Weight Gain

This morning started out pretty emotional. Zoey woke me up by tickling me under my chin. Once I sat up she smiled and asked where the baby was. I had to tell her that Michael was sick again and he had to go back to the hospital. She started crying right away and telling me no. Of course I begin to cry too. We went on like this for a few minutes until she decided that she was alright and wanted to go downstairs. She watches Yo Gabba Gabba every morning religiously. She has to watch her Robot (Plex).

I call Michaels nurse every morning when I wake up and every night before bed. This morning his nurse was still seeing some irregular rhythm and his heart rate was dipping down a little too low (70s & 80s). They decided to tweak the arrhythmia meds to see if they could get the results they needed. So far so good. His heart rate is now around 100 - 120s. This is much closer to where they want it. This evening his nurse said she hadn't seen any arrhythmia since she came on shift. This is a very good sign, the more stable his heart rate is, the more effective the blood flow is. After talking to Michael's cardiologist yesterday we know he needs this stability to gain weight. The risks for surgery get a little lower with every bit of weight he gains.

We brought Zoey to see Michael this evening and she was thrilled. She wanted to sit with him and hold him, and do all the things she'd done with him at home. She loves being a big sister and having a little baby to hold and kiss. She slobbered on his forehead of course. Tonight we all watched Surfs Up and had some snacks. Zoey had a lot of fun.
Michael's  nurse wanted to make us aware of a recommendation she had thrown out during rounds this morning. She had asked about getting him a G-tube. She explained that the current feeding tube was intended as a short term fix. It helps babies get nutrition, but it can come out easily and there is a chance he could cough it up and inhale it. Since it doesn't look like he is gaining weight quick enough, she thought it would be a good idea if we discussed getting him a more permanent solution. He's also getting a little more mobile which increases the risk of him pulling out his current one. I can't keep him swaddled forever.  The G-tube is like a direct link to his belly from the outside. He wouldn't have a tube down his throat anymore, and there is no risk of coughing it up and inhaling it.
After hearing this, my first thought was definitely against it. It would be another surgery to get the "button" placed, and he would have a permanent tube coming out of his belly. I also thought that he would have this "button" for the rest of his life. She reassured me that he would only have it as long as he needed it. It would create another small scar on his belly, and the surgery is pretty quick and easy. I warmed up to the idea after researching it and getting some questions answered. If Michael doesn't gain weight, then the risks of his next possible surgery will remain high and the odds will not be in our favor. We need him gaining weight. He only drinks about an ounce by himself.  His goal is just over two ounces so we have to tube feed him over an ounce every time he eats. This evening he drank the full amount from a bottle for us! We were shocked!  He also slept through his next two feeds with a little awake time in between. The reason he is having a hard time eating is simply because he cannot endure it. He just gets too tired and passes out before he is done with the volume. This G-tube thing worried me at first but I am convinced that this may be the only way to get Michael to start gaining the weight we need him to. I need me a chubby baby :)

Arrhythmic Back Up

Ever since Saturday night Jaron and I have been trying to keep in touch with everyone to let them know the situation with Michael. I can't believe I'm still forgetting people. I'm trying to keep everyone up to date and unfortunately my phone can't keep up. The battery is going through more work than ever. I'm looking into getting one with a keypad so that I can type on it faster. 

Michael is again, Critically Stable. The poor thing must have been having arrhythmia issues for at least a day before his poor little body couldn't compensate any longer. The doctors are still amazed as to what he is capable of and how fast he's able to recover from something so aggressive. The first time I left Michael at home since we'd arrived here on Tuesday was Saturday night. All I was doing was having a quick dinner. When I got home I'd notified Michaels nurse of what he was doing to confirm he was probably having an issue breathing a few minutes before even if he wasn't now. I then notified the CICU at Children's of the issue and they asked me to call an ambulance so that we could get up there as soon as possible. My heart broke and I fell apart. I'd never had to call 911 before so that they could send an ambulance. I live 6 houses up from a fire house and was talking later on with the paramedics with how lucky we are. I was given an permission to walk Michael over to the fire house if I ever thought they were taking too long to get to my house as long as I called 911 on the way. The paramedics were wonderful and Michaels numbers were showing fairly normal on the ride to Children's. Once we arrived Michael had been so dehydrated that they couldn't get an IV in him. They tried both hands, both arms and his ankle. We finally went up to the CICU and they called some nurses down from the NICU to have them put one in and the only place they could get it was back in his scalp. The alarms that night were going off every few moments but its also the best sleep I'd gotten since getting home. I was unable to feed him again and the nurses were monitoring everything. I fell apart and shut down. I slept. His mitral valve was causing pressure to back up to the left atrium which enlarged and backed up fluid to the lungs which caused him to struggle with breathing which then backed up fluid to his liver which began to enlarge as well. After being put on a lot of diuretics his fluids decreased and his liver and lungs are looking much better. The underlying problem is still his mitral valve. 

Today he is looking pink again and they have him on the medication he was already on plus one more, hoping to get the arrhythmia under control again. In speaking with our Cardiologist we are giving the medications one more shot. We need Michael to be as large/old as possible for this next surgery and the medication is the only thing that's going to get us there. If his arrhythmia breaks through this medication as well then by the end of the week we'll be having to look into the most least risky procedure which is still more risk than we'd like to take. Even if we can get him to gain another few pounds I would be happy. 

I was so excited to be home and working with my own environment and knew I'd end up back at Children's at some point I just didn't expect it this soon. My prayers are stronger than ever and so is the support we're getting from everyone around us. My baby is fighting harder than I've ever had to and he's showing miraculous strength. He was so happy to see me this morning he was giving me great big smiles. The nurses are telling me that they are surprised he is smiling so early and he was actually engaging in sound play this morning while "talking" back and forth with me. He's my little archangel, warming my heart and changing my life. Thank you everyone for keeping us in your prayers. 

 

Uncontrollable Emotions

We had a pretty long night, his alarms were going off for the majority of the time. He seems to be doing ok when you look at him. He is a little pale and clammy. But he is wide awake and looking all around. His heart rate is jumping all over the place. He is not in the atrial flutter, but he can not shake this arrhythmia. The docs are all pretty worried about him. They think he has been having irregular rhythms for the last couple days and he just couldn't tolerate it anymore today.  The rhythm specialist wants to try putting him on a couple more arrhythmia medicines, but I think everyone is starting to look more at the mitral valve.  They want to get him on the meds to prove that it is his mitral valve.  The docs have told us multiple times operating on a valve this small is not ideal, but they may not have a choice in his case.

Bryt and I are both exhausted. I didn't sleep last night. I was up all night talking to the nurses and getting all my questions answered. I think it was the first night Bryt has gotten any sleep since we left here on tues. She has been going 24/7. I can't imagine how tired she is. She told me this morning the alarms were comforting and she was finally able to relax enough to sleep. 

If you read my last post, you could probably tell that I am not handling this well. I have been trying to get through this with a smile on my face, but I had a small breakdown last night. I think I hurt some feelings and maybe made people fell uncomfortable. I feel guilty for it, but I also recognize that I am a mess and don't know how to control my emotions during this. I am sure other people have been in similar situations and you can't help but get frustrated at times. I slept for a couple hours this morning, so I feel a bit better now. Thinking a little more clearly than I was last night. 

This is just hard, and when you are exhausted and stressed it doesn't make it any easier. I am very thankful for all of my wonderful friends and family. You have all made this so much easier. The women at our church have been bringing us dinners which has been amazing. It is nice to see people and visit with them for a little bit. I can't even begin to count all the things our family has done for us.  I feel much better this morning. Michael has not improved at all, but Bryt and I are doing a little better than we were last night. 

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