How Are Things Going?

How are things going? I am having so much fun! And to top it off, if Jason continues doing as well as he is, he is schedule for release on SUNDAY!!! YIPPEE!!

Shawn has said screw you to the schedule the NICU placed him on--he would eat every three hours there and often had to be woke up to eat. Here, he has decided to want to eat every two hours. The delima is that he will eat no more than two and half ounces no matter how long he waits between feeds. That means that I have to feed him more often so he'll get all the calories he needs for the day! That leaves me like this...

He is still having trouble eating, too. That leaves me like this...

In case you can't tell, I have purple sweat pants on, a blue t-shirt, a grey sweatshirt, and blue slippers. This was all I had left after Shawn projectiled (thankfully only once) onto my last clean pair of good sweats. My hair is in disarray and hadn't been combed yet--at 3:00 pm.

And you know what? I LOVE IT!!! I still can't wait for Jason to come home!

Good news. Jason is off of his oxygen and feeding tube (again). He is back up to taking his feeds on demand again, too. Yeah. They have taken him off of all of his medications except his antibiotic for his bladder infection (gento.mycin) and his anti-seizure medication (kepp.ra). He has now gone two days without an apnea (A's) or bradycardia (B's) alarm. Double yeah.

Tomorrow is day seven of the stupid antibiotics for his bladder infection. His course of antibiotics will take from 7-14 days, with the expectation of around 10 days being enough. That puts us to Friday for the repeat urine culture.

The apnea/brady alarms will probably mean around another 5 days from today, assuming he has no other alarms. He has to be alarm free for a week. They have said that the A's and B's were directly related to the medication he had been given and wasn't something that he would do had he not had all of that. I am not sure if that makes a difference. That would mean we would have to wait until Saturday. Sigh.

At that point, they will again evaluate whether he can come home. All clear urine culture + no A's and B's may mean homecoming on Saturday/Sunday.

Keep everything crossed that this week goes by smoothly and very quickly.

Here are a few pictures to commemorate Shawn's big day...

Putting on his going home outfit.

Proud daddy and his little boy.

Mommy, daddy, and Shawn.

Mommy (notice that I am already tired here--it was a long night and morning) and Shawn.

Here we are again...Shawn was tired of the pictures at this point.

Putting on his jacket...almost done!

Shawn saying "See ya, suckers! Let's get outta here!"

We are having so much fun. Things are going well so far--I hope I didn't just jinx myself with that. I think we could spend hours just looking at him (our own little Shawn-o-vision).

We can't wait for Jason to join us!

Jason update:

Things are looking better and better today for Jason. He is back to bottle feedings, to his delight. He is having some apnea episodes, but the doctor feels this is just his body dealing with the anti-seizure medication (which can take anywhere from 40-200 hours to leave his system) and the sedation medication he was given.

It is challenging going to see him, though, because Shawn cannot go back in the NICU. Isaac and I are taking turns staying with Shawn and visiting Jason. I really can't complain, though, as long as he continues to improve and progress toward his own homecoming!

He's home. Shawn is home. I am sitting here staring at my beautiful little boy. It is bittersweet that Jason isn't here and is sick, but he will get here, too.

Sigh. I am in love.

The call we got this morning was scary. I know the nurse who called was scared. It was clear in her voice while we talked. Both of us were preparing ourselves for whatever was ahead of us. It sounded bad.

We got to the hospital at about 8:00. By that time, Jason had already taken it upon himself to expedite his extubation and pulled it out himself. His breathing had improved, so they left him off of the ventilator and put him on an oxygen cannula instead. He is still being supported by cannula right now, and I suspect that he will be for a few more days.

Jason had a head ultrasound, a complete blood work-up, an EEG, and various other tests to try to figure out what happened. Fortunately (or maybe unfortunately, not sure which yet), they haven't found anything that may have caused him to have seizures.

The theory right now is that Jason was traumatized by several things late yesterday, that led to his body reacting in this way.

Here is a run down of what is thought to have led to the seizures.

• Jason is on an IV for his antibiotics. I told you that the line was placed in his head. Well, the IV had to be replaced yesterday because it was no longer allowing his antibiotics through it. They sedated him with a drug (a slightly higher dose than he has had before) so they could start a new IV. The seizures started about an hour after this drug was given.
• He had started to "twitch", so they gave him another drug, ati.van, to help him calm the twitches. This caused him to twitch even more. I informed the doctor that Jason has already had a reaction to ati.van after his hernia surgery. (not sure why this was news to them. will ask the nurse that had him the day of the surgery if she recorded the twitches on his chart.)
• They tried to re-insert an IV in his head, which didn't work. They moved to his arm, which didn't work, and ended placing an IV in his foot. He was repeatedly poked, of course, and lost blood from each of these IV locations. He had also lost some blood from his original IV in his head. In total, he lost enough blood to lower his hemoglobin level to 6. The NICU doesn't want the number below 10.
• He is also on an antibiotic that I had a severe reaction to.
• His immune system is still developing and fragile, and was dealing with his bladder infection.
• He is at a higher risk of seizures because of the shunt itself. (hmm...struggling with this being included here because I feel like this shouldn't have happened in the first place, and it irritates me that they like to include the shunt in their list of possibilities. but, they included this in their theory, so I'll include it too)

The thought is that all of these factors led to a sort of overload for him.

To help keep him stable, the doctor will keep him on the anti seizure medication for 3-4 months before slowly weaning him off of it. This will let his system stabilize more and prevent anything else like this from happening while he continues to get bigger and stronger.

What does this mean? Well, it means that we just progress as we have been doing. First was to stop the cycle that had started with the seizures by giving him the medication. Second, he will have a blood transfussion to bring up his hemo levels. Third is to continue to fight the bladder infection with antibiotics. Fourth, is to get him stable and strong enough to come home. Potentially, even with all that has happened, he could still come home when his course of antibiotics is done.

When we left the hospital a little while ago, we were feeling much better about how he was doing. He wasn't as pale as he had been, the seizing had stopped, and they were going to start him back on formula (which will make him VERY happy).

He is definitely our little healer/warrior.

I think I lost 10 - 15 years off of my life with this little scare!

Both of us are off to take a nap now. We are beyond exhausted, as you can probably understand. I'll update with more information as it comes in...

In other news, Shawn will come home today. I signed him out already, but they are holding the paperwork so we could come home and get some rest before we bring him home. They offered to keep him one more day, but I don't want to tempt fate. Wonder why it would make me nervous for him to stay one extra day?

Updated at the bottom...

Ahh, what would life be without yet another twist? Jason's picc line stopped working (why is still unclear) so they had to put in another IV. They sedated him so they could start working on a new IV, and Jason starting twitching. They gave him another sedative (ati.van) to see if that would stop the twitching and it didn't. So...

The thought was that this was a seizure. So they gave him an anti-seizure medication. An EEG is scheduled for tomorrow and they ordered a complete blood work-up.

He has no fever, no fussiness, no indications of illness (except the bladder infection that caused no symptoms).

The doctor called me a little while ago to tell me what happened. I asked if the sedative could have been the cause of the twitching.

The answer is yes it could and that is what he thought at first, but usually ati.van stops the twitching if that was the cause. I told him that Jason had already had "ati.van twitching" after his hernia surgery. When he learned that Jason has already had a reaction to ati.van, he said that would explain why it didn't help when he gave it to him. (duh) He said the info I provided made him lean a little more toward this being a reaction to the medication.

They are still proceeding with the further testing to reassure everyone that it isn't actually seizures, but a reaction to the sedation drugs instead.

This may be naive of me, but I don't think that we'll find this was a seizure. Maybe my radar is just overloaded and not working properly. It just doesn't feel like it to me. It is not like I have a medical degree or anything, but I just think this was a reaction to the sedatives.

Hopefully we'll know more tomorrow.

On another note, Shawn may come home tomorrow. Again, I'll believe it when there is a baby in the car, but I suppose it is a possibility.

Update:

After seeing Jason, I don't know what to think. Whatever he is doing (twitching or seizing) continued for awhile after the doctor called me. They gave him the anti seizure meds while I was there, and it did stop whatever he was doing and sedated him. I have several theories that I am pushing on the doctor, of which all are plausible.

1. Reaction to the antibiotic. This is the same antibiotic that I had a severe reaction to while I was in the hospital. (the one that made me so sick that they quarantined my room and assigned the infectious diseases doctor to me only to later find that I am allergic to this stuff) A side effect of said drug is muscle twitching. Dr. seems to think that if he was having a reaction to the antibiotic, he would have reacted yesterday, right after his first dose. Of course, I countered that with the fact that it took me two weeks before I reacted to it, and I was getting doses of it every 6 hours. So, this theory remains for me.
2. Reaction to sedation medication. Also known side effect is muscle twitching/seizures (according to the med journal the charge nurse looked the med up in tonight)
3. Ati.van - the second sedation medication given to stop the twitching that started after first sedation meds. We already know that he had pretty severe twitching after the use of this drug.
4. A combo of both sedation medications worked a number on his poor system.
5. The picc line in Jason's head was no longer working, so they were replacing it. The first picc line bled, of course. I am told quite a bit. So, they had played with his head, and he lost blood. They tried to reinsert the picc line two more times (back in his head--don't get me started on this one because it just boils me and makes me get ugly) each being unsuccessful and causing further blood loss from his head. They ultimately put a regular IV in his foot, so that was the third IV attempt at the time. In other words, they traumatized him.
6. Any/all combination of the above working together.

All of these scenarios piss me off because I truly believe none of this would have happened had I taken him home on Sunday. They redid his blood work, and wouldn't you know that Jason has absolutely zero signs of having any infections. zero. Granted, they did not do a culture on his urine again, but he was in mid range for his cbc readings.

Yes, my friends, I think they erred on the side of caution and then made him sick. I do believe that because literally, this happened within a few minutes. He was fine, and then they wanted to start his antibiotic and do his picc line, and then he was sick. It is not a coincidence that this picc line and the medications are in the center of everything.

I am surprisingly calm about all of this. Angry and on fire, but calm. I made my points with all involved. Thankfully, whatever he was doing had stopped, and I pray it doesn't return, so now we are left with figuring out what happened. He will still have his EEG done in the morning, but I will bet that it shows no seizure activity.

I am working on questions that I'll talk to the Dr about tomorrow. If you have any suggestions, please let me know.

And Shawn just might come home tomorrow. I know I already said that, but I think it needs repeating. He gained weight, and that was the condition fav. doctor gave me on the phone tonight. Even asked specifically about a certain amount of weight, and he said just a gain--said he'd do better at gaining at home anyway (oh really?). So, I still will believe it when I see it, but it could happen.

Updated at 6:29 am 1/25/08 - Jason is back on the ventilator. Don't know what is going on. Still waiting for tests and results to be finished. Has what appears to be another seizure at 5:19 in which he was "close" to coding. Scared shitless. Pray for him.

You're probably wondering about Shawn. I really have no idea when they'll release Shawn. The only hurdle he has is his bottle feedings. It is a struggle to get him to eat by bottle, and he fusses a lot of the time, especially in the beginning. He will take it, and he wants it, but you must have patience and persistence to get him to finish. I attribute this difficulty to acid reflux. When he eats, a little of the formula and stomach acid slips back up into his esophagus. It burns, and it is painful--hence the fussing.

The problem is that the nurses don't always have the time (or patience) to work Shawn through his entire bottle. Once he starts to fuss, the nurses tend to go for his feeding tube to gavage the rest of his food. So, on paper, Shawn doesn't finish a lot of his bottles. He can (and does when Isaac and I are there to feed him), but he doesn't because when he starts to fuss, they give up on him. It is a vicious cycle. (I do want to say that not all of the nurses are like this, but there are enough of them.)

I have talked to the doctor about this issue, and he doesn't think that his acid reflux is any worse than that of other babies. I beg to differ, but I can't seem to get them to agree. There is medication to help Shawn deal with this, but again, the doctors are leery of giving it to him.

I finally got them to remove Shawn's feeding tube late yesterday. I am hoping that this will end the temptation to give up while the nurses are feeding him. I don't want to jinx anything, but Isaac had a good night with him last night (with only minor fussing), so maybe things are resolving themselves slowly but surely. There is a catch, though. When Shawn bottles his entire feeding, he burns more calories. This translates into weight loss. He lost an ounce last night. This wasn't unexpected, but he definitely can't come home if he continues to lose weight. And for someone (me) who never had to give calories a second thought, all of this calorie/weight stuff is challenging (and depressing). Sigh.

They placed Jason's IV line in his head. Thankfully, they didn't shave his head before they put the IV in, which would have made me blow a gasket. He doesn't have that much hair to begin with and he already is bald on the back of his head from his surgery, so shaving his head would have killed me. I do have to say that it is odd to see him with the IV there. He doesn't seem to mind, so I guess that is all that matters. It does tether him back to the IV pole, which is sad. We had just got him disconnected from the major monitor only to add that. It will be extremely nice to hold the babies without a bunch of wires connected to them!

Isaac pushed the doctor into doing the same tests on Shawn that were done on Jason. Hopefully they won't find anything, but if they do, we want to get it treated now and not wait until he is ready to go home. Neither Isaac or I want to go through the same situation with Shawn that we went through with Jason. You better bet that the next time they say I can take one of the boys home, there will be a baby in the car before they know what hit them.

I am still not in a good place, but I am doing what needs to be done. It isn't like I can't. Somehow, we all have to find a way to go forward and get things done, even when we would rather dig a hole and bury ourselves in it. The light is at the end of the tunnel (although I swear it is on a major dimmer switch right now), so I am trying to focus on that and not on my misery at the moment. Ten days. I can do ten days. Now we are at 9 days. See things are already a little better than they were yesterday. (believe that?)

My resilience is almost at its end, though. I am finding it harder and harder to pick myself up to move on to the next hurdle. There have just been so many without any breaks. It has gone on for so long. I am tired.

I also have to admit that it is VERY hard for me to go to the hospital, and I have to resist the urge to turn around at every corner. But once I am there, it is usually okay. Hard, but okay. I have never been especially fond of hospitals in the first place. My experiences while I was there didn't help matters much. Add to that all of the mess at the other hospital and the delays and setbacks we get from this one, and it equals some pretty strong emotions. Again, I am trying to push that stuff to the side for now and focus on getting the boys home. To say it has been rough is the understatement of the year.

Thank you for listening to me vent about all of this stuff. I realize that it must be hard to read. I have been negative and fearful, but you stayed by me. Your kindness and support have got me through many tough days and nights, and for that I will be forever grateful.

I can't wait to be complaining about the sweetness of sleepless nights and spit-up. I can't wait to post pictures of my beautiful babies at home, smiling at the camera. I can't wait for it. I know it will come. It will. It is just hard to remember that sometimes. Thanks again for sticking with me, hopefully until I can do all of this stuff and more.

Hmm...with the two blogs combined, this is my 200th post. At my 100th post, I was dealing with the other hospital. Now with the 200th post, I am dealing with a delay to the boys' homecoming. I sure hope the 300th post brings much brighter news!

Bladder infection. 10 day course of IV antibiotics. When asked about oral antibiotics, was told that they are unreliable in treating a neonate. If he hadn't have had the high blood pressure reading, they would never have looked for it, and he would have been home already.

I don't see why we can't have something go our way for once. Is this what my life will be like from here on out?

I just needed to keep them in for two more weeks, and life would be so different for them. For us. They would have been home a long time ago. I would be a mom. Now, I am just a visitor. I hate it.

I am not in a good place right now.

It is hard to be optimistic about things when you get railroaded at every turn.

Please don't say that it is good that they found this now and not after they came home. I don't want to hear it. I don't want to hear that they will be home soon. It feels like they will never be home, and I am wallowing in my own self pity right now.

It's raining here today. The gloominess is perfect, reflecting my mood and the heaviness I feel. I am sad today. Sad, sad, sad.

Seek something long enough, hard enough, and you're bound to find it. I suspect that they weren't going to stop until the found something anyway. Well, they found traces of protein in Jason's urine analysis. Bladder infection is the thought. There is some chance that this was because it wasn't a clean collection, so they took another sample by catheter. (Why not? It isn't like Jason complains much.) We'll know tomorrow if he does have the suspected infection. If yes, that means 7-10 days of IV antibiotics. In the hospital. February at the earliest.

With the way things are going lately, I suspect the results will say that he has "something" and they'll treat him "to be safe." What is another 10 days to them? So what that a little piece of me crumbles away with the tick of each second.

The doctor said if they don't find an indication of infection in this test, then he can go home tomorrow. Again, not holding my breath. Our luck just hasn't been holding up that well.

He has no symptoms. Eats well. No fever. No indications of trouble. Except that stupid high blood pressure reading that one time.

I can't go there today. I can't. But I have to.

Another baby leaves tomorrow, and it won't be mine.

And it hurts.

He had a high blood pressure reading. One. Yesterday. Right before rounds. (great timing there) Not several in a row. One. That is what all the testing is about. Kidneys ultrasound. Heart ultrasound. Urine analysis. Blood work. Because of one bad reading.

Hasn't had another high reading since then. They haven't found anything. (duh. He was probably just upset or something.) Give me a freaking break already.

1-3 days because of one bad blood pressure reading. He should check mine. I KNOW mine would make him wince.

Afraid to hope favorite doctor will release him. Don't want to get hurt again. But come on...please. Crap. It is there. I just know I am setting myself up for more disappointment.

Two words. Not today.

Nothing but "just want to make sure all is well before we send him home" for an explanation. They aren't finding anything, and it seems to me that they could have done all of this crap last week. Why would he say that he could come home and then change his mind over nothing? He gained over an ounce last night, and 10 grams the night before. Why isn't that enough?

1 - 3 days is what the doctor says now. My favorite doctor comes tomorrow. Maybe he'll have more of an explanation. Maybe he'll release him. Maybe not.

I'm fragile right now. It was especially hard to go to the hospital today. All I wanted to do was cry while I was there, and I did a few times. I don't cry in front of people. For me to cry there was big. Made me feel even worse.

I know it is only a few more days before I can take Jason home. What is another day? It just seems like each second is an eternity. It didn't feel quite this bad before. Homecoming was so close. We ALL thought he would go home yesterday. And to be told no like that broke me.

The nurses don't exactly know what to do with me, and I am continually hearing that they are sorry. That just makes me sadder. I hate it when people are nice to me when I am upset. It just makes me cry more.

I am so done.

Yesterday we were told by the doctor that we would take Jason home today. We got there only to find he had changed his mind. Jason didn't gain enough weight over night (although the doctor told me he just needed to gain and didn't specify that it had to be a certain amount).

This one hurt. Another time of getting my hopes up to have them dashed. Cried all the way home.

We are supposed to see if he can go home tomorrow. Not holding my breath.


Sigh. 92 days and counting.

I need to go to bed.

The buzz keeps increasing about Jason...

They're off the oxygen. Yeah! There is also starting to be the "are things ready at home for them" buzz going. I am getting excited again. Oh please don't let my hopes be dashed again...

The boys are doing really well. They are still on minimal amounts of oxygen, but should be coming off of that within the next day or so.

They started bottle feedings on Wednesday afternoon. Both are great eaters when they are hungry. Unfortunately, the hospital has them on an every three hour feeding schedule, so they aren't always hungry at feeding time. How could they be? I don't think their bellies are every empty for very long! (I have discussed this with the doctor, and even he said that some babies are not every 3-hour feeders. He didn't change the orders, though, so we are stuck with the schedule.)

I was especially pissed off to see that they had put their feeding tubes back in. I know it was done because the nurses just give up and gavage them (feed them through their feeding tube) when the boys show the slightest bit of resistance. Which again happens because they aren't hungry. I know it is easier, but come on all ready. The boys should be beyond gavage feedings now, especially because they can bottle feed just fine. UGGGG!!!! (just a little vent there)

Two families that came in after us, but that have been there a long time, are ready to discharge. It made me so sad. They were watching the CPR video (the last thing they make you do before going home) while I was feeding Shawn. He was being challenging because he wasn't hungry, I kept hearing the CPR video, and I just got so defeated. I cried big boo hoo tears all the way home.

I want to be happy for the other families. They have been a source of support during our time there. I am so jealous, though. Sometimes it feels like it will never be my turn to leave the hospital with the boys.

It makes the feeding tube issue even more painful for me.

No one seems to be in a hurry to get them home but me.

And I am going crazy waiting.

Q & A

Question:

What do you get when you put a preemie diaper on a not so preemie baby (aka Shawn)?

Answer:

All wet! (and lots of laughter, too) Well, not all wet. Just my pants, sweatshirt, and Shawn. I am telling you that diaper was used!

Evidence:



(It is hard to tell that my pants are wet, but trust me when I tell you that they are.)

Discussion points:

1. Why was there a preemie diaper available for us to use when the boys haven't been wearing them for several weeks? (I am sensing a conspiracy, here.)


2. How much pee does it take to flood a diaper, a sleep n' play, two blankets, a sweatshirt, AND a pair of jeans? Can said amount of pee come from an 8 pound baby? (The answer to the second question is an obvious yes!)
   
3. Is this what I get for not getting spit-up on me yet?

Good News! Both boys have been extubated already. Oh thank you, God! We are ecstatic about this. Shawn had his vent removed early this morning, while Jason's was removed a few hours later. Both are now on minimal oxygen support through a cannula. WooHoo! Not too shabby, if I do say so myself, and I do--I am a very proud mommy!

Shawn also had his first feeding. He took an ounce and tolerated it well. They will increase his formula each feeding until he is back up to full feeds. Then they will remove his IV. And then, we go back to the bottle!

Jason is still a little sluggish from his anesthesia. The boys had different anesthesiologists, so I suspect (although haven't confirmed, so I could just be full of it here) that they got a slightly different dosage of meds. When he shows he is a little more awake, they will start him on formula, too.

This has turned into a WONDERFUL day! Thank you for all of your thoughts and prayers. I do believe they are working!

Due

January 16, 2008. Our due date.

Wow. It seems like a lifetime away from October 27, 2007--the day you came into our lives. A lifetime filled with joy, wonder, and utter amazement. We are so happy you are here and can't wait to see what the future holds for us all.

Keep getting stronger every day, boys. Homecoming is right around the corner. We'll be here waiting...

We love you Shawn and Jason.

The surgeries went well. The most important part is that they are talking about extubating the boys tonight if at all possible. (Oh please, oh please!)

I am totally wiped out. I will update further after I get a good night's sleep.

Thanks for all the support you guys. You all are amazing!

There was a lot of waffling back and forth, but we finally got confirmation that BOTH boys will get their hernias repaired tomorrow (the one not getting his hernia operated on would have had to wait yet another week if they both didn't get in tomorrow). Thank goodness. The surgeries are set for 3:00 pm. Finally something is going our way! Let this be the start of many good things to come, okay?

On another note, I was helping Isaac move a dresser into the babies' room last night and woke up this morning in terrible pain in my lower stomach right around my c-section scar. I am feeling a lot better now, but I was more than a little concerned that I had given myself a hernia. Wouldn't that have been great? I could just see me bumping the boys out of the operating room so the doctors could repair a hernia on me. Thankfully, I don't think I did anything more than strain my muscles. I will definitely be careful lifting stuff from now on, though.

**Updated with more pictures at the bottom.

These are the latest pictures of the boys. Keep in mind that I am holding them in my arms while I take the picture, so that is why they are always so up close and personal.

This is Jason just after finishing his bottle. There is nothing like a formula induced sleep...

This is Shawn sucking on his pacifier. He absolutely loves that thing!

The hernia operations will be done on Tuesday. There was some talk about maybe not being able to fit both of them in on that day, but I think that they have cleared that up now. (It would be just our luck for them to only have room for one baby that day. We'd have to wait for the following Tues. for the second baby if that happened.)

Depending on the doctor I talk to, there are varying views on how long the recovery time will be. One doctor says that they should be home by the end of the month, and definitely by the end of next month. He is such an optimistic fellow. The other doctor, who happens to be the head of the NICU, thinks that it should be no longer than a week before they get released. My guess it that it will fall between the two estimations, but I am more than willing to be proven wrong. I just want the babies home.

As we get closer to being released, I am now having to jump through a bunch of hoops. I have to be checked off for various things pertaining to caring for the boys. Can I feed them a bottle? Can I change their diaper? Can I bathe them? The whole check off thing is starting to really bother me. Why is it that I must do all of this, when a druggie down in maternity can just pick her baby up and go without proving her skills as a mother? It is more than frustrating for me.

There is one particular nurse who seems to always have the boys when she is working. I don't care for her much. She is the kind of person who is always in everyone's business and is never without something to say. She likes to sit by me while I feed the boys and critique my efforts, especially while I work with Shawn. If I hear, "I do it this way...," from her one more time, I think I am going to explode. Thank you very much, but I do things this way, dammit. (This nurse is the only nurse to do this. The rest of the nurses will pretty much leave us alone and let us just learn what works best with our children.) When I am just cuddling the boys, she also likes to sit there and talk to me about anything that flits through her mind. For a long time, I was pretty good at ignoring her. Now she just bugs me.

"I am so ready to be home with them," is the understatement of the year.

**Updated...

The boys in their crib. Shawn is on the left. Jason is on the right.

Jason...

Shawn...

Daddy feeding Jason...

These two pictures were from a few days ago.

Jason...

Shawn...

Stages...

I have been thinking about things a lot lately. I must admit that all of the talk about whether I am depressed or not has been part of the reason. Am I depressed, or am I just reacting to a very stressful situation?

When the social worker at the hospital said that I should call my OB about post partum depression (added to the comments I was getting here), it scared me. I know that she was trying to look out for me, and ultimately give my another way to maybe get more maternity leave, but that request hurt me in a way that I didn't really understand. I don't know if it was because I had begun to feel better--stronger--than I had in weeks. It was like her comment somehow meant that I wasn't being strong enough to get through this. Then a fear that maybe the hospital would keep the babies even longer because I wasn't able to handle everything sneaked into my head. I know these thoughts aren't rational, but they were there. Briefly.

The fear that somehow the babies will be taken from me has nagged at me. I am sure it starts back at the beginning--it taking me so long to get pregnant in the first place, and then with them being so sick after they were born. I haven't ever really admitted how scared I was that they would die. Not to anyone. It can make me cry to think about those days and sometimes, I will. They were filled with pain and fear. And they have left a mark on me that I won't soon forget. I was ill, they were ill, nothing had gone the way I had envisioned it. My world fell apart in a flash the day they were born. I was torn between happiness and terror. The experience rocked the already shaky confidence I had in myself and my ability to be a good mother to the boys.

But to please the social worker (just in case) and to answer the question for myself, I did go to see my OB. I talked to him honestly about what I have been doing and feeling. I told him that I really don't think that I am depressed; I am dealing with a very stressful situation. I am not happy about it, but it is there. It is my life right now. I added that I do look back over the past 10 1/2 weeks and realize that I did have some bouts of depression, especially for the first weeks after the babies were born and during our stint at the other hospital. I might even go so far as to say that I was probably seriously depressed there for awhile. I wasn't myself, and I wasn't crazy about what I had become. I was a jumble of hormones and was under incredible amounts of stress, not a great combination. (I suppose the good thing about that experience is that it has allowed me to see that I am feeling better. I know what the dark days were like, and I know that I am not in the middle of them any more.)

Now, don't get me wrong. I still have bad days. But, I think that a person in my situation will (and probably should) have bad days. To not have these bad days would be my way of denying what is happening around me, my version of putting myself into a cocoon of non emotion. And that isn't me, either.

The doctor, whom I love, was kind and listened to me talk. He said that he would be more concerned about me at that moment if I said that I wasn't feeling all of the feelings I was going through. I had put through the wringer, so to speak, and I am reacting in a way that was to be expected. He asked me what I thought about the depression, and I told him. I truly am feeling better 98% of the time. Stressed? Yes. Overwhelmed at times? Yes. But better. More me.

I think what I am doing here is grieving--grieving the loss of enjoying pregnancy, the loss of taking home a newborn child (times two) to enjoy and learn about, the loss of all of my carefully planned expectations for how my life would be after I gave birth. I am working through the stages of grief, dealing with denial (could this be why I didn't do anything before the babies were born, not even name them?), anger (why is the happening to me? who in the universe did I piss off to have this happen?), bargaining (please let the babies be okay...I'll do whatever you want.), depression, and now acceptance. What is, is what it is. There really are no "what ifs" now. Maybe a part of me will always wonder, but that really has no benefit to it to but to bring me down. And I am not going to let it do that. My babies are here. I love them. I want the best for them, but I know we will be able to handle it if there are lasting effects from their prematurity.

Together the doctor and I concluded that while I may be slightly depressed, I am no longer so depressed that I need drastic intervention. He did give me a prescription for zo.loft, letting me decide if I wanted to ultimately take it, but I don't think that I am. I am not opposed to taking them if I really thought that I needed them. They would take up to several weeks to take affect, and by that time I do believe that I will be pretty close to my "old" self. I will keep the prescription, though, in case I do think it will help me at some point in the near future.

What will help me most, I think, is to talk about everything more often. I have a tendency to keep the not so pretty feelings I have bottled up inside. I have the blog, where I can let some of my thoughts out, but I don't normally get too deep with anyone in real life. I will try my hardest to change that.

So that is where I am right now. I know you all may not agree with the path I am taking, but I am trying to do the things that I think will be the best for me. (and for once, I am trying to not think about what others might want me to do)

Yet Another Set Back...

Is this what I get for getting my hopes up? That hope thing really makes the set backs so much worse, too. Sigh.

Both boys have inguinal hernias and will need surgery. Here is a quick definition from babycenter.com (the page is linked below):

"During gestation, a boy's testicles develop inside his abdomen, and then, sometime before birth, they push through a tunnel in the tissue between the groin and the abdomen (called the inguinal canal) and descend into the scrotal sac.

In girls, the ovaries descend through the tunnel and into the pelvis.
At that point, the passage through the abdominal wall should close up.

In about 5 percent of babies (mostly boys, and especially those who were premature), the opening remains large enough to allow a loop of the intestine to poke down into the tunnel.

Inguinal hernias do not improve on their own."

Shawn's hernia is on his right side and is more severe. His catheter from his shunt has protruded into his scrotum with his intestine, causing him a lot of discomfort and pain. His hernia is easily felt today and was the tip-off to the doctors that they needed to be checked by the pediatric surgeon.

Jason, however, has hernias on both sides of his groin. While they don't seem to be causing him much, if any, discomfort, they still need to be repaired to ensure that they don't get to that point.

(They both also have umbilical hernias from all of the IV's they had placed in their cords right after they were born, but they will not need surgery for them. The expectation is that the umbilical hernias will clear on their own by the time they reach 2-4 years old.)

Surgery is scheduled for both boys on Tuesday at somepoint in the afternoon. I am told that this type of surgery is very common, lasts about 1/2 an hour per hernia, and that this pediatric surgeon is very good.

The only thing that really worries me, outside of them being sedated, is that the boys will need to be put back on a ventilator for the surgery. We just don't have the best track records when it comes to that stupid vent. Pray that they are able to be taken off their vents quickly.

For right now, that is all I know. I'll keep you updated as we find out more information.

Mush

I think I got my first real smiles from Jason! I had just finished feeding him, and he was sitting on my lap. He was looking at me and making some fussing noises. I asked him what he was doing, and he just lit up in the biggest grin! Not really believing this was the real thing (it had to be gas or something, right?), I asked him if he just grinned at me, and he did it again--looked right at me a grinned so much his cheeks hit his eyes. He smiled three times total...and my heart is one big pile of mush. :-) Don't know when I'll recover, either!

This has to be quick because I need to get back to the hospital for the next feeding. Forgive the bullets...

• Mylicon is my love now. It has helped Shawn tremendously! He is now up to two-thirds of a bottle a feed! Yippee! Jason now takes the entire bottle (2 1/4 ounces) regularly.
• Jason weighs 7 pounds 12 ounces and Shawn weighs 7 pounds 8.5 ounces!
• I got the first indication that discharge is on the way. I got my discharge checklist! I am going crazy with excitement. I go to the hospital for every other feeding so they can check me off! I am hoping that at least one will be home by the end of the weekend!
• I have been cleaning my house like a fiend, trying to get everything finished as much as I can. Now you would have thought that I would have been doing that all along, but no, I wasn't. I felt like I was in this strange holding pattern and got very little done.
• The social worker at the hospital made me call my OB to talk to him about post partum depression. I have an appointment tomorrow to talk to him further. I would have agreed that I was depressed a few weeks back, but I am really starting to feel a LOT better now. I figure it can't hurt to get a clean bill of health.
• Did I say that I got a discharge checklist? Hee Hee!

The boys are 10 weeks old today. Wow. My babies are getting so big, but I still feel a little like an observer in their world. Who am I kidding? I feel like a part time parent--like a fake.* I know they are mine, and I love them with a fierceness I couldn't imagine before having them, but it just won't feel real that I have two babies until they are home.

On that note, things are really starting to happen here now. I walked into the hospital yesterday to find that Jason was taken off of his oxygen! I had no idea this was coming, and it took me by complete surprise.

I just kept telling him how proud I was of him over and over...and it felt so good...I can't do justice to the feeling with mere words...the closest I can get is "wonderful". It felt wonderful!

Homecoming is in the air. It is so close I can almost taste it. The doctor hasn't said anything about a date yet (and I must admit that I am afraid to ask point blank for some reason), but it is near. For Jason, at least.

Shawn is still having difficulties with nippling. He can go to town on the pacifier, but when we get to the bottle, he does NOT like it at all. He manages to get through about a third of a bottle before he just gags and spits it out. It's hard to not be discouraged.

The boys are also now considered the big bruisers of the NICU. Both are now over 7 1/2 pounds. They no longer fit in their preemie clothes and have been wearing size 1 diapers for quite a while now.

I tell myself that I am not really missing much but watching the boys sleep, poop, and eat.

You're not buying it either, right?

Sigh. I am riding a roller coaster of emotions all of the time. I'm tired and so ready to get off. Still, I am in a much better place than I was a few weeks back. Thankfully. That place was scary. This place, not so much.

Next weekend my SIL is throwing us a baby shower for all of the family. Isaac's family is quite large, so I know there will be a lot of people there. I am excited and nervous about it at the same time. I am still not used to crowds and noise, which is strange for me because it is always so loud in my normal** world. Plus, I don't really like to be the center of attention very much. It makes me anxious to have people looking at me.

The girls at work threw me a small shower before Christmas, but it didn't go well. I was late (got lost getting there), so by the time I arrived, everyone was totally toasted. I think they had finished off a bottle of tequila and three bottles of champagne in under an hour and a half. It got a little loud and rowdy--and freaked me out. I know they meant well, and we did get some really cute things, but umm...it wasn't exactly how I had pictured it. And now I am more than a little shower shy.

* I went to register at BRU today and got the same reaction I get everywhere else I go. It makes me sad...
It starts with a surprised look which ends with, "Are you pregnant?" (insert a tone that drips with sarcasm)
"No," I say, "I just had twins."
Then I get a once over glance before their eyes settle back on my face. "Really?" (again with that sarcastic tone)
"Yeah. They are in the hospital now. I delivered at 28 weeks." I manage before I look away. (why do I always look away?)
"Oh." the person will utter before changing the subject.
I always leave these encounters with that "I am a fake" feeling. I know it doesn't sound like it is a big deal. It is to me, and I hate it.

**What is normal now anyway? Is this hospital stuff normal for me? It is almost starting to feel that way. My life as I knew it seems so far away that I am not even sure I can call it normal anymore.

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Congrats to K. She just found out she is expecting her second set of twins! I am so excited for her. She is an amazing mom, and her little ones are very lucky!

The 2007 Creme de la Creme is up and running. As Mel, from Stirrup Queens and Sperm Palace Jesters, puts it, "Other prizes honour only a small handful of blogs. Forget that! We've expanded the idea of presenting "the best" to include a post from every blog in the infertility/pregnancy loss/adoption world." I have been working my way through the list of over 120 posts and have loved every minute of it. Go check it out!

And lastly, my sincerest condolences go to Our Own Creation. Her twins, Zoe and Lennox, were born at 24 weeks. Zoe is holding her own, but sadly, Lennox passed away on Saturday at two days old. Please send your prayers to her and her husband as they deal with what lies ahead.
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He did it! Jason did it! He finished two full bottles today! He also took 2/3 of his bottle for the rest of the feedings. I am so proud of him! Now, if I can just get him to burp, we'll be all set. (Seriously. Why can't I get this kid to burp? I mean, it shouldn't be that hard to get a baby to burp, right? Even the nurses are having problems with it. Jason doesn't seem to care, though, so I guess it's okay. One of these days the boy is just going to explode. It's like Isaac and I are now playing Russian Roulette on who will get that one fateful burp! Any bets on who will end up the loser there?)

Here are some pictures to commemorate the big day...








Did you notice the not so happy look on his face? It cracks me up because he loves to eat, but wears that look while he is doing it. It is probably because he won't let me burp him!

Here is Isaac with Jason...





Me and Shawn...




And Isaac figuring out how to take care of both of them when they are crying at the same time...

It is amazing how much can change in a year. On this day last year, I had started my first miscarriage. Happy New Year to me I had thought with bitter sarcasm. All of my hopes and dreams were instantly dashed with that first drop of blood. I was at my lowest point ever, (although I learned later that even lower points were to come) and thought I would never be happy again.

And now I have my two little guys.

Sh.awn, my little temperamental one. The one who wears all of his emotions on his sleeve, not afraid to show whatever he is feeling. He is so much like me in so many ways. All I want to do is hold him and console him and let him know that it will all be alright.

Ja.son, my quiet reflector. The one who is content to watch the world and rarely voices his concerns. He is the smaller version of Isaac. I love to snuggle on him and smell his sweet baby scent.

I never would have guessed that my life would be at this point on that day last year.

I found this End of the Year Meme (questionnaire) from here to help me sum up the highs and lows of 2007...

What did you do in 2007 that you’d never done before?

2007 was the year of the pregnancy--positive hpts, two miscarriages, numerous ultrasounds, two glorious heartbeats, kicking that kept me up all night, bed rest for eight weeks, a cerclage to stitch my incompetent cervix, a hospital stay, c-section, two beautiful babies, and life in the NICU.

I also completely remodeled my kitchen with the help of Isaac and my mom and dad. We installed new cabinets, changed the gas line, bought all new appliances, and scraped the popcorn off of the ceiling!

Did you keep your New Year’s resolutions, and will you make more for next year?

I did not make New Year's resolutions last year. This year, I resolve to be the best mom I can be, and not to beat myself up when I make mistakes. The not beating myself up part will take loads of work, but I need to stop that.

Did anyone close to you give birth?

I did! Two other women at my work gave birth as well. (We all had our kids in October, too!) A few of my Internet friends also gave birth.

Did anyone close to you die?

I had two close people die. The first was my grandfather. He passed while I was on bed rest, and I will always be sad that I was not able to go to his funeral. The second was a close family friend, a man who was like my second father.

What countries did you visit?

No countries other than this one. I did manage to go to Las Vegas right before I was sentenced to bed rest.

What would you like to have in 2008 that you lacked in 2007?

After bringing my boys home, I would love to have a year without some sort of medical emergency!

What dates from 2007 will remain etched upon your memory, and why?

I have dates from my miscarriages and estimated date of birth etched in my mind. I say a quiet prayer and think of the "what ifs" on those days.

I also have October 27 etched in my mind because that was the day my two boys were born.

What was your biggest achievement of the year?

Having babies. Living through bed rest when I thought for sure I would go crazy!

Did you suffer illness or injury?

I had my first hospital stay ever, and a c-section. Thankfully, that was enough for me.

What was the best thing you bought?

I bought a great stove for the kitchen. It has a "power boil" feature that boils water super fast. I love that thing!

I also bought a self cleaning litter box. That inventor was a genius!

Whose behavior merited celebration?

I think my husband and my mom went above and beyond this year. They both took care of me during all of the bed rest and pregnancy drama. They never complained, either. I know I wouldn't have made it through without them!

Whose behavior made you appalled and depressed?

I have to admit that I can't think of anyone for this question. I am so glad about that!

What did you get really, really, really excited about?

Having a baby first, and then finding out it was twins!

What song will always remind you of 2007?

That Kanye West song that has the line "What doesn't kill me will make me stronger!"

Compared to this time last year, are you: a) happier or sadder, b) thinner or fatter, and c) richer or poorer?

a) definitely happier
b) definitely thinner - how many people with nine week old twins can say that?
c) poorer - not working much will do that to you.

What do you wish you’d done more of?

Stayed pregnant longer. Enjoyed being pregnant without being afraid of what could happen. And completely finished the kitchen before I went on bed rest.

What do you wish you’d done less of?

Worrying. Beating myself up over things.

How did you spend Christmas?

I split my time with my babies at the hospital and at my mom's house.

Did you fall in love in 2007?

Yep. With my new family.

What was your favorite TV program?

Project Runway, Survivor, Amazing Race, Lost, Scrubs, Days of Our Lives (I know, I know), The New Adventures of Old Christine, and others. Had a lot of time to watch television this year.

What was the best book you read?

I read Wicked and that was about it for the year. That is strange, too, because I LOVE to read. For some reason, I couldn't just sit down to read anything deeper that "Star" magazine. Must have been the state of my head this year.

What was your greatest musical discovery this year?

XM Radio! Love it!

What did you want and get?

Babies.

What did you want and not get?

A complication free pregnancy would have been nice!

What was your favorite film of the year?

Didn't go to the movies once this year. We were saving money so we cut that out.

What did you do on your birthday, and how old were you?

I turned 35 and I gave myself shots for IVF. We also went out to dinner to celebrate.

What one thing would have made your year immeasurably more satisfying?

Hmmmm....not sure.

How would you describe your personal fashion concept in 2007?

Wear what makes you comfortable. In my case, that meant sweats, sweats, and more sweats.

What kept you sane?

My laptop!

What political issue stirred you the most this year?

NCLB is something that affects my daily life. Right now, my work is in the middle of restructuring because we are now considered a "failing" school. It totally sucks. I understand and agree with the premise of this issue, but the specifics of it are so unrealistic in a lot of ways.

And I wish our president seemed more intelligent. It is just sad that he (and by default, we) are laughed at by people around the world.

Who did you miss?

My students.

Who was the best new person/people you met?

Sh.awn and Ja.son.
My Internet buddies. You know who you are.

What valuable lesson have you learned in 2007?

Take things one day at a time.
I am a strong person who can make it through anything.

Quote a song lyric that sums up your year:

"It's a world of laughter, a world of tears, It's a world of hope, and a world of fears..." from "It's a Small World"



Okay, that was my year in a nutshell. I can't wait to read what you answered for these quesitons!