You Asked For It

I am quite the pushover. Following are a few choice pictures of Azure, just so you can put an image with the name.

This is Azure's foot in my hand. This was back when she still had the IV lines in her bellybutton. She is now IV free!

This is Azure sleeping peacefully. It is hard to tell. Here is the breakdown: She is laying on her back covered by a blanket. She is in bed wearing the CPAP device on her head. She is sucking on her pacifier which is being held in her mouth by the "frog" sandbag. Then the entire warming table is covered in Saran wrap to keep her warm. Beautiful, isn't she?

Finally, here we are doing kangaroo care. Notice the beautiful quilt she is wrapped in. You will see it again in a future post as soon as I send out a proper thank you note to the amazing and talented person who sent this to her.







Sorry no face shots. It just has to be this way. I thought I might just be paranoid until I found an acquaintance has already posted her name, our names and more than one of her pictures on her own website without asking us. Just not good blog etiquette in my opinion.

Anybody need any...

I have an unopened box of test sticks for the CBE Fertility Monitor.  They expire in August of this year and I will definitely not be using them by then.  If you are interested drop me a note and let me know where to send them and they are yours. First come, First served, yada, yada.

30 Weeks

We would have been 30 weeks gestation today.  This is a big milestone as this is the point I wanted to reach to feel comfortable giving birth to a premature baby.  I never had any indication that she would come early but I knew that 30 weeks has a very good survival rate and things tend to go well from here. 

Ha!  Joke's on me I guess. 

Azure is doing great!  She is up to 7ml/hour of milk and she is getting all of her nutrition from the milk now.  They will probably take out the IV by the end of the week as she won't need it anymore.  She is stopping the steroids for her lungs and they will continue to give her the caffeine only they will switch to oral instead of IV for that. 

She is up to 2 pounds 5.7 ounces.  This seems amazing!  She has also started filling her diaper on a more regular basis which is a good thing.

We are practicing on the nasal cannula twice a day for two hours at a time.  She likes this MUCH better than the CPAP. 

Friday marks her 6 week birthday.  Hard to believe.  We are looking forward to the baby shower on Saturday so we can get her room all set up at home.  We still expect her to come home sometime in May.  She needs to get this breathing thing down and gain some more weight first.  We are holding her, reading to her, bathing her and I will be learning infant massage soon which they say can shorten our time in the NICU.  Hey, who doesn't love a massage, right?

She sneezes and she is REALLY drooly and she is starting to fuss more when she is unhappy.  In other words, she is acting like a baby!  We couldn't be happier. 

Note to Self

When dropping off the disposable cameras (kept in Azure's bed) on Wednesday do not sign up for the "Next Day" developing since they send it out but have two day delivery service and they don't actually send them out until the next day and then they don't receive deliveries on Saturdays so your "Next Day" pictures will be in on Sunday.

 

ASSHOLES!

Things that make you go Hmm:

I am supposed to avoid caffeine while TTC, during pregnancy and now that I am pumping milk for my baby.  Then, they turn right around and shoot her up with the stuff to remind her to breathe.  Couldn't they just let that come through me? They can inject it in me if they want to... PLEASE!?!?!?!?

 

One of the good things about having a baby in the NICU is that you get to sleep through the night while other parents of newborns are up with their babies.  Unfortunately, our dog Maggie does not understand this theory.  She has taken to waking me up at 3:30am and wanting to go outside.  She doesn't need to go out, she has been out before we go to bed and will go out when we get up at 5:30am.  She gets up out of her bed, stretches loudly then shakes which clangs her tags.  She then proceeds to walk laps around the bed stopping by my head at each pass to bonk me with her nose or whine or paw at the covers trying to get my attention.  This morning she was nicer to me, instead of 3:30 she waited until 4:15. We think she is just feeling the stress we have been under and maybe wants some extra attention?  I am tired.  Again, with the caffeine question!

 

Babies are supposed to be calmed by touch.  Germs reside on the human skin, especially on the hands so they require frequent washing especially at the hospital with their SOAP FROM HELL.  My hands are a mess.  The skin is peeling back from the tips of all my fingers.  I have cracks in the skin that bleed.  I have bags of frozen milk in my freezer with blood streaks on them from my fingers touching them. Gross!  My fingers are now sticking to the Velcro holders which fasten down Azure's CPAP tubes.  My fingers stick to the lovely flannel blankets, her clothes, the gauze used to wipe her mouth.  I want to caress her cheek but I am sure it would feel like sand paper.  Oddly enough, during her three day stay at the other hospital my hands heeled nicely.  I used LOADS of their moisturizing hand cleaner as well as normal lotion.  Now that we are back at our own fabulous hospital with the SOAP FROM HELL my hands are a mess again.  If only I could just stuff them in a big vat of Vaseline to soak for a while.  I may have to try Miss W's advice of swapping back and forth: one week washing, one week Purell.  I'll ask about that tonight.

 

Finally, today is T's birthday.  He marveled at me the other day the way I just fell right into the mothering role.  Changing diapers, suctioning the spit from her mouth, soothing her with the "womb hands" and pumping non-stop. I was thinking, "Of course! This is what we were working for!".  I have always been good with babies, they have just always belonged to other people before. 

He asked me if he was my "rock",  meaning, was he the one I am depending on so as not to completely lose my mind in all of this.  I told him no, and I am not sure he understood.  He is there for me, it is not that I could not depend on him to get me through this.  My point is, he is going through this too.  When two people go through something together they need to rely on each other as well as others.  It cannot be completely one sided. I hope I didn't hurt his feelings when I said that, I just want him to know that it is Ok for him to need support too.  He has been tentative in the holding but fabulous so far overall.  He is getting more confident in the NICU and asking questions instead of having me ask for him.  I have a WONDERFUL picture of the first time he held Azure with her looking up at him.  This is going to be a most amazing year. I am taking him out for dinner to celebrate.

Not Enough

You can find more information on Kangaroo Care here.  This morning Azure was nestled in my cleavage (I have plenty now, especially right before I pump) with her head on my chest and we were all wrapped up in a blanket my best friend made for her.  Absolutely lovely.  They said if I pump right beforehand then next time we will let her "window shop" at the breast.  She isn't ready to nurse yet (I don't think her mouth is big enough for my huge nips) but this will give her the experience of being there and provide stimulation for my milk supply.  It is a Win-Win!

 

That being said.  I am feeling a bit down.  I am feeling quite inadequate as a mother, as a wife, as an employee, as a friend...  I am sure this all comes with the territory but it sucks just the same.  It is easy to say that Azure is my priority right now but that doesn't get the laundry done and the fact that after my shower last night T told me I had been smelling a bit "sour" I see that not even my personal hygiene is up to par (I assume it was the milk that dribbled into my shirt, but still). *sigh*

 

Daycare.  My initial plan when Azure was still assumed to be a healthy full-term baby was to take 8 weeks off and then take her to a daycare center near my office.  She is neither healthy nor full-term and at great risk for upper respiratory illnesses considering her chronic lungs and the hole in her heart.  Daycare is NOT the best place for her.  So what do we do?  In-home daycare scares me to death considering all the injuries, deaths and pedofiles in the news in the last couple of years directly associated with this type of setup.  Having someone into my home seems a bit better but I would need time to get to know this person and feel comfortable leaving the person in my home and she (see how I automatically ruled out men?) would need to feel comfortable taking care of Azure with any special monitors or medications she might need.  Very scary.  I am leaning towards two options.  One, we figure out some way for me to stay at home with her.  Two, I convince my boss to give me the private office instead of the cubicle, and I bring her to work with me.  Ha!  This of course assumes that she will not consume every single minute of my day.  I could wear her in a sling or put her in the pack-n-play and handle almost all of my work that way but what if she is cranky and screams her head off?  How can I answer phone calls with a crying child around my neck?  See how option #1 is looking pretty good?  If only we were wealthy.  We are comfortable, don't get me wrong, but we have a lot of debt and we would be cutting our income in half with me not working.  *Sigh* again. Where there is a will there is a way, right? 

Here comes the bad part.  I am going to hate leaving my job.  I like my job.  I enjoy the people a lot.  There isn't a day that goes by that I don't laugh out loud.  We get along very well, joke around.  My boss actually calls me over to see the porn on his computer.  We kick up our feet and enjoy an afternoon beer once in a while.  Where else am I ever going to find an environment like this again?  I have already envisioned myself explaining my resignation to my boss and I can't even think about it without crying. 

My daughter will provide joy too, I know she will.  I am just sad to think that this part of my life, a part that I actually enjoyed, might be over.

 

There is not enough time, not enough money, not enough of me to go around.

 

Call me Kanga

We started Kangaroo Care this morning.

 

We are lovin' it.

Here I am

Last night instead of my usual trip home after work for dinner and to pump before heading to the hospital I went to my knitting group.  I haven't been there since the first week of February.  They have all been concerned about Azure though I have kept them up to date on things.  I brought a small flip book of pictures showing her first month out in the world.  They were all happy to see me and are all working on projects for Azure as her "Knitting Granny's".  I was glad to see them again and they were very surprised and happy to see me too.

Then I went home.

I never went to the hospital last night.  I am still trying to figure out how I feel about that.  I was there in the morning before work.  My mother was there in the afternoon and T went for a visit when he got out of work.  However, for the last month I have been there twice a day every day with the exception of a couple weekend days when I spent a longer period of time there in the middle of the day instead of split shift of morning and evening. 

Logically I know that I did not choose those people over my daughter but it just doesn't feel that way to my heart.  I can hear my own advice in my mind saying that taking care of myself will make me a better mother.  I am just not feeling it right now.  Blah! It is not sitting well with me.

I decided Sunday that "Bloody Mucus and the Cramps" would be a great name for a band if I had one since that is how I spent my morning curled up on the couch..  Menstrual-like cramps complete with lower back pain and bright red bloody mucus in the undies.  I expected things to be ugly down there for a while after giving birth but things had tapered off to the post menstrual brown blood spotting for almost a week before I had a two-day stomach bug.  The pressure in my gut seemed to kick-start the ole ute again and this is where it has lead me.  Bright red blood and really goopy mucus.  Blehck. I am going back to the doctor next week to be fitted for that diaphragm and am hoping things have stopped by then.  Is 6 weeks too long for this crap?  I am sure it doesn't help that I am pumping which causes uterine contractions.  What is a girl to do?

 

In better news...

Azure is off of the ventilator!  She started the CPAP on Sunday night and has handled it wonderfully.  I don't think she can see around the connections over her nose and even the size small hat (which has all the tubes velcroed to it) is too big for her so it is constantly sliding to one side or the other, but she is breathing on her own! 

They also inserted a tube through her mouth which bypasses the stomach and goes right to the intestines.  Her stomach wasn't digesting food quickly enough for them so they are going straight to the bowels and see how that goes for a while.  Eventually she will work her way back to a normal stomach tube.  She is getting 1cc of breastmilk every hour and we are getting some pretty interesting diapers so things are going well there even if the process is slow.

 

Also...

The Sopranos are back!!!!!!  Sunday night at 9pm finds me glued to the couch raising a glass of red wine to the TV and saying "Salude"!  The fact that this week's episode found Tony in the ICU hooked up to a ventilator while the family sat helpless talking to him not knowing whether he understood what they were saying hit a bit close to home.  Art immitates life, right?  Even so, I am looking forward to next week's episode and shall savor this last season as much as possible.

 

Finally...

Lala you Rock!  Congratulations my friend.

 

PDA Closed...Again

Well, the PDA has been closed again.  This time with a staple.  It should stay closed this time.  She just had the surgery today after several delays but is now resting comfortably (drugged) and looks good.  We are looking forward to seeing the changes this brings about.  They should be sizeable.

She handled the move to the new hospital just fine.  I, on the other hand, did not.  I cried and cried.  T was not overjoyed at my reaction.  I didn't care.  I just cried anyway.  I also had a martini with dinner.  So there. 

She should be going "home" to the original hospital either tomorrow or Friday.  Fingers crossed it is tomorrow.  The Big Hospital Up the Hill is HUGE and LOUD and I want her out of here ASAP!!!!  The care is excellent and the technology is impressive but it is not "our NICU" and I want her back there where there are only 6 babies instead of 91 and there is one nurse to every one or two babies instead of one to four.  *sigh*

Things are good and should improve from here. :0)

PDA Revisited

Yeah, so that PDA that closed up on its own, it has re-opened. 

 

Tomorrow morning Azure will be transported to The Big Hospital Up the Hill where she will have surgery to close it.  She will recover there and then be moved back to the original hospital.  This could possibly all take place in one day, or depending on the timing of the surgery, might be a couple days.  We just don't know yet.

 

This was completely unexpected but she is bigger and stronger now than she was before so I feel a bit more comfortable about it now.

 

I am still scared (who wouldn't be), but I think it will be Ok.  This should help her breathing, they are hoping to wean her off the vent in the next week or so.

 

Ugh.

Three Weeks

Azure is three weeks old today and she has had quite a week!  Three major accomplishments in the past few days.

 

#1) Last night she weighed in at a whopping 2 lb. 2.6 oz.! 

 

#2) We have started tube feeding the breast milk.  They actually call this stage "gut priming" but T absolutely hates that term so we are calling it "feeding" instead.  She started out getting .5 cc every twelve hours and we have now increased that to .5 cc every three hours.  This is a long slow process but it has begun so we are that much farther ahead than we were last week.

 

#3) Saving the best for last...I got to hold her last night.  We "snuck in a hold" while they had her out of the isolette to weigh her.  The nurses decided that it was about time.  The contact is good for her (and us) as long as we can keep her temperature up and the nurse held the ventilator tubes for us so that was comfortable for her.  I leaned down to kiss her forehead and almost in response she reached her hand up and touched my face. You could not have scripted it better. T held her hand for a minute and took our picture but we couldn't have her out for too long or her temperature would drop too low.  The nurse said we could try again soon and they will wrap her all up and let me sit and rock her for a while.

 

YAY!

Random Thoughts

#1 - There are not enough hours in the day. Get up at 5:15am, pump, eat breakfast, wash dishes, get dressed, go to hospital, pump, go to work at 10:00am, pump/eat, work until 3:00pm, pump, do something constructive at home or run errands, pump, eat dinner, pump, head to the hospital, go home around 10:00pm, pump, go to bed.  Somehow I am supposed to tweak this schedule so that I can extend my working hours until 5:00pm and then go to the gym before going to the hospital in the evenings.  How?  I ask you, how?

 

#2 - My heart still aches for the mother of the 23-weeker who didn't make it.  It turns out that she had an emergency C-section, was let out of the hospital to go to the funeral and wound up right back in the hospital with a massive infection.  The nurse said her room smelled of the infection and the woman was embarrassed by it.  She has three other kids at home and I assume will not be able to rest properly in order to recover from this anytime soon.  I stare at that empty bed every day and it hurts.

 

#3 - There was a new baby admitted yesterday.  He is one bed over from Azure with an empty bed in between.  No prenatal care, they don't even know the gestational age.  He is very tiny and in "critical but stable" condition.  He is using the oscillating ventilator that the 23-weeker used and that Azure thankfully did not need after all.  I told Azure to be a good role model for him, she could be a good mentor.  I hope he follows her lead.

 

#4 - My hands are being eaten alive by the soap in the NICU.  I want to put a comforting hand on my daughter but I fear it would not be comforting but rather abrasive to her sensitive skin. For lack of a more eloquent term, this sucks.

 

#5 - Birth Control...go ahead and laugh, I'll wait...

Yeah, so T and I have decided that while we still want to have another child eventually it would probably be best for everyone involved if we did not try the whole insemination/pregnancy/trauma thing again.  We do not want to go through a pregnancy thinking that each and every day could be the day that the shit hits the fan.  We do not want to put ourselves or Azure through the stress and anxiety that would be involved.  We are thinking adoption.  This however brings up the ironic question of avoiding a now unwanted pregnancy.  (Please read this carefully, the baby would be wanted but not the pregnancy.)  Do to my utter hatred of all things hormonally BC related I am thinking diaphragm.  T wants to back this up with condoms.  The sponge is not a bad way to go but is expensive and requires water, etc. and I just think the diaphragm would be the better way to go.  Thoughts?

 

#6 - My boobs hurt. Pumping has gotten really old really fast, but...the "gut priming" has commenced and is going well so far.  She started out getting half a cc (cubic centimeter) every twelve hours and this has been increased to every six hours.  We are slowly working our way toward nursing.  There will be steps forward and back and I do not expect it to be a steady progression but we are moving in the right direction and that makes me happy.

 

#7 - Just because we can, my baby shower will still take place on April 1st.  What better way to celebrate the premature birth of an inseminated baby than on April Fool's Day?  I think it will be fun. 

How's Things?

Pretty good actually.

 

Azure no longer has the IVs in her belly so she was able to wear a shirt for the first time on Friday.  She has been sleeping peacefully most of the time for the past three days which is great.  She is maintaining her blood pressure and blood sugar and no longer needs the humidity in the isolette.  She was back up to her birth weight yesterday which is a big accomplishment.  She had a dirty diaper yesterday which they have been waiting for.  They are hoping that her bowels will show signs of maturing so they might start tube feeding soon.  If she can get milk it should really help her grow and mature and give her some antibodies to ward off evil spirits...and infections.  The steroids they are giving her for her lungs are working really well.  She was down to 29% oxygen last night which is amazing.  They turn it up when they are going to mess with her since she gets over stimulated and her oxygen saturation drops but when she is just resting on her own they can turn it down and she does just fine.  Poor thing keeps getting the hiccups though, those bother her.

T and I are exhausted above all else.  We are almost finished painting the office at home so we can move the furniture into the correct rooms and I can start assembling a nursery in the former guest room.  No rush I understand but I just want to be able to go into that room and know that it is Azure's room and that she will eventually reside there.  I want to sit in my recliner in there and pump and think that someday I will be able to nurse her there in that very spot. It is all about hope for the future.   

We went out for dinner last night since we both needed a change of scenery and a change of pace.  It was fabulous Italian food and I had 1-1/2 glasses of red wine.  It was the first alcohol that has crossed my lips since September.  The whole dinner experience was amazing.  Just being out in public and holding hands and feeling like there is some normalcy in the world did a lot to restore my sense of balance.

Now however, there are dishes to be done, painting to finish and that dog poop out back is not going to pick itself up, oh yeah, and I would like to get to the hospital at some point today.

Thank you all for your continued good wishes.  They are working!!!

 

Nothing New

Azure is doing well.  She has gotten over her breathing issues from last weekend.  The steroids they are giving her for her lungs seems to be working.  Her skin color has really come around.  She is off phototherapy, hasn't had insulin in days and seems to be holding her blood pressure steady so they stopped the Dopamine.  She is on two antibiotics to ward off whatever is making her white blood cell count so high.  She is on an oral rinse (they swab her mouth with it) to prevent thrush while she is on oxygen support.  They are adjusting her nutrition whenever she needs more/less sodium or sugar.  She is just resting comfortably and growing at this point which is exactly what we want for her.

I returned to work yesterday (part-time) and things seemed to go pretty well.  I will need to settle into a routine but I think once I have a schedule in place things will get easier and feel more comfortable.

More news when there is something to report.  At the moment we are maintaining which is just fine.