Living la vida loco!

I forgot how crazy it is to have a new baby in the house. Let me go back over the last 6 days and catch you up.

Tuesday March 17th we were scheduled to room in at the hospital (that means we have to stay overnight in a room with the baby to prove we can handle the equipment). We arrived at the hospital around 12:45 pm so we could meet with the medical supply company who would be supplying Ryan's oxygen equipment at 1 pm. Of course they didn't get to the hospital until all most 2 pm. We moved Ryan into the rooming in room which is in the NICU but is set up like a hotel room. A cheap hotel room with a hid-a-bed.

The equipment guy set up an oxygen compressor (that's a unit that takes room air and compress the oxygen before delivering it to the patient) and showed us how to use portable oxygen tanks for going out. They also set us up with a pulse ox monitor. That is the little light probe they put on your finger if your an adult (your foot if your a baby) that measure the amount of oxygen in your blood. The company rep then rushed out the door before making sure all was well, which it wasn't.

The pulse ox monitor keep alarming that Ryan didn't have enough oxygen. We had him turned up to 200 cc of oxygen and we still couldn't raise his pulse ox. Keep in mind when he was hooked to the oxygen in the NICU he was only on 75 cc's and that was just 10 minutes before. So we hooked up the portable oxygen tank to see where he was at and on 100 cc of oxygen (the tank only does 50 or 100 not 75) he pulse ox was back where it should be. So we called the equipment guy and told him things weren't working.

He came back to the NICU and checked the compressor and decided it wasn't working so he replaced it and quickly left again before making sure the rest of the equipment was working. So we hooked him back to the compressor and still we had problems. We changed the probe on his foot to the pulse ox monitor and that helped some but he was still needing way too much oxygen. So we called the guy back again. This time our nurse read him the riot act and told him to check all the equipment and not leave until it was all working. This time he replaced the flow meter (the part that adjusts how much oxygen Ryan is getting) and finally that seemed to fix the problem.

Finally we could settle in for the night to see how well we could take care of our baby. Little did we know our equipment issues weren't over. As we tried to fall asleep the monitor keep alarming, sometimes he was too high sometimes too low. We also had his oxygen at 100 cc's which was more then he had been on. I was afraid if we turned him up more the nurses would decide he wasn't ready to go home. Doug and I spent the whole night pressing the pause on the alarm which made it not go off for 3 minutes. One of us had to stay awake at all times to press the alarm pause. We decided to take 3 hour shifts where one of us slept and one hit the button. Although you really can't sleep when the alarm is going off anyway. It sounds like an air horn in the middle of the night.

The next morning we talked to the nurse and told her what was going on and she said the feared words maybe Ryan wasn't ready to go home. She offered to take Ryan back in the NICU and hook him up to their equipment so see if it was our equipment or him that was the problem. Meanwhile we could get some much needed sleep. I agreed and passed out.

When I woke up several hours later I went in to see how Ryan was doing. He was sound asleep on 75 cc's of oxygen with a stable pulse ox. The nurse said looks like it is your equipment. So we brought our pulse ox monitor in and hook it up on one of his feet and the NICU's monitor to the other to see if it was right. Ours fluctuated more then theirs did, but they were pretty close. Next step was to check our oxygen. We brought the compressor in and hooked it up in place of the pure oxygen in the NICU. We found that the compressed air isn't the same as pure oxygen. Sounds like common sense doesn't it, why didn't we think of that? Instead of 75 cc's of pure oxygen he needed 125cc's of compressed oxygen, another problem solved.

The last issue was that stupid alarm on the pluse ox monitor. The doctor had ordered it to alarm at 98 and above and 90 and below. When he was in the NICU the alarms were set at 100 and 84 and he hardly ever alarmed. At 90-98 he set off the alarm all the time. So we made the doctor listen to our really annoying alarm and see how often it went off and she agreed to change the alarms to 86-100.

We discussed the oxygen issues with the doctor and where Ryan was at. The doctor felt if we were up to it it was still better to send Ryan home as he was getting old enough to need the 24/7 attention of his parents. She told us to go back and get some more sleep and they would get the oxygen people out to change the settings on the pluse ox monitor.

We did sleep a little longer and then started getting ready to go home. My parents were bringing the little boys back home the same day Ryan was coming home so we didn't want to stay all day in the NICU. We went over all the discharge info with the nurse, packed up and left. We got out of the NICU around 3:30 pm and headed home to start our lives again. My parents and the little boys were waiting for us at home. Tyler kept hugging us both and repeating "I missed you".

So now we are justing in a holding pattern. Ryan can't leave the house except to go to the doctor. So we can't all go anywhere. If Andrew didn't have to leave the house to go to school the peditrician would have told us all to avoid public contact. Hopefully Andrew won't bring any illness home. Of course we would still have to leave the house to go to the store so we can't avoid people all together.

Getting home didn't stop our equipment probelms either. They have had to send us more probes for the pluse ox monitor. Apparently they aren't meant to be worn 24/7 by a wiggly baby. They only last about 2 days before they completely die. We also had to get another flow meter. The hosptial added a water bottle to the compressor to humidify the water. It was the wrong one and it caused the flow meter to become filled with water and stop working. Thankfully we have the oxygen tanks as back up. Ryan will see the lung doctor sometime in the next month so hopefully we will have a better idea of when we can get rid of this equipment.

So that's our crazy life. Ryan is home and now we are staying up all night listening to the monitor beep when he moves too much or when he cries. Then staying up all day taking care of the other boys. Doug took 2 weeks off to help me out but as the first week ends I am wishing he had another 2 weeks off. The good news it Ryan will grow fast and we should be past this soon.

It's all coming together!!

So since my last post Ryan has made it over the last hurdle. He stated taking all his feedings about Friday the 13th. On Saturday they were talking like maybe he could room in on Monday night. (Rooming in means we have to spend the night in the hospital to prove we can take care of him and handle the oxygen equipment he will be coming home on) However when I got the hospital Sunday they were testing him for more bacterial and viral infections because he had a really nasty diaper that they thought was suspicious. The doctor that was on Sunday didn't seem to think he was sick but he also didn't seem on board with Ryan going home. He increased his feeding amount from 50 mls to 55 mls. He also changed his feeding from being 55 mls per feeding to however much he wanted each feeding as long as it totaled 220 mls every 12 hours. While that sounds good it actually puts more pressure on him. His first feeding this morning he only took 30 mls and 55 at the next. That left he needing to take 140 mls over the next 2 feedings. The nurse gave him 70 each feed and I worked that little baby until he drank it all! He was so stuffed everytime he moved he spit up. But I wasn't going to let him fail. Failing means we have to stay longer at the hospital.

I was there when the doctor did rounds this morning. (not the same doctor he saw yesterday) She asked me how things were going and I said great we are hoping to get out of here soon. She asked me if they had been talking about him going home. I said they had, it was orignially Monday and then I heard Wednesday. She didn't really take the bait like I had hoped she would. She moved on to the next baby and then came back to get Ryan's chart to do her report. She asked me about my other boys and I told her that my two little ones had been at my mom's house since Ryan was born and that they are coming home this Wednesday and we were hoping to have everyone coming home about the same time. That bait she took, she said she better check to see if we could room in Tuesday night so that Ryan could go home Wednesday. We are offically scheduled to room in tomorrow provided nothing goes wrong between now and then.

Ryan will be going home on oxygen. They ordered what we needed today from the medical supply company. We have to be at the hospital by 1 pm tomorrow to get set up with the oxygen. Doug and I will stay the night in the hospital tomorrow night and prove to the nurses we can take care of Ryan and his oxygen needs and then we can go home Wednesday. Wow, I can't believe this day is finally here. Of course it scares me to death to think about having Ryan home and the other boys home. I know that God will give me strength to survive but I don't think it will be easy. I pray that Ryan doesn't have any major problems that would require him to be readmitted to the hospital or worse. I also pray that nothing happens in the next 24 hours to delay his home coming. We will keep you posted.

So close yet so far away!

I am ready for Ryan to come home. One of these days I am just going to grab him and run. Think they will arrest me for stealing my own baby? I am starting to feel held hostage. Ryan is so close, he just has to taking all his feedings from the bottle. I mean really is this so hard? Lots of babies do it? I realize he shouldn't even be born yet but how long can you use that excuse?

Now Andrew has the flu and I am afraid I will infect Ryan by going to the hospital even though I don't have it. I can't stand the thought of not going to the hospital though. Ryan already avoided getting the bacterial infection going around the NICU, I would hate to be the one who made him sick. I am glad that none of the other boys are here to get the flu.

The ophthalmologist saw Ryan on the 10th. He said that his eyes are fully mature and he didn't see any problems with the development of his eyes. They are still following his liver dysfunction and it isn't getting any better, if anything it is worse. They have started him on a medication that will hopefully correct the problem and restore normal function. If this medication doesn't work they have told me there are others they can try. Beyond that I don't know where this could go.

They are working towards him coming home. They are starting to tell me how to take over his care. The doctor ordered that he take the car seat challenge. That means they put him in his car seat for 90 minutes and monitor him. If he has problems while in the car seat they will know if he needs more oxygen while traveling or if he needs a car bed to be transported in. I am taking their preemie infant CPR class tomorrow.

The next step is just his feedings. If he would only start taking all his feedings. I don't know if it is him or the nurses or a combination of both. I can't be there for every feeding so I don't know how hard they try. They only give him 30 minutes to take his whole feeding too. They say that after 30 minutes he is burning more calories then he is taking in so it isn't worth it to force the feeding. Right now they put the rest of his feed down a tube into his stomach. Of course they won't send him home needing that so he has to learn to eat. I can usually get him to take his whole feed but not always. When he comes home I don't want to be giving him bottles anyway. I am hoping he will breastfeed, but I will do whatever they want us to do so we can get out of the hospital. Once he is home I can work all the details out with the pediatrician.

Please pray that Ryan takes all his feedings. It is the last hurdle to coming home.

I am ready to quit!!

I wish I could call in sick and tired for this job. Things were going so well and now a new problem. The NICU has a c-diff infection going around. We have to wear gowns and gloves to hold our babies. Ryan is in isolation with about 4 other kids because they have all been exposed to the bacteria. The sad thing is this bacteria is in fecal matter. That means that the nurses have not practiced good hygiene between babies. They have changed a diaper and not washed their hands and touch something that went into a babies mouth. It makes me angry and sad. I was feeling so good about Ryan's progress and now I just want to cry when I see him. He doesn't seem sick to me but the pediatrician thinks he has the infection. The culture will be back tomorrow sometime to confrim if he does or doesn't have the infection. If he does it will be 7 days on antibiotics to cure something he should have never gotten in the first place.

They told me I have to bleach all the clothes that Ryan has worn at the hospital. I am sure they will look great after that! I might as well throw them away. Hopefully he won't have the infection and I won't have to worry about all of this. I hate to think of my sweet little guy being sick and in pain.

The current drama

I posted video of Ryan on my facebook profile. I can't figure out how to post a video in here so if you want to see it I guess you will have to check it out on facebook or e-mail me for it.

Ryan is getting better and worse at the same time. His feedings are doing pretty good. He isn't taking his whole bottle at most feedings but he is taking at least half or more. He takes the whole bottle probably once in a 24 hour period. Considering he is only 35 weeks gestation and the suck/swallow/breathe reflex doesn't develop until 34 weeks he is doing pretty good.

His set back is with his lungs. I read in the doctors notes today he is diagnosed as having Chronic Lung Disease. From what I have read that is common in preemies who had to be on a respirator for an extended period of time and their lung tissue can regenerate by the age of 2 or 3. Which will be great in 2 or 3 years but for now we have to deal with daily ups and downs. They took him off the diuretic 3 days ago and yesterday he was looking swollen and today he is slightly more swollen. The doctor ordered 2 doses of Lasix to help remove the excess water in his body. That should help his lungs work better again, but it seems to me that he can't make it without the Lasix. Everytime they take it away he goes right back to where he was and then they give it again he gets better.

This is a huge set back to me. I can see the goal slipping further and further away. I am suddenly feeling really tired and drained. I know he could make a sudden turn for the better and be back on track to come home soon, but it doesn't seem like that is going to happen. I think I want off this roller coaster!! My little boys at my mom's house are starting to ask about coming home. My parents are ready for them to leave and we are really starting to miss them. I would love to have them come home but that just complicates life even more. Right now is when I can be of the most help to the nurses and Ryan. He is doing better and if I am there I get to do all the normal mommy things. Diapers, bottles, baths and cuddling. It kills me to not be there for those things. If the little boys come home then I have to either stay home or work out childcare. I don't want to have to do either of those things it is crazy enough to figure out childcare for Andrew. I can't let myself get stress, I am too close to the finish line. I have to rely on God and all of you praying to see me through. I know I can make it with God by my side.

Thank you to all of you for continuing to pray for us. We are so grateful.

P.S. Check out Ryans new pictures at the bottom.

Time flies when things are going good

I can't believe it has been 2 weeks since I blogged. So here is what is going on. Ryan is doing great. He weighs 5 lbs 7 ozs as of last night. He is still on oxygen and they are predicting that he will go home on oxygen. The good news is the nurses have started talking about him going home. He isn't quite there yet, I think another week or 2 but close! He is bottle feeding all that he can tolerate. That means when he gets tired and won't take a bottle they put it down his feeding tube. They just started letting him try taking a bottle every feeding yesterday and he has been tired. Hopefully today will be better. I don't agree with the hospitals policy of feeding every 3 hours day and night as it seems to make him tired and he doesn't get an extended period of rest but I can't change it.

Ryan is on low flow oxygen and we all think he will go home on oxygen, that seems to be common because of our altitude. They have started changing his protocol's though. He was getting specific vitamins that he was lacking as well as iron. Yesterday they changed it to multivitamins with iron that he could go home on. They reduced the calories they were adding to his milk from 24 to 22, it doesn't seem like much or a big deal but they won't send him home on fortified milk and the next step down is straight breast milk so that is in anticipation of him going home. They took him off Lasix as well, they won't send him home on Lasix but they could send him home on another diuretic if he continued to have fluid in his lungs. (Incase you are saying what is Lasix or diuretics they are drugs that help remove fluids from your body, so if you have swelling of your body or fluid in your lungs or heart that is what they give you to reduce it.)

Taking him off the Lasix could cause him to fail on his oxygen (fail meaning he would have to go back on high flow). If it does then they know he needs that drug for now and they can prescribe something he can take at home. It could delay his stay a little while they get his lungs back to where they need to be but it should be just a few days. In all reality if he got the feeding thing down and doesn't fail on his oxygen in the next few days, then they will keep him for a few more days to make sure he doesn't stop eating or have other issues and then he is ready to go him. Best case senario is he will be him next weekend. Of course it is all just speculation and could change at a moments notice. I am just excited we are finally to this point.