Trent continues to struggle but each day his eating approves. He’s trying so hard to eat but just struggles with his suck/swallow process and holds his breath- causing his heart rate to drop. So for now, we just take our time feeding him giving him lots of breaks and do our best to help him get his food. Tomorrow is his eye exam- and we pray for improvement. The improvement with his eyes is one the areas that is keeping him in the hospital and one more thing we want to check off his go home list. It’s so hard to see him try so hard with his eating and not be able to do what he wants. We just want him to turn the corner and improve.
Sophie girl is such a good baby- very mellow and happy. It’s very touching to see how she reaches for Trent’s hand when I bring her back to the hospital. They seem to have such a special language that they share when they look at each other.
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Today the babies are 40 weeks old. Had life turned out as we had hoped, today would’ve been our due delivery date. It’s pretty wild to reflect back on the last 15 1/2 weeks and realize how long they’ve been in our lives. We are so blessed to have them and to have learned as much as we have. The Trentman continues to struggle. Today when I was there he had a significant desats and I ended up yelling for his nurse as the stimulations we’ve been taught us didn’t work. It’s just that he forgets to breath sometimes and our stimulations need to be more aggressive. He does come back after stimulation for the lack of response and the ringing of the monitor is very disturbing. He’s on more calorie assistance now as well to help his growth. We pray this new formula works. Later this week he will also have the clot in his aorta be rechecked. We were told that its nothing to worry about and this recheck is routine- but a blood clot still sounds scary -especially in the aorta. I just with I could give Trentman more strength so he could get through these things that are so hard for him.
Miss Sophie is adjusting to home life – as are we. She just rolls with it and doesn’t make a peep as we head up the freeway to see Trent. Is so nice to have such a great little person to hang out with everyday.
The Trentman continues to work REALLY hard on his eating and was able to bottle-feed all but one of his feeding today. We are so thrilled. This is a huge step for him since he’s typically tuckered out half way. The doctors are still deciding to do with his nutrition and we continue to pray every day for his weigh gain. He still sounds stuffed up but it seems a bit less every day. It feels odd just to have one at home and we hope he can beat the 3-4 week estimate for his homecoming. Sophie continues to be a trooper about going up to hospital and is perfectly happy to be popped back into their crib when we visit him. Although the hospital nurses are not suppose to engage the non patient babies in anyway- tonight it was just too much for Kim ( their primary nurse) and she just had to pick Sophie up and hold her. They had formed quite a tight bond over the time Sophie was in her care and both were happy to be reunited. We notice tonight that he tried to stick his fingers up her nose (again) and can tell they are true brother and sister. Sophie’s head circumference appears to be a stable, her fontanel feels as it should and I’m we’re hoping her head CT in early July brings good news.
We continue to pray for the Trentman to get stronger and keep making progress.
We’re getting the baby routine down. Leaving a little bit of light on and some noise (to remind Sophie of the hospital nursery) was just the ticket and both Sophie and I were able to spend most of last night sleeping – up only twice for feedings. She’s such a good baby. Today I just put her in her bouncy seat and she sat next to me while I worked- just enjoyed hanging out with the mama. We went to our first doctors visit and they will continue to check her 1-2 times a week for her weight and shunt.
The Trentman continues to struggle with his nutrition. He’s trying really hard to eat and his feeding continues to be increased but he’s just not putting on the weight. The doctors want to start him on an alternate formula tomorrow to see if that can help and in two days he’ll be followed up with additional tests to see if things have been improved. The good news of the day though is that the doctors are starting to wean his oxygen to try and get him off the nasal canula (assuming his eyes continue to improve). It will be so wonderful to be able to hold him without all the tubes. Both he and Sophie seem to miss each other and look and touch when we bring her back to the nursery to visit him. We cannot wait to have both at home with us.
Miss Sophie is getting settled into her new home. We realized late last night (or very early this morning) that Sophie has been living in an environment with lots of noise at night and lots of light. So, putting her in quiet and darkness was not what she needed to settle in for a snooze (we had been told she only wakes up every 4 hours- which was SO NOT the experience we had). Anyway, we know now- and we’ll all learn it together. It is so wonderful to have her with us and she’s great about going along with us to see the Trentman. We just pop her back in their cobed crib at the nursery and she goes right to sleep while we feed and visit with him.
He continues to try very hard to catch up with his eating. Every day he nurses a bit better and is able to bottle feed more without having a Brady. We’ve also learned the signs of when his head rate and breathing will become distressed and are able to sit him up to prevent it from getting dangerous. We really want him not to be dependent on the feeding tube and tomorrow I will ask the medical team to write something in his chart that encourages the nurses not to use the feeding tube unless he absolutely can’t be woken up for a feeding. We’ve noticed that certain nurses find it easier just to put his food down his tube and being without the tube is one of the requirements of coming home. We also wonder if the tube is also some of the issue with his breathing (he continues to sound really stuffed up all the time).
Today was a BIG day for the Keene family. Miss Sophie is now home! We are so excited. We were so nervous to drive her home. I sat in the back seat with her and kept poking her to make sure she was ok. As I sit here typing this, its so wonderful to hear Aaron on the baby monitor telling her how glad he is that she is hear with us and talking to her about how much her loves her. We’re all learning together, She’s been quite a trooper as well about going back to the hospital with us to see the Trentman and being put back into their crib while we feed and visit with him. She continues to do well with her feedings and the shunt tube running down her body is almost invisible in her abdomen now. We still see it in her head and neck but we know it’s just a matter of time before its not so apparent. As part of her discharge she received a full physical and we were thrilled that Dr. Stevenson (the second doctor who cared for her in NICU) was able to do it. When the nurse asked him if he’d ever met our babies, he said, “Oh – we’re old friends” and I knew them when they were really small. He also told us how impressed he is with both of them (as are we).
It was REALLY hard though to leave the hospital without the Trentman. However, each day he seems to make a little more progress and is able to handle more food with each feeding. Unfortunately he still continues to struggle though with Bradys during his bottle and nursing feedings and we have to watch him and the monitors at all times.
We are so thankful for everyone who has prayed for our little ones and helped us prepare for today’s wonderful homecoming.
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Today was one filled with preparation for Sophie’s release and continued progress for the Trentman. We are very blessed to have amazing friends and neighbors who have given us a wonderful shower, helped us arrange for a house cleaner, power shopped for baby necessitites and provided a very special outfit for Sophie to go home in.
We got our car seat installment approved by Stanford and I was tested the new parent manual given to me by the nursery. Very helpful reading. Our nurse Kim went through all of Sophie’s follow up appointments, special medications with special things and me we need to be aware of because she is a preemie. Given the Trentman’s status, Sophie and I are looking at doing the Thelma and Louise (being partners in running back and forth to the hospital daily for a while) to see Trent. The goodness is that the hospital is fine with me putting Sophie back in the crib with Trent when I’m visiting as long as I take her home with me. We keep telling her how thrilled we are to be bringing her home and tonight when we left, she was doing the car seat test. This test requires her to sit in the car seat for 1 hour prior to release and not have any desats or breathing challenges.
The eye exams showed that Sophie’s eyes are stable at stage 1 of ROP (a syndrome related to development of the blood vessels connecting the retina) and Trent’s eyes have improved to stage 2. We’re hoping this mean he can soon be removed from oxygen. He’s also doing his best to improve his eating and continues to be able to bottle feed more and more each day. His blood test today also showed that his hematocrit had improved with yesterday’s blood transfusion and his crit is now 43 (the eye doctor had wanted it to be 40_ We’re continue to pray that his homecoming beats the 4 week estimate we’ve received.