How You Can Help (Take 2)

I feel kind of weird even writing this post, but many people continue to want to help and ask how they can do that. Thank you SO much for wanting to help! It's always hard for me to tell people what they can do to help. I'm not used to needing help, but in our current situation, we really do. This whole journey has been very humbling for me and my "do it myself, I don't need help" kind of personality. So, please don't feel obligated to do any of these things...this is for people who want to help but don't know how.

1) Food - Being so back and forth all the time, we never really go get groceries or make real meals. If you want to drop off a meal for the freezer or food that won't go bad too quickly (cereal, soup etc) that would be one of the most helpful things. I have always hated grocery shopping and especially now, it's hard to use my free time doing something that I don't like doing. And, honestly, it takes a lot of energy for me to go to the store. That might sound weird, but I often avoid it because I get overwhelmed. All that to say, meals for the freezer or groceries would be a huge help. We have nothing in our fridge, so anything is welcome. Also, if you do want to drop off a meal, please put it in something you don't want back! :)

*I have just talked to my sister-in-law Christine and she said she would be willing to kind of be the organizer/receiver of meals! This will be a HUGE help to me! Some of you have written me about wanting to bring meals and it's just so hard for me to figure out the when/where of things because we are rarely at home for very long. If you would like to bring us meals/food please contact her so something can be arranged. Thank you SO much Christine!!!! Her email address is cjr1978@live.com
You can also email me or leave a comment here and I can forward them on to her. *

2) With bringing Cohen home, we are going to have a few needs for things around the house. This kind of goes with the grocery shopping thing. We haven't quite had time to make a Costco/big grocery store run. But, we are going to need lots of things like: Lysol wipes, cleaning products, hand soap, and hand sanitizer. Anybody that comes in or near the house (including us!) is going to have to be de-germed as it is going to be cold/flu/RSV season when we bring Cohen home and we can't have him get sick. I will be posting soon a little bit more about that soon.

3) Continue to pray. This has been a really long 5+ months for us and as I've said before, we are tired and ready to be together as a family and start our "new normal", whatever that may be. Pray for Cohen's eyes and that he won't need surgery. Pray that he will be able to come home soon! Pray that we will be patient and rely on God's timing.

I feel like I am starting to sound like a broken record, but we really are so grateful to everyone who has followed our journey. We have received more support than we ever thought possible. Someone who sent us a gift wrote on the gift that it was "to help bear each other's burdens". And all of you really have helped to bear our burdens. This hasn't been an incredibly difficult time in our lives and I can only imagine how much harder it would have been without all of the love, support, time, and help we have received from so many people. I don't know that we will ever be able to thank you all personally, but please know that we appreciate you greatly!

Time to Eat!

I have been informed that the blog has been light on "Danny news". So, here's a little Danny update: he is still working 4 days a week and coming down to see us on Wednesdays and the weekends. He mans the house while I am down in Seattle. I think it's safe to say that we are both really ready to be at home as a family.

Danny took today off so that he could be here at the hospital with me and do some learning for when Cohen comes home. We watched a CPR video and a carseat video. Danny got to give Cohen a bottle for the first time today. He also got to learn how to measure the length that Cohen's feeding tube should be, put it in, and check to make sure it's in the right place. Danny says, "I had to put his feeding tube in and it was awful". Cohen doesn't really enjoy getting his tube put in, he gags and cries and waves his arms a lot.

 {Bottle lessons}

We also practiced mixing up his food and measuring it out. So much to do! Feeding Cohen is not just "feeding him a bottle". It's laying him on his side so that he doesn't choke, not filling the nipple of the bottle all the way so that he doesn't get too much flow, watching him closely to make sure he doesn't get a whole bunch of milk at once, and watching his breathing. And then whatever he doesn't take from his bottle we have to put in his feeding tube. We are hoping that maybe since we have to be here until Thursday (if he doesn't need surgery) he will be taking all or most of his feedings by then. He seems to be getting more interested and eating more. He took 45 mL from his bottle today and a full feed is 75 mL. And for those of you who have been asking, this little chub weighs 9 lbs now!

 {First bottle from Daddy}

Exhausted.

I know, two posts in one day...but this blog has been such a huge support to me and writing things out helps me to process. To say that I am tired would be an understatement. I'm exhausted. Drained. Physically and emotionally.  I know something has to give, I just don't know what. What can give? I can't not go see Cohen. I can't not come home to see Danny and try and get the house ready for Cohen. I have to sleep, I have to eat, although neither of those are easy these days. I don't have energy to go to the store. I have no motivation to eat out. I don't sleep well because my mind is so busy and I have to get up to pump.

The physical aspects of driving back and forth to Seattle multiple times a week. Sleeping in a bed that's not mine. Waking up and not knowing where I am. Spending countless hours at the hospital. Pumping day in and day out. Of not eating well because our fridge is empty and I can't find it in me to go to the store.

And there are so many emotional aspects. The ups and downs with Cohen. Thinking there is finally hope of bringing home only to have them dashed and worsened by the fear and anxiety of him maybe having to have surgery. All of the emotions of losing Carter. The pit in my stomach when I find out that his headstone was put in and no one called to tell us. My mom happened to go by and told us it was there. And having to be at work and not having time to go see it until this evening. Knowing that his stone was probably put in on his 4 month birthday yesterday and we didn't even get to go see him. The finality of seeing a headstone at my son's grave site. The joy of seeing the light at the end of the tunnel of bringing Cohen home but the heartbreak and pain of not being able to bring both of my babies home.The fear of bringing Cohen home and wondering if we are really going to be able to take care of him.

I know something has to give. I'm not planning on working anymore anytime soon with Cohen hopefully coming home. But, at the same time, I feel like if I stop moving I may fall over and not get back up. I don't know what to not do or do less of. I just want all of this to be over. I know I'm exhausted and I know I can't do it all. But what do I do? To be perfectly honest, I am still terrified of losing Cohen. I want to know that I did everything I could possibly do to help him.

And so It Goes

You are never really off the NICU roller coaster. Cohen has made progress on his list. But he had his ROP check yesterday and one of his eyes is getting worse. They want to recheck it on Wednesday so there is no point sending us home Monday. If it looks any worse he will have to have laser surgery on his eye. This terrifies me because they would have to intubate him again. I think my heart just couldn't handle seeing him with that tube again. We just want Cohen to be better and once again, there is nothing we can do to make it better. It's hard not to get discouraged when we feel like we are so close, but so far at the same time. After we got this news yesterday I was just really bummed. I heard this little voice say "Trust God". And honestly, my first reaction wasn't to say okay, yes, I will trust. He has brought us through all of this and I know he won't leave us now. Nope, my first thought was to want to stomp my feet on the ground and throw a tantrum like a 5 year old and to yell something about it not being fair. To yell something about us just getting a break once in awhile. But, I have to continue to hold on to the things I know are true. So please pray that Cohen's eyes don't get worse, or even that they get better. And if he does have to have surgery, well...we'll cross that bridge later. Pray for our hearts as this has been a long, long, long journey and we want this part to be over.

Other than that Cohen is getting his list checked off nicely. And Happy 4 Month Birthday to Cohen (yesterday)!

1)Pass a carseat test - Cohen has to sit in his carseat for 90 minutes and not have any ABCs (drop his heart rate or oxygen) He is doing this as I type....he is 40 minutes in, so far so good. DONE!

2) Have another cranial ultrasound to check on his brain bleed. He had a Grade I on one side after he was born. This is the lowest one, so that's good. It was resolving at the one they checked last month. Also good.

3) Have his labs checked tomorrow to make sure he is still doing okay on his oxygen settings.  His labs were really good!

4) Have an eye exam Boo...see above.

5) Pass a hearing test Passed no problem! even pooped during the test. I think that's his way pf getting back at people for messing with him.

6) We have to find a pediatrician and schedule an appt for Tuesday if he gets discharged Monday

7) Get all of his discharge teaching...learn how to deal with his feeding tube and oxygen

8) Maybe have another echo?

9) Have a test done where they insert dye into his bladder and kidneys to make sure there is no damage from a UTI he had long, long ago

10) Get his 4 month immunizations

11) Run to the store for special bottles and preemie nipples and whatever else we need for him to come home

Maybe Monday!?

So, I threw a little fit yesterday and it seemed to get things moving. It went something along the lines of me crying to the nurse that I didn't want Cohen to still be here for his 6 month birthday and that it was unrealistic for them to expect him to take all of his feeds before he went home because I don't have that much sanity left and didn't want to push him that hard. The wonderful nurse went and talked to the Drs who came and talked to me. We talked about transferring him up to St. Joseph's in Bellingham. However, we also discussed that most of the things that could be done for him in the nursery there we could do at home. SO, what does this mean!? It means that we need to get a few things done and then they will probably let him go home Monday!!!!! (Realistically, I'm giving it a few extra days just in case...I would be perfectly happy if he was home sometime next week). But first, we have to:

1)Pass a carseat test - Cohen has to sit in his carseat for 90 minutes and not have any ABCs (drop his heart rate or oxygen) He is doing this as I type....he is 40 minutes in, so far so good. DONE!

2) Have another cranial ultrasound to check on his brain bleed. He had a Grade I on one side after he was born. This is the lowest one, so that's good. It was resolving at the one they checked last month. Also good.

3) Have his labs checked tomorrow to make sure he is still doing okay on his oxygen settings.

4) Have an eye exam

5) Pass a hearing test

6) We have to find a pediatrician and schedule an appt for Tuesday if he gets discharged Monday

7) Get all of his discharge teaching...learn how to deal with his feeding tube and oxygen

8) Maybe have another echo?

9) Have a test done where they insert dye into his bladder and kidneys to make sure there is no damage from a UTI he had long, long ago

10) Get his 4 month immunizations

11) Run to the store for special bottles and preemie nipples and whatever else we need for him to come home

No problem right!? We'll see if it all happens by Monday! Say a little prayer for us, I imagine this will be a little bit of a whirlwind next few days. While we are THRILLED to be taking him home, we are also a little nervous. We are leaving behind our nurses and monitors and everything that we have known. This has been our home for the last 4 months. But I know it will be so great to get him home.

{Big boy in his car seat}

How Do you Measure?

Cohen is 120 days old.
2880 hours old.
172,800 minutes old.
1,0368,000 seconds old.
With the exception of the 15 minutes he spent out of his room yesterday, all of those days, hours, minutes, seconds, spent in the hospital.

Remember the "Rent" song " 525,600 minutes"? They talk about a year in minutes and how do you measure a year in the life? I had that song stuck in my head this morning and although the subject is different, and we haven't been there quite a year, I found myself thinking how do you measure 120 days in the hospital?

By number of times Cohen has had labs drawn?
By the number of IV lines he has had?
By the number of diapers he has gone through?
By the number of outfits he has worn?
By the number of syringes of food he has gotten?
By the number of binkys we have gone through due to him growing or dropping them on the floor?
By the number of hospital gowns we have worn to hold him?
By the number of pictures we have taken of him?
By the number of miles we have driven back and forth from Lynden to Seattle, the hospital to the home and back again?
By the number of times we have ready "Guess How Much I Love You" and "Goodnight Moon"?
By the number of nurses and doctors he has had?
By the number of tears we have cried over him?
By the number of prayers we have said for him?
By the number of minutes we spent begging God not to take him from us?
By the number of minutes we have spent celebrating that he is still alive?
By the number of things he has overcome?
Maybe it's all of the above. Maybe that's how you measure 4 months in our life.

After yesterday was so great, today was frustrating. I think we all got so excited that Cohen could finally eat that we wore him out. He only breastfed twice today and slept through the rest of his feeds. I talked to his attending Dr a little about realistic expectations for Cohen before he goes home. If they really want him to take ALL of his feeds by bottle/breast before he goes home (which is what the majority of other babies have to do), we are going to be in the hospital for awhile longer. Somehow the Drs had missed the memo that we were wanting to get him home and were more than willing to take him home with a feeding tube. We talked about the possibility of transferring him up to Bellingham, or figuring out a more concrete plan for what they want him to do with his feeds. Like maybe they will see what he does in a week and then teach us how to take care of his oxygen/feeding tube and send him home when he's ready. Or maybe he would just take feedings during the day and be tube fed at night. Something like that. At this  point, the Dr says pretty much the only thing keeping him there is his feeding. It's all a little up in the air. We are tired and honestly, I don't have much energy left for all of these ups and downs. But of course we want to do what is going to be best for Cohen in the long run whether that's staying at the hospital or taking him home. The Drs are going to have a little meeting tomorrow to kind of get everybody's input and see what they think will be the best plan for Cohen. Please pray for wisdom for us and the Drs that we are doing what is best for Cohen and for our family. It's been way too long since we've all been together as a family.

A Day Full of Firsts

Where to start!? We had a very big day today...

1) Cohen breastfed like a champ

2)We got our 2nd ever family picture taken

3) Cohen got to meet his cousin Michelle who got to come see him at the hospital!

4) Cohen took his first bottle! (only 20 mL, but still!)

5) Cohen's picture taking nurse was back so he had a mini photo session and my sister Karen took some cute ones too

6) My aunties threw me a baby shower! We played fun games, opened presents and I got to see lots of my family that I haven't seen in awhile. Thanks for coming everybody!

5) And...WE WENT OUTSIDE!!!!!!!!!!!!! That's right! I asked his Dr in rounds if he could go on a little field trip and he said yes. I practically jumped up and down and hugged the Dr, but I held myself back. So, we bundled him up, hooked him up to some portable oxygen and took him down to the main hospital (it's a weekend and there are hardly any people around and I just covered him up when we passed people). He had his first elevator ride, his first leaving of the unit, and his very first breath of fresh outside air. We drove him out the exit and back in the entrance. It was kind of cold out so we just went out real quick and back in. And Cohen loved it. He slept the whole time :) It's possible that I might have loved it more.

6) This was one of the best days I have had in a long time

7) PICTURES: (none taken by me!)

{Family}

{LOVE this one :) Thanks Karen!}

{Meeting Michelle}

 {First Bottle}

 {FREE!!!!!}

 {Sweet Boy}

 {Cohen's first time outside}

 {Strolling}