I have really just been so extremely busy trying to keep up with everything that keeping everyone else up has kind of slipped to the back burner. Not too many exciting new developments; however, I have LOTS of pictures to post so here goes the attempt to fill in the blanks over the past week and a half.
Day 83: Monday, July 12, 2010
Cassie had Timmy again that day. James and I weren't able to attend rounds together but, since I had just been in the night before, he still went in by himself. Since he is only able to go in a couple of times a week, it's hard for him to know what is new day to day so he didn't know just how excited to be that Timmy was officially off the ventilator. It was one of the first things I noticed when it was my turn to go in later that afternoon. The only tubing Timmy has now is to provide the moisture that our noses usually do and to give Timmy a little extra oxygen when needed. He was only on 28% when I went in. Just two days post tracheotomy and doing so well!
Over the last few months, all of the stickers on Timmy's name tag have slowly fallen off one by one.
Since he now has a Pooh, Tigger and Piglet and tigers have become his theme animal and I just happened to have Pooh stickers at home, I replaced the dinosaurs. He can't have a plain name card!
That night, Chris had Timmy again. There were a few times as she and I were sitting there that I couldn't hear all of what she was saying. The moisture tubing sounded like a wind tunnel. Soooo loud! I was very impressed that the babies in the room could sleep through it. (Although, in our defence, the little lady across the room had quite the cry. She LOVES being fed and being held and lets everyone know on a regular basis. Yes, she's very cute, but her mom is sure going to be tired when she goes home, which should be soon. She just has spells due to reflux but she is about term now (if not already) and is otherwise clear for discharge.)
Dr. Parry had been earlier that night and commented on the twill ties. Chris told me that he is fighting for Velcro. I was impressed that he would stick with it, but Velcro does make more sense for a little guy than string to tie the trach on. I remember wishing him luck in that endeavor. The NICU people seemed pretty set in their ways.
Timmy's weight was down 20g - 2930g (6 lbs. 7 oz.) from 2950g the night before. Not terribly surprising after surgery. Oxygen was set at 35% and feeds went up to a full ounce at midnight. I had to leave shortly after that feeding. I hadn't realized just how tired I was until I was holding the feeding syringe and let it dip three times doing the head bob. Fortunately, I didn't dump it all over Timmy. I got the feeding accomplished, Timmy kissed and settled back in his bed and headed home.
Day 84: Tuesday, July 13, 2010
It was a late night getting in. Landon kept popping out of bed. It has been so hot and humid lately. Every person I know is starting to feel the desperation for monsoons to start. I think it has affected the kids' sleeping habits as well. They get up a little earlier - usually not much past 7am - and don't settle down until later - often after 9pm. Consequently, I didn't make it into Timmy's room until 10:30pm. He was sound asleep when I arrived so I headed off to pump.
Chris had Timmy and Axel again and when I returned to the room, she was heading back over to Timmy from Axel's part of the room. Timmy's monitor died. No pushing of buttons or unplugging and replugging could get the thing back up. Melissa came in a few minutes later and tried jostling wires as well. No luck. Allison was in charge for the night and came in to see what was going on. Since Timmy's monitor wasn't working in the room, it couldn't transfer his data to the computer screens out in any of the monitoring stations.
There was some discussions about moving Timmy to another room. So sad. Timmy has been in the third spot in room 4206 since the big move back in May. The room is toward the front of the unit and he also has a nice window seat. As they say, change is hard, so I was inwardly relieved when someone had the thought to use one of the transport monitors for the time being instead of moving Timmy and all his paraphernalia.
The transport monitor worked just fine and I was able to hold Timmy for a few hours. It was one of those nights where he was wide awake from about 10pm to 2am. So fun to watch his blinkety little peepers looking around and get to play with him a little. As much as I hate him having a trach, it is unbelievably sweet to get to watch him move around at will, not having his head movements restricted by the direction the ET tube was facing and get to see all of his face without the tube tape. Well, most of it. He still had the feeding tube. So frustrating that Dr. Parry would give the okay for breast/bottle feeding right after the trach was put in only to have the NICU doctors reverse that. It really never made sense to me. Watching how Timmy went after the binky when it was dipped in breastmilk made me want to just yank the curtains closed and let him try. Looking back I wish I had, but, at the time, I went with the rules, not wanting to risk anything with Timmy.
Timmy's feeds went up again - 34mls at midnight. Weight was also up by two ounces to 2990g (6 lbs. 9 oz.) There had been some discussion during rounds regarding fortifying Timmy's milk to give him more calories. Nothing set at that time, though.
I did finally get a picture of Chris with Timmy. Hard to believe she's taken care of him all this time and for some reason it never crossed my mind that I didn't have a picture of her with him!
Day 85: Wednesday, July 14, 2010: 42 Weeks Gestation - 10 Points Dr. Parry!
Wednesday started off well. Bridgette came over to do laundry and saved the day by giving me the opportunity to shower and run more milk over to the hospital. I had forgotten to take more in the night before. It goes pretty fast when baby is taking more than one ounce q. 3. It may not sound like much, but I am still taking in milk from the beginning of May. Timmy was about three weeks old and my milk supply was such that I was averaging about one combined ounce at each pumping session.
Ashley had Timmy during the day. Nothing new to report from rounds. The had not decided to fortify Timmy's milk yet at that point, but no other major developments and still no one had heard exactly when Dr. Parry would be taking Timmy down that weekend to attempt removing the trach. (I asked each nurse multiple times. Turns out they were all just as in the dark as I was.)
I held Timmy for a little while and then had to get home because Bridgette needed to head off to work and I wanted to see James before he left for Bagdad. (The Brimhalls own a cattle ranch and periodically a group of them will go out to clear trails.)
One more cute video for the road.
It was a little bit of a rough afternoon. All I could think about was that I wouldn't get to see Timmy that night because James was gone and I couldn't leave the kids home alone asleep by themselves. I didn't want to call and ask someone to come sleep at my house for four hours in the middle of the week. I consoled myself that I had at least been able to see him that morning and would just have a little more time to get the older kids to bed on time, the house picked up, blog caught up and maybe actually get to bed a little earlier myself.
None of that happened because what happened was even better! Around 6:00, there was a knock on the door and my angel appeared yet again in the form of my mother-in-law. She was going to watch Yvonne's girls that night, but Derek had decided to take them down to his mom instead so Ruth and Tesa thought they would pop on over to our place early and see if I could use any help. I literally wanted to cry. What was I'm not going to get to see my baby tonight suddenly became I'm in early!!!
And a beautiful thing it was. I walked into Timmy's room around 9 positively euphoric. I had told Jenny the night before (she was in one of the neighboring rooms) that I might not be in Wednesday night and it was great to not only be able to be there, but be there a good hour before I had been making it in.
Timmy was resting peacefully again when I walked in. Jenny told me his weight was at 2880g. After surgery of any sort, some weight loss is to be expected and he had had a couple of big diapers so we were still looking okay. She also told me that Dr. Parry had stopped in again to check on Timmy and had said that Timmy's throat felt "soft" so he was pleased with that. About that same time, I had made it to Timmy's side and looked at his ties to find that Dr. Parry had scored again with Velcro ties. It would appear the man has a pretty big say in his patient's care.
The kicker came right after that when Jenny said that he had asked "how mom is doing with breastfeeding." She told him that the doctors had nixed the idea for fear of anything going wrong with the trach, as it is not sutured in because it's only temporary. They had also used the excuse of being more afraid of anything happening because I was always in late at night and no one would be around to replace the trach should it come out. He told Jenny that that was the most ridiculous thing he'd ever heard.
I have blogged the rest of this incredible event in the previous post, so summing up, we got to try breastfeeding that night. No luck, but Timmy didn't seem to dislike the idea, just not want to try to wake up. Believe me, after months of pumping and just wanting the opportunity to give Timmy a chance to try breastfeeding, three tries was definitely not three strikes we were out, just three tries closer to him being able to latch on! No sadness that night, just so excited to be where we were.
Day 86: Thursday, July 15, 2010 - Breastfeeding Success!!!
After not getting home until 5am, I was too exhausted to make it back to the hospital for rounds. I climbed in my bed with Trevy and my mother-in-law let us sleep as long as we could. Sad to report I only made it to 10:00. Amazing what your body can do. I had pumped right before leaving the hospital so I gave myself at least 4 hours to sleep. I got about 5 before my body woke me up.
I was hopeful that I might be able to catch Timmy awake sometime during the day and actually work on the breastfeeding. His feeding schedule was 9, 12, 3 and 6 for the day so I headed out around 11:40, calling his nurse to let her know that I was on my way and to ask her if he was awake and if she could hold his feeding until I got there.
Sandy had Timmy again. I was soooo glad. I really like her. She was so supportive, as most everyone has been. She had already done Timmy's cares, so he was ready to go. However, the eye doctor was scheduled to check Timmy's eyes again so we had to wait a few minutes. It's a very fascinating yet disturbing procedure to watch. Unfortunately, Timmy still possesses some retinopathy of prematurity (ROP), stage 1. Which basically means that part of his retinas are still avascular (lacking blood supply). Things have consistently been improving so Timmy will continue to have weekly checks at this point and we will hope that the ROP resolves completely on its own.
Following the eye exam, there were no further delays. Sandy got the curtains closed around us, I got Timmy in position and in less than a minute he was latched on and actually nursing. I cannot quite express everything I felt at that moment - sheer elation that Timmy could nurse, such pride that he was so quick to figure it out, relief that I hadn't given up the pumping when my milk supply dropped weeks ago... I wanted to cry and I wanted to run around the unit screaming our good news at the same time. It was truly a magical moment.
After a few quiet minutes with Timmy, Sandy came to the curtain and poked her head around to check on us, asking how things were going. I told her that Timmy was latched and let her come see for herself. Did I mention I am so glad she was on?! She was so excited for us. All day after that she kept telling me and the other nurses that she felt like she was a success for the day, being the nurse who was on when Timmy made such a monumental step forward. There is nothing like having such support from those around you.
Timmy's first feed was only a partial, lasting only 7 minutes at noon so he received the other half by gavage. I just sat and happily held my little guy for another hour or so and noticed around 1:30 that he was rooting again. Dare I try? You bet and wouldn't you know he latched on even faster! I told Sandy when she came back from lunch and I guess we presented a bit of a conundrum because baby's usually eat on schedule and now I was nursing on demand. She wasn't sure how to calculate the "random factor". We decided she would just half the next feeding at 3 as well and go from there.
I practically danced out the door, couldn't wait to let both grandmas know the success we had just experienced. I only stopped long enough to snag another video of what a great sucker Timmy is. You have to love how you can look inside the soothie binkies and really watch babies go at it.
With James's mom able to be with the kids, I was able to run back over for successive feedings and walked in for the 6:00 feeding just in time to see Sandy giving Timmy his clothing options. It was so cute the way he was looking at her, honestly looking like he was contemplating his choices.
Another successful latching on. Still only able to get a half feed in, but he was one tuckered content little guy upon my departure.
As I headed out into the parking lot, absolutely on Cloud 9 that the day had been such a success, I looked at the sky and it was absolutely breathtaking. (I promise not a single one of these pictures is photo-shopped.) 
When you see such a gorgeous sunset after such a great day, all feels right with the world. I wish I could have called Dr. Parry right then. I'm sure Timmy would have come right off the trach. Okay, maybe not.
Doug stopped by to visit and congratulate us on Timmy's latest talent as well. So nice.
The night wasn't an entire success or failure. Timmy's first two feeds at 9:30 and midnight both lasted for 12 minutes - full feeds! However, at 3:00 I couldn't get Timmy to stay latched on very long and he had to be gavaged. I was beyond exhausted to try for the 6am feeding so I took a few more pictures and headed home around then instead.
Day 87: Friday, July 16, 2010 - Prepping for the Detraching
Timmy had two nurses he had never had before on Friday. Both were fabulous, though.
Once again, I was too tired to attend rounds, but made it back in around noon (Mom, seriously cannot thank you enough for making all this practice possible!). I was running a little late and Dawn had already started the noon feeding but stopped it at half so I could try to nurse Timmy. I was a little bummed that the feed had already started, but that didn't last long. Once I made it into the unit and we got situated, Timmy went about his business for a good 25 minutes! Dawn was excited for us too. It has just brought such a change in how everyone views Timmy. No longer thinking, "Why won't he just give up that stupid ventilator? Guess he'll be here for a while." Now everyone marvels that he has taken to breastfeeding so well. I have been told a few times that it is more the exception than the norm for a vented baby to take to breastfeeding so well, let alone nippling at all. That's my boy!
Dawn is one who can truly appreciate this accomplishment. Both of her boys were 30-weekers and neither would ever latch. My heart goes out to her. Unless you have longed and looked forward to nursing only to have that dream denied, you can't really appreciate what a miracle and blessing it is to be able to do so.
Timmy loves to suck on almost anything. He makes it pretty obvious when he's hungry. I thought it was cute when he tried to eat the mask for the humidifier.
Dawn was also very sweet and checked muliple times - I really didn't ask her to every time - to see if anyone had heard when Timmy would be going down for his follow-up laryngoscopy on Saturday. No. She had even been able to talk to Dr. Parry and he couldn't say either. Apparently Timmy was just on the OR schedule as "to be announced". Since that could be anywhere from 7am through late the next afternoon, Timmy was scheduled to be NPO (couldn't eat anything) starting at midnight. However, since he was doing so incredibly well with feedings, he was also scheduled to come off the TPN and lipids at 4pm, days before he should have weaned off with increased gavage feedings. Hooray! While the TPN does a remarkable job keeping babies alive, it is far from ideal. It is harder on the liver and Timmy has had elevated levels of bilirubin circulating in his bloodstream since day 1. Without the TPN, we should start seeing those drop and his color improving pretty soon.
For some reason, Timmy was a bit irritable throughout the afternoon. At around 5pm, I switched places with James's mom to give her some snuggle time with Timmy and the other three kids some mommy time.
I returned at 9:00 to find Lauren trying to find a way to attach a little jungle mobile to Timmy's isolette. The walls aren't all that strong for supporting the weight of a mobile with the angles of pressure is places on them. Happy to say she did find a way, though!
She was also very supportive and encouraging of our breastfeeding efforts. I nursed Timmy as soon as I got there at 9:30. He lasted about 15 minutes. Long enough not to need the gavage. We played for a little while afterward. It has been kind of a rarity to have him awake much when he isn't feeding these days. I'm thinking that the new effort required to eat is taking a lot out of him.
He rooted again at 10:20 and latched right on. Not sure how long he actually nursed as we both ended up nodding off and the next thing I knew it was 11pm. I had hoped to not nurse him again until 11:30 so I could really tank him up right before they cut off the feeds at midnight. Lauren poked her head in around 11:30 to tell me that I should try to nurse him again before he had to go NPO. I felt like we were on some clandestine mission, trying to pull a fast one or something. Happy to report "mission accomplished". Just when I thought Timmy would end up going an extra hour NPO, he latched on at 11:40 for another 10 minutes. What an amazing little boy! (I did debate whether to spend the night and already be there should they decide to take him early in the morning but decided to go home and get some better sleep so I could be a little more alert. Not to mention that holding a very hungry newly breastfeeding baby seemed a little cruel.)
Day #88: Saturday, July 17, 2010 - Detrach Attempt #1
Dana had Timmy again. She has had Timmy for all of his surgeries with the exception of the ileostomy. I love that she is there for him. I called her around 9 to see if she had heard anything from the OR. Not yet. Timmy was doing well. He was hungry, but he had slept from midnight to 6am, per Lauren. Thank heaven! That made me feel so much better. She had also given him a bath. He was getting a bit smelly (I agree - he wasn't smelling so sweet the night before. The trach ties get oozy and rank. They're changed at least once per shift, but that doesn't always cut it.) and she didn't want him going down to the OR stinky. She's so sweet. But she kept our conversation short as her phone started beeping and she thought the battery was dying and we were going to get off.
Her return phone call 5 minutes later said otherwise. The beeping was Dr. Parry trying to ring in to let her know that Timmy was going down in half an hour. Once again, the repeat excitement of Timmy now being detrached as well as extubated got the adrenalin pumping. I told James's mom and she got excited too. I ran out the door and was with Timmy and Dana by around 9:30. Dr. Parry was already in the unit, not yet in scrubs, but I figure physical presence is what really matters in getting the ball rolling.
I was feeling pretty good that Timmy would have his trach out. I rode down the elevator again with Dana and the anesthesiologists. We sat in the holding room for about half an hour with residents and attendings consulting us and each other and going over what was going to happen. It was my understanding that we were there to check the status of Timmy's vocal cords and trachea and, hopefully, pull the trach. I really wish someone could have given me the definite that the trach would be out. Unfortunately, it seemed that most of the medical staff had strong doubts that Saturday would be the day.
And they were right. Timmy went into the OR around 11. It wasn't but maybe half an hour before Dr. Parry came out to the waiting room. So disheartening when you can tell just by the look on someone's face that they aren't about to tell you what you want to hear. Timmy's airway had continued to "scar down", meaning the edema had only increased a little. (It was already cutting off 80% of his airway, so not much more to go.) The first pictures he showed me were taken before he did anything. Timmy's airway looked about as narrow as I had recalled from the week before.
Back upstairs, I tried to swallow my disappointment as much as I could (I really just wanted to cry. WHY does each step of this respiratory journey have to take soooo long?!) and decided to buck up and do what I could for Timmy. He was already alert and crying when I came into the room. Dr. Parry switched out the trach (interesting to see the actual tracheotomy and the trach itself, although I think I would have been fine never knowing) and Dana got Timmy reconnected to the NICU monitors and resettled in the isolette. She told me she would ask the doctors if Timmy could nurse as soon as she got the chance. I figure I was just standing there and I knew where they were so I went and asked myself. We were given the green light and I got Timmy in my arms as soon as I could. He took a full feed right off and seemed much more peaceful and able to drift off to sleep.
When I climbed into my minivan, overwarmed by sitting on the top level of the parking garage all morning in the baking hot Arizona summer sun, the song playing on the radio was, "If You're Going Through Hell". I couldn't help but thinking how ironically fitting it was.
Very sad to return home with the news. My mom had also driven down to help with the other kids. We were all disappointed, but hopeful that Dr. Parry had said he was just going to give Timmy another week and try again. Preferably Friday next time.
I went back to the NICU around 3pm for the next feeding. My mom came over later to see Timmy without the ventilator and we spent a good couple of hours with him and Dana.
James's mom already had the kids fed and bathed by the time we got home. She is truly an amazing woman. I am so grateful for all that she has done. Nights like those, I especially feel bad for taking advantage, but also a huge relief that she takes the initiative to just bathe the kids and more on with their routine. After an emotionally exhausting day, it's hard for me to keep myself going, even doing the daily requirements.
Both James's mom and my mom were tired by 9:30 too so no one felt obligated to have a movie night and I returned to Timmy's side for another nursing night.
Cindy had him again. I especially liked having her there that night. She is on the skin care team and having the trach ties around Timmy's neck rubs the skin a little raw in areas and she does such a nice job placing the neoprene pads to prevent as much skin breakdown as possible.
He was weighing 6 pounds even that night. Again, between all the work he's now doing to get his food burning more calories and undergoing another 12 hours without feeds, not a big surprise or concern. Especially once we got the feeding underway. Timmy latched on for 20 minutes on each side right off. Forty minutes! I was scared that she would tell me that he must be snacking or that he might be having trouble getting enough if he was spending that kind of time nursing but, instead, Cindy told me she was very proud of him. So impressed with his stellar performance. And she wouldn't be surprised if he slept for the next 4 hours. (He is ad lib when breastfeeding but still shouldn't go more than 4 hours between feeds.) Sure enough, he zonked out until 1:30am. He took another full feed then, only about half an hour and slept another 4 hours to make it to 5:30am. We were both very tired by that time and I could only stay awake long enough to latch him on before doing the head bob. Apparently he was a little tired too so we only made it to a half feed. On the whole, though, not a bad night!
Don't know why I never thought of a profile pic before. I really like the way this one turned out!
Sunday, July 18, 2010 - A Nap!
A huge thanks to both moms for all their help getting the kids ready for church - we were even early getting there! - and getting us through sacrament meeting. In spite of all effors, we inevitably make a couple trips to the bathroom during the course of the first hour. Such fun. James's mom then went even above and beyond filling in for the Primary pianist. I'm telling you, the woman has skills!
After church, she and I got the kids fed and down for naps. I took Trevy into my room with me and, glory be, she fell asleep so I fell asleep too. Haven't been able to nap for a while now. It seems that whenever someone is here to let me nap, one of the kids always has a meltdown and won't leave my side. I know they are all desperate for mommy's attention and I hate to try to push them away so I can sleep. At the same time, there are times when I'm just so exhausted I think it's meaner not to push them away.
Once again, my body woke me up after about an hour and a half. Oh, the joys of pumping! But not going to complain because I can pump.
I was finally able to get in touch with James around 4:30 and they were just leaving Prescott, a good 4 hours away, so I asked James's mom if she would mind and headed over to feed Timmy one more time while she was there.
Marieann had Timmy for only the second or third time.
I was very anxious to try nursing Timmy as soon as I got there because she had been giving him bottles for the first time that day. Cindy and I had talked about it the night before. She really didn't like having to put a feeding tube back down Timmy's throat. I was a little hesitant that he hadn't been breastfeeding for very long and might have a preference for the "easy" food. But, at the same time, I hate having something shoved down his throat too if it doesn't need to be there. I have never had problems with any of the other kids with regards to switching back and forth between breast and bottle from day 1. I determined that if he had bottles during the day and fought the breastfeeding that evening we could cut out the bottles. Thankfully, such was not the case. So we are officially through with gavage feedings. Hooray!
On my way back, I ran into the Summerkamps and was able to get the update on Dakota. He had developed thrush and stopped wanting to take any feedings. Poor little guy. He was so hungry, but it hurt to eat. He was put on Nistatin for a few days and responding really well. We are all really hoping that our little guys are home next week. There is something very daunting about hitting 100 days in the NICU.
Jenny was back again that night. She had Timmy out of his isolette and was playing with him when I got there. It was so cute! He was working hard rooting on her hand. No luck.
Of course there's a video to go with it!
Our stellar little feeder was back up to 6 lbs. 5 oz. Holding steady. Such a relief since you can't exactly measure how much a baby is getting by breastfeeding.
Day 90: Monday, July 19, 2010
Timmy got to meet another new nurse. Cassie was there, but they have split Axel and Timmy. The assumption is that some of the nurses are a little nervous about taking care of two trached babies. However, Timmy doesn't have a ventilator to pop off of and Axel's mom is there a lot and can reconnect him, so not sure that's a great excuse. At least we still get to have Cassie in the room!
Karen, coincidentally one of Jenny's preceptors, was in taking care of Timmy during the sunlight hours. She told me that he had had his repeat eye exam. ROP still present, but slightly improved. Another repeat scheduled for the following week.
After his retreat to the ranch, James took the kids for the morning so I could spend more time at the hospital with Timmy working on breastfeeding. He continues to impress with his nursing abilities. He nursed for 50 minutes at his 9am feeding. Incredible! I got to see some of the milk dribble out so I know he's getting something. Aaahhh...the beauty of being able to sustain your own baby. Ironic that Karen had picked this outfit for the day.
On my way out that morning, I got to see both Karin and Mary Ann. Mary Ann is usually on and prefers nights so she and I like to joke that we must be hallucinating to see the other there when the sun is out.
Karin asked how the breastfeeding is going. I love that everyone is so anxious for us to succeed with this and only has positive encouragement to give every time. I told her that he had just eaten for 50 minutes and she was astounded. She told me that he is the first trached baby they have ever had breastfeed. (Maybe the first they've allowed...?) I said, "Really?" And she confirmed that he's the first she's seen and she has been there a little while. It made me so proud. I hope Timmy's story will be able to inspire other moms and I sincerely hope that, though he may be the first, he won't remain the only baby to breastfeed with a trach.
That night was a bit crazy. Jenny was on again. She hadn't had a chance to weigh Timmy and I still have yet to ask what his weight was that night.
It finally rained a good rain while I was there. Complete with the lights blinking out for a minute. I have often wondered randomly over the past few months just how many generators a hospital has to have in case of a power outage. My guess is A LOT! Everything came back on right away, so not a worry, just a lot of beeps as the monitors that were set to off all came on as well.
The best part of that night was getting to pick Timmy up from his isolette and carry him to the window. Not that he really cared about the rain, but it was his first monsoon. Jenny and I had done a little rearranging of Timmy's corner prior to the rain and it was much easier to take Timmy out of bed on either side. The best part was that we were able to move his humidifier to the window-side of the bed, thus allowing us to move my snuggle chair to the same side and away from the curtain dividing us from Axel, thereby allowing us to avoid the frequent bumps against the curtain. So nice.
It wasn't a particularly stellar breastfeeding night. Once again, Timmy latched on and nursed long and well during the first feeding or two, but then things get hazy as I got more tired. I know I fell asleep at least once while nursing him.
At 5am, however, things got pretty busy in the room. Two new admits. One a 25-weeker weighing 610g (1 lb. 5 oz.). I waited for the initial rush of admitting to calm down and left around 6 to make it home before James had to leave for work. It brought back a strong flashback to three months ago when Timmy was born. My heart goes out to the parents. (I have since learned that this is their second - and final - time going through this.) Knowing how far their baby has to go in order to come home...it's going to be a long road. Hoping that they don't encounter any of the bumps we've had. Timmy was a 29-weeker so we were a month ahead in the game. I've been ready for him to come home for months now and cannot imagine adding another month of NICU time.
Day 91: Tuesday, July 20, 2010
James's half-day off just switched from Thursday mornings to Tuesday afternoons last week. It was so nice to have him come through the door at noon, put kids down for naps and be able to run over to the hospital to nurse Timmy during the day. Not to mention that all the pictures look so much better with natural lighting.
Marieann had Timmy again. She had finished the rearranging of Timmy's corner and it was much more functional. The new Symphony pumps finally arrived so there is now one in every room. Since there are only two of us in our room currently pumping at bedside, we have confiscated the mobile pump as well and each have our own now. Ah, the beauties of convenience!
I have finally become comfortable with changing Timmy's clothes as I please. Guess some of the nurses feel the same way because this little outfit I put on him only stayed on about 4 hours. Glad I got some pictures!
He was fidgety for a few minutes uuntil I wrapped him up with his tiger and then he snuggled right down. I LOVE the way he grabbed onto the blanket in these pictures. So sweet. He's just such a sweet little boy.
Francesca had Timmy that night. I love having her take care of Timmy. She was one of his first nurses and then she became a primary for the Goerckes and was in our room for several weeks even though she wasn't taking care of Timmy. I miss those nights. There was so much hope and optimism then and everyone in the room had been together for a while. We knew each other, we were comfortable with each other, we supported each other... It's been nice getting to see Francesca again. She is working on talking her husband into Facebook, but so far it's a no-go.
We got a number of visitors that evening. It's been fun getting to know people around the unit. The best surprise of the night was a visit from Melissa, Timmy's resident throughout the month of June. I have been hoping to get to see her again and that she hadn't forgotten about us. I know she called a week or so ago about an hour before I was able to make it in. I've tried to make sure I'm at the hospital by 10:00, as that's when I told her I'm usually there, so I wouldn't miss her if she ever got a chance to pop on up. Tuesday night she was headed to her car late and just thought maybe, just maybe, she might catch us. And she did! It was great to finally get to take a picture of her with Timmy and to get her caught up on all that's going on with Timmy. I truly admire all that she does. Don't know how she always looks so alert when she's up for so many hours. She would always take the time to come talk to me if she knew I was in the unit, just to make sure that I knew what the plan was for Timmy and find out if I had any questions or concerns. To me, that's a sign of a truly great physician.
Francesca and I chatted for a while after everyone left. Her oldest daughter just turned 11 on the 5th of July and had her first slumber party. I must admit, I'm a little apprehensive about that. I think we'll wait a few more years anyway.
At one point, Timmy started sounding very congested and I asked Francesca if I could learn to suction him or if there was a reason I couldn't. She didn't think so so she taught me how to keep everything sterile and clear Timmy's trach. I hadn't planned on Timmy still having the trach, but, going on 10 days, I figured it wouldn't be a bad thing to learn rather than forcing Timmy to wait if his nurse was busy. We also weighed Timmy during one of the suctioning/cares procedures and he weighed 1810g for the night. Down a little, but still within range.
I also learned that Francesca has only been a nurse for a year and a half. She has moved around the hospital and the NICU in different positions, but only recently decided to become a NICU nurse. And you never would have guessed! She is very knowledgeable on many subjects and procedures and the calmness with which she performs her job makes you think she's done if for years and could do it in her sleep now. Never a worry with Timmy in her hands.
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