Guess who overslept the day of surgery?? Yep, you guessed it. We were suppose to leave at 6 am and instead we woke up at 6 am. We somehow made it on time or just a few minutes after seven but it did make for a hectic morning.
I thought Bricen would be pretty unhappy before surgery because of not eating for so long but he did pretty well. He was a trooper while getting his vitals taken. In reality his gown had horses on it but we called it camo.
I think recovery was the roughest part for me and Marty (and Bricen). He was just not comfortable. They ended up asking the Doc for more pain medicine and it seemed to help. The anesthesiologist came out and says in a nutshell that I was right Bricen is a difficult intubation. He also said he could see how a smaller community hospital like the one he was born at would have a hard time with intubating him because he just isn't made like everyone else. Pretty much he said if it was a specialty children's hospital it shouldn't be a problem but be cautious with any other hospital. My thoughts on this were #1 Um, yea I told you he was. Did you not believe me? #2. I don't plan on letting him be intubated anywhere but Riley.
For the longest time after we got to Bricen's room I held him. My arm and my bottom was numb but I wasn't about to move and make him hurt again.
Finally, after another dose of morphine up on the unit, Bricen got some rest.
And so did Daddy. Marty took the night shift Sunday night so I could get some rest since I'd be staying with Bricen at the hospital Monday night. He was pretty exhausted himself. This is our typical sleep schedule. Monday thru Thursday when Marty gets home from work we do dinner and then I take a nap so that I can get back up and stay awake for this high maintenance baby during the night. Any naps I catch during the night are bonus. Friday and Saturday nights we do dinner and Marty takes a nap until I wake him up so I can sleep during the night and go to work the next day. By Sunday nights we are both pretty tired. Sometimes I get a nap before Marty goes to bed and sometimes Marty is ready for bed by the time I get home. It's a team effort. Bricen has started sleeping for longer periods though, so I expect this to get better. The joys of parenting. Wouldn't trade it for the world!
I was trying to capture the eyes. This was after the morphine. Little guy was definitely going down "morphine drive" and you could tell it by his eyes. Thank goodness he was fine with just Tylenol after that one dose in recovery and then one dose up on the unit.
He worked and worked on getting this off his arm. And at one point when we woke up for a feeding during the night he had succeeded. Thank goodness he didn't actually get the IV out though.
Tuesday morning the whole team of 900 (exaggeration) comes in. This, of course is after a few people come in one at a time and I answer the same questions 900 times. Anyways, the "Calvary" (my new name for them) come in and is asking what Bricen's feeding schedule is at home (900th time). I tell them 85ml every 3 hrs. Dietitian comes back in later and tells me that Bricen has fallen off the growth chart. He is considered malnourished and that he should really be taking in more than the 85ml. She also says he's not just mildly malnourished but moderately. His wt has fallen off the chart but his head circumference and height is where it should be. (Have you seen his dad?) I was of course upset about this. Other than being small how was I to know? I was doing what they told me to do at the last Development Peds appointment. They said 80ml with each feeding (what he was on at that time) was a lot for him and we didn't need to worry about increasing for awhile. We were suppose to try to move up to 24kcal formula but if we weren't able to that was okay because (again)80ml was a lot for him. (Typical formula is 20kcal.) A few weeks ago he was acting hungry before time for the next feed so I went up to 85 myself. I was doing what they told me and then made the decision myself to increase. I realize he is smaller than other babies but he is a preemie.
So we had been doing 40ml feedings all night (because of surgery) and then these fools tell me we are going to go from the 40ml feeding to 100ml with the next feeding to get him up to where he needs to be. hmm...No, no we aren't. So they decided we do a couple 85ml feedings then jump to 100ml. mmk. Of course at 80ml he pukes. Then they decide we will increase to 27kcal formula and stick with 80-85ml. Fine. I'm still not happy because his belly has been thru a surgery and now we are switching. Last time he was on that high calorie formula was right when released from NICU and his GERD was horrible and the projectile vomit was horrible. So I am a little gun shy so to say. That's what we came home on. So far his puking hasn't been bad but you can tell it bothers his tummy because with most of the feeds he gets fussy and upset.
I understand the importance of growing. But malnourished?? He was stooling and urinating appropriately. He was happy. Every doctor we went to would say "Is he gaining weight?" And I'd say yes and we would move on to the next subject. Literally, that was the conversation at each Dr. visit, speech Therapy visit, etc. How was I to know? The nurses were great. Night shift and day shift made a point to tell Marty and I we were doing a great job with Bricen and not to get too hung up on the "malnourished" label. It was nice to hear and boy did I ever need to hear it! So now we have to get out (along with our other Dr visits) and have a weight check once a week at a germ infested Dr office. They want him to gain an ounce a day. Time will tell. I'm just frustrated because I've done what they say. We are good parents doing the best we can and Bricen's health is my number one priority and then to get told your son is malnourished?? And now to see him get upset with each feed...just frustrated.
Other than all that mess the surgery went well and we are thankful for that and the prayers.
So we had been doing 40ml feedings all night (because of surgery) and then these fools tell me we are going to go from the 40ml feeding to 100ml with the next feeding to get him up to where he needs to be. hmm...No, no we aren't. So they decided we do a couple 85ml feedings then jump to 100ml. mmk. Of course at 80ml he pukes. Then they decide we will increase to 27kcal formula and stick with 80-85ml. Fine. I'm still not happy because his belly has been thru a surgery and now we are switching. Last time he was on that high calorie formula was right when released from NICU and his GERD was horrible and the projectile vomit was horrible. So I am a little gun shy so to say. That's what we came home on. So far his puking hasn't been bad but you can tell it bothers his tummy because with most of the feeds he gets fussy and upset.
I understand the importance of growing. But malnourished?? He was stooling and urinating appropriately. He was happy. Every doctor we went to would say "Is he gaining weight?" And I'd say yes and we would move on to the next subject. Literally, that was the conversation at each Dr. visit, speech Therapy visit, etc. How was I to know? The nurses were great. Night shift and day shift made a point to tell Marty and I we were doing a great job with Bricen and not to get too hung up on the "malnourished" label. It was nice to hear and boy did I ever need to hear it! So now we have to get out (along with our other Dr visits) and have a weight check once a week at a germ infested Dr office. They want him to gain an ounce a day. Time will tell. I'm just frustrated because I've done what they say. We are good parents doing the best we can and Bricen's health is my number one priority and then to get told your son is malnourished?? And now to see him get upset with each feed...just frustrated.
Other than all that mess the surgery went well and we are thankful for that and the prayers.
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