and we didn’t have to steal him, haha.

That’s all I have time to say right now

We are staying in the hospital again tomorrow (Sunday) night. If Ethan continues to do well, he will be coming home with us on Monday. He’s still gaining a lot of weight, which is fantastic. He’s up to 6 lbs 3 ounces now. That is almost a pound more than his birth weight.

I went to the hospital to visit him this morning and I had a very nice chat with one of the nurse practitioners. We had a nice, calm, friendly talk about how he’s doing, what is expected of him before he leaves, what we can expect when we get him home, and how we should take care of him when he gets home, etc etc etc. I really enjoyed talking to her.

They don’t expect him to be 100% fully mature by the time he leaves the hospital. They do expect him to be at the point where Aaron and I can anticipate when he might have a suck apnea episode and prevent him from having a significant oxygen desaturation and color change. He will be mature enough that his episodes will be preceded by clues that we can recognize. We will have to be very observant of him while he is feeding – making sure that he is breathing and not getting too consumed with just sucking on the bottle. If he is pausing his breathing for too long or if he takes nothing but short rapid breaths, we have to take the bottle out and give him a chance to remember to breathe. In a few weeks, he should grow out of this.

He will continue to be on caffeine and wear the apnea monitor until at least 6 weeks past his due date. That is usually the time when preemies are re-evaluated to determine their need to continue caffeine and monitoring. In about 8 weeks, he will have to go back to the hospital and have another pneumogram to determine whether or not he still needs to be monitored. They did reprogram his monitor with a high heart rate alarm set at 230 beats per minute. It was set at 200, and it would go off anytime he got mad or took a poop. Now maybe we can sleep a little better without that monitor going off all the time for no good reason.

Since he is premature, he does not have the fully developed immune system of a baby born at full term. We have to be careful about his exposure to illness. To prevent a serious RSV infection, he will have a Synagis vaccine once per month for the next 5 months. We will have to become germ nazis, particularly because he was born at the beginning of the cold and flu season. He really shouldn’t have a lot of visitors for a few months. Anyone who does come over to see him needs to be 100% well – no colds, infections, etc – and they must wash hands thoroughly before holding him. Everyone who will see him regularly ( as a caregiver ) will need to have a flu shot. He can’t go to crowded public places for many months – no grocery stores, restaurants, malls, etc. He can’t be around children and he can’t be around people who are sick or who have been exposed to sickness. When I do bring him out in public, he should wear the mittens on his hands to prevent people from touching his hands. Touching his feet/head is OK, but hands are out because he puts them in his mouth. We can go for walks when the weather is nice and he can go places where there aren’t tons of people. These rules need to stay in place at least through the winter months and probably until he’s 6 months old.

Here are few cute pictures from Tuesday night when we stayed at the hospital. Ethan was 16 days old here. Tim’s parents, Carmen and Paul, sent Ethan this tiny teddy bear. It is just the perfect size for him!

We went to the hospital today to check on Ethan and bring him some more milk. We had another talk with the staff. Today we had a talk with another nurse practitioner to try to find out exactly what was going on with Ethan, what was preventing him from coming home, what is the purpose of me staying with him for days on end in the hospital. I think we finally got through to them, or at least to her, where we are coming from.

She said that she had been told that I was very set on breastfeeding him and I was pushing for them to allow me to breast feed him. I had to explain that I was very set on feeding him breastmilk, and that ideally I would like to breast feed him. But considering the circumstances, I am not comfortable with breast feeding him and I would like to try it only when he is ready. Previous nurses told me that if I didn’t start breastfeeding him now, he would never learn. And that is why I was attempting it at all. I was not pushing the issue on my own. I told her that I am completely fine with pumping all the time and feeding him bottles until he is older and stronger and more capable of doing it. So that particular issue has been cleared up, for now at least.

She had also been told that I had a bad night with him the other night and that is why I needed to repeat the room-in and be coached on what to do with him. I told her that I felt very confident about the night we had in the hospital. I thought it went really well. I had an issue with him eating for the first feeding, but we called the nurse in for some pointers. after she gave us some advice, we had much better success with his feeding. All the night feedings went really well, and I didn’t need any assistance at all. I told her that noone asked me how I felt about how that night went. They drew their own conclusion and passed along information that was not true. I told her how the morning nurse chewed me out for not feeding him exactly on the schedule and how that information may have been relayed as me “having a bad night” with feeding him.

She said another reason that we have to room-in again is to make sure that we can feed him without him turning blue in the face. She said he needs to stop turning blue in the face before he can come home. OK, that makes perfect sense to me. It is scary when he turns blue in the face and of course, it is not normal. My problem is this: They are pressuring us to room-in as soon as possible even though they do not think he’s ready to go home. He still has apnea and turns blue for the nurses. If he still turns blue for the nurses, who are experts in feeding babies with this problem, that means he is not ready to go home. Why have us come to the hospital to be observed with preventing his suck apnea when they know that he is not ready to come home. If the nurses can’t prevent it, they know we can’t prevent it either. So why ask us to come up there and be observed when they know with certainty that he will have suck apnea and turn blue. I just don’t get it! I feel like they are giving us the run around and wasting our time.

We also had to explain that rooming in for several nights is really not possible for us, particularly on the schedule they want. I told her that I felt pressured into rooming in again on Friday, and that it was quite unrealistic for us to do it that soon. We have had to push back our lives, including my work, to spend so much time there. I can’t get any work done at the hospital because they do not have internet access. Therefore, I had to delay doing some work that needed to be done. I did this because I was told he would be home on Wednesday and I knew that once he was home, I would have so much more time to devote to getting my work done. Now I am behind on work and Aaron is going out of town for his grandfather’s funeral and they are pressuring us to stay again. I explained to the nurse practitioner that it was a very poor time for them to be evaluating me on whether or not I could take care of him as it is only adding ridiculous amounts of stress to our already over-stressful situation. If he isn’t coming home this weekend, I really don’t see the need for me to room in immediately. If they gave me time to get caught up with work and gave Aaron time to return from the funeral, it would be a much more beneficial situation for all of us. And it would certainly be beneficial to give Ethan a few more days to mature so that he will be less likely to have episodes of suck apnea.

The good news is that Ethan now weighs 6 pounds! He’s really packing on the weight. His nurse today hadn’t seen him in a few days, and he said he was shocked at how much Ethan had grown since he had seen him last.

I feel like I’m stuck in this novel: http://www.gutenberg.org/dirs/etext05/ktria11.txt

And I forgot to mention in the previous post that Ethan’s weight is up to 5 lbs 13 ounces now.

Aaron and I roomed in at the hospital last night because Ethan was supposed to come home today. The night went really well, or so I thought. This morning I got chewed out by the nurse for not feeding him on “the schedule”. Like I am going to let him cry for an hour if he wakes up early and is hungry. When he gets mad, his heart rate shoots up and his monitor screams until he calms down. I doubt its very good for him or for me to have to deal with that. I was also chewed out for not refrigerating the breast milk right away. Following the advice of the previous two nurses AND the pamphlet that lactation gave me, I was pumping milk to prepare the bottle for his next feeding. I was told that keeping the milk at room temperate was fine for 4 (or 6 or 8 depending on who you ask) hours. The morning nurse gave me a mental breakdown. I was feeling so positive about how well the night went – no issues with breathing or desaturation – and she totally crushed me.

Things just went downhill for the rest of the day. Ethan didn’t come home today like we thought he would, and at this point we don’t know when he can come home. His pneumogram results were bad. Even on caffeine, his results were extremely abnormal. He has various types of apnea and he randomly loses oxygen saturation. This happens frequently throughout the night. I have to room in again on Friday night, possibly stay in the hospital for multiple days in a row. They want me to be his primary caregiver and keep him hooked up to all the monitors to make sure I know what to do if he has any issues. They want to observe me and make sure I know how to feed him properly.

For weeks now we were told that he didn’t have any problems other than his suck swallow breathe reflex, and once he learned to eat from a bottle and gain weight, he would be ready to go home. Now, they are saying they are concerned about his breathing. For weeks we were told that the desaturation and apnea episodes were not a big deal because he has never required any kind of stimulation or oxygen to get him to breathe. He takes himself right out of the episode and he breathes fine again. I never thought it was a concern or anything to worry about. We were told that is why he would go home on a monitor – that is no big deal – most babies go home from the NICU on a monitor. Now we’re being told that its a major concern, that he is at a highly increased rate for SIDS, and blah blah blah. if it is so serious, why weren’t we told it was serious from the beginning???!!!

I am so sick of that stupid hospital. I told the pediatrician that I didn’t want him at that hospital anymore. We really want to move him somewhere else, Crosby or Forrest General. Yes, Crosby is really crappy but so is Northshore. They aren’t really doing anything for him, other than giving us grief. Might as well have that done close to home. The pediatrician said they cannot move him across state lines. WHATEVER.

They think we are idiots and that we’re trying to bust him out of jail or something – take him home before he is ready. If he’s truly not ready to come home, I don’t want him home. I don’t want him here if I am unable to give him the care he needs. The last thing we want is for him to end up back in the hospital because he has some terrible breathing issue. A good number of the people at the hospital don’t take the time to listen or to be sensitive to what the parents are experiencing. And they are so used to dealing with idiots they treat everyone like an idiot. We had a really good talk with the pediatrician today, but it took Aaron nearly telling her to shut up and listen for a minute to get her to realize that we were serious and wanted serious answers complete with all the medical jargon as we are completely capable of understanding the medical jargon. I’m rambling…

I want him to get better and I know that it might take some time, but I am so sick of stupid Northshore hospital. I never wanted to go there in the first place, and I never should have agreed to it. the only reason I agreed to go there is because I wanted my doctor to be there for the delivery and there was a chance he wouldn’t make it to Slidell Memorial on time since I planned to deliver naturally with no pain medication. Well, he happened to be out of town and missed my delivery anyway and now we’re stuck at the stupid stupid stupid northshore hospital. Oh well, no point in worrying about it now because I can’t change what has happened. All I know is that we will NEVER go back to that hospital for anything ever again.

I talked to the pediatrician today and she said she would like Ethan to come home this week. We don’t know what day yet, but it will probably be Wednesday or Thursday. They are going to repeat his pneumogram tonight now that he is taking caffeine to help with his breathing. Hopefully the results will be better than the last one.

His weight is up to 5 lbs 10 ounces.

Ethan will be two weeks old tomorrow, and he’ll be ready to come home very soon. We don’t have a date yet, but I think it will be sometime in the next few days. His feeding tube was removed again, and its been out for two days now. He’s gained all his weight back and has surpassed his birth weight by 2 ounces. He now weighs 5 lbs 7 ounces. His pneumogram indicated some problems so when he comes home, he’ll have to be hooked to a monitor 24/7 to alert us if he has any apnea episodes. We met with the monitor company on Friday and got some training on how to operate it. It will be a pain to keep him hooked to a monitor, but it will also be reassuring to know that we’ll be aware if he has any breathing problems.

We’re pretty much ready for him to be home. I vacuumed the car and installed the car seat today. The car seat just barely fits in my car. I don’t think it will fit in Aaron’s car at all. His nursery isn’t completely finished yet, but it is ready enough for him to come home. I did some last minute shopping today to get a few things we still need. I am going to install his closet organizer tomorrow, so I can get all his clothes hung in the closet. His room still needs a door (on order with Phillips), window casing and trim needs caulking/painting, blinds and curtains and pictures need to be hung. That’s all that’s left to do in his room. Once the finishing touches are in place, I will share some pictures of the room.

Well, Ethan just refused to eat yesterday, so they had to put the tube back in last night. Bummer…

His pneumogram results haven’t been evaluated by the neonatologist yet, but the nurses noticed some problems. So they started him on caffeine yesterday. We were at the hospital when he got his first dose of caffeine. That was pretty funny. He was so wired and alert. He had a death grip on my finger and grabbing his lips and cheek with his other hand.

We’re going back to see him this evening, so I’ll post an update after we hear some news from the doctors and nurses.

Update: We went to see Ethan tonight, and the nurses gave us much better news than yesterday. He took all of his feedings by bottle. I guess he just needed some rest yesterday. Or maybe he missed his nose tube. He’s still gaining weight and he’s almost back to his birth weight. Last night he weighed in at 5 lbs 3.4 ounces. So he’s about 1.5 ounces away from his birth weight.

I am 10 days post delivery and so far I have lost about 20 lbs. The swelling in my legs and feet has gotten a lot better. I’m still a bit swollen, but not so bad. I can really tell in my hands because my rings still don’t come close to fitting. But it is much better than it was at the end of my pregnancy. I have lost 9 inches from my waist. I just happened to measure my waist the day before Ethan was born.

I decided to take a belly picture today to show how quickly the body returns to normal. I had taken 33 week belly pictures, but never got around to showing them on the blog. Unfortunately, I did not take any belly pictures for week 34 so I don’t have a final comparison. I did have maternity pictures taken the morning before my water broke, so when those are finished, I will have some nice pictures to share.

Week 6 compared to today, 10 days post partum

And here’s week 6, week 33, and 10 days post partum