonight will be even better than last night and we’ll just go from there. I think we’re mastering the feeding tube but the visiting nurse will be here tomorrow- just to ensure we’re doing all correctly.
Tomorrow Sophie girl has a follow up appt =with the neuro team. We pray for good news.
Trentman’s first night home was a great deal more challenging than we had hoped. The poor little guy was so out of sorts and really put us to the test as parents. In his first hour home, he pulled out his feeding tube – and went on to do it 3 more times in the evening. I had thought that inserting it was something I’d never be able to do but by the end of yesterday – I was able to do without much issue. It’s just so hard to do that to our baby. He cries so hard and although we were told it doesn’t hurt, it still can’t feel good for him to get something stuck up his nose and into his stomach. The apnea monitor has also turned out to be much for of challenge than we had thought. Its nothing like the ones we were so used to from the hospital. The monitor continued to go off every 10 minutes or so- most we believed to be false alarms. After about an hour of the alarm going off (it sounds like 3x the volume of a home fire alarm) and Trent screaming- I finally took him out in the living room. I unplugged the monitor and slept with my hand on his chest in his bassinet. Sophie was amazing and slept through the entire screaming and screeching monitor without ever blinking an eye. I was prepared for lots of up and down through the night- but wasn’t expecting Trent to cry through the night. So now I’ve learned that NYPD Blue is on from 12am- 6am and we’ll just take it one day at time. Today the home health nurse came and assessed him. She also called the monitor company to see if they could help trouble shoot some of the issues. I feel so bad for Trent- he’s really trying and didn’t ask to be born with all of these challenges.
I’m hoping as the week goes on – he’ll continue to get stronger and his eating and breathing will get easier.
I can’t believe its happened! He got the thumbs up- we’re all together at home in Willow Glen! The first couple of hours have gone well but a bit scary. It was both exciting and sad to say goodbye to our wonderful Stanford family that we’ve seen for over 4 1/2 months. I keep lookin gat him to make sure he’s breathing. In the first hour home, Trent pulled out his feeding tube, the apnea monitor went off and I wasn’t able to silence it (it sounds like 3x of a home fire alarm) and both Trentman and Sophie were more than hungry. So – although we were off to rocky start- things seem to have settled down this evening and we’re trying to figure it all out.
I’m learning to be more comfortable reinserting the feeding tube and have done it twice since his homecoming. Tomorrow the home healthcare nurse will come to see how we’re doing and make sure the monitor and feeding tube is going well.
Tonight will be the big test though. Sophie was an amazing baby today being ok with us focusing on Trent but we know both need equal time and are working on that.
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