I had my follow-up appointment with my OB today. (All is well there.) He was asking about the babies and telling me about another patient of his who was pregnant with twins. She ruptured her membranes at 27 weeks and started contracting. They gave her all of the same meds that I had and she went into heart failure--a side effect I wasn't aware of at the time I was going through trying to stop labor. Her family has to deal with two very sick babies and a very sick mom. Scary.

That really put things into perspective for me. While it has been rough having the babies in the NICU, things could have been so much worse. I could have delivered at 26 or 27 weeks when I first ruptured Ja.son's sack. The meds could have failed to stop the contractions I had during those two precious weeks.

I could have had something happen to me from all of the medication I was on, something much worse than all of the drama I went through after their birth (which included being scheduled for exploratory surgery for a bowel obstruction and a quarantine among other fun stuff).

While things are not ideal, and won't be until the babies are actually home, we are fortunate. I definitely will remember that.

As 2007 draws to a close, I have been reflecting on the wildness of the past year. So much has happened! The pinnacle, of course, being our little Sh.awn and Ja.son. I look forward to this next year--bringing the boys home, sleepless nights, formula stained clothing for all of us, holding the boys until they are spoiled--and loving every minute of it.

Happy New Year! May 2008 bring much love and happiness to all of us!

The boys are getting their two month shots today. They will start with three and then get two others twelve hours later (Diptet, Polio, Hepatitis, among others). They will also get Tylenol every four hours for the next day to help ward off any signs of fever. It isn't going to be a good day for them.

Is.aac and I have been repeating a scene from "Raising Arizona" over and over again. It is where Glen and Dot tell the main characters, Ed and H.I., that they need to get their baby, Jr., immunized. "He's just got to have his Diptet!" (say that with a Southern drawl)

The scene starts at 3:50 but I couldn't figure out how to cut this down to that one part. So, here is the whole thing.



Diptet - Check

pediatrician - Check

Bank account [for the orthodonture and university (times two)] - Uhhhh, nope

Life insurance - Check

Whew. We're doing okay so far!

This movie ranks among Is.aac's top ten favorites. The way H.I. talks always makes us laugh. If you haven't seen it, we recommend it.

Notice Anything Different?

Do you notice anything about Sh.awn?



Nope, it isn't the new hat. Although, now that I look at it, it is kind of cute. For a hat that is.



Nope, it isn't the cool lip curl Sh.awn can do now.



Nope, it isn't the smashing profile.



Hmmm...What could it be? You're right, he's cannula FREE!

Today when I went in to visit, the respiratory technician came over to say that they had turned off Sh.awn's oxygen earlier that day. She told me not to tell Sh.awn that they had turned it off so he wouldn't try any funny business or something. :-) If he continued to keep his oxygen levels up without the support, they were going to take out his cannula. And they did! Yeah!!!!! Now keep your fingers crossed that he can keep his oxygen levels up from here on out and stay off the nasty cannula for good. (He does have a tendency to drop his oxygen levels when he strains/pushes out his poop, though. Apparently that is common for babies. Made me wonder if my oxygen levels go down during that time, too. The NICU makes you think of the strangest things!)

One step closer to home...

******

I can't wait for the boys to come home. I put two and two together today and figured out that the hand soap we have to use in the NICU make my hands break out in hives that itch like crazy. Oh, the fun never stops.

The Boys Are Together At Last!

The boys had yet another move. This time, they were finally moved together in the same crib! We had no idea this was coming today, either. Imagine my surprise when I walked in to find Ja.son's crib/tub missing. I nearly had a heart attack! It took me a second to realize what was going on.

Here is the new crib--and it actually looks like one, too!




Me trying to console the boys. Both were crying at the same time. It is going to be fun when they do that at home. (Yes that was sarcasm.)


They're a little dark so we didn't wake the boys up with the flash.

Sh.awn and Is.aac...





Me and Ja.son...





Sh.awn is a little like me.

Exhibit A: Here I am with Ja.son. Notice the "look" I'm giving Is.aac.



Exhibit B: Here is Sh.awn. Notice the "look" he's giving Is.aac.



Poor Is.aac. What did he ever do to get such looks from everyone?

The NICU gave out stockings to all the babies on Christmas. A former patient brings them every year. She wrote a letter and filled the stockings with pencils and small things like that. It was really sweet. We took some pictures of the boys with them...




Here is Sh.awn showing his disinterest in the whole picture taking scene...

"Whatever!" says Sh.awn.

Ja.son could care less, too...



We also got the good news that Sh.awn had his oxygen turned off today at around 1:00pm. If he continues without his oxygen levels dropping, they are taking out his cannula this afternoon. I hope he'll be cannula free when I go back tonight! The bottle thing is still evading him much of the time. I can usually coax him into taking up to 1/2 of his feed by bottle when I am there, but he wants nothing to do with the bottle when I am not there.

Ja.son is now taking 1/2 to 2/3 of his formula by bottle for each feed. Yeah! He is still on a minimal amount of oxygen, but he is sooooo close to coming off of his cannula, too!

This is just a quick post to tell you the good news. We have been moved to the special care room. That puts us even closer to coming home! We are getting so close I can feel it! I guess that it will be sometime within the next two weeks (knock, knock, knock on wood).

Isaac fed Jason last night and he took 20 mls (just under an ounce) by bottle before he succumbed to sleep. I fed Shawn. He impressed me by taking 20 mls of formula by bottle, too; his highest intake since he got sick. Of course, he promptly spit a lot of it back up, but we worked that bottle to get it down in the first place! (And I managed to walk away without any formula on me. Ha!)

Jason is now up to 6 pounds 12 ounces and Shawn is 6 pounds 9 ounces. They are almost out of preemie clothes. (They fit best when they curl their legs up; otherwise, they are a smidgen too short!)

The boys had head ultrasounds on Saturday, and things are looking really good. Jason's u/s showed no inflammation. The doctor said that it looks like there is little evidence of him having hydrocephalus at all! Woohoo! He still thinks that there should be little if any residual effects from his whole episode. (Of course he can't see the future, but he said that if he had to guess, he didn't think that there would be many if any problems for him in the future from this.) Shawn's u/s showed one ventricle with no inflammation and the other with mild/moderate inflammation--much less than he had on last week's scan. He hasn't had any more seizures and he has been off the seizure meds for over a week. We are definitely heading in the right direction!

Christmas was a little bittersweet because the boys weren't with us at home, but I am not complaining. My boys are on their way to recovery, and that is the best gift ever!

Happy Holidays!

Merry Christmas everyone! I hope that each and every one of you have a happy holiday season, peaceful time with family and friends, and a wonderful 2008!

**Updated at the bottom**

Every now and then I need to remind myself to stop and think about how blessed I am. It is easy for me to get caught up in the day to day living and forget that. I have two beautiful boys, a wonderful husband and family, two loving cats, a nice home, and great friends who care. I am lucky and I know it.

The change I feel in my outlook is incredible. I don't know if I am finally leveling out my hormones or what, but I think I am getting back to the real me. I love feeling this way.

The boys are doing so well. Ja.son's head ultrasounds now show little to no inflammation in his ventricles. The neurologist (at our home hospital) was very impressed. So far there are no indications that he will have any lasting effects from this whole ordeal except for two scars and his shunt. His head size has decreased almost back to "normal". Sh.awn is also doing better. His ultrasounds show his ventricles are still inflamed, but his condition was more severe than Ja.son's and it has only been two weeks. They did another EEG on him and took him off the anti seizure medication. All indications so far are that his seizures were from the trauma of the surgery and not some lasting condition. His head size has also decreased.

The doctors haven't said anything about when the boys may come home and to be honest, I haven't asked. I feel like it shouldn't be too much longer, and that is enough for me right now. While I would love for them to be home for Christmas, I don't think that will happen.

My fav. doctor here said that there were several notations in the boys' charts about us. The "us" probably means me. He laughed about it and said that they were about us being overly concerned about the boys' care. Can you be "overly concerned" about the care your children are receiving? I just have to shake my head at it and be thankful for leaving that place. He also said that he had a hard time getting information about the boys also, so he can't imagine how it was for us. His communication improved with them at about the same time I had my blow-up there and yelled at everyone. I figure that was because the old hospital decided they wanted us out.

Getting them transferred back to this hospital was more challenging than it should have been. The old hospital waited until the last moment to get approval from our insurance. (We were told that they weren't used to working with insurance!) This was on Friday afternoon. Apparently, the person at the insurance office handling our case went home without approving the move. This led the old hospital to call this hospital and ask them to authorize the transfer. There were quite a few calls back and forth with the end result being that this hospital said they couldn't. The old hospital called the directors of this hospital to complain about the nurses that had been dealing with them during this whole thing. They said these nurses were deliberately trying to prevent the move and other such dribble. This went on all weekend.

The boys were moved on Monday. Sh.awn came first. He was still intubated (12 days) because they didn't want to extubate him before the move and his infections were still bad. He was here a half an hour before these doctors extubated him. Fav. Dr. said that Sh.awn had grown out the bacteria the other hospital was treating him for at this hospital, too, but he wasn't symptomatic. I think fav. Dr. thinks that he had all of these medications and was left on the vent so long for nothing (although he hasn't directly said that). The lung x-rays also cleared up quickly after the tube was removed. It just burns me up that the old hospital made him suffer for so long for NOTHING!!!!!

I was there when Ja.son came over. It was funny to watch the staff from the old hospital look around at this hospital. They commented about how quiet it was and how small. I wouldn't swear to it, but I think they turned their noses up at it, too. That whole belief that this place couldn't be as good as their hospital was evident on their faces.

I have decided that I am going to write a letter to the other hospital. The overall experience was horrendous, but there were a few nurses that I know were caring and supportive. I appreciate them and will name them in my letter. I will also detail my concerns with the system and the care the boys received while at that hospital and my outrage that the doctors had difficulty dealing with "overly concerned" parents. What they do with the letter will be in their hands. I think once I have done that, I am going to put it all behind me the best I can.

You may have noticed that I activated comment moderation. I am sorry to have had to do it. It seems I have an anonymous poster who is emailing and commenting about his/her belief that I caused this to happen to the boys. I want to say to that person that I will make a far better parent to my boys than you ever could so keep your damn opinions to yourself.

Okay, I am off to see my precious babies. Sigh. I am in total love!

Oh, I am working on pictures of Shawn, too! Should be up shortly...

Ja.son's pictures:
I'll let these speak for themselves...

Photo and video editing at www.OneTrueMedia.com

**Updated to add these**

These are the most recent pictures of Sh.awn...

We're back at our hospital. I can't say enough about how happy I am. The doctors have already changed quite a few things about the boys' treatment and I have seen a huge improvement in just a few days.

The biggest difference about this hospital and the last (I still have so much to tell you about the final days at the other hospital) is that the people here care about the boys and us. They wanted us back here. They called several times a week to check on their progress and ask when they would be returned to them. (The other hospital never told us that.) The boys are called "our babies" when the nurses talk about how big they are or how much they've changed. They know the boys' names and recognize them! We are more than a "case" here. We are people. And they expect the boys to do well. It is wonderful.

Both boys are now in cribs and starting back up on nippling. (We had started working on this skill pre-surgery, but they lost a lot of what they had learned while they were recovering.)

I am feeling so much more optimistic now!

Things have been crazy here so I haven't been on much this week. (And I have so much to tell you about!) Anyway, I just wanted to say that we are waiting for the insurance to approve the transfer of the boys back to our local hospital! As soon as it is authorized, the boys will be on their way!

So long, farewell, auf Wiedersehen, adieu... (Stacie leaves the room happily humming)

This is a brief post. I just wanted to let you know some highlights while I am waiting to go to the hospital...

*Ja.son is off his vent and feedings are up to 15ml again. He is looking good so far. The infection in his lungs seems to be either gone or on its way to being gone.

*Sh.awn got a fever on Sunday night. They though that the shunt may be infected so they did a tap. The tap caused a seizure (a second seizure was observed by the nurse but the doctors won't confirm that it was on because they didn't see it). Seizures have stopped and the theory is that the tap was the cause. (I hope this is the last one). The prelim report on the tap shows no infection thankfully. We're still waiting for the final lab report.

*Sh.awn's lung infection has moved to pneumonia. They are giving him a med to reduce water retention. He is also on antibiotics. He is still on his vent. It has been a long "24 hours".

*They think Sh.awn may have a bladder infection. Urine analysis prelim report showed no bacteria. We're still waiting for the final lab results on this, too.

*The blood in Sh.awn's stool hasn't returned. They did give him meds rectally, so that can be a cause. Plus, he may have had irritation from either his feeding tube (which he continues to pull out at every chance) or vent. Still no signs of NEC, so we are very happy about this.

*Ja.son's lung has recovered from the collapse. No damage seen on x-rays.

*Ja.son's shunt is doing its job and the swelling is reduced. His head size has decreased also.

*Sh.awn's head ultrasound shows some minor reduction in swelling. His condition was worse than Jason's, so this is no surprise. His head size has reduced a half a centimeter. There is still a risk for clogging in his shunt, but so far no evidence of that.

*We had a huge discussion with the entire team working on the boys AND the director of the NICU. I will definitely tell more about it when I get more time. Let's just say that I did well and I am very proud of myself. Kept my cool the entire time. The social worker said these words, "You are very unusual parents. The doctors are used to working with parents who don't really want to know what is happening to their children. They want to know know if the baby is having a good day or bad and that is it." How sad is that? I knew from the very beginning that the doctors didn't know how to work with parents who are very involved in their babies' care. We are now receiving calls updating us about the babies instead of us having to hunt them down all time time.

*I love my babies. I still struggle with guilt, though, when I see how much they are going through. Did talk to the social worker about it and she said that it isn't uncommon. I am working on getting over it because I do know that it is counter productive.

Huh, this ended up being longer than I thought. I am off to the hospital. I'll update more tomorrow.

**Updated at the bottom**

The good times just keep a comin'. Sh.awn now has traces of blood in his stool. They don't know why, but it is there. The doctors are "keeping a close eye on it" and waiting for more before they do anything. They did say that this couldn't be from the surgery (duh) so that means that something happened in the NICU itself. When asked why they aren't being more aggressive to find the cause of the blood in the stool, they down played that it was even there. That is the pattern. They tell us that something is going on in an off handed kind of way just so they can say that they informed us. Then when we press the issue, they say that it really isn't anything significant. When I stress my point that something that is new IS significant and deserves investigation and not the wait and see approach, I am being difficult. They stop talking to me and address only Isaac. I am not being unreasonable, nor am I being combative. I am just questioning their decisions, and they don't want to deal with me.

Looks like both boys have bacterial infections (same bacteria in both of them) from their intubation tubes. Hmm...wonder how that happened? I am so sick of the "I don't knows" and the blanket excuse that they are premature and this is how premature infants react. I might have believe that an infection was just a freak thing if one of the boys got one. But both? And the same bacteria? Give me a break. So you tell me that a collapsed lung is a preemie thing? You're saying that an infection from a tube is a preemie thing. No. These are things that happen because of sloppy work.

This is a teaching hospital. I struggle with that, too. Being a teacher myself, I understand the need for hospitals like this. Students need the opportunity to practice what they learn. I just don't want them learning on my babies. And the knowledge that many of the doctors I deal with are learning makes me feel like I need to ask even more questions about the babies' care.

Sadly, the attending in charge of the NICU doesn't make me feel any more confident in that place than the interns, residents, and fellows. I did tell her (the attending) that I would like the opportunity to speak to her supervisor on Monday. No one with any "power" is there on the weekends. We'll see how much work it will take to make that happen.

If the NICU life is so hard for us, what must this experience be like for the poor families without education or insurance or both? Both Is.aac and myself have good insurance and don't need to worry about the cost of all the care the boys are getting. I can't even imagine what the NICU care will cost. We are educated and do our research on what is going on with the boys. We come prepared to talk to the doctors and nurses with questions. I take notes on what we are told (mostly now so I can tell the who said what) and check dr. google about what they tell us. And still we are struggling maneuvering through all of this crap.

I really do think that this hospital and the staff are not used to dealing with people who ask questions about their child's care. They all get flustered and defensive. The more pointed a question is, the worse they are.

I am still pushing to have them moved back to our original hospital. Shit, the original hospital can give the boys just as many infections and collapse their lungs, too, if that is what this hospital is worried about. We don't want the boys to miss out on all of this excellent care or anything. At least then I would be close enough to visit whenever I wanted. (Isaac didn't think that my arguments should include that last little bit, but I am so tempted to use it anyway!)

***************

Thank you for the comments everyone. It does make me feel better to know that I am not just over reacting and that you all would do similar things. Plus, you are giving me valuable advice on how to proceed. I do appreciate it and please keep suggesting things!

**************** Updated

In response to a comment by the Madeira Triplets:

God, Jody, this scared the crap out of me! We called to ask about NEC. They assured us that they had done four clinical tests and ruled it out for now. They will continue to evaluate Sh.awn for NEC, though. I will go more in depth about it with the doctor tonight when I see the babies. I swear if it isn't one thing, it is another.

I had the feeling that there was a reason they had mentioned the blood in the stool the way they did. Had I been the one talking to them instead of Is.aac, I would have asked further questions about it. It had already rang some warning bells in my head when Isaac told me what they said. Sneaky bastards! Sigh.

Thank you so much!

My reputation preceded me at the hospital. I could almost feel the dread the nurses felt when they heard we were there to see the babies. We had been in the NICU for all of a minute before we were told they had called for the fellow on call. How is that for service? We've been going to that hospital for two weeks now, and I can count the number of times I've talked to a doctor face to face on one hand. If getting irate was all I needed to do to get to talk to one, then I should have done it a long time ago.

I was not a happy camper and everyone knew it. I had already had a run in with the security guards when I entered the hospital* so I was in the mood to have a knock down drag out with whoever pissed me off.

The fellow came within five minutes. He had a little resident flunky with him and introduced himself. The flunky remained nameless--probably in her best interest. He went into a little spiel about how he was there to answer any questions we may have and other such dribble. He asked for it...

I drilled him with questions about the babies' treatment and why the doctors were doing what they were doing. I was doing my best to listen to him and not be argumentative. It was still evident that I was royally pissed off and not happy, but I wasn't being difficult at that point.

And then he made his fatal error.

He literally asked us if we understood what the intubation tube was for. My mouth dropped as I stared at him. Surely his question was rhetorical. My boys are 12 weeks premature and are 6 weeks old. I have seen my fair share of breathing tubes and have a clear understanding of what they are for.

Have you have ever watched the television show "Scrubs"? You know how the main character, JD, has these weird fantasies about things? I had one of those fantasies. In my mind I had reached over and beat the shit out of that stupid doctor. He was in a bloody heap on the floor. I stood over him with a huge smile of satisfaction.**

When I came to, the silence had lasted too long. He was serious. He really thought we were idiots. Is.aac finally gave him an answer.

I had had enough. Things again went down hill from there. I started hushing him when he annoyed me. (I literally held up my hand to shut him up quite a few times.) I kept redirecting him to the whys, and he really couldn't answer me.

Now I get that the treatment for the babies should be dictated by what the babies are doing and needing. If they show they need something, then that is what is done. But, when you can't tell me what is happening to the babies that suggests the treatment you are following, then we have a problem.

At one point, he took us over to look at the x-rays for Ja.son. Yes, his right lung collapsed. Apparently, the breathing tube wasn't in the correct place and his right lobe wasn't receiving air to keep it open. They fixed the tube and the latest x-ray showed the lung is opening. At least they addressed that problem they created. (Good God they better hope that this didn't damage his lung.)

So I asked whether Sh.awn had x-rays and what they showed. Can you believe he tried to tell me that HIPAA said he couldn't show me Sh.awn's x-rays and that he shouldn't have showed me Ja.son's?

So what that he had left Ja.son's x-ray up on the screen for the remainder of the time we were there. Seems to me that leaving Ja.son's x-ray up for everyone in the NICU to see for hours was much more of an invasion of private health information than talking to the minor patients' parents about an x-ray.

So what do I do?

I need to be able to have some trust that this place and the doctors there will do what is best for the babies. I am definitely not there, and I am not sure I will ever get there at this point. Short of being at the hospital all the time, I don't know how I can ensure that the babies are well taken care of.

I asked for them to put in the charts that I need to be notified of all changes for the babies. Didn't happen. Both babies had blood transfusions and I wasn't notified. In fact, if Ja.son didn't have his transfusion going when we got there, we again probably wouldn't have known that they both had them. I told them it was in the chart that I need to be notified, and low and behold no one wrote it down when I had told them to before. (I had told the attending doctor to make sure it was added to the chart.) I asked them to write it then. Watched them write. Now will I be notified? I will be surprised if I am.

They thought I was a problem this morning. They haven't seen anything yet.

*After two weeks of going to the hospital with my camera, they wouldn't let me take it in with me today. They said I needed written proof that the nurses will allow me to use it. They wanted me to take it back to my car and not bring it into the hospital. Let's just say that they began to rethink this error in judgement after I said a few choice words and demanded to talk to their supervisor. It is a good thing they thought better, because I had already sized up the guards and was about to take them out one by one.

**This propensity for violence really isn't like me. I don't like conflict and try to avoid it at all costs normally. I try my best not to offend people or be rude. That all went out the window now that we have the babies. You better stay out of my way, or I'm a gonna take you down!

I feel like I have been run over by a truck. I have been having trouble sleeping and when I do finally get to sleep, it definitely isn't restful. Last night, I finally fell asleep on the couch at around 1:20am. I had tried to sleep through out the evening, but it just wasn't happening. To say I am exhausted is a complete understatement.

Yesterday's procedures went as well as we could have expected. We got to the hospital at 6am to meet with the doctors and talk to the babies before their procedures. I knew that we would hurry up to be at the hospital on time (which meant a 3:45am wake up for us) just to sit and wait. They scheduled the time so you would think it would be reasonable to be there on time, right? Wrong. The first doctor showed up at 7:10. Figures.

Anyway, we spoke to the doctors about the actual procedures, asked questions, discussed post-op expectations, and signed paperwork. I felt as confident as I could have in the neurosurgeon. (Is it possible to be completely confident in someone who will be cutting into your babies' heads?) He had done the procedure many times--I asked--and would have another doctor in there with him while he worked on the boys. I was just as comfortable with the anesthesiologist as I was with the neurosurgeon.

They finally made us leave the NICU (it was a shift change and the cited HIPAA as the reason) just as they called for the travel isolette for Sh.awn. He would go first, come back, and then they would take Ja.son. We kissed them goodbye and went to wait.

And wait.

The neurosurgeon came in after Sh.awn's procedure to talk to us about things went. The procedure went well, but Sh.awn still had some old blood from his bleed left in the fluid from his ventricle. The doctor explained that it means that Sh.awn was having a hard time breaking it down himself and that it raised the risk of clogging the shunt. Just what we need. Another increased risk.

The neurosurgeon came back after Ja.son's procedure. Ja.son did well, his ventricular fluid was clear, and was being sent back to the NICU as we spoke.

We were back to waiting until both boys were situated in the NICU before they would "let" us back in to see them. (I hate that these people have the power to let me see the boys are not.)

When we finally got to see them, they both looked so small and quiet. Neither moved. Ja.son was still sedated from the surgery. Sh.awn had been given morphine to help with pain. Both had bandages on the backs of their heads and on their bellies. They both had breathing tubes down their throats again. It was so hard to see them there like that. It felt like all the progress they had made over the last several weeks to get off of those stupid tubes had been wiped away in a matter of hours.

The NICU doctors didn't want us to disturb them or touch them and made a big stink about it. God that was hard. I so wanted to just touch their little hands to let them know that I was there. Even if they were sedated, I just wanted them to know I was there and that I loved them. Had I been a little stronger emotionally, I would have fought them and did it anyway, but I was worn down and couldn't even think. I settled with putting my hand on the isolette near their faces and telling them I loved them through the glass.

They shouldn't have had to go through all of that. They just shouldn't have. It breaks my heart to think of all they had to go through.

We stayed for awhile just watching them sleep. I found a bag of Ja.son's hair on his isolette. I don't know why it didn't occur to me that they would shave their heads. I guess I didn't think things through that far. It was another jab into my heart. I had to ask if they kept Sh.awn's. Thankfully, they did.

We left the hospital at about 3:00pm, exhausted and raw. I cried a little on the way home. I hadn't let myself do that until then. Is.aac was quiet until we got home, and then started complaining of stomach pains and cramps. (I hope he isn't getting an ulcer or something.) He finally fell asleep.

I just sat on the couch absentmindedly watching television and staring at the walls until I was able to fall asleep last night. I worried about the boys. I worried about Is.aac. I worried about myself and my ability to take care of the boys in the way that they deserve. Thoughts jumped through my mind all night. It wasn't fun.

I called to check on the boys this morning, and both are still intubated (on breathing tubes). Neither had had food for about thirty-six hours at that point. We were told yesterday that they would be intubated for twenty-four hours at the max. When I asked them why they still had tubes, they circled the questions and evaded the answers. I went through two nurses (the boys have different nurses today), a fellow, and the attending before I could get anything out of them. I got changing stories and nothing was the same from person to person.

The attending said that this morning's x-ray showed that Ja.son had a partial collapse of the upper right lobe in his lung so he would probably be intubated for awhile longer. They didn't call us to tell us that and barely even mentioned it when I was talking to them. If I hadn't asked about it, they would have acted like there was nothing wrong. I couldn't get any answers as to why/how this could happen.

She couldn't really say why Sh.awn was still intubated. All she would say is that they don't want to rush him and that they are weaning him off of it. They weren't giving him any pain medication other that Tylenol and they weren't sedating him. They were just letting him lie there uncomfortable. I was all over that, too. It is ridiculous to do that to someone, especially a baby!

Any warm and fuzzy feelings I had had about this hospital--and there weren't many--dissolved today while I was on the phone. They will take care of my babies in a caring, professional manner. I don't care what it takes either. I had them write on the chart that I wanted to be notified for any changes, whether that is to their status, medication, or skin color. They are to notify me about any changes to the boys period. The doctor there when I go in today will be hating life. I am so upset that calling me a bitch from hell could be an accurate description. They will answer me and explain what is going on if it is the last thing they do!

And I will continue to push to have the boys moved to the hospital here. Stupid people.

Well, we are home. The boys both did well in their surgeries and are resting peacefully for the rest of the night. I will update you on the everything tomorrow. Both Is.aac and I are wiped out, so I am going to try to go lay down for awhile.

Thank you so much for your prayers and words of support. I know that they helped get us all through...

We're scheduled for 7am tomorrow. We need to be there at 6am to talk to the doctors, go over everything, and sign paperwork. Then they take the boys in.

Now that it is here, I am scared to death. Please pray that the boys will be okay and this will make them better...

We might be scheduled for tomorrow! I think I am in shock. I am still waiting for the doctor to call after her rounds to give more info on when I can talk to all the doctors (they are coordinating it so I can talk to them all at the same time) and sign paperwork.

Now for a whole new set of worries...

Still no news about when the procedures will be scheduled. Again we were told that we would find out tomorrow (Tuesday). That is probably just lip service. I am back to believing it when I see it...

Have I said how much I hate it there?

Is.aac finally succumbed to the lack of sleep and high stress we've been dealing with for the past several months. He came down with some stomach bug that kept him in bed sick this weekend. I feel pretty bad for him. He has been miserable. I have been sooo careful to make sure I don't get it, too.

I went to visit the babies by myself on Saturday and Sunday. It gave me a small taste of what it will be like dividing my time between the two of them to make sure they both get attention. Should be interesting when I get to do this in real life!

I do have some positive things to share, though.

**Ja.son hit the 5 pound mark on Saturday. He weighs in at 5 pounds 1 oz!

**Sh.awn is now getting a bottle a shift. He still doesn't like it, but he is getting them.

**Ja.son had his feeding tube moved to his nose so he can start sucking in earnest now, too.

**Both are being weened off of the caffeine they've been getting to help them with their breathing. Neither is having apnea or breathing issues. Ja.son's oxygen level continues to decrease.

**I should find out tomorrow when the boys' procedures will be. The new attending doctor finally told the neurosurgeons that they need to either schedule the boys or move them to another hospital. They are working on scheduling them this week.

**Is.aac is finally starting to feel a little better.

Here are some new pictures, too.

Sh.awn


Ja.son