Happy Homecoming Day, Sh.awn!

On this day five years ago, our little Sh.awn came home from the hospital! We were so excited to get the chance to finally be parents without the watchful eyes of the hospital personnel.

Picking him up without having to juggle wires was pure bliss. Sigh. I'm pretty sure all I did that first night was feed him at the expected three hour intervals and stare in wonder at him the rest of the night.

Happy Homecoming Day, Sh.awn!

It blows my mind to look at how tiny he was -- and he was
four times his birth weigh here!

Tomorrow, we get to celebrate! :-)

For those of you wanting to take a trip down memory lane, I wrote about his Homecoming here. (Try not to focus on the look of panic and disbelief we have on our faces in every single picture. I'm certain we both thought they were going to change their minds at any second and tell us he had to stay. lol)

Okay

On Christmas Eve, I made my first return visit to the NICU since the boys were discharged five years ago.

It's funny that it was so difficult for me to imagine going, especially because I have been back to that hospital several times since then. I even had Jack there for goodness sake. In all of that time, though, I avoided that part of the hospital like the plague.

The anticipation of the visit made my stomach a wreck on the days leading up to the 24th. I wanted to back out so many times, it was ridiculous. But I didn't. I told myself that my desire to avoid that place was the most important reason for me to face my demon head on. It didn't hurt that I had my friend from the preemie board meeting me there to help with my confidence.

The night before, my friend, K, let me know that she had called to tell them to expect us. (As an aside, I still have the NICU number saved in my phone's contact list. It has this way of jolting me when I least expect it, and yet I can't bring myself to delete it.) K told me the names of the nurses who would be there. The names were vaguely familiar, but for the life of me, I couldn't say for sure if they were our nurses. The very people who helped make my boys well enough to come home, people I spent over a hundred days with, seemed to be erased from my memory. (There are a lot of holes in what I remember from that time. Some moments are etched in my brain for eternity, but many of the day to day reality is long gone. It's a strange sensation.)

I felt the same familiar feeling when I got to that turn in the road, the one about five minutes away from the hospital, my last opportunity to turn around before the hospital. I had to wrestle with myself every single time I went there back in those days. Every day I fought the overwhelming urge to turn around and go home. It was at that point that my courage faltered, the facade cracked ever so slightly. Every day I managed to grit my teeth and keep driving.

I wasn't prepared for that particular panic to flood my body last week, but there it was anyway. I guess I should have expected it; I was going back to the place that holds so many terrifying memories, after all. This time, like the others, I kept driving.

I managed to park in the same parking lot, pass through the same halls. I thought about the woman at the front desk who would wave us in after hours and tell us she was praying for our babies. I thought about that creaky elevator that emptied right outside of the NICU...I passed it by. I focused on my feet and willed them to keep walking.

In the end, my anxiety was for naught. When K and I got up to the NICU, it was really too busy for us to actually talk to any of the nurses. (I hate to admit it, but I was so relieved. I'm not sure if I would have handled that well.) One side of the NICU, the level 1 nursery--the place we spent so much time, was closed. The secretary took us over there to drop off our gifts. K had candy for the nurses, some clothing for the babies, and books for both the parents and the babies. I managed to find some gently used picture books to donate.

I also took our Christmas card, thinking that maybe they'd remember us from the picture. In some ways, we still resemble the two shell shocked parents the knew five years ago. In more ways, we are nothing like the people they came to know back then. But, maybe they've wondered about our two little men...us, I don't know. Maybe our card would show them that we are okay. We're happy. We're thriving.

As I awkwardly stood there listening to K and the secretary chat, I looked around at this place that was our home away from home for over 100 days. There was our corner of the room near the window. I looked at the two empty isolettes in our old spots. Memories tugged at the recessives of my mind. I flashed to Jason lying there under his blue billi lights. Heard the swoosh of his vent. I pictured Is.aac changing Sh.awn's preemie diaper. The room was so, so little. No one was in it, and it was still tiny. How had I never noticed that?

It didn't feel that way while we were there, that's for sure. Instead it felt massive. The space mirrored my emotions at that time--it as vast as the pain and guilt in my heart.

I like that the NICU seemed small now.

I went back through my archives when I got home. I read through those months, remembered things I had forgotten. I shook my head at my naivete. I cried over the hurt and fear and anger that oozed from my words. I told the me of five years ago to hold on, it will be okay. She will be okay.

Because it is okay.

More than okay.

Ja.son's Day!

On this day, three years ago, my little Ja.son came home from the hospital after 99 days in the NICU.

February 3 was actually one of many discharge dates for Ja.son. He was originally set to come home January 20, 2008. but the doctor changed his mind because Ja.son didn't gain enough weight the night before.

Then we were told January 21 would be his homecoming day, but that was postponed 1-3 more days because Ja.son had one high blood pressure reading.

Then he was set to come home on January 23. We got to the hospital only to find that he had been diagnosed with a bladder infection--which meant at least a 10 day course of IV antibiotics.

Then on January 25, while the nurses were changing his IV, Ja.son had a seizure, coded, and had to be bagged. It was one of the scariest moments we had had up to that point.

Sh.awn came home that day, and we had to leave Ja.son behind...so sick and fragile.

Ugh, it was such a hard, hard day. I really feared that Ja.son would never get to come home with us after all of that.

But January 3, 2008, was finally the day. Our little family was complete.

On the outside, I was trying to be cool about it all, but I was filled with such raw emotion...

What I had wanted for so long was finally happening.

I didn't really know what to do with myself that day. I was torn between smiling like a fool and crying like a baby.

Three years ago today, Ja.son, we finally gottcha to take home. Since then you have been a joy and have made me laugh at your crazy antics each and every day. You truly are an amazing, intelligent little boy. I am so lucky to be your mommy.

Sh.awn's Day

On this day, three years ago, this happened. Go check the link. It still makes me teary to relive that memory.

On January 25, 2008, after 13 long weeks, our little Sh.awny came home from the NICU.

I remember the day so clearly--so long ago, yet somehow it seems like it was just yesterday. It's funny how that happens.

I had waited for discharge for so, so long. We had been told it was possible for him to go home; however, we had heard that before, so I don't think I really allowed myself to actually believe it.

As I filled out the discharge paperwork, I expected them to change their minds at any moment. But they didn't.

I held my breath.

As we got him dressed and removed his wires and monitor leads, I expected them to come running over and take him away. But they didn't.

I held my breath.

As we put him in his car seat, I expected his nurse to say something about how the had made a mistake. But she didn't.

I continued to hold my breath.

Before I knew it, we finally made it out of the hospital. I think I was in shock! Lol.

I couldn't keep my eyes off of him the entire ride home. My mind swirled with a bizarre mixture of utter awe at this sweet little creature in the back seat and an overwhelming fear that if my eyes left him for a second, he'd vanish back to the hospital.

I don't think I exhaled until we had finally walked in the front door and locked it behind us. Only then did I feel like he was really ours.

After all that time in the NICU, I was ready to really be a mom, but I was so terrified of actually having a real live baby at home for us to take care of--alone.

With no monitors to make sure he was breathing!

Yikes!

But home he came, and our lives have never been the same again.

Three years ago today, Sh.awny, we finally gottcha to take home. Since then I've been amazed by your strength, determination, and intelligence. You continue to blow me away each and every day...

I am so proud to be your mommy.

The Appointment

For some reason, I am having trouble coming up with the words to describe the neuro's visit and the feelings it stirred in me. I just get so emotionally drained after every one of these appointments. This time it is taking me a lot longer to "recover" from it than it has in the past, which is crazy because this was one of the better appointments we've had.

I've been doing a lot of thinking about one day when the boys were still in the NICU, back in the days before the hydro had been established. I guess the boys were somewhere around two weeks old. Sh.awn had just had a head ultrasound, and we had been given the news that his bleed had become a stage IV. Scary statistics and things like Cerebral Palsy and mental disability were discussed. The nurses were grave and quiet after we had talked with the neonatologist until one of them had come over to ask us if we had any questions. I told her that my gut told me that Sh.awn's bleed wasn't going to be something to worry over. (that would have been right had we not experienced the very dark days last year--so naive) She said that I should be worried, but she looked at him and said that he was looking good. Babies with CP were "twitchy" and Sh.awn was clearly not. She meant it as a comfort, but I didn't take it as such.

Instead, I turned my head slightly to the right and watched my second son twitch and jerk and be so very sick.

(it pains me to admit this. these thoughts make me feel so ashamed.) Her comment made me so afraid of Ja.son for the longest time. I was afraid to hold him, to touch him. I watched him struggle for so long, and I just knew. I knew that if he survived, and there were times when I thought that was iffy, he'd be disabled. I was afraid of him. Most importantly, I was afraid of me. How would I be if he was disabled? Would I be able to love him and be the mother he deserves? I doubted myself so much. (ugh, such ugly thoughts!)

Then the boys came home, life went on, and I tucked those horrible feelings away. Now I don't often think about those thoughts unless I am in the mood to beat myself up and question my mothering ability.

Maybe I can't shake this memory because this boy I was so afraid of, my Ja.son, is doing so well?

Maybe it's because this boy, my Sh.awny, who my gut said was going to be okay, is the one who struggles?

I don't know, but it is there. That comment meant to reassure, which I am sure the nurse hasn't thought of again, haunts me.

---

The neuro was very impressed with Ja.son. I fully expected to hear something negative about him because Ja.son does not walk unassisted yet. Had we not had doctors to "impress" or therapists to work with, it might not have bothered me. But we do, so it does. The neurologist said that he wasn't concerned, it wasn't CP, and that he would just be a late walker. (makes sense as Is.aac was a late walker, too, although Is.aac had someone to carry him around whenever he wanted--my boys don't have that luxury) He was blown away when he heard that Ja.son uses 4-5 words in his sentences regularly. (such as "we go outside and play squirrels" which is 6 words, but he said exactly that this week) Whew.

For Sh.awn, he did classify him as having cerebral palsy--mild hemiplegic, which I expected and had pretty much diagnosed myself. (I struggle with labels, though, and have a hard time saying that Sh.awn has CP. Denial?)

But, the neuro was VERY impressed with how Sh.awn is using his right side. The doctor believes Sh.awn will walk and learn to use his arm, although it will take time of course. He was impressed with the way Sh.awn was seeking stimulus and said a number of times that he sees this as mild. He loved that Sh.awn talked to him the ENTIRE time and used regular 2 word sentences. Plus there is no evidence of mental retardation in the slightest at this stage (which was a HUGE concern with all of the surgeries). I knew that already, but it is great to have it verbalized by a doctor.

The only concern is that with damage on the left side of Sh.awn's brain (shown through the limited use on his right side) there is an increased risk for seizures. The neuro did say that if it was going to be a big issue, we would most likely have seen evidence of it by now. We have not, which is a good thing. There is still a 30% chance, though, that Sh.awn could develop some sort of epilepsy as he grows.

BUT, let me just say that the universe better back off of that one or we are seriously going to have some trouble. No. Seriously.

The neuro was also VERY impressed with the gains Sh.awn has made in all areas. He commented several times on Sh.awn's motivation and desire to do for himself. That, as we all know, if the biggest reason for Sh.awn's improvement.

My boy will not be held back from what everyone else can do!


So, there it is. I don't think there could have been a better appointment short of the neuro waving a magic wand and eliminating the need for shunts and therapy.

---

I just want to thank you all again for all of the support you have given us. It really does help, and I do read your comments at those weak moments I've been having. You all are wonderful; I am so glad I found you! (or you found me--well, however it happened, I am so glad you're here)

---

I also apologize in advance for any grammatical errors, etc, you run across while reading this post. I can't bring myself to go back and proof it. I just......can't. I want to leave these thoughts here, if you know what I mean, and not take them with me when I walk away from the computer tonight.

He is finally home. We are now complete.

I don't really know what to do with myself yet. I am torn between smiling like a fool and crying like a baby. I am trying to be cool about all of this, but I am filled with such raw emotion...

I am so happy that I think I am going to burst.

It amazes me that something so sweet and tiny can, a lot of the time, smell so absolutely FOUL! Clear the room foul. Make your eyes water foul. Gag me foul. (and I have a pretty tough gag reflex, too)

It wouldn't be quite so bad if it was only every once and awhile. But, no. There is a continuous stream of gas coming from the rear end of this boy at all times of the day. Thankfully, there are brief moments when the air clears and I can nuzzle his little head and smell that soft baby scent. Otherwise, I don't know how I would cope!

All I know for sure is that he didn't get it from me! :-)

My Poor Fur Babies

A blended family always needs to go through an adjustment period while each member figures out where he or she falls in the family hirearchy. We are going through such an adjustment now.

My cats have been my babies for several years now. I love them and consider them a valuable and irreplaceable part of the family. So, of course I worried about how the addition of two little babies would affect them. Would I be able to give them enough attention and time to ensure that they stay happy and not feel like they have been replaced by Shawn and Jason?

When I first brought Shawn home, the cats were less than impressed with this loud bundle of joy. He would cry (scream might be a more accurate word) and the cats would go scrambling for the garage or my bedroom, whichever point would get them the furthest from the baby. They were skittish and unhappy about the whole thing. Gracie, who only has eyes for me, took all of this especially hard. She had even taken to throwing up a few times a day while she dealt with this new stress.

I did what I could to comfort them and make them feel like all was well. When I would nap while Isaac had Shawn, I would take them with me to the bedroom so they could get some undivided snuggle time with mama. Slowly but surely, the cats would come closer and closer to Shawn to smell him and get to know him. It took quite a while, and it was painful sometimes to watch, but they were aclimating to the new situation.

Fast forward a few days, and I am happy to report that everyone seems to be settling in to a new routine. Now, instead of running from his cries, the cats will follow me around while I try to console Shawn. Often, they will cry, too, in a show of support for Shawn's distress. While they still don't want to get too close to the baby, they will now stay in the same room with him and don't freak out when he moves suddenly or makes a new noise. Gracie has stopped getting sick and throwing up all over the place. Not too bad for only one week, I think!

Now I wonder what it will be like when Jason comes home. I hope the cats don't unite in protest and do something to me in my sleep! :-)



And I can't get spell check to work for some reason. If you catch an error, overlook it and attribute it to a mind numb from little sleep. Thanks...

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.

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)