Last night was not much better than the night before. I am not even sure that having a bed to sleep on is much better than the couch. The room is smaller so it magnifies the noise from the compressor for the moisture collar.
Once again, another late night in getting the kids down - probably around 9pm. VERY excited to get the bunk bed and have their room all put together so that everyone has their own spot to sleep in. Right now it's kind of musical beds. Great that they aren't fighting over the toddler bed, but I think everyone needs their own space.
Landon came into my room around midnight last night. I couldn't figure out what he wanted - no sip of water, no snuggle, no book, no movie (just asked, wasn't planning on giving him either one)... Finally I told him I was going to go to sleep and he was welcome to come in with me. So I laid down and he decided to throw yet another screaming/hitting tantrum. I brought him out into the kitchen for a time out and that effectively did nothing. Leaving him in my room only ended up waking up Timmy. Call me a bad parent, but going on fours of sleep in over 48 does not make me a very nice individual so, in desperation, I locked him in his room with the girls. Callie is used to sleeping through Landon's "crying it out", but it woke Trevy in almost no time. So I got her out and led her to my side of our bed and let her snuggle in with James. Bless her for going right back to sleep... (Alas, back to night one on the nighttime potty training.)
This entire time Landon just kept screaming. I was certain he would do as he normally does and just go climb in bed when he realizes that mommy and daddy aren't going to "rescue" him. This is one stubborn little man! I decided to try to sleep through it for a little while until I could get at least a little rest and calm down but the my phone beeped. Text message from my wonderful neighbor at 3:19am "Oh honey, is that Landon??? Do u need help?" She could hear him screaming over at her house! Granted we both had windows open, but...
I brought Landon in with me and he finally fell asleep late this morning. I guess it worked because then I was up around 6:30 when Callie woke up and got to take a shower while both boys were still asleep. I even started getting us packed for Timmy's visit to the pulmonologist.
When Bridgette arrived at 11 to watch the kids, Landon figured out I was leaving and had a hard time. Still getting used to all the baggage so we ended up leaving the house at 11:15, appointment time 11:30. Or so I thought. We arrived shortly after 11:30 and I was told that Timmy had already been marked as a no-show. Seriously? Wow, were these people strict! But I was late, so how could I argue? Then I was told my appointment was at 11:00. In my mind I was thinking 11:30. Very much not me. I believe the problem was that, though I usually go by the calendar, I had a few original appointments on my cell phone and the time on my phone was 11:30. Never crossed my tired brain that that was wrong, in spite of looking at the calendar.
The receptionist didn't seem too impressed, rather annoyed actually, but she did call back to see if they would still take Timmy back. Yes. Such relief. I hate to put people out because of my mistakes, but I'm so very glad they were able to still see Timmy today. (Dare I add that she asked if I had my referral with me? Not a chance. I don't recall being given one, but I can't say that I didn't have one at home.) The nurse who took us back seemed a little annoyed too. She weighed and measured Timmy - 6 lbs. 13 oz.!!! And 18.75 inches long, exactly six inches longer than birth!
She then took us to an exam room and we had a few minutes to wait so I was able to get Timmy suctioned and comfy. Val came in with Dr. Brown. Soooo love that woman! I just love her spunk and realism. Dr. Brown was great too. Very nice. Not one to rush things, but not one to shoot the breeze for an excessive length of time either. He did a very thorough exam of Timmy and mentioned Timmy's liver. I told him that Dr. Williams had also said that Timmy's liver seemed enlarged, but that he was the only one who had ever noted it. Dr. Brown added that he could feel Timmy's spleen as well. He asked who Timmy's primary care physician is, when he was last seen, if he had ever seen the GI docs, what his bilirubin levels were... It was really nice to have Val there so she could vouch for me. I may have missed the appointment time, but I know when his last appointments were.
Candace drew blood last Friday and I was going to ask Dr. Peterson what the D-bili level was when I had another weight to call in. Well, we got to find out first. Dr. Brown was pretty concerned with Timmy's liver and spleen and put in a call to Dr. Peterson. He was able to get hold of her right away and was told that Timmy's bilirubin had actually gone up, from 5.8 to about 6.2, which shocked those of us (Val, Candace and myself) who have seen Timmy multiple times since right before, right at and after discharge and noticed that he has been looking less green, although not differing much in the last week. This is definitely not a step in the right direction and I'm very glad that Dr. Brown took us in today and got the ball rolling once again.
Dr. Peterson called me around 4pm to let me know that she was working on things from the hospital standpoint to get things set up for Timmy to have a HIDA scan (hepatobiliary iminodiacetic acid scan) to see whether or not Timmy's system is able to pass bile effectively. She gave me the number to call if I'm not contacted in a timely manner, as this is not something we want to wait on. She said that, in general, they like to catch this about the time baby is term and Timmy will be 6 weeks past his due date tomorrow.
I am almost in shock yet not the least bit surprised at the same time. Timmy has hit every anomoly he could along the way. Not sure why I thought this would be any different. Having doctors tell me that the vast majority of babies don't have trouble with extubation, don't end up with more than a NEC scare, don't form subglottic stenoses, don't require removal of broviac cuffs or require anything more than medication to bring down TPN-induced hyperbilirubinemia just doesn't bring the comfort it once did. Anymore, I think it's a warning for me to read up on the next leg of Timmy's medical journey!
Dr. Brown did tell me that they don't see a lot of infants having stenoses from having endotracheal tubes placed, although that is a concern when they are intubated for months; however, they are currently following another little boy who was born at term and only intubated for three days and has even more severe stenoses than Timmy. He is now 10 months. What the plan is for his decannulation, I don't know. Dr. Brown did ask about Timmy's, although he and Val both said they hesitated to ask. I'm not sure why. My guess is that they didn't want to bring up a painful subject if Timmy wasn't looking at decannulation anytime in the relatively near future. They work in conjunction with Dr. Parry but, since Dr. Brown hadn't seen Timmy yet, nothing much was communicated. I'm sure as time goes on, there will be much more correspondence.
The best news from the visit to the pulmonologist was that Timmy's lungs are still sounding stellar. Always a relief. They always have been, but you never know what this little guy might come up with next!
Candace returned again this afternoon and Timmy did indeed gain weight, although her scale showed his weight to be 6 lbs. 10 oz., not the massive 4.5-ounce gain from the pulmonary clinic. Oh well. A gain is a gain! I brought her up to speed with everything and now we just wait for the hospital to call. (Or call them first.)
I did finally get a nap this afternoon. We had a beautiful downpour around 3:00. James and I got the twins down about 15-20 minutes before the hour. He took Trevy out for a ride and I nursed Timmy and put both of us down. So frustrating that sleep wasn't instantaneous, but it was a glorious thing to have the house silent and nothing pressing more than the need for sleep. For some reason, I woke up minutes before Dr. Peterson called at 4:00. Definitely making me feel old if my body won't let me sleep more than 60 minutes consecutively!
And now I'm off for more! The girls went down easily tonight and Landon has been feeling better today. He took a long nap and looked like he could have gone much longer. Hoping he is out for the night!
2 comments:
Oh poor Landon! I feel your pain though and you are not a bad parent...I've held the door on Abby a few times. I've tried the Supernanny bit where you keep putting them back in bed without talking and that kid can go on forever it seems. I think she just likes the contact she has with mommy because she doesn't even cry anymore, just gets out of bed, and will sometimes just take my hand as I lead her back to bed. So needless to say, when I've been sleep deprived, I've held the door, she's cried and freaked out, and then I've opened the door and put her back in bed and that was the end of it. Crazy. But yes, it does make you feel like you are being a bad parent. But if that's the only heartbreaking thing we do to our kids, it can be worth it sometimes. And I like to think I'm not traumatizing her.
I think the biggest struggle is that once I do get Abby into bed, she comes crawling into our bed in the wee hours of the night anyway and then of course she's up when Lochlan's up and wants to help - bless her heart and sometimes that's for almost an hour at a time. I keep telling myself - this too shall pass!
Hope you get a few naps in today. Thinking of you daily.
Jenn
Man, I don't know why, but the nurses getting annoyed that you were late to your appointment really ticked me off. I wanted to call and give them a piece of my mind.
I hope the next couple of days go more smoothly for you!
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