Saturday, December 4, 2010

December 4, 2009

So, around 2am on Decemeber 4th, I got up to use the restroom.  I had been in the hospital since the first and hadn't had a bowel movement - a common problem with patients on bedrest.  I was trying to go, but everything in my abdomen hurt.  I gave up my efforts and went back to bed, but as I went to get back in bed, I was in excruciating pain.  One of the Jen's had stayed the night with me.  I think she went to get the nurse or the nurse just happened to come in the room.  (I guess I should mention here that my memory may not be 100% accurate, but it's how I remember it and based on what people have told me.) 

Bacause the pain was so intense, I couldn't hold still.  I was on and off the bed, sitting, standing, squating.  I was desperately trying to get into a comfortable position, but I couldn't.  I pulled the monitor belts off of me - it felt like they were a vice on my abdomen.  At one point Jen yelled at me to save my IV because if I pulled it out, the nurses wouldn't be able to get another one it.  So, during all my writhing around, I had my arm in the arm trying to protect my IV.  I remember thinking that I was totally out of control and that if I couldn't control myself, the nurses and doctors wouldn't be able to control me.   I was telling myself to hold it together - I could have been saying it outloud, I don't know. 

(Later when my Reproductive Endocrinologist - an OB/GYN who specializes in fertility - reviewed my file and I told him my experience, he said what probably happened was as I was getting in bed, it increased the pressure in my abdomen.  That pressure was too much for my already inflammed liver and it caused my liver to rupture.  I was bleeding from my liver, which filters all your blood.  A large liver rupture can cause you to bleed to death.)

The OB resident came in my room.  Before I could yell at her to GET OUT, she was gone again.  (I had fired her the first night I got to Roseville.)  And, then the doctor came into my room.  He asked the nurse if my midnight labs were back.  They were and they weren't very good - my platelets (helps your blood clot) had dropped again.  I remember telling the doctor that the babies were killing me.  He said it was time to do the c-section.  I asked if we could wait until Bubba arrived from home.  He said no.   I also remember asking for a priest.  I really thought that the three of us were going into the OR and that only two of us would make it out alive.  They gave me something.  It was either pain medicine or a sedative.  It helped. 

So, then the rush was on.  Anesthesia came by to talk to me about the surgery.  I told them to please make sure they gave me everything in their bag of tricks to keep me from barfing my guys out.  I normally have nausea and vomiting for up to three days after I have general anesthesia and I didn't want to do that after a c-section.  The decision had been made for general anesthesia because my platelets were dropping and giving me a spinal was way too risky. 

If I close my eyes I can see every ceiling tile and light from my room to the operating room.  I know exactly what their ceiling looks like.  I remember going into the OR and hearing everyone working to set up the room for a twin delivery.  I could feel the energy as well.  I know very well what it's like to be in their position and now I was the one on the table waiting.  And, waiting.  I started to panic a little and then I heard Mary Jo's voice.  I had worked with Mary Jo and she has this calming presence about her.  She was helping set up the room and I thought if she was there, I would be okay.  (Funny thing, I don't even know if Mary Jo knew it was me.)  But, then they called her out of the OR and I started to panic again.  I grabbed the anesthesiologists hand and told him I was starting to panic because it was taking too long.  He reassured me that it was okay and reminded me that they weren't going to knock me out until everyone was in place.  (This is done so that the babies don't get much of the general anesthesia.)   And, the anesthesiologist said to me that he was going to give me the propofol.  I saw his start to push the mikly white drug into my IV.  I remember thinking, "I'm not Michael Jackson," and wanting to make the joke, but I was out. 

Colton Duayne was born at 3:27 am.  He weighed 900 gms (1lb, 15.8oz) and was 14 inches long.

Sean Patrick was born at 3:28 am.  He weight 540 gms (1lb, 3oz) and was 12.5 inches long. 

Both boys required a lot of help at birth.  They both required chest compressions and breathing tubes.  While the boys were in the NICU, a form was accidently given to me that said when Sean was born, he had absolutely no heart beat.  None.  Now, the labor and delivery nurse in me knows that it would be expected that the boys would need breathing tubes and possibly chest compressions, but to see it in black and white that your baby was born without a heartbeat is completely earth shattering. 

As the boys were taken out of the OR, they were taken through the recovery room on their way to the NICU.  Bubba had just arrived and met up with the boys in the recovery room.  He followed them down to the NICU.  He stayed only a few minutes.  He said it was too much to watch and didn't want to be in anyone's way. 

My poor nurse, Cindy, really earned her wages that night.  I am probably the patient she still talks about when she wants to share a nursing horror story.  She was actually the one who "called" my c-section that night.  When the other nurses questioned her since the OB hadn't seen me to call it, she told them, "Oh no!  She's done!  I'm calling it!"  She had to draw blood out of the boys' umbilical cords (the part still attached to placentas).  She said there was no room in the OR, so she had to do it on the floor.  She also later told me that she swore she saw the doctors praying over my uterus.  I was bleeding.  I was bleeding very badly.  She said the doctors considered doing a hysterectomy.  They gave me misoprostil and two doses of hemabate to stop the bleeding.  (The main side effect of hemabate is diarrhea - horribly smelly, profuse diarrhea.)

I had actually predicted how my delivery would happen.  When I was being transfered to Roseville, I had text a friend, Liberty, who was a L&D nurse there.  I was telling her I was being transfered and why.  Because we know how things go in L&D, she asked me, "So, when is your crash?" (meaning my emergency c-setion).  I had text her back, "at 2:40 in the morning on a busy night."  When I had arrived in Roseville, there were only a few patients, but the evening of the 3rd, every labor room was full and the doctors were doing back to back to back c-sections.  It was the DEFINITION of a busy night!  My c-section was called around 2:40. 

It's normal to spend a few hours in the recovery room before being sent to your postpartum room.  I was there from about 4 am to somewhere between noon and 2:30 pm.  I don't remember the first few hours in the recovery room.  I have been told I was "fiesty, yet directable," and kept negotiating everything that was happening and kept dropping F-Bombs.  Apparently, me thinking I felt like I had been hit by a truck translated into me yelling, "I feel like I've been hit by a fucking truck!" Oh, my poor nurses.  I wouldn't want to put up with me in the recovery room! 

At one point, I kind of woke up in the recovery room and I looked for my bands.  I knew the nurses would have given me bands that matched the babies.  I looked to make sure I had two bands.  If I only had one, then it meant Sean didn't make it.  Oh God!  How many bands??  TWO!!  WOOHOO!!  I also remember the doctor coming by to check on me.  I asked him if he had to do a classical incision (up and down on the uterus which requires c-section deliveries for all future pregnancies).  He said yes.  I asked him if he used sutures or staples (to close my skin).  He said sutures as if he would never have considered staples.  I gave him a thumbs up and dozed off. 

In the recovery room, my blood pressure was 170/110 to 175/115.  At least I was consistant!  I was given a PCA - patient controlled analgesia.  Oh God!  I loved my PCA.  It was the BEST. THING. EVER.  If my pain got to be too much, I would just hit my lovely little button and everything would be alright. 

I was finally moved to postpartum.  The nurse was a little concerned to find so many absorbant pads underneath me.  I said told her I had two doses of hemabate.  She got this horrified look on her face.  I reassured her that I wasn't suffering the dreaded hemabate diarrhea.  She was so relieved.   Nobody wants to clean up a hemabate mess.  NOBODY. 

In my postpartum room. I slept and slept.  It felt good after only sleeping about three hours a night.  I had some visitors - my mom and Ralph and my cousin.  I don't remember much more than that.  The social worker did come by and give me some information and pictures of the boys.  Bubba had also taken pictures of the boys using my phone.  I looked at those as I began using the breastpump.  Bubba had finally gone home to get some sleep. 

When Liberty got off work that evening, she came to see me.  I hadn't eaten or gotten to see the boys yet.  She found me some food and a wheelchair.  Even though she had an hour drive home and was getting up early in the morning, she spent about an hour with me in the NICU.  The boys were about 21 hours old when I finally got to see my sweet tiny baby boys.

That night, as I drifted off to sleep, it began to snow.  It hadn't snowed in Roseville in 20 years.   

Wednesday, December 1, 2010

One Year Ago Today . . .

I woke up feeling like something REALLY bad was going to happen.  I tried to shake the feeling.  I cleaned house, I baked, but the feeling was still there.  In the late afternoon I took a nap.  When I woke up, I made dinner.  Within about 90 minutes of eating dinner, I became sick.  I thought it was my gallbaldder.  By three am on Dec. 1st, I was in Triage 4 at Antioch Kaiser.  I was crying in pain.  I mean crying.  By about noon the decision to admit me, start me on magnesium (to prevent seizures) and give me betamethasone (to help mature the boys' lungs) was made.  The call was made to Walnut Creek Kaiser.  They couldn't take me.  The doctor was saying he was going to call Oakland; I offered to go to Roseville.  Traffic and parking in Oakland is horrible.   Oakland was actually called, but couldn't take me either.  Roseville had room for me and the boys.  At about 2 pm on Dec. 1st, I in the back of an ambulance on my way to Roseville Kaiser. 

Let me tell you, I have never been so scared in all of my life.  I was terrified!!  I knew what was happening and how bad this could/would end up.  My nurse who admitted me was so super nice.  She actually sat with me a prayed for the mine and the boys' safety.  She was a sweatheart.  Really.  And, then, on came the night shift nurse.  Oh Lord!!  She scared me.  I never thought I would be afraid to fire a nurse, but this woman scared me.  I mean, really scared me.  And, lucky me, I ws stuck with her for 12 hours.  Whoever thought of 12 hour shifts was INSANE!!  When she left, I knew I would never have to have her take care of me again.  WHEW!

(I should interject that the rest of my nurses were awesome!  Tish, Lib, Stephanie T, Cindy:  you ladies all ROCKED! Cindy - sorry for trying to die on you.  I really didn't mean to.  I swear.)

I spent the 2nd of December feeling pretty good until midafternoon when I was sent to ultrasound.  I was trying to get transferred to Walnut Creek (they now had room for us).  The perinatologist wanted a growth ultrasound on the boys before allowing me to be transferred.  Well, the ultrasound showed that Sean was severely intrauterine growth restricted (IUGR) - he was in the 3%tile of growth - and his umbilical artery had almost no blood flow.  So, that meant no transfer and the intermittent baby monitoring I had just been granted was switched back to continuous monitoring of the babies.  It also meant that Sean wouldn't survive inside me for very long.  But, the ultrasound showed that his estimated weight was 450 grams (454 gms = 1 lb).  Anything under 500 gms is considered too small to survive (yes, babies smalled than that have survived, but it is very rare).  Colton was doing a little better - his weight was estimated to be in the high 800 gm range (nope, I can't even remember what the estimate was). 

On the morning of Decmeber 3rd, the perinatologist came to see me.  He had a plan.  We would check Sean by ultrasound every other day to see how he was doing.  When he had no umbilical artery blood flow, we would deliver the boys.  Or, if I was "ICU sick" we would deliver the boys.  The perinate told me that I was the sickest patient that had, I was the patient they were talking about at the nurses' station, and I was the patient they doctors in house would be calling him about. 

A few hours after speaking to the perinate, I had a little mental breakdown.  I was trying to get some sleep and I realized that the boys would be born before Christmas and I wasn't ready for their first Christmas. Yes, totally rational.  I know.  But, it was how I was dealing with things on 3 hours of sleep a night.  So, my friend Jen went to get my nurse to ask for an Ambien for me.  Tish comes in, practically climbs in bed with me, holds me and strokes my hair and tells me it's going to be okay.  And, then she hands me a that little sleeping pill. 


I talked non-stop for three hours.

Yes.  Non-stop.  Three hours. 

It was described as me being a drunk Vegas party girl by someone who has seen me in drunk in Vegas partying!  The nurses admonished Jen and Jen for keeping me awake.  They assured her that they were not engaging in conversation with me.  I say they were, but whatever!  And, then I finally passed out and slept for 90 minutes!!  Yes, the Ambien gave me 90 minutes of sleep after a three hour talking fit.  I woke up and declared:


Later, one of the Jen's confessed that I might have felt great, but I looked like HELL.  Um, thanks.  But, that's Jen, she's honest.

At the time, we didn't know it, but I was getting sick again . . .

Thursday, November 18, 2010

Can you say OVERWHELMED???

I am really super excited that the boys are getting ready to turn one and that Christmas is right around the corner.  But, at the same time I am feeling completely overwhelmed with what we have going on the rest of the year.  Let's count how many appointments we have:

4 with PT
5 with Easter Seals
1 MRI scan
1 post MRI follow up
2 Synagis shots
2 one year check ups
2 pre-op physicals
2 surgeries
2 post-op follow ups
and a partridge in a pear tree . . .

Not to mention, I have one appointment, Bubba has one, and my neice has two and will be starting weekly appointments.  So, that only adds on 10!!!  Has anyone done the math??  I have!!  That is 31 appointments in 43 days.  Thankfully, the Easter Seals appointments are at the house and all the boys appointments are paired up. This also doesn't include that fact that I am so stressed out I can barely move my neck.  I need to see a chiropractor.  Seriously.  Like, I need to have seen him yesterday.  Motrin and tylenol aren't helping one bit.  I am also working three days a week (but taking two off for their surgeries).

Go ahead, start the betting pool.  How long will it take for me to have a meltdown? 

And then we have the boys' birthday and the holidays.  We will be doing Thanksgiving at my mom's along with a family Christmas party the week before Christmas.  Christmas will be at my house since the boys' will be recovering from their surgery (I want to keep them close to their own beds).  I also have to plan and host their 1st birthday party.  But, since we are on serious RSV/cold/flu season lockdown, the party is being restricted to Bubba and my immediate families.  But, the party has to be planned (mostly done) and the house needs to be cleaned. 

Anyone want to reconsider their guess of when I will have my meltdown?  Anyone?

And, to add to the craziness, we are redoing our floors.  Since Colton is now a master army crawler (he is even starting to use his little legs to get him going), we have to pull up our carpet.  It's not safe - tack strips are exposed in the hallway.  So what are we doing??  We are pulling up the carpet and laying laminant flooring; yes, we are doing it ourselves.  Someone, please just shot me and put me out of my misery!!   The good news of this is that by the time the carpet is ripped up and the new floor is down, the house will be clean and ready for company!  :/ 

Maybe, I should look forward to the new year . . . uh oh!  Just checked the calender! 

2 with PT
5 with Easter Seals
2 with audiology
2 with opthamology
2 Synagis shots

And, they are trying to get Seanie into weekly PT.  That would add on 4 more PT appointments.  They are working one getting him in home PT, but if he can't get it, he needs to go to Fairfield for weekly PT.  The neice will have her weekly appointments too. 

Maybe I should take up drinking . . .

Wednesday, November 3, 2010

A Special Kind of Hell

Last Wednesday, Colton had a routine follow up with his neurosurgeon.  Well, it ended up being everything except routine!   His head measurement was up significantly.  He had jumped from the 10 %tile to the 50%tile, which was concerning.  But, now, his head had  grown even more!  The new measurement put him in the 90%tile!  Doc wanted an MRI immediately.  Nope, no MRI - they were fully booked.  He said ok, let's get him into a CT.  CT could fit him in right away, so off we ran over to CT.  When we got there, they took us right back.  We left CT knowing nothing.  We drove up the street to get some lunch (it was only 3pm already). While waiting in line at my most favorite place (Chipotle), the doc called my cell phone.  He had spoken to the pediatrician on duty at the hospital and was having Colton admitted for a shunt revision the next day! 

So, I called Bubba for him to pack a bag of everything Colton and I would need for the next few days.  I get my lunch and head back to the hospital.  By now, it's about 4pm and it's a hour wait until his room is ready.  Once his room is ready, we are taken to his room and greeted by a nurse.  She introduces herself and tells us that our nurse will be in soon.  Um, to me, soon doesn't mean 30 - 45 minutes!!!  That nurse introduces herself, tells me they don't have any of Colton's formula on the floor (and then stares at me like I sprouted a second head when I tell her the NICU has a huge stockpile of it!), tells me someone will come start an IV and draw some labs.  And, then she's gone.  Gone.  Gone.  Gone.  She never showed me how to work anything (no, she didn't know I was a Kaiser RN), tell me any special peds floor rules, offer me water, a blanket or a pillow.  N.O.T.H.I.N.G.

Bubba, Seanie and Amanda show up a few hours later.  They have clothes, tolietries, blankets, pillows and water for me!  YAY!!!!!     I tell them how things are going - the good and the bad, mostly the bad.  And, then Bubba asks, what would happen to Colton if you couldn't stay.  Um, well, he would be in him room ALONE.  If he cried, nobody would hear him.  If he screamed, nobody would hear him.  His room was actually across the hall from a nurses' station that was completely vacant - no lights on, no computers on, no supplies, nothing. 

Then there is the IV fiasco.  Multiple tries to get it in and then it blows within an hour.  Okay, I get it.  IVs don't alwys go right in and sometimes they blow.  But . . . . then lab comes in to draw his labs.  Thanks lab chickadee, YOU LEFT A FREAKING SHARP IN MY KID'S CRIB!!  It wasn't even capped!  Not to mention the rubberband you also left in there.  Second IV goes in his head.  This is a normal place to put an infant's IV.  But, I ask, won't the neuro want it some where else since he's having brain surgery???   She tells me nope, it's okay because it's on the other side of the head.  Next morning, doc comes in and wants to know why the IV is in his head.  I tell him.  He's mad.  He tells me they will use it to knock him out and then replace it before they proceed with the shunt revision.  I'm not shocked, but I am clearly annoyed with the nurse who put the IV in his head. 

Surgery goes well.  The catheter that goes from the shunt into the ventricle was clogged.  The shunt and the tubing into his abdomen were both functioning properly.  So, the doc just replaced the catheter.  Colton was taken to the PICU after his surgery.  As we were walking in the PICU someone asks if we are the Coats.  We nod, he says, GOOD!  We need you, he's awake and not happy!  So, we rush to his room to find him screaming and crying and thrashing about.  I look at Bubba and ask, "Is this how I am coming out of a general?"  He nods; I say, "Well, then, I would like to take this moment to apologize to everyone."   So, the nurses medicate him with about a half a dose of morphine.  No help.  Then, we try to give him some tylenol with codiene and juice.  He spits it all up.  Then some Zofran to help with any nausea.  Then some Ativan because he is clearly trying to go to sleep, but just can't let himself.  Nope, doesn't work.  Then a full dose of morphine.  Aaaaahhhhhh, good night, my sweet baby. 

The night was really uneventful.  At about 3pm the next day, a MRI showed the shunt was in the proper place and the ventricles were already shrinking.  We got our discharge papers and home we went.  But, once we got home, a long, long night began.  Colton began throwing up.  He wouldn't keep anything down.  We went back to giving him juice to see if that would stay down.  No such luck.  So, at mightnight, I call the advice and tell her I want the neurosurgeon paged so that I could talk to him.  No, she says, we need to bring Colton into the ED.   UGH!  Bubba and I rush around packing my bags to prepare for another few day stay in the hospital.  And, then, I have an idea.  I call my work and ask to speak to the pedi who is covering our nursery.  We talked about what is going on.  She told me that since Colton had never had straight juice, it might be too harsh on his system.  So, we mixed his bottles half juice/half water until we could get to the store in the morning to get some Pedialyte.   We also fed him a half an ounce every 15 - 30 minutes.  Oh, it was a long night.  Since I hadn't slept much in the hospital, Bubba stayed up most of the night feeding Colton.  The next day was long and trying, but Colton was slowing keeping more of his bottles down.  But, he would throw up his whole feeding if we gave him any formula.  We were giving him Tylenol every 6 hours or so. 

On Halloween morning, Colton woke up feeling much better but it took until the evening for him to keep down about 3 ounces of formula.  But Monday morning, he was eating full formula feeds.  Poor baby.  I think we jumped the gun bringing him homw Friday night.  He probably needed more Zofran to keep the nausea under control.  Both Bubba and I have a terrible time with post-operative nausea and vomiting.  For me, it can last up to three days.  For Bubba, he says it lasts 24 hours.  Um, no, Bubba, you will randomly vomit up to a week later!!!

So, how about some pictures from the hospital visit . . .

I'm just gonna eat this, okay?

Hit a button and milky bottles magically appear  :)

Preemie Prison

In pre-op

Lots of drugs on board . . . .

Vending machine dinner

Tuesday, November 2, 2010

Road Trip Photos :)

Amanda in Santa Nella - 1st stop - Starbucks!

Hungry Sock Monkeys

Buttonwillow Truck Stop

Mmmmm . . . . fries . . . .

I love me some fries! :)

Why is there a Busch in front of my hotel?!?!?!  NASCAR in Fontana

Seanie and Nana

Colton and Nana

Sunset from the Anaheim Hilton

Don't worry . . .  more photos to come . . . 

Trip to Nana's and Disneyland :)

Over Columbus Day weekend, I took some time off work and we took the boys and their cousin to southern California to see their Nana and visit Disneyland.  Nana is 86 years old and has lived in Fontana since I was born.  She doesn't travel very well so she hadn't even met the boys yet and it had been about 6 years since either Amanda or I had seen her!  Way too long, if you ask me. 

So, on Friday, when Amanda got out of school, we finished packing up the car and headed out of town. Almost immediately the boys fell alseep.  They didn't sleep the whole way down, which wouldn't have been good because then they wouldn't have slept that night.  With stops, it took us about 8 hours to get to Fontana.  By myself, I can make that trip in about 6 hours.  The boys waited to eat until we got to the bottom of the Grapevine.  We stopped for In N Out for food for us, milky bottles for the boys, and a bathroom break.  Well, when the food came, Colton immediately stuck his hand in the french fries.  He was going to have some of those fries no matter what anyone else was saying.  Sean wasn't interested in the fries until he saw that Colton was enjoying them.  So, we handed Sean a fry to see what he thought of them.  He liked them, but not nearly as much as his piggy brother.  :) 

 When we finally made it to the hotel in Fontana, Colton was not ready for bed.  Of course not, he had been sleeping in the car.  And, sharing the pack and play with Sean meant he thought it was PLAY TIME!  UGH.  I was up with him until 3 am.  Everyone else was sound asleep. 
We spent Saturday with Nana, Cheyenne, and Mark.  Everyone had a great time.  It was nice to catch up with everyone.  :)
On Sunday, we went to Disneyland.  Now, I know the boys are too young to enjoy Disneyland.  But, I'M NOT!!  I seriously love Disneyland.  I wish I could go once a month.   So, we had a great time in Disneyland and California Adventure.  The boys loved It's a Small World and Pirates of the Caribbean.  Neither of them were scared or cried.  Colton was completely facinated by Small World.  It was a long hot day.  We were in the parks for about 12 hours.  We even walked back to the hotel before Disney closed!  The next day was going to be the long drive home. 


Thursday, October 14, 2010

Where is Autumn?

Today it was about 90 degrees.  Where is autumn?  I want the cool crisp breezes.  I want to be able to fill thse house with the smell of chili cooking.  I want to snuggle up under a warm blanket with the boys while I sip hot chocolate.  Instead, the air conditioner is blasting during the day.  :( 

Another autumn duty for the boys is their flu shots.  Since this is their first flu shots, they will actually need a series of two.  They got their first one today.  Bubba also got his today.  Then, after their appointment, I waited in the pharmacy for a perscription.  One of the folks in line said nothing in life is free.  Another person says, "germs are!"  A third comments, "Kaiser is giving us free flu shots this year!"  And, then the crazy lady jumped into the conversation.  Oh brother . . . here we go . . . She started ranting how her mother died from a flu shot.  She went on about how her mother's doctor explained that flu shots kill your immune system and make it so you cannot fight simple infections.  She then started asking who got flu shots.  I said I get one every year and just gave them to my kids (with a smile, of course).  Another woman says, "oooooh, you should talk to your doctor then . . . "  I replied that I was a registered nurse and my babies were micropreemies and a flu this year could kill them.  The crazy lady then says, "WELL!  The flu shot DID kill my mother!"  I said, "Well, I will take my chances," with a smile.  HOLY COO COO FOR COCOA PUFFS!!

And, now for the good part . . .

Colton: 16 lb, 15.9 oz; 27.5 inches
Sean: 14 lb, 4.7 oz; 26.25 inches

We are watching Colton's head size.  Although his MRI is August was great, his head has had a growth spurt while the rest of him hasn't.  UGH!  His neurosurgeon is on vacation until Monday, but is aware of Colton's head measurement.  The good news is that Colton is having no other symptoms of his shunt not properly working.  So, what does this mean?  We watch and wait.  I hate this part.  I really, really hate it. 

Some excellent news for Sean is that in 10 days, he has gained almost 4 ounces.  WOOHOO!!!  These measurements also says he's grown 2 inches.  That has to be a mistake.  It has to.  I am thinking he was 26.25 inches on his October 4th appointment. 

Maybe this weekend, I will be able to write a blog on the boys' trip to Nana's and Disneyland.  We had a blast and the boys are GREAT travelers.  

And, now sweet little Seanie says Good Night . . .

Tuesday, October 5, 2010

Long Overdue Update

It's been just over a month since I've updated the blog.  It's long overdue.  A lot has happened in the last month.  A lot.

Today the boys are 10 months old actual; 6 1/2 months adjusted.  :)

Colton:  16 lb, 9.9 oz; 26.75 inches
Sean:  14 lb, 0.6 oz; 24.25 inches

Neither boy is on the growth curve.  For some reason, they put them on the growth curve based on their actual ages.  It doesn't make any sense to me, but that's how it's done.  When I plot them out on the growth curve based on their adjusted ages, Colton is between the 10%tile and 25%tile.  Poor Seanie doesn't make it onto the growth curve based on his adjusted age.  We seriously need to get this baby to eat. 

Colton continues to do well despite he shunt.  He continues to hit his milestones based mostly on his actual age.  We are working on his sitting.  He does it pretty well, but he likes to curve to his left.  So, before sitting, we do some stretches.  On his own, he is practicing his army crawl.  Once he starts crawling, NOTHING will be safe.  NOTHING, I tell you.  He has had an MRI (in August) to check his shunt and this week he will finally see the doctor for his follow up.  About 10 days ago, he saw the pulmonologist (lung specialist) and was discharged from his service.  :)   With his discharge from pulmonolgy, the doctor notified Apria that he no longer needs the apnea monitor.  Well, duh!  We stopped using it a few weeks earlier when we found him tangled up in it!  Kind of defeats the purpose of an apnea monitor if it causes the apnea!!!!

Sean is off oxygen at night.  WOOHOO!!!  But, as we have lost the oxygen at night, we have gained an eye patch during the day.  Sean has strabismus.  I took him to the doctor because his right eye crosses in and he seems to have some trouble focusing.  Well, the doctor lectured me on not saying lazy eye because that's the same as saying bum leg - it means nothing.  Um, ok, I never said lazy, I said crossed!  The treatment is patching him for an hour a day to retrain his brain how to control the eye.  It's actually a brain problem, not a muscle problem.  The patching should help as he doesn't always cross it.  It will also tell his brain to use the eye.  Right now, what is probably happening is the brain is turning that eye "off" and ignoring it.  If the brain continues to do so, he will be blind in that eye (but only because the brain shuts it off - not because the eye can't see).   The patching should take care of this.  He might need surgery to correct the eye, but that will be much later down the road. 

We are working on getting Sean to eat better.  He sleeps through the night (well, so does Colton), but we wake him up once or twice a night to feed him.  He is still getting the 24 calorie mix of Similac Neosure (or whatever it's called now - Expert Care?).  Thankfully, the Neosure wasn't recalled.  But, it's getting hard to find.  Someone at Target said they are getting people buying it because the regular Similac was recalled.  Great!!!  So people are buying their term babies preemie formula when they have other options.  I have two options - Neosure and EnfaGrow.  The Neosure is going to make your baby sick and give them too many calories!!!!  Go buy some Good Start!!!  The pedis are recommeding it for babies that have trouble on other formulas and it's cheaper!!  If my guys could have regular formula, I'd have them on Good Start!!!! 

Sean will be seeing physical therapy more often than once a month.  He is progressing, but it is very slow.  He should be working on sitting.  He's barely ready to start working on it.  Also, he won't reach in front of him to grab toys.  His arms are tight; so, we stretch them several times every day.  Hopefully, we can stretch out the tightness.  He actually is trying to pass up sitting and trying to crawl.  Because his arms are so tight, he can't get it down.  He gets his hips up and can move his knees forward.  But, he can't get his arms to do what he wants and keep his head up.  He works so hard, but gets nothing accomplished.  Poor baby.  He looks like an inchworm trying to move.  One day he will get it. :)

Tomorrow the boys will going to Grandpa's house at Clear Lake.  They will get to see their Great Grandma who hasn't seen them since they were in the hospital.  They will also get to meet their cousins, Patsi and Rachael along with their babies, Brian, Vincent, and Carson.   Over the weekend, the boys will get to meet their Nana (their other Great Grandma).  She lives in southern California so we might try to squeeze in a visit to Disneyland.  :)

After all this visiting, we go on cold/flu/RSV lockdown.  And, while you might think "lockdown" is a strong word, it really is what we have to do.  The boys won't be allowed to have hardly any visitors and won't be going out for anything expect doctor/therapy appointments (no shopping, no birthday parties, no dinners out).  All visitors have to have had their flu shot and pertussis vax (whooping cough - California is currently in the midst of a whooping cough outbreak), can't have had any cold or flu symptoms in the last two weeks AND can't have been in close contact with anyone who has had a cold or flu in the last two weeks.   I will have to come home, change my clothes in the garage, throw them in the washing machine, and go immediately to the shower.

The boys will get their flu shots this year.  Since it's their first time, they will get two shots about a month apart.  They will also get monthly Synagis shots.  Synagis helps them fight RSV.  Most all children are exposed to RSV by the time they are two years old.  And, for everyone, it's like a terrible cold.  For a micropreemie, it can be deadly.  So, for micropreemies, they might qualify for the shot.  It's very expensive ($1000 - $1500 a dose!).  Sean's risk for RSV is so high (they assume if he gets it, he will be admitted to the Pediatric ICU and be discharged back on oxygen fulltime) that Colton will be given the shot.  Colton doesn't qualify for the shot.  Hence, the strict lockdown.

Friday, September 3, 2010

Welcome to my Crib

The boys continue to do well.  Colton is hitting every milestone he should be hitting.  In fact, oftentimes, he hits milestones based on his actual age, not his adjusted age.  He may not continue on this path, but he has really set our expectations for him very high.  :)  We are working on sitting and crawling.  Once this kid gets mobile, we are in TROUBLE!!!  He has already learned that if he wants something, he can roll to get it.  About 10 days ago, he had his MRI to see how his ventricles look.  His appointment to see the neurosurgeon isn't until October, but if there was a problem with the MRI results, we would have heard from the doctor by now.

We are still working on Sean's eating.  He is such a slow and disorganized eater.  We have started waking him up in the middle of the night to feed him.  Good-bye sleeping through the night!  But, the good news is that in one month, he gained 15 oz!  Let's see if the little munchkin can keep it up.  We are still working on getting him to roll over.  He does it most of the time, but he hasn't quiet figured out how to roll his shoulder to get it under him. 

The really big news for the boys is that the are now in their own cribs - in their own room!!!  Colton outgrew his side of the crib so they boys had to be split up.  I wanted to have the co-bed (sleep in the crib together), but I don't feel comfortable doing it with an oxygen tube and two sets of apnea monitor cables.  So, into their own cribs they went.  And, since we can't fit two cribs in our room, they were moved into their own room.  The very first night they were in their room, I went in there and let out a big sigh and an, "aaaawwww."  From our room, you could hear Bubba saying, "you better not be crying in there!"  No, I wasn't . . . until he said that!   

I can't believe it's September already!  I've already gotten a call about Christmas plans (the family needs to know my work schedule to plan the family party).  Oh brother, know what that means???  FIRST BIRTHDAY PARTY!!!!  HOLY SMOKES!!!!  I guess, I should get to thinking about that!  Heck, I don't even know what they are going to be for Halloween!  I did take a peek at some of the costume websites, but geez, I feel like I am very behind.  Very behind

Thursday, August 12, 2010


I have been suffering; we've all been suffering.  Sean is feeling the best out of the whole family.  Daddy and Colton both have colds.  Daddy has a big cold, complete with, "I don't feel good.  What can I take to  make me feel better?"  Colton has a little bit of a cold - not big enough to worry about, but definitely big enough to cancel his audiology appointment in the morning.  And, I have somehow managed to hurt myself again.  I rolled my ankle the other night.  Now it's swollen and I have a huge bruise along the side of my foot and ankle.  It constantly hurts no matter what I take for it and I walk with a very noticable limp.  I have also become an insomniac.  The boys are sleeping through the night, but mommy can't!  This week, the earliest I have gone to bed has been 4 am.  Yes, 4 am.  Usually, I've been hitting the sack at about 6 am.  THIS IS NOT GOOD!  I've tried taking benadryl, unisom and even a pain pill.  Nothing has worked.  NOTHING! 

So, how about some good news.  Because good news is what it's all about, right?  The boys are now 5 months adjusted.  Yes, my little guys are already 5 months adjusted (8 months, 1 week actual).  How did we celebrate?  Nice warm baths, warm milky bottles, and brand new matching jammies.  WHat more could a preemie ask for?

Night all!

Saturday, August 7, 2010

Saying his R's

On Wednesday, Sean had his speech therapy appointment.  When I told my co-worker he was going to ST, she said, "What?  The kid can't say his R's yet?"  I replied that he just didn't need help with his R's, but also saying his TH's and the ST promised to getting him saying them real soon

So, what did we really learn from our ST visit?  That Sean likes to eat, but not from a bottle!  He likes to chew his bottle's nipple.  What baby chews his nipples???  Well, we all know little Seanie likes to do things his own way.  This is just one of those things.  So, the ST gave us some suggestions about how to get him to actually suck on the nipple.  So far none of them have worked. :(  But, we're working on it.  The good news is that Sean does have a strong suck when he is sucking on your finger and he shows absolutely no signs of an oral aversion.  YAY! 

Sean also recently had another hearing exam.  He passed with flying colors.  Colton had his and he passed on his left side (had previously passed on his right side), but his right side showed a lot of fluid.  So, we are continuing to watch his for fluid in his right ear (left ear had no fluid).  What happens if Colton continues to have fluid in his ear?  He will get a tube in it.  For preemies, they put ear tubes in sooner rather than later.  This is done because preemies are at a great risk for language delays and fluid would cause an even greater delay.  Getting rid of the fluid helps get the babies back on track for their language development. 

Both boys are enjoying their laughing skills. Colton thinks he's funny.  He loves to laugh at himself.  I swear, he thinks he's the funniest kid around.  He loves to flirt when we're out.  Little Sean, in contrast, is such the observer.  He looks around checking everything out all while sucking on his thumb.  But, when he thinks something is funny, he lets you know with his hoarse little laugh.  It's so adorable.

Friday, July 23, 2010

Big Boy Seanie :)

Today was Sean's three hour oxygenation study.  He did really well.  He has grown up enough to have his oxygen off during the day.  We are so happy.  He can't get it off at night because his oxygen level dropped while he was sleeping.  Tonight he sat in the living room and enjoyed his new found freedom.  :)

He hasn't gained much weight since his appointment last week.  But, we have already moved him to all 24 calorie feedings.  Poor kid.  24 calorie feedings are hard on the tummy.  But, hopefully, we transitioned him slowly enough that it won't be too rough. 

Thursday, July 22, 2010

New Things

Colton has discovered a few things . . . he has feet and he can blow raspberries.  Oh, fun times.  He thinks when he blows raspberries it's hilarious.  But, when I do it, he hates it.  It actually makes him cry.  LOL  Of course, he cries big crocodile tears and his nose and eyes get red almost instantly.  So, that means he gets to blow raspberries, but I don't.  :(  And, he loves to hold onto his feet.  He isn't sticking them in his mouth yet.  Not really sure how that will go over since I am a self-proclaimed feet hater.  I mean, I CAN NOT stand feet.  They are gross and disgusting.  They have toe-jam and fungus.  Did I tell you they are GROSS??  I guess now would be the time to mention that the boys' gear tried to kill me.  The bouncy chair failed in it's mission.  However, it did manage to break my toe.  I've had to tape it up in order to go to work.  But, it does give me the opportunity to torture my coworker who shares my disdain for feet. 

And, now, some pictures that I shared with my buddy who hates feet as much as I do . . .

Now, the second photo was taken so I could send it to my foot-phobic friend.  Bubba said let's take a picture with him kissing it to make it feel better.  Since I share her hatred of feet, I just assumed he wouldn't really kiss it, but maybe pucker up like he is going to kiss it.  So, while my neice is taking the picture (we were all in the car for a day trip), I am screaming bloody murder.  I mean REALLY?!?!?!  Who licks feet?!?!?  DISGUSTING!  But, I guess that's what happens when you assume . . .

Sean continues to work on his tummy time skills.  At least now he doesn't think it's torture.  That's a huge step for him.  HUGE!  And, while he isn't interested in his feet, he has discovered that thumb sucking is AWESOME.  In fact, his thumb sometimes gets in the way of his feedings.  He will be eating really well and then suddenly he's not.  You look down to discover that not only is the bottle in his mouth, but so is his little thumb.  Oh, Seanie!  It doesn't work that well! 

In the afternoon, both boys have specialist appointments.  Sean will see the pulmonologist and Colton will see the audiologist.  We will be attempting to do the hearing screen on Colton's left ear.  We did his right ear last time and then he declared himself finished.  Sean is getting his oxygenation study done.  We will be seeing how he does with lowered doses of oxygen, and hopefully, how he does without any oxygen.  He has decided he doesn't really want/need the oxygen.  His nasal cannula spends more time in his mouth than his nose.  Even though the lighting is bad, this might make up for having to look at my feet pictures.  :)

Thursday, July 15, 2010

Post NICU Developmental Follow-up

The boys had their post NICU developmental follow-up appointment this morning.  We met the developmental pediatrician and the physcial therapist.  We were supposed to meet with the medical social worker, but she had a schedule conflict.  So, I spoke with her a few days ago.  First they weighed and measured the boys. 

Colton: 13 lb, 11 oz; 24.75 inches
Sean: 11 lb, 5 oz; 23.25 inches

(Their lengths are the same as they were last month.)  While the medical assistant was checking the boys in, I was filling out a form which included a spot for me to list any concerns I had.  On Colton's form, I checked NO.  For Sean, I checked YES and said I was concerned about his weight gain and his recent vomiting after meals.  As I wrote that, I looked up at Bubba and said, "You know, I think Sean might need to see a speech therapist.  He might have an oral aversion." 

So first the doctor checked out Colton.  Then the physical therapist checked him out (this is the PT who saw the boys in the NICU, not the one who the boys monthly).  Both were happy with how Colton is doing.  Colton is in the 25%tile for his adjusted age, which is about what he was when he was born.  They are waiting for him to have a growth spurt.  :)

Then they checked out Seanie.  They think he is doing well overall, but they we need to work on weight-bearing on his legs.  This is unusual because most NICU babies do not need to strengthen their legs - they are usually too strong.  We talked about his feeding issues - taking a very long time to feed, the vomiting, and his poor weight gain.  So, Sean now has a referral to speech therapy because the doctor thinks he is developing an oral aversion.  When she said this, I laughed.  I said, you know as I was filling out the questionaire, that is exactly what dawned on me.  She is also sending a referral to the nutritionist to work on his weight gain.  She said we might have to increase his calories, add tickener to his formula, change bottles, or try reflux meds.  Seanie had being staying at about the 3%tile for his adjusted age, but has fallen off tha chart a little. 

When we got home, Sean was hungry.  Bubba fed him as Colton and I ran to the hairdresser to get my eyebrows waxed.  Oh boy did he love being at the hairdresser.  At first he was a little quiet because he had just woken up.  But once he decided he liked it, he chatted and flirted with my hairdresser.  After a few minutes of flirting, she offered Colton her daughter as his girlfriend.  Little Jade is almost 3 months old.  And, she's a CUTIE!  :)

Tuesday, July 13, 2010

Where the Wild Things Are . . .

Last week, Bubba and I took the boys and our neice to the Oakland Zoo.  We had been planning on going to the San Francisco Zoo, but when we came out of the Caldecot Tunnel and saw the fog rolling into San Francisco, we detoured to Knowland Park.  The weather was perfect.  :)  Being out in the fresh air was really nice.  We saw the sun bear, several different types of monkeys and then we came upon the warthog.  I realized that the boys have something in common with the wart hog . . .

Who knew that warthogs were just like preemies?!?!  What does the warthog do to show that he is bothered by the noise?  Does he do what Sean would do?  Does he drop his heart rate?  Does he stop breathing?  Or maybe he increases his respiratory rate?  Does he hiccup?  Does he cover his face?  We didn't find out that day.  The warthog was sleeping in the distance.  Perhaps earlier visitors had stressed him out and he had shut out the stimuli by sleeping.  That's what Seanie does!  LOL!

Then we made our way to the lions.  At first the lions weren't out.  Then as we made our way around the other side of the lions, Sean wanted to eat.  So, I took him out of the stroller and fed him as we walked around.  The lioness came around was roaring as if she was annoyed - she would let out a small roar, wait about 30 seconds, and then let out a small roar again.  She did this over and over.  Little Sean thought this was hilarious!  Every time she would roar, he would laugh and smile.  When the lioness laid down and stopped roaring, Sean stopped feeding and looked around as if to say, "where did she go?" 

We also saw flamingos, meerkats, all types of birds (including the bird that had a sign that he might look like he's passed away, but he's really just old and tired), bison, elephants, giraffes, a baby eland, vultures, pythons, lizards, etc.  As we left, we stopped by the tiger.  Colton was impressed . . .  This was actually the only picture I got of either boy while at the zoo (that's cousin Amanda holding Colton).  They spent most of the time in the stroller.  One lady stopped and asked if she could see the boys.  She then asked how old they were.  I told her 7 months but that they came really early.  She squished up her face and loudly proclaimed, "Oh my God!  They are SO small!"  Then she turned to her friends and rattled off something in another language.  They probably thought I don't feed them!  I just smiled as I thought, "No lady!  They are freaking huge compaired to where they started!"  

After we left the zoo, we went to Walnut Creek.  We had dinner at Maria Maria.  We sat on the patio.  The food was great.  I wonder when I can convince Bubba that we need to go back there.  After dinner, we went to The Container Store.  Yes, an entire store dedicated to containers.  :)  And, then off to another favorite place of mine, Barnes and Noble.  I love books.  Amanda shares my love for books.  I bought her three books and a school planner.  I bought myself one book and a calander. 

This week the boys have their big NICU follow up appointment.  They will meet with several specialists during a 90 minute appointment (yes, that's 90 minutes for each boy!).  I think as soon as we're done with this appointment , I'll need a nap along with the boys. 

Little Seanie continues to work on tummy time . . . At least now, he can lift his head and keep his tongue in his mouth.  :)

Monday, July 5, 2010

Happy Birthday, America!

Happy 4th of July!  Bubba and I took the boys out to the levee where we could watch about 6 different fireworks shows from afar.  We didn't want to go to a big show with lots of people and the smoke and smells of the fireworks.  So, Bubba and I went to almost the exact spot we went last year.  Last year, we had been invited to a famiy event but didn't go.  We had just found out that I was pregnant, but didn't want to tell anyone so we were laying low.  I was feeling pretty good, but it was too early to tell if they pregnancy was an ectopic (I had an ectopic in September, 2008). 

As we waited for the sun to go down so the fireworks shows could start, I was able to get some pictures of the boys.

Can you believe that these little guys are now seven months old?  Yes, seven months.  Amazing.  Sean weighed less than 5 sticks of butter.  Colton was the weight of a full grown squirrel. 

So, as the fireworks went off, the boys drank their bottles.  Sean would stop to remind us that he has found his voice (as if we could forget) and he has a lot to say.  Such a sweet little voice he has.  It's not that super sweet baby voice you would expect; it's kind of gruff sounding.  Larry thinks he might sound like Froggy from Little Rascals.  LOL. 

Colton showed off his new skill tonight.  He can make raspberries.  And, boy does he think he's funny when he does it.   Of course, he wouldn't do anything for me when I had my phone out to snap pictures. 

If you look closely, you can see where Colton's hair sticks up.  It's because of his scar from his temporary shunt.

Seanie is still working on tummy time.  He sure doesn't like it, but he has gotten better at it.  One night, last week, I got this picture text to me while I was at work.  Oh, such a sweet sight!  You can tell by the look on his face (and his tongue hanging out), he is working very hard.  You gotta love this kid!  :)

Monday, June 21, 2010

Happy Fathers' Day & Happy Birthday, Daddy!

The 20th was Bubba's first Fathers Day and his birthday.  What did we do to celebrate?  ABSOLUTELY NOTHING!! :)  We hung around the house all day and ate leftovers from yesterday's BBQ.  (Sometimes a BBQ hotdog that is reheated by slicing it longways and frying it is the best.)  I asked Bubba several times if he wanted to do something special for his birthday and every time he said, "Nope.  Let's just hang out."  So, we watched the NASCAR race and took a nice afternoon nap with the boys in our bed.  Nothing like an afternoon nap with baby boys and Bubba.

Sean did have a bit of a rough day.  He hardly ate - he was busy trying to poop.  But, I think it also stemmed from being overstimulated on Saturday.  We had about 20 guests over for a BBQ.  The weather was BEAUTIFUL.  Bubba's friend Ramon took over grilling duties after Bubba tried to burn the hotdogs.  Thank goodness - I had forgotten that Bubba can grill a mean steak, but burns the dogs every - single - time.  But, as the party started to wind down, I had to take Sean to the bedroom and lie down with him.  It took him a few minutes, but he did fall asleep.  Of course, Colton was social and flirted with everyone. 

Off to bed, this is going to be a busy week - working two days, teeth cleanings, neice moving in, and renew CPR certificate (opps! Better find the old card!).

Wednesday, June 16, 2010

Welcome to Holland

I have heard parents of special needs kids talk about being in Holland.  And, while my guys aren't special needs in the classical sense . . . well, maybe they are??  Sean is delayed, but the expectation is that he will catch up - or he might not.  But, then again, both have a possibility of having CP.  Oh, wow. (I need a moment.  Okay, back on point.)  I didn't know what these parents were referring to when they spoke of Holland.  So, I googled it.  And, now, I know.  I, too, have been diverted to Holland . . .


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this . . .

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around . . . and you begin to notice that Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy . . . and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away . . . because the loss of that dream is a very very significant loss.

But . . . if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.

Tuesday, June 15, 2010

Busy, Busy Day

Today we trotted off the Kaiser for physical therapy asessments and pediatic check ups.  Oh, it was a busy afternoon.  First each boy got a visit with PT.  Let's see . . . anything new?  OH YES!  Sean has the sweetest little voice you have ever heard and a great little smile.  He kicks his legs to let you know he is excited.  But, he still refuses to participate in tummy time.  He is perfectly content sleeping on the floor.  Too bad we have figured out that sleeping is Sean's way of checking out.  Not okay, little Seanie.  You need to participate! :)  So, the PT and I talked about some ways to help Sean during tummy time.  Let's see how that goes.  How about Colton?  Well, that little guy is rolling over (yeah, it's an old trick for him!), chattering away, smiling, laughing and his new favorite, flirting!  The PT did notice that Colton's hamstrings and shoulders are a little tight so we will be starting stretching exercises.  Colton has already shown that he doesn't care for the hamstring stretches but he likes to stretch his arms (kind of like he is lifting his arms on a roller coaster - prepping the kid for Disneyland already!).   At the end of the appointment, Colton threw up all over himself and his carseat.

After the PT, we headed over to the pedi clinic.   The doctor was very happy with how the boys are doing.  We weighed and measured the boys . . .

Colton: 12 lb, 0.7 oz; 24.75 inches
Sean: 11 lb, 5.2 oz; 23.25 inches

The boys also got some vaccinations today.  They weren't happy about that.  Sean threw up all over himself and me.  Two barfers, one day.  Oh wait, I have to add in the barfing in the evening.  Yup, poor Colton isn't having a good night and barfed on me. 

Last week, while in Roseville, the boys, Bubba and I stopped by the NICU to see some of their nurses.  We missed Auntie Donna, but we got to see Auntie Carrie and girlfriend Jess.  Someone asked why Jess got to be the girlfriend.  Um, hello, SHE'S JESS!  And, Colton began flirting with her a long time ago!  It was nice to see them.  But, I have to admit, it was weird walking the halls of the NICU.  Very weird.  I am still not sure how I feel about it. 

On our way out of the NICU, we ran into Dr. A.  He was the first neonatologist we met when we arrived at Roseville and he was the doctor who attended the boys delivery.  I thanked him for taking care of my boys and told him we know that little Seanie was defintely a miracle baby as he really made it against all odds.  I think my words were, ". . . yes, we know Sean shouldn't have made it . . ."  Dr. A shook his head in agreement and I think I saw a tear in his eye. I turned my attention to Dr. A's daughter and told her that she should be proud of her dad because he helped save my boys.  It was so sweet, she barely said a word to me; she hugged her dad.  As we left the NICU, I cried. 

This weekend is going to be busy as well.  The boys are hosting a BBQ for close friends and family.  My only question is: which boy is going to man the grill??  LOL!

Saturday, June 12, 2010

A Link

This is a link to my friend's blog.  He boy, Jacob, has been missing for quite some time. 


Saturday, June 5, 2010

Happy Half Birthday Boys!

Well, my little guys are 6 months old now.  It's amazing how big they are and how far they've come.  Sometimes it seems like they were born yesterday.  Othertimes, it seems like the NICU experience was so far in the past. My life has changed so much in the last 6 months.  I have made new friends and I have fallen in love.  Oh, the sweet little voices these two guys have.  I could listen to them all day long.  Their sweet little smiles.  The twinkle in their eyes.  Oh, those deeply serious brown eyes allow Sean to pull you in.  You instantly fall in love with him.  And, then, there is the Colton and his blue eyes he got from Daddy.  Oh, how those blue eyes dance!

Tomorrow (or today, I guess) the boys are making their social debut.  My very dear friend is celebrating her oldest son turning 18 and graduating from high school  It's funny, our lives are so different - she has one kid graduating and one getting ready for her drivers' license.  I have two babies who are just now discovering their hands.  She has decided she wants to work day shift - yes, getting to work at 7am!  I am a diehard pm shift worker - nothing like showing up to work at 3pm!  But, I wouldn't trade her for anything in the world!  LOVE YOU, JEN!

Speaking of Jen, let's talk about another Jen.  She gets a pedicure just about every other week.  I used to think she was crazy to do this.  Now I am thinking that I should be doing this.  I need to take the time to pamper myself.  I used to think that getting my brows done was pampering enough.  Now I have decided that getting my brows done do not count as pampering in any way, shape or form!  So, I think I am going to start getting pedicures.  I still think Jen is crazy, but it's for completely valid reasons that have nothing to do with her pedicures!


Wednesday, May 19, 2010

ED and PT Visit Follow-ups

Colton went to see the neurosurgeon yesterday.  The doctor was very happy to see how he was doing.  He has no explanation as to why his soft spot is so full, but said sometimes it just happens (even in non-shunted kids).  So for now, we will watch it.  And, even with this little bump in the road, Colton's neurosurgery check up will be in another three months.  Before that visit, he will have a "fast MRI."  As the doctor explained it, a "fast MRI" is a quick MRI used to get some basic shots of the ventricles, it doesn't require him to lie perfectly still or be sedated and there is no exposure to radiation. 

A fellow NICU mom, whose baby is still in the NICU, asked about why Sean qualified for Early Intervention (EI).  Both boys were evaluated because of their prematurity.  Colton is actually right where he should be for his adjusted age.  Because if this, Colton qualifies for their prevention program.  This means they will do monthly check ups to make sure he remains on track.  But, poor little Seanie is behind where he should be based on his adjusted age.  What does that mean?  He isn't doing what other 2 month old babies do.  This means that Sean meets the requirement for EI services.  Seanie will get weekly visits from the developmental specialist who will work with him, making sure he continues to progress.  He won't necessarily catch up in a few weeks or months.  He may continue to be behind for a few years.  So, for him, it won't be important that he is meeting milestones based on his adjusted age.  It will be important that he is progressing towards meeting each milestone and that he does eventaully meet them.  Now, as I have said before, Sean is a little guy who likes to do things on this own terms. 

Sean did get his PT evaluation today at Kaiser.  The PT didn't tell me anything I didn't already know about little Seanie.  She said, yes, physically, he's behind.  She gave us some suggestions on how to work with him: more tummy time (LOL! He hates tummy time and protests by falling asleep!) and play with him while he is on his side (encourages him to bring his hands in front of his face).  So, poor little Seanie may protest but he has to do his PT activities. 

I also mentioned to the PT that the neurosurgeon had encouraged us to get Colton to sleep looking towards the ceiling to help get rid of his preemie head.  She looked at his head and pointed out that it's not just that, but he puts pressure on the side of his head opposite of this shunt and that his little head is lopsided!  OMG!  Now we need to make sure he sleeps with his head straight and play with him to encourage him to put some pressure on the shunt.  And, so far, it's going great!  He is lying in bed with wedges next to his head to keep him looking forward.  LOL!  He hates it!  He is in there with a look on his face that says, "You can make me lie like this, but I am NOT going to sleep!"  Great!  The kid is as stubborn as me!

After the PT visit, we stopped by and the boys got to meet one of my favorite midwives (or midwitch - as she calls herself).  I did find out that she is going to be a Nana this fall and one of the other midwives, who we also visited with, is going to be a Mama in the fall.  I warned her to double check to make sure there weren't two babies in there.  LOL.  We had a nice long visit and I thought, at the end, she was going to try to take one, if not both, of the boys with her.   Good thing I brought Bubba with me as my muscle.  :)

Off to enjoy one of those delicious lactation cookies and snuggle with the poor baby that is being tortured by his positioning wedges.  Bad mommy . . . I've already given in . . .