Call 911

So here we are... at childrens...again. The entry for today was going to be about how good he was doing and how we all love him so much.  He has been really active and seems much more comfortable at home with us than at the hospital. Bryt went out for dinner with my mom and sisters to celebrate mothers day. I was not too thrilled about being home alone with him, but I knew I would have to do it eventually. I was fairly grumpy when Bryt left, but the first part of the night went pretty well. I made some dinner and watched a movie with Zoey.  I fed Michael his bottle and then gave him the rest in his tube. It was the first time I had actually had to use our pump. I didn't realize you had to pull  open the bag more after you took the cap off, so when I started pouring in the milk it spilled all over the place.
After his feed was done I took him to the couch to cuddle with him. He started getting pretty fussy and then started grunting quite a bit. Then he started doing this weird grunting/choking thing. He was straining really hard for each breath and it looked like he was not getting any air. He started getting a little pale and then started sweating. When I noticed he was sweating I  started to panic. I called Bryt and told her to come home. Zoey was starting to freak out. She had already been upset that Bryt was gone, but now I was ignoring her too. I feel so guilty for expecting so much from my little girl.  I am getting so burnt out on all of this. Bryttney rushed home and brought a pack of worried women with her. They all came in and Bryttney called the  CICU. She explained what was going on and was told to call 911. By this point I was pretty much checked out. There were sirens the second Bryt hung up the phone. There were women all over my house saying how bad he looked, Bryt was balling and Zoey was screaming.... I just went numb. I am exhausted and I don't know how to deal with this anymore. Then I saw one of my sisters pick him up wrong and it was just too much.  I don't know how to deal with this. There is so much up and down, and so many people wanting to see him and love him. I wish he was healthy and that people could come pick him up like a normal baby. I wish his cousins could come see him and play with him.  It has been so nice seeing people outside the hospital again. I love having my family and friends over, but when we are both in that freak out mode, having more people around is not very helpful. I just wanted to scream and cry and throw a fit like a little kid.
The ambulance got there within a few minutes and 3 or 4 of them came in to look at Michael. They said he was looking good, but since he had just had heart surgery they didn't want to take any chances. Bryt got to ride in the Ambulance. I drove down separately.
When I got back to his room they were just taking him to get his Xray. His lungs look a little wet and there might be some sort of viral infection in the right side. After he got back from his Xray, they started trying to get an IV in him. They tried both his hands and both his arms. Then they called in a third nurse and tried his leg.  This was extremely frustrating! Michael was balling and Bryt and I both wanted to comfort him. Each time they poked him he started screaming and crying. We just sat there quietly with tears in our eyes. Then they brought in a fourth person to try, she was looking at his neck. I couldn't handle it any more, I tasked them if we could just go to the CICU and try the IV up there. There was a little bit of conversation and then a couple minutes later we got to move to the CICU.
When we got up here, they called down some NICU nurses who tried on one of his arms and then got one in his head. They drew their labs and got him hooked up to two pumps of meds. His heart rate is not very steady, it keeps dipping down to the 70s and 80's and then jumping all over the place.  We are ready for sleep. This is exhausting, it's very depressing and really makes you feel like giving up.

Insomnia

I remember when I was growing up, waking up in the middle of the night to the sound of my mom doing laundry right outside my bedroom. It was comforting to know that she was awake and still so near. I never wondered why she couldn't sleep. It couldn't have been that she had 8 kids and a ton of laundry to do. Actually that could have been it. I think about that know because I'm writing this while I wait for Michaels 3am feed to end and I just brought the laundry upstairs. I found myself unable to sleep after his 12am feed so I showered. It felt so good to have some quiet alone time. I'd much rather be cuddling Zoey in bed but wow I needed a shower. I straightened up the living room and started getting clothes out of the dryer when I heard Zoey crying for me upstairs. I went straight up and was able to get her back to sleep but Jaron was still amazed that it was only 2am. He usually stays up till about now doing art and drawing but it seems that tonight we switched rolls.

First thing this morning I called Michaels nurse and left her a voicemail letting her know that he'd pulled out his tube and I wasn't able to get it back in. The lady that brought the IV stand for Michaels food pump was able to bring me some new tubes with the wire and at first I was confident that I could get his tube back in without help. She left and I began to prepare him. Swaddled him tight and layed him straight. I couldn't do it. I tried a few times and just didn't feel comfortable with the placement because he was freaking out. He wasn't crying when I did it at the hospital so I freaked out just after he did. He didn't eat well last night and I knew he wasn't getting the amount he needed. His nurse called and even though she wasn't scheduled to show up until tomorrow she was more than happy to come today and help me. I was so relieved when she'd arrived. She walked me through everything and reassured me that this is not a one person job and that I should have someone to help me every time for the first few times. I also realized that I need to have him swaddled with his arms down when I'm not holding him. His hands go straight to his nose and it's making me crazy thinking about having to do it again. The nurse also did his wellness check and weighed him again. Yesterday he weighed 8lbs 9 1/2 ounces. Today he weighed 8lbs 6 1/2 ounces. In less than a 24hr period he lost 3 ounces. This feeding thing is hard and I hate pumping. It is amazing what you find yourself capable of once you know know that there is only the one option. It's not an option of what I want to do. It's only an option of what I am doing, and this is what I am doing.

First thing Zoey asked for this morning was baby Michael. She wanted to know where he was and she was thrilled that he was laying right next to us. She loves him so much and knows he's not there to play with. She enjoys holding him with help from mom and dad and loves showing him all of her toys even if his eyes are closed. She has been such a big help to me and I love her so much. I try every moment to show her I do. I can also tell you that I do not love Elmo - Or robots. She loves Sesame Street and Yo Gabba Gabba so much that if it's not on the tv then she'll ask for it until it is. Today I gave in because I was side tracked by Michaels tube but I'm already thinking of the things I can do with her today that have nothing to do with the tv. She misses her friends at daycare but I'm glad I can get down and play with her still.

I want to thank everyone again for their support. Whether just reading our story or dropping off dinners and donating everyone has been more than generous and my family is so grateful. We couldn't do this without all of you. I've cried many times this week over how much help we've gotten from family and friends and I hope everyone knows that I am making sure their good deeds are gratefully appreciated. This has definitely been a long road but everyone has given us a lot to look forward to. A life with our baby. Thank you all so much.

Sweet Adrenaline

What a rush these last few days have been. I don't think I've ever been so busy in my entire life. We were told a few days ago that Michael was doing so well that they were looking to discharge him. Home? Yes! But wait.. I wasn't expecting this to come for a while still. Was the house ready? Were we ready? We began learning all we needed to from the nurses.

I began giving him his medications (4 in the morning and 3 at night). We watched 3 movies the hospital provides (Car Seat Safety, Crying Happens and CPR for Infants). We learned how to clean his incisions and bathe him. Then we had to learn how to remove his feeding tube AND replace it. So yesterday I got the opportunity to remove his feeding tube and then had to put it back in. I did it! There was screaming in my head the whole time but that didn't stop me. I never thought I'd have to shove something up my kids nose and hope that it went down correctly. There was only minimal crying from Michael and I apologized to him over and over again for having to do something so horrible to him. The nurse then taught us how to check the PH balance to make sure the tube was in his belly and not in his lungs.

I finally got to do all of those things I've been wanting to do but put off. Getting his new clean sheets and blankets in the cradle and put it next to the bed. Getting diapers and wipes in the rooms I'll need them in. Getting his bottles washed and ready. And went Crazy on sanitizing everything.

The day had come. We were bringing our sweet angel home. We spent yesterday morning going back and forth from the pharmacy making sure they had the correct medications for us and making sure they were going to start having them in stock (because they didn't yesterday). We got to the hospital and started going over information with the nurses and financial office and poor Zo was exhausted. I'm sure when she heard we were bringing Michael home she had no idea what it entailed. We got him set in his car seat and started to head out of the building. I don't think I've ever been more aware of the people I was coming in contact with. I wanted to hide him from everyone on our way out - just so they didn't breathe in his direction. I found myself wishing for a plastic bubble to put him in. Why didn't the Dr's give us a bubble? I realized after I got home that I was happy without the bubble but that wasn't going to stop me from cleaning everything.

This morning I realized that I only get two hours of sleep between each feeding. With his feeding tube it takes an hour for the whole  2 1/2 ounces to go through. Jaron went to work and so did I. This is definitely a full time job. I finally thought I was getting the hang of things until this evening. Michael pulled out his feeding tube. Yikes. Adrenaline ran through me so fast I got a stomach ache. I thought for a minute that the last thing I gave him through the tube was his Amioderone (his heart medication that is keeping his rhythm out of the flutter - A very sensitive medication) If that was the last thing I gave him and didn't flush his tube that means the medication is still in the tube - Not in him. It took me a few moments to realize that I had flushed his tube with the milk he didn't finish through his bottle. Instant stomach ache. I will Never give him his heart medication last again. He can't miss a dose of this medication or we risk him going back into flutter which means straight back to the hospital for who knows what.

The first day home was in some ways a success. I feel very accomplished but still very nervous. Tomorrow I'll be a busy bee again and already have a ton of calls to make for getting his feeding tube placed back in. Of course they didn't send us home with the wire we need to replace it so wish us luck. Bottles and Nursing only tonight. Yikes!

Don't get too comfortable

It's been a pretty busy week for us so far. I have been working 6am-2pm and then going home and picking up the girls. Then we are all coming to the hospital to see Michael. Zoey is starting to ask to go to the hospital now. She has been so amazing through this whole thing. It's so cool to see her learning and putting things together. She still doesn't understand what's going on, but she knows we talk about the 'hopspippal' a lot. Michael has been doing really good this week. He has all his IV's out, and he is off oxygen. The only thing he has hooked up to him is his feeding tube. Which we will most likely go home with.

Yesterday morning we got up early, did a few chores and them came to the hospital for the rest of the day. All the nurses still say he is the cutest guy around, and they all love holding him.  He has been doing really good again so they are starting to talk about sending us home. They gave us a feeding pump for him and gave us a quick run down of how it works. Now things are starting to get exciting and scary. We have to stay the night at the hospital for the next day or two and learn how to take care of him ourselves... We have to give him his meds and lean how to work his feeding tube. If it comes out.. We have to know how to put it back in... Something neither of us are very excited about.  I already miss our nurses from the CICU, they were so good! 

So tonight is the night we came in to start learning how to do everything.  We spent the whole day with Zoey. We went to the park, we watched a baseball game, and we cleaned the house. Then we took her to Gramdma's house for dinner and spending the night.  She was bummed to see we were leaving as usual. But we spent a long time cuddling her and getting her ready for bed. She did really good when we left.

On the drive down Bryt and I talked about the future and how excited we are to have our family back on a somewhat normal path. We talked about having more kids and how crazy this whole thing has been. Right when got here his alarms were going off. His heart rate was all over the place and was nowhere near the normal Rhythm. Usually he has a couple premature atrial contarctions (PAC) every couple minutes, but he was having so many of them the monitor couldn't even tell what kind of rhythm he was in. His heart rate was going from 150-170-200, it was bouncing all over the place. A couple nurses came in and checked it, then they went out into the hall and called the doctor. Bryt and I are kind beside ourselves. We were just so excited and happy to be able to bring him home. Now his heart rate is all over the place and looking like it could flip into flutter again.  Ug... I am getting burnt out on this up and down business.

The Doctor came in and told us she h was looking over his charts. She said this irregular rhythm started just after his dose of meds was due. He might just be very dependent on this medication and start an irregular rhythm the second it starts wearing off.  They might need to up his meds again tomorrow. Looks like he is going to be here a little longer still. I would rather have him be here doing this than at home though. It's just exhausting getting excited then scared, then excited, then scared. For the moment everything seems to be back to the way it was. He is back in a normal rhythm and sleeping in mommy's arms. The new dose must have just taken a while to kick in. 

This almost sent us into breakdown mode. I feel like we have been doing really good, but this was close to causing a nuclear meltdown. I really want to eat something now.. something delicious 

Happy Days

So I missed the blog yesterday but had stuff I wanted to write so I'm making up for that in todays. I have a lot of pictures I want to share to so it should be fun for you and me.

Jaron started back to work this week so I've been home with Zoey in the mornings and we've been seeing Michael in the evenings. Zoey LOVES being home with Mommy again. Yesterday she took me on a walk that seemed to last forever.. but maybe that's because she rode her little car so far and then I had to carry her and her car home. I've been trying to keep her on her schedule from daycare and during singing time she amazed me by singing her ABC's. Not perfect obviously but she tries to follow along and it is adorable! I'm so proud of her.

I got a call yesterday afternoon from one of the Pediatricians at Kaiser saying the had scheduled Michaels circumcision and that it was happening within the half hour if I wanted to be there. Good thing I didn't really want to be there for that because I couldn't have made it there in time. Instead I went there for the aftermath which was sleeping. He slept the whole time I was there. The nurse also told me that he pretty much slept through the circumcision. The nurse also said he ate awesome yesterday morning and that it obviously wore him out. I sat with Michael sleeping in my arms and watched The Blind Side with Sandra Bullock, crying every time she called Big Mike Michael. Ha - I love the name we picked for our little boy. So here's some pictures of Michael sleeping since that's all he did for me yesterday.

Today me and Zoey got an early start and got to help take her uncle Chase to the airport. She loved the planes. We got to go see baby Michael after that and she loved it. We got some great pictures and he was awake the whole time!

The nurses were awesome and I met with a case worker that says as long as Michael stays on the path he's on that we're looking at heading home next week. Now for those of you that don't know, they do this a lot. I've learned not to get my hopes up but I am still so amazed and happy that he's doing so well that they are even considering it. She also set up for a nurse and a therapist to work with us in our home after he's able to get there. It makes me so relieved that they aren't just sending us on our way wishing us luck. He could also be sent home with his feeding tube so they'll be training me and Jaron to use that tomorrow.

Michael got some new toys I thought I'd share. He was investigating with his mouth and I thought it was so funny.

Of course while I was taking these pictures Zoey was behind me making herself at home. I turned around and she was gulping down my soda. Now there's a good reason to quit drinking it. I don't need her to be a soda addict like me!

Michael showed so much character today. My heart baby is thriving. My family couldn't be as strong as it is today without all of your continued love and support. We feel amazing strength because everyone is lifting us up. Thank you - Thank you - Thank you from all of us!

Back to Work

Today was my first day at work since April 3. Michael has been at the hospital for the first month of his life. It was a nice change going back to work. There were some new people there and everyone was pretty happy to see me. It was nice to see people and start to have a normal routine again. I got there at 6 and left around 3. I was pretty exhausted by the time I got home. I ate a bowl of cereal and then off to the hospital we went. Bryt drove and I slept most of the way here. 

When we got here they had moved him out of the CICU and up to the normal cardiac unit. He also had his scalp IV out! He looks pretty good today. The lighting is a little different up here, so he looks a little bit different color. His hair looks like it might be red... I can't really tell though. this room is a lot more private and the nurses aren't as quick to come shut off alarms. He keeps bending his arm with the PICC line in it and pinching it off. That builds up the pressure in the line and it starts alarming. Bryt and I are becoming pretty familiar with everything, so that alarm does not really worry us, it's just annoying. 

Zoey is doing much better being here today. She is a little more into Michael and not as bored. She likes climbing on the bench and looking out the window. Michael is taking things slow and steady, he is eating about 40ml at each feeding and keeping it down. That is a really good sign, his goal is 70ml. I think he is still gaining a couple grams a day, but not sure. He is slowly moving forward and making us proud. He has been flutter free for a week and a half. 

First Introductions

Today the ban at the hospital was finally lifted and we were able to take Zoey there so her and Michael could meet for the first time. I was so excited for today and maybe even felt a little anxious as the morning rolled along. We all got up early and showered so we were all cleaned up for Michael. Zoey picked out a few balloons for her brother, and no I didn't realize we were being so patriotic. She picked a white star and an Elmo balloon. Then I picked out a blue star for him. Now we had red, white, and blue.

She's been at the hospital before and loves riding the elevator up and down. She loves looking through the glass railings at everything below, and she even loved washing her hands at the sink in front of the CICU. She did not understand that this time she was allowed to finally go through the door. We took her in and got her screened for any illness and she got her first red apple sticker. She likes taking mine off when we get home and putting it on her own shirt. We all had our stickers on and we went to see Michael. Jaron lifted her up and right away she was excited and knew he was her baby Michael. She held his hand and gave him a kiss on the head that was too quick to catch on camera.

She became bored pretty quick because for some strange reason her four week old brother was just laying there not being very entertaining. We turned on a movie for her and got her some juice while I held the baby. I'm so excited to get the chance to do this in the comfort of my own home. The nurse brought me his bottle to feed him (he's still practicing the suck and swallow for drinking since he's only gotten to do it for a few days). He has a swallow study on Friday to make sure it's not going anywhere but his belly. Zoey was interested in watching him eat and watching mom hold him but she was still very bored so we weren't able to stay longer than a couple hours today.

Jaron goes back to work tomorrow morning and me and Zoey will be doing some preschool activities at home. Me and Jaron will take turns spending the evening with Baby Michael and Zoey and sometimes she'll just tag along to hang out with her brother. Looking forward to eventually coming home with my baby. Can't wait for that moment that could be near or far. I love my babies!