We’re celebrating two birthdays this weekend: Sam’s adjusted birthday (today), and his 3 month actual birthday (tomorrow)! Preemies have 2 birthdates for the first couple of years of life. Too bad he can’t eat cake yet! Sam still had a lot of developing to do when he was born, so he is nothing like a 3 month old baby. He is very much like a brand new newborn–he is in the 50th percentile for height and weight for his adjusted age. Developmentally, Sam is actually a little advanced because of the extra three months he’s had outside of the womb. He can lift his head and his doctor confirmed yesterday that his smiles are real, social smiles and not gas!
I’m sure you’ve guessed already that Sam is finally home! Our last night in the hospital was pretty stressful. Sam was weighed at about 11 pm on Wednesday and was down an ounce and a half. On top of that, he got a bit constipated and wasn’t interested in drinking much milk. We were sure they wouldn’t let us take him home. Our nurse decided to weigh him again in the morning, and his weight was actually above what it had been Tuesday evening. Don’t ask me how that happened! It definitely wasn’t because he ate a lot!
We could hardly believe it when we were given Sam’s discharge papers. We signed a bunch of papers, unhooked him from his monitors and walked out of the hospital for what we hope will be the last time for a very long while.
We love having Sam at home, and I think he’s pretty happy to be here too. Darwin, our cat, isn’t sure what to think yet. We’ve had a few stressful moments and some sleepless nights, but we’re enjoying our time together as a family. Sam is getting used to sleeping in our quiet house instead of in a hospital room filled with the sounds of alarms, chatter, and crying neighbor babies. We’ve stopped checking to make sure that he is breathing every 15 minutes. It’s more like once an hour now. 🙂
For the last 3 months we’ve watched enviously as new parents walked out of the hospital with their newborns. For those parents, bring the baby home was just the beginning. We’ve already been through so much with Sam that it is hard to remember that this is just the beginning for us too. The first chapter of Sam’s life has come to a close, and now we get to enjoy our beautiful boy and really be parents for the first time.
Thank you for sharing our journey with us. Sam is a lucky little boy to have so many people in the world who love him so much already. This will be our last post on CaringBridge, but if you still need a Sam fix, you can go to http://www.castillomania.com for photos and updates.
Sam continues his campaign of shock and awe.
The nurses have consistently set the expectation that Sam should feed every 3 hours and complete a full feed of 85ml. The little guy, on the other hand feels that after eating 50-65ml, he’s good. To meet the nurses expectations we have had to push our little Samole to finish his feeds, fearing that we might not earn the privilege to go home otherwise. As a result, we’ve been stimulating him so that he wakes up enough to continue feeding. We twist the bottle in his mouth, pull the nipple out a little, adjust him in our laps, or burp him – all to wake him up and bring his conscious awareness back to sucking on his bottle. Since we started doing that, we’ve noticed an increase in spitups and regurgitations. Obviously not a desirable outcome. The final straw today was his second ever bout of projectile vomiting (this time all over Emily) – SHOCK!!!
So…our solution was to stop pushing him. He now consistently eats 50-65ml and has developed the habit of waking himself up every 2-2 1/2 hours instead of sleeping 3-4. This is still acceptable in the minds of the nurses and we’re all much happier for the change in plans!
Today was also the day that Sam got to try out his car seat for the very first time! The hospital wants to see babies able to sit upright in a carseat for an hour without desat-ing before they will discharge the infant. The obvious reason for this is that he has to be able to tolerate the ride home without having any problems. The danger that babies face is that, because they’re still so weak, they can’t pick themselves up when their heads slip forwards and their airway becomes blocked – clearly not a desirable situation. Sam passed the test with flying colors. He sat there like a champ for 10 minutes, decided he didn’t really like it there and fussed for a while – at which point the nurse put some warm blankets on him. That did him in! He slept the rest of the time. Check out the picture…AWWWW….
Okay, it was AWWWW, not AWE. So sue me.
Sam sure is a noisy sleeper!
He gained 1/2 an ounce yesterday. The N.P. says he looks good and should go home tomorrow if he can keep up the good feeds!
Yesterday was extremely disappointing. Sam’s nurse practitioner called at 6 am to tell us that Sam had fed extremely well overnight and that he’d be coming home in a few days. We were thrilled. But then Sam had a day full of mediocre feedings. He was really tired and I started to wonder if we’d made a big mistake. It didn’t help that Sam’s nurse for the day (not one of his usual nurses) made it clear that she thought Sam had no business being fed on-demand. She reminded me all day that he wasn’t taking in enough milk and that he’d lose weight because of our little experiment.
We came into the hospital this morning fully expecting that Sam would be off of on-demand feedings and that it would be weeks and weeks before he could come home. But, surprise! Sam gained weight yesterday (only 8 grams, but it’s something), and he had a good night of feedings. We were asked to room in with Sam tonight and we’ve been given a tentative discharge date of Thursday.
Now, even though there is a discharge date set, there are still some hoops that need to be jumped through. First, Sam needs to gain weight today and tomorrow. He drank a lot of milk today, so I think there is an excellent chance that he’s gained some weight. We’ll know around 9 or 10 tonight. Second, he cannot have any respiratory episodes. One respiratory episode would set us back a full week. Finally, he needs to pass a car seat test. He’ll sit in his car seat for an extended period of time while hooked up to his monitors to see if he can keep his oxygen saturation up.
So things are looking up! It’s been a great day. The only complaint we have is that, due to construction, the parent room-in rooms are not available. Sam has been moved to a small private room. There is a chair that folds out into a bed for a parent, but we can’t both stay tonight. Dave is taking his last day of work tomorrow, so I’ll stay tonight and take care of Sam throughout the night. We’ve been promised a bigger room for tomorrow night.
We’re not sure if we’ll be able to room in with Sam today. There’s some construction going on near/in those rooms, so it entirely depends on how quickly the construction crew finishes up.
I just finished feeding Sam, and it is clear right now that he is not taking in enough milk. He was getting 25 ml/hour yesterday, and so far he’s only taken in 15/hour since midnight today.
Before going to this on demand feeding schedule, Sam was offered a bottle 3-4 times per day. He would drink as much as he could in 30 minutes, and then the rest of it would be fed to him through his feeding tube. He always got 8 feeds per day. The ones that weren’t by bottle were given through the feeding tube. Now he can only be fed when he wakes up and asks for it. He can drink as much milk as he wants. Nothing is given to him in a tube. We only wake him up to feed him if it has been 4 hours since his last feeding.
Sam needs to learn that drinking milk makes his hunger go away and that when he feels hungry he needs to wake up and let someone know. I think this will be a big challenge for Sam. He’s a great sleeper and he really only cries when you poke him with pointy objects. I sat in his room today and thoughtCome on! Wake up and cry! Cry! Cry! Cry! He didn’t cry, but he kind of groaned and stretched. I decided that was enough and did his feeding.
Last night was a success!! Sam woke himself up to eat and took about 2 ounces by bottle at each feed. His Nurse Practitioner called today and said she thinks he’ll be coming home sometime this week!!
The next step is to room in with him. The ISCU has some parent rooms that we can stay in with him. It will give us good practice taking care of him around the clock.
We’ve said it before – the right nurse can make all the difference.
Last week Sue worked on Sam for the first time. She seemed nice, one of the more pleasant nurses that have been on him. Yesterday, she was back on him. She talked a lot about how he had grown so much and was way more alert and interactive than the just 3 days earlier. She made such a big deal about Sam and showed a sincere level of interest and affection for him that it warmed our hearts and we decided she was a nurse to cultivate. As it turns out, she felt the same way about us (read: Sam) and she was the one to conspire with his primary to schedule themselves on him to the exclusion of the other nurses in the department. Since then, we have found Sue to be a conscientious caregiver with almost as much interest in having a good relationship with us as in Sam’s care.
Today we were talking with Sue about how it might be nice to try a trial run with him and put him on on-demand feeding. We think that Sam has shown a pattern where, when we wake him up ourselves, that he never fully wakes and has poor feeds. Contrast that with times when he wakes up himself and he’s a bottle-feeding rockstar who should tour the country and give concerts of feeding performances for poor feeders everywhere. So we started feeding him today and the next thing we knew, Sue had gone and gotten the nurse practitioner, explained what we were thinking, and convinced her to go for it. She then disappeared again and when she returned, she let us know that she had just made sure that the order for his feeding had been changed so that the night nurse would know to feed him whenever he woke up and looked like he wanted to be fed. Sue’s a nurse who gets things done.
Now…lest you all get too excited – Emily and I have discussed it and we’re not expecting the world. To be honest, I would be floored if the next 24 hours were an unqualified success, but I think that it is going to give us good insight into his remaining issues and where we can best support him as he works on his feeding.