Catching up

I'd like to say that I've been really busy and that's why I haven't posted in a while but that's not the case.  I'm so behind on laundry, cleaning and still unpacking/organizing the house. Brant has good nights and bad nights and I've been so exhausted that during the day the last thing I want to do is clean or do laundry. I don't mind actually doing laundry- it's the folding and putting away after I hate. But doesn't everybody??

Friday Brant had a doctors appointment. He is doing really good. Weighed in at 7 pounds 13 ounces. His doctor also said she didn't need to see him 1-2 times a week anymore. We will now be going in monthly. Still waiting to hear from Children's for an earlier appointment. Mom came over Friday night and watched him while I went to Lowes and got stuff to paint his room and bathroom. Dad, Darren and I spackled all the holes and taped everything off. Well almost everything- Darren wants to sand down the trim pieces because the previous owners weren't so careful when they painted. So that's up next before I can actually paint. I was SO excited when I went and got everything and wanted to get to it right when I got home. And now I have no desire... I just want it to be DONE. 

Brant's due date was on Friday (April 26) and he turned 12 weeks old on Saturday. So his adjusted age today is 4 days. He's been such a trooper and we are SO in love with him! Sunday Darren made me go to church and him stay home with Brant. I was nervous leaving them alone. Darren is still scared of hurting or dropping him. Before I walked out the door I probably asked him 5 times "are you sure? you're going to be okay??" He finally said yes now go before your late! When I got home they were exactly where I left them on the couch. Brant was snuggled in and hard asleep on his lap :) 

Cabin Fever

Brant's days/nights have been switched. Yesterday I was able to keep him up most of the afternoon and he actually slept last night! AND for 5 hours straight! though today despite all my efforts he has been asleep most of the day. So it will probably be a long night for us tonight.

I'm starting to get cabin fever too. It's just me and Brant all day at home. It's getting to be nice out so of course that means busy season for Darren is starting. He's been getting home right when I'm crawling in  bed, and is gone before I'm even up. Usually I'm so tired from being up all night that I don't even notice when he leaves.

I wanted SO badly today to pack Brant up and go for a walk. But still waiting for his carseat adapter to his stroller. Is it sad that I'm kind of looking forward to his doctors appointment tomorrow because that means I get to get out of the house? However once we get to the doctors I'll start having anxiety and want nothing more to be home. Doctors office = people + germs, both of which Brant can't be around.

I am excited for tomorrow too because mom is going to come over after she gets off work and hang out with Brant while I make a trip into Lowes. I'm going to get stuff to paint Brants room and maybe one of the bathrooms. You would think that being a shut-in at home would mean I'd have the whole place unpacked and organized. Yeah no... It's been really hard to get motivated to work on it. I see Brant sleeping in his swing or bassinet and think that's exactly what I want to do. So I crawl on the couch or in back in bed and attempt to get some sleep. Though it rarely happens.

I will post an update tomorrow after his doctors appointment. Should just be to check his height and weight!

Ups & Downs

Relaxing at Home 

Well we have been getting into a routine. It's made a big difference when it's just me and Brant during the day and we can just do our thing. At night I'm always worrying about him making too much noise for Darren to sleep or if I put him in the mamaroo to sleep I am afraid he will wiggle his way out of it with the way he's been wiggling lately. He sleeps better in it usually but it makes me sleep better when he's in his bassinet. We've had good nights and then nights like last night where he is up all night. It made a huge difference when Darren moved him over by him and rocked his bassinet all night.

We went to the Children's Bellevue Clinic today to meet with his pulmonary doctor. She will be deciding when to do his oxygen weaning. The appointment went great- he weighed 7 pounds 6 ounces and did awesome on his room air test. We discussed a tentative plan to take him off his oxygen for 10-15 minutes twice a day when he was awake. We were told it must be on when he's sleeping and eating. She also wants us to see their nutritionist at our next appointment and she is mainly in the Seattle Children's clinic so that's where we will be going from now on. However they do some blood tests before doing any changes so she said she could call us with the results before we start taking him off of oxygen. So we walked over to the lab- he got poked and cried and cried, then passed out. About a half hour after we got home I got a call from the nurse with the test results... SO disappointing! They didn't come back like they thought they would. His levels were too elevated to do any weaning so they will be reevaluated at his next appointment...which isn't for another 2 months. That's the earliest his doctor and nutritionist have openings on the same day. They want to see him before that so she was going to try to shuffle some kids around and see what she could do to get us in earlier. We should know and have a better idea by the end of the week.

I was so excited during his appointment. He ROCKED his room-air test. Didn't go below 96 (they like it to be 93 or higher, lowest 89). I thought we were headed towards weaning off oxygen, which I want off SO bad but no... not for a while longer yet. They said they were slow with it, but I REALLY hope we can get in before we hit the 2 months mark!

Getting things figured out

Things are going smoother day by day. I'm getting more comfortable with things, though I still have anxiety attacks the closer night time comes. Today in the Doctor's office I had an anxiety attack too- last time they took us right back but today we had to sit in the waiting room. There was this one kid who kept coming over by us and his father wasn't paying ANY attention at all. I wanted to scoop Brant up and get out of there! The nurse who took us back said that next time just tell the front desk we cannot wait in the waiting room and they would put us in a temporary room until they were ready for him.  We finally got the results back from one of his blood tests he had at UW and his cranial ultrasound results back as well. Ultrasound came back totally normal. His blood test showed that he is still anemic so in addition to the poly-vi-sol with iron he will be taking an additional iron supplement. Which SUCKS because the poly-vi-sol does not sit well with his tummy so I don't know how adding even more iron is going to go for him. And he had quite the growth spurt this week! 7 Pounds 5.5 Ounces!!!!

My mom is coming over tomorrow to watch him for a while for me so I can go out and run some errands then we will be hanging out at home the rest of weekend and then headed to Children's on Monday

We are home!

Well I thought the day would never come! We made it home Monday night. It took forever for us to get discharged! But we did it. Mom and I got to the hospital a little before 8 so we could be there during rounds. The Walgreen's lady with all of his portable oxygen stuff showed up around 11:30-12 I want to say and then maybe around 1-2 he had his cranial ultrasound done. Then gave him a bath, fed him a bottle and after that we thought we were going to be headed out! BUT no, all the discharge paperwork and getting his room packed up and all his follow-up appointments took forever. We made a stop at Target at Smokey Point so he could have a break from his carseat. Mom stayed in the car with him and held him while I ran in quick and got him a bathtub, some baby shampoo/lotion etc- a bunch of stuff I hadn't had yet but NEED before we get a shower put together for him. 

Here are some pictures from when we left then I'll talk about how our first days at home have gone...

Getting his ultrasound... 

Bath time to get all the goo out of his hair from the ultrasound

In his new Husky gear! 

his pulse-ox monitor- I HATE this thing- will explain below 

Going home outfit...

Ready to go!

Coming through the NICU doors 

Getting some paperwork from the NICU front desk. 

Heading to the elevators 

Getting loaded in the car to go home! 

This was taken on Saturday- he loves his mamaroo! Seriously BEST. THING. EVER. 

Pictures of his room at the end 

nurses computer 

The thing on the left with the blue light is a towel warmer- I want one SO bad! Just bigger! 

His room number 

Oxygen gauge 

The door to his room

His blank monitor! 

Alright... the drive home was tense. Mom was nervous, I was nervous. When we got home I started to immediately stress. The house was a mess and of course I wanted everything to be perfect. The home oxygen guy showed up not long after we got home and brought in his home oxygen tank and a few portable ones and trained me on how to use it all. In the middle of all of this I started to have a panic attack, I kept it together in front of the guy but after he trained me he had a bunch of paperwork to do so I went into the bathroom and started to have a meltdown. I quickly pulled myself together, finished everything with him but once he left I completely lost it- could not breathe, crying my eyes out, and felt like I was going to puke. Once that passed and everyone left we crawled into bed, by this time it was about midnight. However we did not get ANY sleep. We put him in the bassinet in our room and every little peep he made I was up checking on him. Plus his pulse-ox monitor was going off all night long. They had the high heart rate alarm setting too low so any time he would fuss or try to poop it would go off. And it is LOUD. Plus it goes off all the time because it's not reading anything. The probe goes on his foot and whenever he kicks around it doesn't pick up anything. I've been experimenting with different things to try to keep it on there.

Tuesday night went a little better. However as the night comes each night I start to have major anxiety and panic attacks. It's getting better but I still get them. I also haven't been able to eat anything really. Darren had to practically force feed me dinner the other night. But things have been going better. If we start him off in the mamaroo at night and then put him in his bassinet later he does better. Though I still hate nights. Days go great for us but at night I am so exhausted I just want to sleep and last night he was up every 2 hours starving- and today he's been sleeping practically all day. Must be having a growth spurt.

Took him to meet his pediatrician Tuesday. That went well. She wants to see him twice a week for a while to make sure he is still growing adequately. So we go back tomorrow. On Monday we will head to the Children's Pulmonary Clinic in Bellevue. They will be the ones monitoring his oxygen and deciding when to wean him etc. It is SUCH a pain to take him anywhere with his oxygen and pulse-ox monitor. There is NO way I could do it by myself.

I checked my e-mail yesterday morning and guess what!! I won a Mamaroo in their Share Your Story Sweepstakes. I entered before mom and dad had even thought about getting him one. Mom said she wanted to get one for her house too but they are spendy. So she was extremely excited when I texted her and asked her what color she wanted!

I will continue posting updates and pictures but want to thank everyone for all of their prayers and support! Brant still has a long way to go but we are on the right track. I pray that he won't need to be on oxygen for long, and the pulse-ox monitor too. The other night I wanted to throw it against the wall I was so annoyed with it!

Oh and a weight update- Tuesday he weighed 6 pounds 15.5 ounces!

Excited yet terrified....

So tomorrow is the big day. Brant will have a cranial ultrasound in the morning and then whenever the home oxygen people show up and teach me how to use it all we will be out of there. I'm excited to get him home yet terrified at the same time.

I feel like I can handle taking care of him without a nurse there but I am SO scared of him getting sick and us ending back in the hospital. I see myself holding up at house with him, never leaving and keeping him totally isolated. I know he needs to be exposed to things at some point but where do you draw the line???

With all of this said I know there are a lot of people that want to come meet him but I ask that we keep visitors to a minimum per day. If you want to stop by please be healthy and call first. I hate to say no to people but if I do say "not today" please do not get offended- I'm going to be super protective and cautious in the beginning. Plus I would like to get into a bit of routine with him at home before we start having a bunch of people coming over. It's going to be a big adjustment for us having him home, plus learning how to deal with the oxygen and pulse-ox he will be on. (and don't be surprised if I greet you at the door with a bottle of hand sanitizer!)

Any preemie mom's that have advise for me would be much appreciated with all of this! Like how long you waited to take your babies out, visitors, etc... I'm really nervous about all of this and I don't want to be protective but not over-protective.

Going Home!!!

Well the plan is for Brant to go home tomorrow! Things that have to get done before that- he is ad-libbing his feeds so he needs to wake up enough today and eat the minimum amount they set for him- shouldn't be too much of a problem. Tomorrow morning he will have another cranial ultrasound for his pediatrician and the home oxygen people need to come in and set up his portable oxygen equipment and his pulse-ox monitor and teach us how to use it. 

We will see his pediatrician within 48 hours of him going home. We will go to Children's in 4-6 weeks to meet with doctors there (they will be doing all of his oxygen regulating and weaning). We will see how often he needs to go down there for appointments for that. His doctor said they are very slow at taking oxygen off and it's usually a month-to-month thing. And then we are back down here in August in the High Risk Infant Clinic to see how he is doing development wise. 

Well that's the latest! Will post if anything changes! 

SO close!!!

AHHH I'm such a proud mama right now! Brant has done 7 bottles in a row, only 2 more to go and he's done a full 24 hours!!! This morning in rounds I asked what they are thinking for discharge and they told me about a week- I was encouraged by that because hey, at least they are telling me something and not just "it depends"! However it has been decided that he will go home on oxygen. Jenny, his nurse, asked about having him on it just for feeds, which is really only when he needs it, but the doctor and nurse practitioner both agreed that if he is being sent home with equipment it would be easier on us if he was on it all the time. Then we wouldn't have to deal with setting it up and getting the cannula on each feeding. Not really what I was hoping for but, we can handle it- we have to. 

After a few feedings today though Jenny said, I'm not supposed to say this but I think if he continues how he is doing he'll be going home Sunday or Monday. She was SO excited when she left and said maybe I'll see you on Monday but I'm keeping my fingers crossed. I love the nurses here!!! They are so awesome. Larissa stopped by today too- she had him a LOT in the beginning but hasn't had him in quite a while. It was nice to talk to her for a little bit. I talked to Terri too today- another one who had him quite a bit that we haven't had lately. It's going to be SO weird not coming down here anymore and seeing everyone. 

I'm trying really hard not to get my hopes up! Even if it is towards the end of the week we are still SO close. I think Darren would rather have it towards the end though. We haven't got his room set up yet. He said he was going to put together the bassinet tonight. Really that's the only thing I need done to feel  good about taking him home. I can deal with his clothes being in a box- it's not like we have a ton of clothes that fit him right now anyway! Plus he will be sleeping in our room anyway. Though we may have to put him in our closet (it's a walk-in, don't worry) because he is a noisy sleeper. He's always grunting or making little noises. 

And he weighed 6 pounds 11 ounces I believe, maybe it was 12. I'm not sure... I wasn't focused on that today during rounds, I wanted some answers on going home! 

I'm playing catch-up on the pictures I've taken!

One tuckered out little guy after his bath and photo shoot last week! 

Uncle Cody holding him for the first time 

 

Proud grandpa! 

This was taken today

he would NOT go to sleep today- even after doing so many full bottles in a row. 

ah he finally went to sleep! 

overwhelmed....

I've been pretty strong through this whole process. In the beginning I was a mess but I pulled myself together and really haven't had any breakdowns since. It's been one day at a time... But the last 2 weeks have been SO crazy with signing papers for the house, getting the keys and moving in and running back and forth from UW and worrying about Brant. This is the first time in quite a while where I have had time to just sit and it's all hitting me tonight. I don't think I can handle anything more...

We got all moved on Tuesday night. It took 6 hours for Darren, my dad, and uncle Rick to move everything. Nicki had already started on cleaning the kitchen when I got there after work. Darren had already moved a bunch of stuff. But then she had to leave to go run Nathan around. So me and my mom and aunt Pam cleaned and unpacked things. We got the kitchen totally unpacked and organized, bathrooms scrubbed, and the carpet in the master bedroom and Brant's room shampooed. The guys unloaded and dropped everything in the main living room in a big pile. And then the big stuff they stuck in the garage. Darren and I ended up sleeping on the mattress on the floor in front of the fire place. Our new bed set and mattress was delivered Wednesday. We are so used to sleeping in a double bed it felt like we were miles away from each other in our new king. I worked until 11 on Wednesday and then had a Doctor appointment at 12 and then spent the rest of the day unpacking and organizing. My plan was to leave this morning and head down to Brant but part of our bedroom set was damaged when they delivered it Wednesday so I had to wait for them to deliver new stuff today. And of course after they delivered the dresser and end tables I had to put just a few more things away and completely lost track of time. But I wanted to get as much done before I left as possible so that I don't come home to a total mess. I didn't have time to clean the laundry room. I was going to do that and do all of our laundry before I left (which is a LOT). I noticed there was a bunch of empty detergent bottles that fell behind/between the washer and dryer but I never got around to it.... next week all I will be doing is laundry! Plus with we have so much room in our new house now we realized how we have NO furniture... First on our list another couch or big sectional. And paint... all the walls desperately need paint but it will be a long time before that happens.

Brant is doing really well. He weighs 6 pounds 11 ounces. It sounds like we will have to take him home on oxygen- hopefully just for when he eats but we will see. He has been taking about 90% of his food by bottle. I asked his nurse Jenny how long he has to take 100% by bottle before going home and she said its different for every kid but she guessed the doctors would say 48 hrs. Though after that he would have to pass his carseat test. I don't know why but I have this feeling that it will be Wednesday when we take him home.... The doctors haven't said ANYTHING about a date but in my gut I feel like it'll be Wednesday. Let's start taking bets! In rounds this morning I guess they had said depending on his how his feeds went today they might start ad-libbing his feeds which is yet another step closer to coming home. They wouldn't be feeding him every 3 hours on his set schedule, they would feed him whenever he wakes up and acts hungry like any baby would at home. So we will wait and see what they decide in the morning. I gave him a bath today. We took him off oxygen for that and he was doing really well so Jenny called the doctor and asked if we wanted to do another room air test. The doctor said yes so we left him off oxygen. Once it was time for his next bottle though things didn't go as well. He was very disorganized and couldn't get into a rhythm and then had a desat so we put him back on again. Jenny said thats just him telling us he needs more support when he eats. Once he was put back on he was back up right where he should be.

Anyway... when I got to the apartment tonight I felt SO overwhelmed. It's the first time in quite a while where I have had time to just sit and think. We have been through SO much, I don't think I can handle anything more. In about 2 months it'll be our 1 year anniversary. It's crazy to think that 1 year I ago I was stressed about our wedding and getting plans together and now we have a 2 month old that's been in the hospital since birth, plus a new house and it's all happening at the same time. What a way to test a marriage! I think we deserve a real honeymoon when this is all over. Though I don't think I'll be able to leave Brant for a LONG time!!!