Meltdown

Today was a really tough day for me. Last night when he was weighed around midnight, he showed a gain of 3 grams. I was hoping for a lot more than that, but I didn't get upset. I knew he had gained a little more than that because the previous weigh-ins were done with a feeding tube and pulse oximeter. Last evening when I came back for his weigh-in and feeding, the nurse told me that he had removed his feeding tube (that went from his nose to his stomach) and his cannula. He removes his cannula All The Time. I often find it in his mouth. The doctors have said no more room air trials, but evidently Oliver didn't get the memo. He also had removed some of the leads to the monitor we'll be taking home. He has been hooked up to TWO monitors since Tuesday - yay for more wires (not). Last night the nurse got permission from the doctor on duty to not hook him back up to the second monitor (since it had proven that it worked just fine the previous 3 days) and to skip putting another feeding tube in since we hadn't been using the feeding tube for anything but his medications (iron once a day, vitamins once a day, sodium chloride every 6 hours, and diurel every 12 hours). Last night I started giving him his medications by mouth since the feeding tube was removed. I had to mix the NaCl in some of my milk to get him to take it, and even then he wasn't exactly thrilled. I weighed the pulse oximeter, and it weighs 3 grams so I figured he had gained at least 6 grams since the previous weigh-ins were done with that on. I wasn't sure exactly how much the feeding tube weighed.

The day Nadia was discharged she had lost 55 grams. She hadn't started gaining weight yet (was under her birth weight). The day before Ian was discharged he lost 50 grams, and the next morning I was told if he had gained *any* weight, he would be discharged. Through a nurse's extra efforts (weighing him on multiple scales, etc.), she was able to record a weight gain of 5 grams, and he was discharged (again below his birth weight). So I thought that since Oliver had gained a small amount two days in a row, they might discharge him. Nope. They want to see him gaining 18-36 grams a day. This morning they sent a different doctor to talk to me. She usually works in another NICU and is also a lactation expert. She seems like a really nice person, and she had empathy as she had preemie twins not that long ago. She suggested that we put his NG tube back in and give him supplements for a couple of days to get his weight up and then try again to get him to gain weight without supplements. The upside of this plan is that we would avoid the use of bottles, and the downside is that it would lengthen our stay in the NICU. After thinking about it a little bit, I told the nurse I'd rather just use bottles to supplement because at this point I don't want to do anything that might extend our stay in the NICU.

I then went to grab an early lunch, and while I was doing that the doctors did their rounds earlier than usual. I had intended to be there for them. The nurse told me that they wanted him to be weighed before and after I nursed him each time to see how much he was consuming and that I wasn't allowed to nurse him sooner than every 3 hours. This news put me over the edge, and I left the NICU sobbing. I tried calling Paul, but his phone was on vibrate. I came back in the NICU and a chaplain came over and talked and prayed with me. Then I was called into a meeting with a lactation nurse, social worker, and a doctor. They expressed concern that I'm not getting enough sleep. To appease them I said I'd check back into the Ronald McD House. I slept better last night as I did have a pillow and a blanket, but my back was rather sore from sleeping in a chair or couch for two nights. After discussing the pros/cons of each option, I still ended up picking the bottle after nursing option. I asked that first he be weighed at noon (wearing only his diaper like they do at night) to see what he had gained just by nursing alone. It turned out he had gained 8 grams in 12 hours, which was as much as he had gained in the pervious 48 hours. Just through nursing he was getting much closer to their goal. They did pre and post weights with the next two nursing sessions. Can I say how much I detest having everything related to nursing being quantified? From those weight meausurements they decided to offer him 20ml by bottle after I nurse him. During the meeting in the conference room, I objected to the plan to go back to just following the clock. The other doctor agreed with me and said she'd get his doctor to change the orders as it makes no sense to wait to feed him if he's crying and rooting at 8:30am and isn't "supposed" to be fed until 9:00am.

I checked into the RMH and had an early dinner over there (leftovers from their refrigerator) and then came back over to the NICU only to find out they were moving us into the demo room. I also found out no one had been in it last night. It was closed for cleaning. I would have cleaned it myself if it meant I could have had a shower and a place to sleep! Oh well, at least Oliver and I will be rooming together tonight. The nurses will be giving him the bottles for now because I feel like I'll be too upset to give him one although I need to get over this hang-up. In my head I believe I made the right choice because we'll be discharged sooner, but emotionally it's really hard, especially since the first time I went to nurse him (6pm) after his first bottle (the previous feeding), he wanted nothing to do with nursing. The nurse said to try again at 7pm. He did better then, but it took a lot of work to get him started and he didn't last nearly as long as he had been prior to introducing the bottle. I was worried he might prefer the bottle months down the road. I wasn't expecting there to be an immediate change with him nursing. I think it had to do with the fact that he wasn't very hungry. Hopefully the bottle thing will be VERY temporary even though I do have quite a supply of my milk. They said yesterday they need us to take some home because my milk is taking up 4 times the space they typically allocate for each baby's milk in the freezer. Paul will be bringing coolers tomorrow.

Even though it feels like a failure, I know rationally it's not true. It's not that I'm not producing enough milk. Also, it turns out my milk has far more calories than the average woman's. The average is 20 calories per ounce. They had assumed with the fortification they were adding that it was up to 24 calories, but it turns out my foremilk has 27 calories an ounce and my hindmilk has 33.1 calories an ounce! They tested my milk, and this was the best news I got all day! I had been pumping one ounce off before nursing him. They suggested this evening that I start pumping 1.5 ounces off first to make sure he's getting the 33.1 calorie hindmilk when he nurses. I think part of the reason it feels like a failure is that I have been putting SO much time and energy into nursing him the past 10 days. I have spent 11-13+ hours a day pumping and nursing (I'm including the total time it took each session from getting the privacy screens set up to cleaning up the pumping supplies). I was willing to do all that toward the goal of exclusive nursing. It's very discouraging to work so hard toward a goal and then have to settle for what the doctor termed "plan c" (the least desirable option in his mind as well). This has made today a really rough one for me. I've cried a large percentage of the day. I'm sure tomorrow I won't cry nearly as much. I kept thinking of the saying "the end doesn't justify the means," and I know that doesn't really apply in this situation, but it did strike me that doing something I didn't want to do just to achieve the end I really wanted was a very unsettling experience. I'm hoping that tonight or tomorrow night will be Oliver's last night in the NICU. Hopefully they'll discharge us on Saturday or Sunday. We shall see.

Oliver had his first OT appointment today. They will keep following up with him for a few months here at the hospital. She gave me lots of suggestions, and hopefully I remember most of it because I wasn't exactly in the best frame of mind at that time. I thought all the arching he does was an "Oliver" thing, but it turns out it's a "preemie" thing. I also had conversations on the phone today with a nurse from medical assistance and the company who is supplying his oxygen (the man brought a second tank over yesterday since Oliver is now at a higher level and also since we might go home on the weekend when it's harder for them to deliver the large tanks to our house). I'm hoping his birth certificate will arrive in the mail asap because we need that to enroll him in our health insurance plan, and that has to be done by the time he's 31 days old, which is not that many days from now. In about 10 days he'll have an eye exam to screen hin for ROP. Hopefully he doesn't have this, but if he does, it's better to catch it early when it can be treated through lasers.

Tickets and Grams

Having spent so much time in hospitals the past few months, I felt the need yesterday to plan some special outings for October and November. I went online and ordered two tickets to see "The Velveteen Rabbit" and two tickets to see an Eric Carle production (A Brown Bear, A Caterpillar, and A Moon). I bought one $5 ticket for Nadia for each as well as one $15 ticket for Paul. They should make nice daddy/ daughter dates. I also bought 4 tickets to see the Ringling circus in November (that wasn't cheap!) and 4 tickets for $25 to see a play called "The Timid Dragon." I saw some productions in the spring that I thought the kids would enjoy ("Beauty and the Beast" and "Puss in Boots" for Nadia, "How I became a Pirate" for Ian, and "The Stunt Dog Experience" for both of them), but we're not 100% sure where we'll be living next semester, so I'm holding off on buying tickets for now. I was thinking of taking Nadia to see "Mary Poppins" in Hershey in December until I saw the prices. Paul and I saw it in London in 2002 and thoroughly enjoyed it, but I'm not ready to spend that much money for a four-year-old to see it.

Cell phones are supposed to be turned off in the NICU. When I got booted from the demo room late yesterday afternoon, I decided to leave the property to get dinner. I forgot to turn my cell phone on again, and Paul's dad was trying to reach me because he stopped by the hospital with Nadia and Ian on their way back to our house. Thankfully I ran into them as I was walking back into the hospital (as they were walking out) and I was able to hug and kiss and talk to the kids for about 15 minutes. I would have been so upset with myself if I had missed out on seeing my kids because I forgot to turn on my cell phone. It was really nice of Paul's dad to stop in so I could see them a little bit. Paul plans to bring them for visits on Saturday and Sunday if Oliver isn't discharged before then.

Last night I mostly slept on a couch in a lobby. The couch was big enough that I could stretch out, and I did locate a blanket. I didn't find a pillow though. The lights were never turned off in that lobby so I had trouble sleeping there after Oliver's 5am feeding. I tried the NICU waiting room again and actually found that to be more comfortable as the chairs in that room turn into recliners. Also that room was much darker. If I'm still here this weekend, I'm going to ask Paul to bring a pillow. This morning when I went to the car I brought back a toothbrush and toothpaste to carry in my bag with me. I used my hairbrush and deodorant in the car. I also brought back a pair of socks as my feet were really cold last night. Tonight I plan on sleeping in the NICU waiting room. I left the blanket I found at Oliver's bedside so that I can keep using it until he's discharged.

We'll see what the doctors say on rounds today, but I am encouraged because #1 he's now only on .0125 oxygen (compared to 0.5 the past two days) and #2 he gained 4 grams over a period of 16 hours. For some reason they didn't weigh him on Tuesday night. Every other night they weighed him at 9pm or midnight. From 6am on Wednesday morning to 10pm last night he gained 4 grams. I asked that they weigh him this morning so we could see what he gained in 24 hours, but the nurse said they always weigh babies at night (then why didn't they weigh him on Tuesday night?). The day Ian was discharged he gained 5 grams, and he had lost weight the day before that. He was discharged at 35w6d on day of life # 10. Oliver is 35w1d today and is on day of life #23. I am certain they won't discharge Oliver today, but I'm hoping if he gains weight again today that they'll discharge him tomorrow. It would be heavenly to sleep in a warm bed with a pillow in a dark room under the same roof as Paul, Nadia, and Ian starting this weekend! In light of his slight weight gain, I am not interested in trying the bottle again. I think he's going to make it on nursing alone. I feel hopeful that he'll gain more weight today as he seems to be doing better and better with nursing (lasting much longer). Hopefully I'm not setting myself up for a big let down this evening.

35 Weeks

It may seem odd to still be keeping track of his gestational age since he's on day of life 22, but the doctors certainly deem it still important. They refer to it as his "corrected age." I made it to "9 months" pregnant with Nadia (36w), but this time I missed hitting the eight month pregnant mark by one day. Seeing how much trouble he's having with breathing, I am pretty certain he would have ended up in the NICU even if he had been born at 35w. I kept telling Paul that life would calm down either the last week of August or the first week of September. I had figured that either Oliver wouldn't be born until then OR if he was born earlier than that he still wouldn't come home from the NICU until then. I kept thinking that the first week of September was the most likely scenario and that the last week of August was the best case scenario. It seems I was probably on target with that although his discharge date is still unknown. I am getting the boot from the demo room today. I am grateful I was able to be here for three nights. Since I am nursing him more frequently (last week it was every 3 hours), I don't think it makes sense to check into the Ronald McDonald House. I'm just going to put my suitcase in the car, leave a few things (ex. the boppy) at his bedside, and then carry a few things (ex. this computer) with me at all times. I'm planning on sleeping in either the NICU or PICU lounge in between his feedings this evening. I'm hoping the nurse will call me if he wakes up crying at some point because it's hard to nurse on demand when I'm not within earshot of him.

His weight plateaued yesterday. That is better than losing weight, but he has to gain weight to go home. He had one tube feeding yesterday, and thus far today he's had two tube feedings. I attempted to feed him by bottle after nursing him at 7am, but that didn't go well. I wasn't really wanting to give him bottles anyhow so his rejection of the bottle helped me feel more firm in that. The doctor again laid out three options. He said that his least favorite was to introduce bottles because that could lead to a regression with the nursing. He said he was leaning towards doing the same as yesterday (pumping 1 ounce before nursing) in the hopes that he'll gain weight today, but he said I could opt to have more NG tube feedings today - this would be a more sure way of getting him to gain weight today BUT it could possibly lengthen his stay here (if Oliver would have gained weight today without NG supplements) because weight gain with supplements doesn't count in terms of meeting the requirement for discharge. Please pray that I'll have wisdom and also more importantly that Oliver will gain weight. I really, really, really want to be discharged sometime in the next five days. The lactation nurse is meeting me for his next feeding so she can weigh him before and after I nurse him. The doctor told me he doesn't put much stock in those weight measurements.

His oxygen has gone up from .025 to .5. He still has "lung disease." I'm also praying he'll start to show improvements with a decrease in his need for oxygen. I had my training yesterday on the oxygen and apnea monitor. It was rather overwhelming given how physically exhausted I am and also how emotionally distressed I was yesterday morning. I had to work so hard not to burst into tears while the man was explaining everything.

It's time for lunch. The Ronald McD House charges $15/ night, but I got free food there. It seems the cost is about the same either way as I'm spending about $15/ day on meals here at the hospital, but my lodging is free. I can say I'm going to be very tired of french toast by the time he gets discharged as there aren't many options for breakfast. I'm still looking forward to the day when I'm with my husband and three kids, able to sleep in my own bed, and have far more control over what I eat.

Three Weeks Old

My friend, Cheri - the fourth friend/family member to hold Oliver

Yesterday, my friend, Cheri, came and spent 2 hours with Oliver and I in the demo room. She would have held him for more of the time, but his O2 saturation levels kept falling and setting off the alarm. I put him under my shirt, and his numbers would soar up above 95%, which actually is technically "too high." Most days I have been the only one to hold Oliver, but yesterday he was held by three others in addition to me. I wasn't expecting to see Paul yesterday, but he accidently forgot to put the double stroller in his car on Sunday night. He came down and met his dad so they could use the stroller at the Please Touch Museum in Philadelphia today. My friend, Donna, (see picture below) also stopped in for a visit while Paul was here. Cheri was Oliver's 10th visitor, and Donna was the 11th. Eight of his visitors have been family members (2 siblings, 2 parents, 1 aunt, and 3 grandparents) and the other three have been my pastor and two friends.

The first available appointment for Oliver to have a room air trial here in the NICU is October 17. I wasn't happy about that because the doctor had estimated he'd need to be on it for 3-4 more weeks, and October 17 is much farther away. I am being trained this morning on using the monitor he'll be sent home with. He has to stay on the monitor for two more weeks after he goes off the oxygen. I guess I'm going to get very good at dressing and undressing him with wires. I am bummed about this in part because I was looking forward to taking a lot more pictures of him once he didn't have the cannula in his nose, etc, but it seems that will be in place for about 7 more weeks. Usually I treasure pictures of my kids, but I pretty much have avoided looking at any that were taken of Nadia and Ian before they lost all the wires, tubes, etc. I know in the grand scheme of life it's not a big deal, but it's sad to me that I might have to wait until November to get pictures of Oliver that don't include these things. I bought a frame to match the two I have for Nadia and Ian which has a space for a picture at birth and then one for each month from 1-12 months old (13 total pictures). I already didn't know what to do about the birth picture for Oliver, and now I'm not sure what I'll do for the one and two month pictures. I don't exactly want to leave those three spaces blank.

Last night at 9pm I let Paul pick what outfit I put on him. He picked the dinosaur sleeper that used to be Ian's (the one Oliver wore briefly on August 15). I should take a picture of him in it today, but I admit I'm struggling emotionally (in other words crying a lot). His weigh-in at 9pm showed he lost 12 grams. His nurse weighed him again at 5:15am in the hopes it would give us a better result, but actually his weight dropped even more (I don't recall the amount). He didn't have any supplements yesterday, but prior to that they had been adding HMF to the EBM to boost the calories. I know there are benefits to the baby from nursing that only happen when the baby exclusively has breastmilk. I had hoped to finally have one baby who only had breastmilk. No dice. It's fairly obvious why I want to go home considering how many weeks I've spent sleeping in a hospital separated from my husband and other two children. At least I am going to be allowed to stay in the demo room for at least one more night. Even if Oliver gains weight today, he's not going to be discharged tomorrow because the doctor wants to see sustained growth not just one day of growth. He said it might be a few days or maybe another week before he's discharged. I know he'll only be 35w tomorrow, but considering yesterday they started to give me all the discharged paperwork (his prescriptions, had me call the pediatrician to set up an appt for Thurs, etc.), it's very discouraging to now be told it might be another week. Tonight will be my 56th night that I've spent away from Paul, Nadia, and Ian over the past 3 months. I had been hoping that Oliver would be discharged by Labor Day. I guess I should go back to praying about that. I had been praying we'd be discharged today, but that isn't happening.

 

The doctor said we could go back to giving him supplements via the tube or give him supplements via the bottle or have me pump first in case he's not getting enough of the hind milk. I wasn't sure what option to pick. I am torn between not wanting him to have a bottle in light of what happened with Nadia as well as wanting to go home ASAP. The doctor said that giving him a bottle wouldn't necessarily speed up our departure because he might not do well with the bottle either (he stops nursing too quickly because he falls asleep with milk running out of his mouth). I asked the doctor which option he would suggest, and he said he thought we should try having me pump first (just remove one ounce) right before nursing Oliver. 

 

I am not sure if it was just coincidental, but he had his worst nursing session in more than a day. So I told the nurse to give him a supplement. Right now (11am on Tuesday) they are giving him 20ml of my milk fortified with Enfacare by tube. It's his first tube feeding since 6pm on Sunday and his first time ever having any Enfacare.  I just feel like a failure. I know rationally this isn't true. I am producing plenty of milk. I usually pump two ounces out after I finish nursing him. It's not that I don't have enough milk. I have been drinking enough water and pumping enough. He's just too weak and small to nurse long enough to get all the nutrition he needs. I know I'm letting this bother me way more than I should, but I so badly wanted to have a smoother start this time around, and the opposite has happened. When I picture myself nursing my baby, I don't picture all the contraptions that are involved right now - the shield, the pieces and parts that have to be cleaned for the pump, labels for the bottles of EBM, etc. I'm sure I could handle this better if I wasn't completely exhausted. I think I get less sleep in the demo room because the desat alarm wakes me up all throughout the night. The upside is that once last night Oliver did wake up and was crying and I took that as a cue to nurse him whereas before his feeding schedule was 100% based on the clock. I wish I could go to sleep and wake up when the five of us are under the same roof. I also feel badly because it would have been really good for Paul if we had come home today. Not only is he at a crunch time with finishing his dissertation, but he also needs to start applying for jobs as some universities have posted adjunct openings for the spring semester as well as tenure track openings beginning August 2013, and the applications are due in the next couple of weeks in some instances. We only had babysitters lined up through tomorrow. I need to start working on finding people to watch Nadia and Ian on Friday and possibly next week as well.

He Gained Weight!

The nurse asked me at 7pm if I wanted Oliver to be weighed at 9pm or midnight. I picked midnight as I thought it gave him a little more time to gain weight. I began to second guess that decision when I found out at 9pm that they were going to stop his supplements (tube feedings). He nursed at 9pm, but that was it. His last tube feeding was at 6pm. As I was changing his diaper a little before midnight for his weigh-in, he had a small poopy diaper. However wiping his bottom stimulated his bowels and a massive amount of green stuff exited his body. I was really, really wishing I had picked the 9pm weigh-in because I knew his weight had just dropped with all that just came out of his body. However, my fears were quickly resolved when the nurse told me that he had gained twenty grams! WOOHOO! He had lost 12 grams on Saturday so this means altogether he gained 8 grams over the two days. Last night he weighed 4lbs 1.2 oz. YAY!

 

When the doctors did their rounds today, they said that if he gains weight today, he will be going HOME tomorrow, which I think is pretty amazing as he'll be 34w6d tomorrow. His x-ray this morning still shows that his lungs are "hazy." He still has the lung disease (from prematurity). He'll be going home with oxygen and a medication for his lungs. A nurse will be coming to our house on Wednesday, and he'll be seeing the pediatrician at 12:45 on Thursday (if he is discharged tomorrow). If he doesn't gain weight today, then starting tomorrow the doctors will want me to offer Oliver a bottle (of my milk) after I nurse him as a way of boosting his caloric intake. I'm hoping that isn't necessary, but I will cooperate with that plan if he doesn't gain weight today. If that happens, then he'll probably be discharged on Wednesday. Please pray for Oliver to gain weight today!!! I would LOVE to be home with all three children tomorrow night!!!

I have been nursing him every 2 hours whereas up until last night he had been fed every 3 hours. I did skip pumping a couple of times though. It's one thing to pump every 2 hours (when not nursing) or to pump and nurse every 3 hours, but to pump and nurse every 2 hours is just too much. My left side still is far out pacing the right. The gap between the two outputs has greatly increased. The one exception to that was on Friday morning when I pumped at 6am (after nursing Oliver) and I pumped 2 ounces from each side, whereas my usual output is 2 ounces total. Thus far that was a one time occurance (to pump 4 ounces at one time). I'm sure they will be sending us home with QUITE a supply of frozen EBM. I am not certain it will actually be used though if I am able to stick with my goal of avoiding bottles. My aversion to bottles stems from the fact that at 7 months old Nadia went on strike with nursing because she preferred the bottle. I nursed Ian until 14 months even though he also had bottles from four months onward. I really, really, really want to nurse Oliver for at least 12 months so I'm hoping to avoid bottles to make sure he won't decide he likes bottles better than nursing like his big sister.

 

After his midnight weigh-in, I dressed him in a onesie I bought at a consignment shop as well as a sleeper that was a gift from Grandma. It's fun to dress him in his OWN clothes (not that the hospital doesn't have some cute clothes). He only wore his own clothes one other time. For a few hours the morning of his transfer (August 15) he wore a sleeper that Ian wore in 2009. I thought it would be his "transfer" outfit, but they took off his clothes prior to putting him on the ambulance. The onesie and sleeper he's wearing are both preemie size. This size fits him nicely, and my guess is that he'll wear this size for another month or two.

Rooming Together!

I have a love/hate relationship with the shield. I also have a love/hate relationship with the scale in the NICU.  I was happy thrilled with what the scale told us on Thursday night and Friday night. I was feeling very sad and stressed out when the nurse told me at 9pm last night that he had lost 12 grams (4/10 of an ounce). It didn't help that he totally slept through the midnight feeding. It was the first time I requested that he have a full tube feeding. The previous 3 days he had half tube feedings. I felt like crying, but I didn't until I talked with the nurse at 9am this morning. She assured me she didn't think the doctors would be too upset since he had gained 1.5 ounces over the previous two days.

 

When the doctors did the rounds this morning, they didn't make much of his weight loss except they said we couldn't do a day without any tube feedings until he gained weight again. They did give me permission to feed him "ad lib" in the demo room, which means I can feed him on whatever schedule as long as we don't go more than 3 hours between feedings. If tonight's weigh-in shows that he gained weight, they will allow him to discontinue the tube feedings after they do rounds tomorrow. I am REALLY praying he gained weight today. I can't tell you how stressful this is. If it wasn't that I really enjoy nursing, I would definitely opt for bottle feeding as it would make the NICU experience MUCH less stressful because we'd know exactly how much he was consuming. I am trying to look at the big picture and remind myself that the extra stress (and potentially extra days in the NICU) are worth it in the long run. When Ian was in the NICU I ordered a good scale for us to use at home. It measures to the 1/2 ounce. I'm sure we'll be using that for Oliver once we get home.

Last night we were supposed to have our CPR class. It's a requirement if your child is going home on oxygen. We took one when I was pregnant with Nadia, but that was too long ago for them to accept that as meeting the requirement. The class was supposed to start at 8pm last night, but at 7:15pm I was told it was cancelled. I quickly called Paul. The babysitter had already arrived at our house, but thankfully I caught Paul before he left the house. The next scheduled class wasn't until Tuesday at 8pm, and I have been told there is a chance he could be discharged as early as Tuesday. I told the nurse that last night, and so they scheduled a private class for us, which we did at 7pm tonight. Paul's parents picked up the kids here at the hospital at 6pm. We also had to watch 3 dvd's (on SIDS, shaken baby syndrome, and car seat safety) prior to the class. The kids had a great time at the Please Touch Museum in Philadelphia last week; Paul's parents are taking them back there again tomorrow!

Paul and the kids arrived at the RMH around 1pm today. I played with the kids until 2:45 when it was time for me to go to the NICU to nurse and pump. Then I came back and played with the kids some more while also packing up and cleaning my room. When I arrived at the NICU at 3pm, I found that Oliver had been moved from bed #25 to bed #38 - which is in one of the two demo rooms. Both Nadia and Ian spent time in this room. There are two demo rooms in the NICU, but each time (2008, 2009, 2012) I was always assigned to room #38. My mom stayed with me in this room with Nadia. They have reserved the room for me tonight and tomorrow night. If Oliver isn't discharged on Tuesday, I'll be checking back into the RMH. I will be able to get more sleep while in the demo room since we'll be sharing a room. My feet and legs will also be very grateful for the reprieve. My feet have become a bit swollen again from the extra walking between the hospital and RMH. After eating dinner at the RMH, we all came over to the NICU so Nadia and Ian could spend a little time with Oliver again. Paul brought me clean clothes today just in case the discharge is delayed by several days.

Ronald McDonald House

Last night Oliver weighed 4lb 1oz, which meant he gained 1/2 ounce. His usual doctor won't be in this weekend. The doctor who is on this weekend said he was surprised that a 31 weeker was having this much trouble breathing. I told him that even my 36 weeker had a brief stint on the CPAP. It seems my babies have more severe lung issues than are typical for their gestational age. The good news is that the first two have had respiratory problems after being discharged from the NICU (unlike their Mommy who had pnumonia and such many times from the first year of life onward). I was talking to another NICU mom at RMH, and her 27 weeker never needed a ventilator and has been off the CPAP for weeks (she's at 33w now). Upon hearing that Oliver has hypospadias, the doctor asked if I was on the P17 shots. It turns out they are linked. I had no idea! I told him though that Ian also had hypospadias, and I wasn't on the shots when I was pregnant with him. I also told him that two of our son's uncles (one on each side of the family) had hyposapdias. The doctor said it was very unusual for two brothers to both have hypospadias.

Paul and the kids arrived at the RMH around 10am and stayed until 3pm. I was with them for 4 of those hours. I was in the NICU to nurse and pump from 12-1pm. When I got back, I suggested we take naps in my room. There are 2 twin beds in my room. Paul slept in one, Nadia played, and Ian and I slept in the other. Ian would have slept longer, but at 2:20 I couldn't wait to go to the bathroom. The kids really enjoyed the playroom and the playground. They didn't have either of these at the hospital in Harrisburg (or at the Bailey House there). Paul will be back at 8pm tonight for the class in the NICU, and all three of them will come back tomorrow. I am so glad that Oliver and I are so much closer to home, and I'm really praying that Oliver will be discharged on Tuesday! When I told Nadia that Oliver and I might be coming home soon, she told me that she has been praying that Oliver will be strong enough to come home. I could tell she was amazed her prayers have been answered. Then she told me she's also been praying that I won't have any more babies. LOL! My separation has definitely given her a bad feeling towards pregnancy. Hopefully her opinion will change sometime in the next 20 year or so. :-)

Four Pounds!!!

Last night when Oliver was weighed at 9pm, he weighed 4lbs (plus one half ounce). This meant he surpassed his birth weight for the first time, and weighed more than 3 lbs for the first time. What made this really impressive was that he accomplished these feats on the day that #1 he was moved to a bassinet (and it takes more energy to maintain one's own body temperature) and #2 the quantity (ml) of his tube feedings was cut in half due to the fact he is now nursing. On the rounds this morning the doctor said, "He's breastfeeding like a rock star." Way to go, Oliver!!! All that is standing in the way him being discharged is for him to switch to all his nutrition coming by mouth (while still doing well with his weight). Once he gets off the feeding tube, he'll be coming HOME! They'd like for him to be off the oxygen, but it's not a requirement. He's only receiving a tiny puff (.025), but his O2 saturation levels don't stay within the desired range (85-95%) when he's not on the oxygen. He might be coming home on oxygen. Because of that, Paul and I need to attend a class at 8pm tomorrow in the NICU. Thankfully a woman from our church has agreed to come over to our house and watch the kids for about 2.5 hours tomorrow night so Paul can attend the class.

Oliver won't have to do the car seat test in the NICU like Nadia and Ian did because #1 he's too small (the minimum weight for being in a car seat is 5 pounds) and #2 if he's still on oxygen that's another reason he'll have to come home in a car bed. The hospital will rent a car bed to us for $25, and if we return it then we get $10 back so it will only cost $15 in the end. I've never seen a car bed before. I'm hoping Oliver can come home without oxygen, but I'd rather be at home with him on oxygen than extend our stay in the NICU. The doctor said he thinks Oliver can come home in the "early part of next week." WOW! The initial estimate (at birth) was that he'd be in the NICU for 6 weeks (until he hit 38w). On Monday that was changed to 4 weeks, but if he's discharged on Tuesday, that would mean he would have only been in the NICU for 3 weeks! Woohoo! What a relief it will be not to need to find more babysitters for Nadia and Ian, especially as several of the ones we've used are college students, and they are going back to school next week. They said I can probably stay in the "demo room" on Sunday night and Monday night. They have two rooms in the NICU in which parents can sleep in the same room as their baby. I stayed in the demo room in 2008 and 2009. I'll definitely get more sleep those nights as it takes time to travel to and from the RMH before and after each feeding. Paul was supposed to be giving a talk at PSU on Tuesday. Today his advisor gave him permission to reschedule that in light of the fact Oliver might be discharged on Tuesday. Please pray that Oliver will continue to improve in his nursing skills so that we can come home in a few days!!!

Nadia and Ian were at Paul's parents' house on Wednesday and Thursday, and unforutunately Nadia left her beloved pillow at their house. It was a challenge last night to get her to sleep without it. Today I met Paul's mom in a town about 15 minutes from the hospital to retrieve the pillow. I also stopped at a consignment shop in that town that I haven't ever been to before although I've wanted to go there for years. I bought things for each of our three children. Nadia was over the moon regarding the $5 bag of princess dress up goodies I got her (fancy shoes, tiaras, dresses, etc.). Paul had to leave PSU early because Nadia had her first ever yeast infection. Today was actually her very first doctor appointment that wasn't a "well baby/child" visit. Not bad considering she's 4 years old! It was Paul's first experience taking the kids to the doctor by himself. He took them from the doctor's to the RMH so they could play, see me, eat dinner, and of course get the pillow to take it home. It was great to see the kids for a little bit. They are going to come down for longer visits tomorrow and Sunday. There is a nice play room as well as a playground here at the RMH. The kids didn't want to leave when it was time for them to go home. Ian had a total meltdown because he was really enjoying playing with a pirate ship toy.

50 Months Old

This won't be as thorough as most months since I haven't been around the kids nearly as much as usual over the past three months, but since I did recently spend a week at home I am at least able to share a little of what Nadia is like these days. I skipped this monthly post on July 24, and I missed two posts for Ian (July 12 and August 12). Next month's should be more thorough!

1. She's just started talking about the content of her dreams at night. I find it very interesting!

2. She's also just started to attempt to tell jokes. They are funny only because she *thinks* they're funny. She creates many combinations of two things that don't go together and considers that to be a joke - such as "Mommy put some jelly on the water."

3. She loves to pretend a princess is having a birthday (ex. Belle, Ariel, etc.).

4. While I was in the hospital she got into the habit of walking into our bedroom (after Paul had gone downstairs) and falling asleep in our bed instead of her own bed. Paul carries her to her bed when either Paul or I are ready to go to bed.

5. She's been doing better lately with drinking water. Milk is still her favorite drink, of course!

6. Her favorite shoes right now are a pair of (princess) Tiana shoes that I bought at our neighbor's yard sale for $1 in June.

7. She's still very curious about how to spell words. She often asks Paul or I to spell a word for her. She also is very motivated to work on learning to read. She's been asking me to teach her to read. I told her we'll get back to that once Oliver comes home.

8. Her most favorite princess is Belle (Beauty and the Beast) and her second favorite is Ariel (Little Mermaid). She still dresses up in a princess dress almost every day. I let her wear her Snow White costume to the babysitter's house earlier this week.

9. She's getting better and better at singing on pitch. One of my favorite moments thus far this month was when Nadia and Ian were both singing praise and worship songs with great gusto in the car (along with a CD). Nadia knows the words to many songs!

10. When I do something that Nadia likes (ex. make brownies with her and let her lick the batter), she usually says something along the lines of "You are the best Mommy ever." Melts my heart!

So long, isolette!

Oliver was able to maintain his body temperature, and he still gained some weight. The doctors want him to gain 1-2% of his body weight each day. He's back to his birth weight. Maybe he'll hit 4 pounds tomorrow! Because of these successes, he was moved from an isolette to a bassinet this morning. This makes changing his diaper and getting him dressed somewhat easier. I say somewhat because he still has six wires/tubes attached to him (oxygen, feeding tube, respiration rate monitor, etc.). Putting a onesie on him is rather difficult for me with all those wires. Paul said that a woman from church dropped off a baby gift yesterday - a preemie size outfit for Oliver (not a sleeper but an outfit that included a onesie). I can't wait to start dressing my doll baby up in his own clothes! I ordered a few preemie size outfits from Carter's a few days ago. I would be tempted to dress him in his own clothes now, but he went through MANY outfits yesterday. At least two times all his clothes had to be changed due to a leaky (poopy) diaper. His bowels are definitely working these days! Another time he had to be changed and have a bath because his feeding tube came unhooked in the middle of a feed. He was lying in my milk. All his bedding and clothes had to be changed. When Pastor Jamie came yesterday, Oliver was in the middle of that bath. I was going to take a picture of him during the bath, but he was screaming his head off. It was just a sponge type bath, but his cord stump fell off yesterday evening, so he could have a "real" bath now.

Yesterday Oliver did pretty well with nursing at 9am, noon, and 3pm. He latched on and did get some milk. However his stamina was very limited. The 6pm feeding was a total bust. I couldn't get him to wake up. Even though the nurse gave him his Hep B vaccine at 9pm, he just wanted to sleep through that feeding as well. When the midnight feeding also wasnt' going well, I asked the nurse for a shield. I have a love/hate relationship with those things. They have helped my three children start nursing, which is necessary to being discharged from the NICU, but then getting them off the shield is rather stressful and difficult. I had hoped to avoid the shield this time around, but by midnight last night I caved in. At 3am I was ever so glad I had made that choice because he had his best nursing session then, and then he topped that one at 6am. At 6am he nursed on and off for 20 minutes, and at times he nursed rather vigorously. Yes, the shield does really help preemies. They only had extra-small shields in stock. It's not the right size, but we're using it for now. The 9am feeding also went rather well. He actually had too much milk between what he consumed by mouth and feeding tube so he spit up a bunch of milk in his isolette. When the doctors did their rounds they said I am to tell the nurse after each nursing session whether Oliver should have a full feed (by feeding tube) or a feed half the size of what he has been getting lately. At noon I asked the nurse for a half-feed because he did pretty well. He still takes quite a few breaks (he stays latched on but stops sucking), but he is only 34w1d. I feel far more encouraged than I did at midnight, although I'm already dreading the process of weaning him off the shield. One thing at a time. First we have to get this boy HOME. The two things that can still be improved are #1 getting Oliver off the oxygen and #2 getting it to the point that all of his nutrition comes by mouth.

Last night each feeding/ pumping session took 65-75 minutes from the time the alarm on my cell phone went off until the minute I crawled back in bed. I walked back after the 9pm feeding, but I drove to and from the midnight, 3am, and 6am feedings. I walked far more than necessary for the midnight feeding. The first two entramces I went to at the hospital were locked. Now I know where to go when the building is locked (9pm to 5am).

Today I paid $1,897.79 to one hospital and $210 to another hospital for bloodwork. Last week I received a bill for $2,516 from the hospital in Harrisburg. I haven't paid that one yet. All of these bills are just for bloodwork. I'm praying that the MFM clinic will assist me in showing the insurance why these tests were medically necessary so that the insurance will pay the bills, but the one hospital was threatening to send the bill to collections if we didn't pay so I decided to pay it now so our credit isn't ruined while we wait for the insurance to process the appeal. What a relief that we don't have to worry about any medical bills incurred past July 1. If we end up having to pay more than $5K for laboratory bills, I definitely screwed up. It would have been better to pay the extra $3K to stay on Blue Shield. Live and learn. I still haven't given up hope yet that the insurance will pay eventually. They did actually end up paying for Ian's feeding program even though Hershey said they wouldn't. Ironically if I could pick, I wish they would have refused to pay those charges (because Medical Assistance would have paid if the insurance didn't) and covered these instead. Hershey is probably glad though because the insurance paid a higher rate per day than MA would have paid.

Yesterday I didn't leave the hospital property once I arrived here at 9am. Today I did venture off after the 3pm feeding/pumping session and shopped at a children's consignment store that is just a couple of minutes away. I got two things for Oliver (including one preemie size onesie/pant outfit), a leotard for Nadia, and two things for Ian (a 3 piece suit and a pirate costume). I think he's going to love the pirate costume, and Paul will be glad if it means Ian stops asking to wear one of Nadia's princess dresses. I also stopped at Dunkin Donuts for a egg/cheese bagel as my dinner. Yesterday I just ate food from the RMH refrigerator. It costs $15 a day to stay here so I'm trying not to spend any money on food during my stay, but I was really craving a breakfast sandwich today.

Tuned off his heat

This morning I arrived at the NICU at 9am, and although I hadn't yet got permission to "wet" nurse Oliver, that's what I did as I was 99% sure I would get that permission when they did rounds a bit later. He does a great job of latching on and sucking. The problem is that he doesn't last long at all. I am trying to avoid the shield this time around, but if that will help him get out of the NICU faster, I will agree to using the shield. He's still getting his full feeds by tube, which is fine by me as I am certain he's not getting enough by mouth yet. Around 11am the doctors did their rounds and they decided to turn off the heat in his isolette to see if he can maintain his body temperature without it adversely affecting his weight. He's now wearing a onesie, sleeper, two receiving blankets, and a hat when he's in his isolette since they turned the heat off. Today was his first time ever wearing a onesie. He wore several of them today due to leaky diapers and such. I took a picture of him (below) wearing a onesie that read "Little Brother." How appropriate! It's quite a contrast as just a few days ago he was naked (only wearing a diaper) in his isolette and the last couple of days he's only worn a sleeper. It will be easier to get him dressed, change his diaper, etc. once he's out of the isolette. They aren't doing any room air trials with him today because they actually had to increase his oxygen, except when I was holding him this morning they turned it down a notch because his saturation levels were too high. He looked like he had a sunburn his face was so red! The doctors did give me permission to "wet" nurse him every 3 hours. YAY! I'm still praying he'll be discharged on Labor Day, which is 12 days from now. You can do it, Oliver!!!

I checked into the RMH right after the doctors did their rounds. I am so grateful to have a room so I can get some sleep in between nursing him throughout the night. On Saturday and Sunday I'm going to ask Paul to bring the kids down and spend a few hours here as they have a nice playground here at the RMH as well as a nice playroom inside with lots of toys. This way I can spend time with the kids, and it will be much easier to entertain them that it was at the hospital in Harrisburg. Since the kids are at Paul's parents' house tonight, I've asked him to come down and spend a couple of hours with me this evening in between the 6pm and 9pm feedings. He's going to bring a Netflix dvd that we both wanted to watch.  I'm glad Oliver is at a hospital close enough to home that we can do something like this. Since he's not consuming very much milk when nursing, I am pumping after I nurse him. I definitely will get to hold him a lot more between now and his discharge than I have the previous two weeks, but I am not going to hold him ALL the time. I know from experience (Ian) that it's not good to have a baby trained to be held 24 hours a day. Today he was held for quite awhile by my pastor (see photo above). Pastor Jamie was Oliver's first non-family visitor, and his 9th visitor altogether (others include Paul, my mom, Paul's parents, me, Nadia, Ian, and Aunt Debbie).

During the night, I am going to drive back and forth between the Children's Hospital and the RMH, but during the day (if it's not raining), I am planning to walk back and forth in an attempt to gradually get myself back in shape.  I get out of breath SO easily these days due to 10+ weeks of bed rest.

Two Weeks Old

Oliver is now two weeks old. In many ways that doesn't seem possible. I think that's mainly because of how little contact I've had with him. If he had been full-term, I would have had SO much more contact with him (holding him, changing his diaper, getting him dressed, nursing him, etc.) over these past two weeks. The first time I held him or changed his diaper was when he was 6 days old. On day six and day seven, I held him twice each day (at noon and 6pm). I held him for about 3 hours total over those two days. On days 8-12 I held him once each day for about 3 1/2 hours total. In his first 12 days of his life I held him for less than 7 hours total and wasn't allowed to attempt to nurse him. I changed his diaper 4 times in 12 days. I have had more contact with him the past two days thankfully. Yesterday and today I took the kids to a babysitter at 11am. After I arrived at the hospital, I pumped because they wanted the first attempts at nursing to be "dry." Then I held him for 2.25 hours, which included an attempt at nursing. After going to the bathroom and pumping again, I held him and attempted to nurse him for another 30 minutes. I held him for about 5.5 hours total over the past two days. In other ways, such as the fact that my swelling is gone, it does seem like he's two weeks old. Paul's dad picked the kids up tonight. He needed to make a trip to Philadelphia tomorrow for work, and he decided to take Shawn, Nadia, and Ian along so they could also go to a museum. This means I'll be spending MANY hours with Oliver tomorrow, and it meant Paul and I started tackling the project of putting his books back on the bookshelves. They don't allow "wet" nursing to take place until the baby is 34 weeks (which he'll be tomorrow). Thankfully, at this hospital they are going by my EDD according to IVF rather than LMP. The other hospital said he wouldn't hit 34 weeks until Friday, but they don't have the 34 week rule with nursing. They even allow babies as young as 29 weeks to nurse.

I wish I had brought my camera to the NICU yesterday as it was the first time he didn't have any breathing apparatus on his face. He was off the oxygen for 10 hours yesterday. They had to put him back on at 10pm due to his saturation levels being too low. This morning he wasn't doing well enough to have another "room air trial," but once I was holding him, his levels were actually "too high" (they don't want them to be above 95%), so they gave him a 2 hour room air trial this afternoon. They would have let him go longer, but his saturation levels started dropping even while I was holding him. He was alert both times that I tried to nurse him (noon and 3pm). He latched on quite a few times and did get a little bit of milk. He doesn't last long though. It feels like it will be a miracle if he's able to get all his nutrition from nursing within 2 weeks. I'll probably have to cave in and let him use a bottle. Yesterday they started fortifying my milk to increase the calories he's consuming per ml. I can't wait until the day I can stop pumping. I love nursing. I can't stand pumping. I am only pumping because #1 it's best for him and #2 pumping now will enable me to nurse him in the future.

I called the RMH, and they don't have any available rooms right now. If a room opens up, I'll check in there tomorrow. If not, I'll sleep in my own bed tomorrow night. At some point if there's still not a room available, I'll need to stay at someone else's house (someone who lives closer to the hospital than we do), but I think it will be fine if I sleep in my bed another night or two if there isn't any room for me at the RMH. I'm going to pack a suitcase tomorrow morning in case a room does become available, but if that doesn't happen, Paul and I are going to go to a Toyota dealership to test drive a Sienna minivan. Paul put three carseats in the back of his car on Monday morning, and it can be done. This means we don't have to rush into buying a minivan. We had been planning on buying the minivan in June or July, which I assumed would be in plenty of time before Oliver was born, but I wasn't expecting to be on bed rest starting on May 30. I am not crazy about Paul's Civic (because it has almost 200,000 miles on it and is a stick shift), but I can drive it for a few weeks if we don't buy a minivan before Oliver comes home from the hospital.

Off of oxygen!

This morning I learned that Oliver had been moved from bed #1 to bed #25, and his current bed is in the special care (NSCU) rather than intensive care (NICU) unit. They made several changes to his care - one of which was to continue the room air trials and another was to discontinue his doses of caffeine. They started a room air trial right before I arrived today, and the whole 3.5 hours  I was there he wasn't on any oxygen. He had some episodes where his satuation levels were too low and/or his respiration levels were too high, but overall he did very well. I was pleasantly surprised when I called to check on him at 8:30pm that he was still in room air! Wow! I'll be anxious to hear in the morning if they put the cannula back in his nose or not. In light of this improvement as well as starting to work on nursing, I asked that they move his feeding tube to his nose. It's currently going over his tongue. The first feeding session (noon) wasn't successful because he slept pretty much the entire time. I held him for 2 1/4 hours and then put him back in his isolette so I could go to the bathroom and pump again. When I got back, I noticed he was awake. I changed his diaper again and then decided to attempt feeding session #2 even though they hadn't started his feed yet, and they said they try to do it at the same time so the babies associate a full belly with nursing. I am glad I seized the moment because he did great! He latched on multiple times on both sides! He didn't last long, but it seemed like a big step forward. The plan is to do the same tomorrow and then start nursing him every 3 hours around the clock starting sometime on Wednesday, as he'll be 34 weeks that day (which is the earliest they encourage nursing at this NICU).

The best news of the day was when his doctor told me that another doctor will be taking over Oliver starting tomorrow and will be his doctor for the next two weeks. She told me that she expects that during that time Oliver will be discharged. It depends on Oliver, but that was very exciting to me! When he was born I was thinking - 4 weeks even though the other NICU said most likely 6 weeks. Maybe my 4 week estimate will be accurate as tomorrow he'll be 2 weeks old. It would be awesome if he could come home around Labor Day (about 4 weeks before his EDD). Today was the first time since 6pm last Tuesday that I had changed his diaper. Somewhere during that time span he got out of the merconium phase. His poop today was yellow and runny rather than black and tarry.

Last night I did a load of laundry and *thought* we did a load of dishes in case I would be checking into the Ronald McDonald House tomorrow. This morning it wasn't until I had put away about 80% of the dishes that I discovered Paul and I had a miscommunication last night, and he hadn't run the dishwasher. I had been putting dirty dishes into the cupboards. That was a mess to try to get the dirty ones back into the dishwasher. I also went through some boxes in Nadia and Ian's closets to put some fall clothes into their dresser drawers (ex. pants). I also went through Nadia's clothes and took some of her spring/summer items to the basement (particularly any that were size 3T). Ian wore size 24 month pants for the first time today. He's definitely shorter than Nadia was because when she was his age she was wearing 24m pants, but I had to roll the waistband for his pants to fit him, and he'll be 3 years old in 4 months! I thought it was time for him to move past size 18 month (for pants - he's been wearing 24m/2T for everything else for several months). This is the time of year when the weather is constantly changing and one needs to have access to a variety of articles of clothing.

A young woman from church (who is an early childhood major at my university) watched the kids today for 5 hours and will watch them again tomorrow during the same time span. She's really nice, but the two main reasons I don't prefer that the kids go to her house too much are #1 her idea of babysitting is to let them watch Disney movies for hours on end and #2 they have a few cats (and a dog) and both kids are sneezing and rubbing their eyes by the end of the day. Paul's parents are going to watch the kids on Wednesday and Thursday, and they'll go to Sarah's house on Friday.

They used to give nursing moms one meal pass a day at this hospital, but they don't do that any more. They are still doing that at the hospital in Harrisburg. I used a $5 pass on Monday and Tuesday in the cafe last week. However, if I will be staying at the Ronald McDonald House (which costs $15 a night), I should be able to get some free meals there. I can't wait until life settles back into "normal" here at home. I told the woman who brought us dinner tonight that Oliver should be coming home soon. I said we could make this week the last week for meals, but she said she already has the meals lined up for next week so we'll make next week the last week. I am so very grateful for all the ways my church family has helped us out over the past 10 weeks!

Daddy's Turn

Monday (when Oliver was 6 days old) was the day I held him the first time. Yesterday (when Oliver was 11 days old) was the first time Paul held him. I'm guessing that the next two family members to hold him will be his two grandmas. He definitely prefers to be held kangaroo style. His saturation levels were in the 80's when Paul was holding him, and then when I had him under my shirt his level stayed at 100%. Previously any level above 95% would set off the alarm, but now that he's on room air it doesn't matter how high it goes.

Ian and Nadia both like being able to touch Oliver. They've both asked to hold him, but that's not going to happen until we're at home, and even then it would be under very close supervision. It was so nice to see Oliver without a CPAP and IV. They tried twice (once last night and once during the day today) to take him off the oxygen compeletly, but both times his saturation levels dropped too low. The last three days when the doctors did their rounds they started in Oliver's pod so the nurse told us yesterday to arrive at 9am today if we wanted to be there during rounds. Unfortunately the doctors started at a different end of the NICU today and didn't come to his bedside until after 3pm. The other days I was there at 3pm, but today we came in the morning per the nurse's suggestion. We left at 11am. The kids and Paul made a brief visit in the NICU, but most of the time I just snuggled with him (Kangaroo style). It's always so hard to leave. It feels strange to only hold a baby for 30-60 minutes a day, but I know when I'm back to giving him lots of attention then I'll feel badly about not seeing Nadia and Ian. I'm going to struggle with feeling guilty one way or the other until all three children are under the same roof.

During the rounds today the doctors changed his status, which probably means he'll be moving to a different pod. He's been with the micro-preemies, but now he's considered to be stable, which means his vitals won't be taken as frequently, and he can start wearing clothes again (he hasn't worn any since 8am on Wednesday). They also have started the process of getting him to work on learning to regulate his own body temperature. When he achieves that goal, he'll be moved out of the isolette. He's up to a full feed now (34ml every 3 hours). He's allowed to start the first step toward learning to nurse tomorrow. I am planning on being there for his noon and 3pm feeds tomorrow. If he seems to get the hang of it, then I'm planning on returning on Tuesday morning and not coming home until he's discharged. At least I'll have a car. The other times I stayed at the Ronald McD House while Nadia and Ian were in the NICU, I didn't have a car with me. I'm hoping that maybe he'll be home in about 2 weeks. The three goals that have to be met are getting off the oxygen, maintaining his body temperature, and learning to nurse. Although it will be hard to be separated from Paul, Nadia, and Ian again, it will be easier to nap during the day if I'm only responsible for Oliver. As to be expected since I'm pumping around the clock, I'm very sleep deprived on top of aching all over the place as I come off of 10+ weeks of bed rest.

We set up Oliver's room today. Nothing has been hung on his walls yet, but the crib is ready and the other furniture has been arranged. I think it looks great! I reassembled Paul's computer on the desk that's now in our bedroom, but zero progress has been made on all the piles of books and papers. I predict that will take weeks (months?). The good news is that Paul sent his advisor a 20 page draft of part of his final paper (and this will be the heart of his dissertation) a few days ago, and she gave him very positive feedback today. Today I made tuna noodle casserole, and Nadia and I made a batch of chocolate chip cookies (that Nadia and I wanted) and a batch of butterscotch oatmeal cookies (that Paul wanted). Yum! I've tried to make the last 5 days as normal as possible even though it's very painful to stand on my feet. If I had known Ian was going to take a long nap today (75 minutes), I would have napped at the same time. The other days his nap had been 30 minutes or less. Another bit of happy news regarding Ian today was that he ate his breakfast (toast) VERY quickly all by himself. It was such a relief to have one meal that wasn't a lengthy ordeal.

CPAP to Cannula

Even though I am physically exhuasted, emotionally it feels great to be far more productive. Yesterday in addition to the housework, I also signed Nadia up for gymnastics and dance. For gymnastics I decided to wait until the middle of October to resume that Wednesday morning activity. I signed up for the same 9:00 class she took last year because it works out so nicely in conjunction with the 10:00 preschool story time at the library. In January, Ian will also be joining that class. I had a harder time deciding for ballet, which will start on September 2. I was torn between a Monday morning class at another studio or a 4:00pm Tuesday class with the teacher she had last year. I decided to go with the Tuesday class because it's a combination of ballet and tap dance. I thought it would be good to let her try that once to see which she prefers. A few months ago I thought she wouldn't want to do ballet again, which is fine with me, but she has been very determined lately to do ballet again this year. Paylesss has a coupon code of $10 off any order of $25 or more. I used it twice yesterday to order Nadia a pair of both ballet and tap shoes.

Yesterday I also signed up to sponsor an additional child through Compassion. For more than 15 years I sponsored one girl through Compassion. After Ian was born I decided to add another child - one who was also born on December 12. We ended up with Manu from India. Yesterday I selected a child born on August 7 - Luis from Bolivia. I'm hoping when our kids are a bit older that they can participate in communicating with the three children we sponsor. This morning Nadia and I went to a neighboring town's community yard sales. I bought Ian one sweater and a coloring book, Oliver two sweaters and a Steelers hat and bib, and Nadia one skirt, two pairs of shoes, four books, and three dresses. It feels so strange to be doing "normal" activities after being on bed rest for so long. I feel guilty no matter where I am. When I'm at home, I feel like I should be at the hospital with Oliver, but I remember when I was in the hospital I felt so badly for Nadia and especially Ian. I'm sure when I return to spending most of my time with Oliver, I'll feel badly for not seeing Paul, Nadia, and Ian very much. I can't wait until Oliver is discharged and our new normal life as a family of five begins. When Nadia and I got back from the yard sales, Paul mowed the lawn.

Oliver was taken off the CPAP this morning! Without any oxygen his saturation levels were just a tad bit too low so they put him on a low flow cannula (the vapotherm used a cannula). I'm hoping he won't have to go back on the CPAP and also won't be on the cannula much longer. His iv site also went bad. They hadn't planned to leave it in much longer so they just decided to take it out a bit sooner than planned rather than sticking him again. All of his nutrition will now be through the feeding tube (my milk). Progress! His bilirubin count also dropped a little more.

I snapped these pics this morning. Can you tell that both kids love wearing costumes and playing with blocks? The highlight for Ian is still knocking them down!

Room Air!

Our neighbor volunteered to watch our kids today while I went to the hospital. She was watching her boyfriend's niece, who turned 6 years old a couple of weeks ago. The kids had fun playing with Angelina. Ian took a 45 minute nap (fell asleep downstairs). I had an appointment at 2pm with someone at the hospital to submit the paperwork for Oliver's medical assistance application. He qualifies based on his prematurity. I definitely welcome the additional medical coverage. They might pay for the transfer, if Blue Shield doesn't pay. Also, with the unknowns of what health insurance we'll have as a family starting January 1, it's nice to know that Ian and Oliver will be covered. After that was over I held Oliver (Kangaroo care) for one hour. He was doing much better today. His bilirubin count finally started dropping (albeit just a little), and they had him at 21% oxygen when I was there (compared to 30% yesterday). The CPAP was still at "3" (it goes from 1-11). Room air is 21%, which means they are no longer worried about his saturation levels going too high (normally the alarm goes off if his number goes below 85 or above 95. The doctor was very pleased and thus didn't order another echocardiogram. She said that if he does well tonight, he might go off the CPAP tomorrow! WOOHOO! He also is no longer receiving lipids by IV. They might totally stop the IV fluids as well tomorrow because he is consuming much more of my milk at each feeding.

One other bit of happy news from today was that I found my bracelet that I lost in January! It has been in the silverware drawer the past 7 months! Go figure!! It's broken, but Paul had paid for the warranty last August so it won't cost anything to have it repaired. We have another silverware holder on the counter, which is what we use most of the time. Obviously I don't dig in the silverware drawer very often! I really never expected to find this bracelet, but I am oh soooooooooo glad I did, as I think it's beautiful (sapphires) plus it was the gift Paul gave me for our 10th anniversary. Another thing that put a smile on my face today was seeing that I had lost 7 pounds in the past 5 days.

This morning I took the kids to the grocery store. Once I was there I realized Ian was going to have to walk since I'm not supposed to lift more than 10 pounds. He did pretty well considering it was his first time not sitting in the cart. I also let the kids play outside while I finally tackled that flower bed (which looked more like a grass/weed bed until I worked on it today). I had been embarassed anytime someone came to our front door. The flower bed doesn't look as good as it did in previous years, but considering it was given ZERO attention for three months, I think it looks pretty good now that I've weeded it again. This afternoon I made brownies. Oh they tasted SO good. Maybe the saying "absence makes the heart grow fonder" applies to food as well? LOL! It is SO nice to be able to eat chocolate again! By the time Paul came home (at 7:30pm), I was completely ready to crash. I got into bed the minute he came in the house. I can't ever remember a time in my life when this many muscles hurt at the same time. My arms/hands are fine, but otherwise I am in pain from my neck to my toes. I don't ever remember my toes hurting so badly. Reacclimating to life after 10+ weeks of bed rest is brutal, and I haven't even attempted my usual exercise yet (walking to the park). Just pulling weeds had me sweating and out of breath this morning. I also did my first load of dishes (in 3 months) and load of laundry.

Meal times are far more painful these days. It would be far easier just to feed him myself, but some day he needs to learn to feed himself. Breakfast took about 2 hours this morning. I wasn't up for another round of that so I just fed him at lunch. Nadia was the one who took an eternity for dinner (because I made her eat chicken, rice, and vegetables). At one point both of them were crying at the top of their lungs during dinner. Lovely. Karen (OT) stopped by and dropped off some yogurt for Ian today. Yesterday he pooped in his pants so I gave him a shower (which he hates). He had regressed a little in that regard while I was in the hospital. That did the trick as he pooped on the potty today.

Exhausted!

Yesterday I wore a pair of shoes for the first time in 13 days. They were rather tight, but I was able to squeeze my feet into them. Today I was able to comfortably wear a narrower pair of sandals. This morning my feet were still slightly swollen, but as of this moment I can say that they are back to normal. My feet and legs really hurt over the past week, and until today I attributed all the discomfort to the swelling. My feet and legs are so very sore and tired today, and now I am chalking it up to 10 weeks of bed rest. The same goes for my back. Even sitting is hard on my back as I was very rarely sitting all the way up the past 10 weeks. I feel like every muscle in my entire body is aching right now. Even my toes hurt! Hopefully it won't take too long for me to be in less discomfort. It's not like I've done something like attempt to walk to the park yet! I'm sure it also doesn't help that I'm getting up every 2 hours during the night to pump.

Yesterday I came home to chaos. Several rooms had been affected by converting Paul's office into Oliver's bedroom. Furniture had been moved and there were stacks and stacks of books, etc. in the dining room, living room, and our bedroom. Toys that used to be in the living room had been moved to the family room. Also, other people don't know my system for putting toys away so the toy bins were all mixed up (whereas usually I have a bin for Little People, a bin for Potato head, etc.). Plus my things from the hospital were adding to the clutter (suitcase, etc.). I was so embarassed when someone came to deliver a meal yesterday. I have always had an aversion to clutter, but I think being in a stark hospital room for 7 weeks only intensified that. Last night I wanted to get garbage bags and put more than 50% of the kids' toys in the bags to decrease the clutter. Thankfully, I didn't do anything so drastic. I did some work yesterday, but this morning is when I did most of it. I was also not initially happy with where the bookshelves had been relocated. I felt that the living room was drowning in furniture. I have now adjusted to the extra furniture that is now in our bedroom (desk), dining room (two bookshelves), and living room (two bookshelves). I found new locations for the kids' toys today. I sorted through all the toy bins. I didn't do the toybox (yet). Another thing on my list for tomorrow is to tackle the flower beds, which haven't been weeded since May. There are still stacks of books around the house, as the bookshelves are all still empty, but the main floor of teh house looks 1,000 times better this evening than it did last evening. I haven't made much progress in our bedroom yet.

Two people from my church came over this morning and spent 2.5 hours painting Oliver's room. Paul did a GREAT job picking the color. I think it looks great! Paul hung the new valances this evening. This weekend I want to set up the crib and hang some of the wall things (ex. his clock). I can't wait to see how it looks once it's all put together. I am so very grateful for all the ways people from my church have helped out this summer.

This afternoon we met Paul's parents at the NICU, as they hadn't seen Oliver yet. Oliver's bilirubin level went up, but they didn't put him back under the lights (yet). He's still on the CPAP (level 3) at 30% oxygen. That is disconcerting to me because the last few days he had been on 24-26% with the Vapotherm. The doctor told me they gave him diurectics today to see if that would help, and if it doesn't, they are going to do another echocardiogram tomorrow to check his heart. After Paul's parents and the kids left for the playland at McD's, I held Oliver for awhile (Kangaroo care). Today was my first day at home by myself with Nadia and Ian since July 3. I had many battles with Ian - over taking his nap in his bed, getting him to feed himself, etc. It wasn't pleasant for either of us, but in some instances (ex. sleeping) we need to work to get him back to where he was before the hospitalizations began, and in other instances (ex. feeding) I need to get him back to where he was after spending a week with my sister in Maryland. The last time I was taking care of him, I was feeding him so it's going to take a bit for him to realize that Mommy also expects him to feed himself. At lunch he cried so much (in his high chair) that he threw up, but then eventually he calmed down and fed himself one piece of toast with jelly on it. I let the kids watch 20 minutes of television while I pump every 2 hours. They enjoyed that! Nadia refers to it as "milking," ha ha! I can't wait until the pumping phase is over. I vastly prefer nursing to pumping. Today I brought in over 500 ml of milk, and that had been produced in less than 24 hours. Once he gets to full feeds he'll get 272ml a day so I am definitely producing enough milk right now. Unfortunately the nurse dropped one of the containers of milk on the floor. It broke and out spilled about 80ml of milk. I was bummed about that, but then when I came home the first time I pumped I got 70ml so I guess it wasn't a big deal to lose that "liquid gold" as they call it.

Nadia's 4th Birthday Interview

Last year I started the tradition of doing an interview with Nadia each year. Here is the link to her three-year-old interview as well as the results (below) of her four-year-old interview.

1.       What are your favorite foods? - cookies

2.       What is your favorite color? - pink

3.       What is your favorite cereal? – Reese’s Puffs

4.       What is your favorite thing to do indoors? – eat cookies

5.       What is your favorite thing to do outdoors? - slide

6.       What is your favorite book? – Snow White

7.       What is your favorite DVD? – “Beauty and the Beast”

8.       What is your favorite toy? – princess toys

9.       What is your favorite restaurant? – I like Friendly’s

10.   What is your favorite animal? – elephants

11.   What makes Mommy happy? – when I play toys nicely

12.   What makes Mommy sad? – when I fight

13.   How does Mommy make you laugh? – roar (?)

14.   How old is your Mommy? -  I don’t know.

15.   What is your favorite drink? - milk

16.   What is your favorite game? – Belle games (?)

17.   What do you like to wear? – this dress

18.   What makes you happy? – when he (Ian) falls asleep

19.   What makes you sad? -  when he (Ian) takes my toys

20.   What is your favorite thing to do with Daddy? –I like to play games with Daddy.

21.   What is your favorite thing to do with Mommy? – I do like to play puzzles.

22.   What do you want to do when you grow up? – big kid

23.   What is your favorite song to sing? – Beauty and the Beast

24.   Who is your best friend? – Gabby and Chelsea. I love them. ( Gabby turned 14 years old in June. She was our neighbor, and Chelsea turned 15 on June 24. Chelsea is Alexis' best friend, and Alexis is Gabby's sister.)

25.   What is your favorite Bible story? – Jonah and the whale