Gold at the end ...

... of the Rainbow



Our adventure began 77 days ago, on Christmas Eve. Not knowing when it would end was the hardest part. Not that there is "and ending" but for us being together at home was our goal. All 4 girls in one room, arguing, yelling, crying, interacting. I used a lot of humor to disguise and help us get through some tough moments, worries, and aggravations. At times the little things seemed big, and the big things seemed insurmountable. What I can say is that we have a great community of family and friends who help us when we are down and pick us up when we fall. I THANK YOU ALL FOR THAT. Just being able to write this now is proof. As Becky takes Amanda to school, Jeanette and Amanda are sleeping and Alexandra is trying to sleep (she grunts a lot).

Our departure had a lot of meaning as we were able to get a high school friend of Jeanette's as Alexandra's last nurse. We also were able to see our neighbor in the NICU, her son leave on the same day. Both of us arrived at the NICU in December and we were all leaving together. But our hearts were also sad as another baby, born a day later than Alexandra but on her 24th week of labor was still at the hospital. I could see the happiness in the mother's eye's and sadness watching us leave but knowing her daughter couldn't and unsure when.

Life is fragile. Don't forget that.
Small life is precious. Don't forget that.
Hard times make us stronger but seem to take forever to pass.

Tears remind us of the struggles that make the gold at the end of the rainbow feasible. I never believed in that saying until now. The gold is what we make it.
Our gold, my gold was seeing Liana with her little sister in her arms. It was precious. I thank all of you reading this for your prayers and support.










Thanks for reading and sharing in our journey!

Our Final Exam

Tuesday night we headed to the hospital after putting the girls down at their Abuelo's. Liana didn't want us to leave and she was hard to put to sleep. Unsure if it was the chocolate with 80% cocoa that Abuelo gave her or the chocolate with 80% cocoa that Abuelo gave her. As the kid loves dark chocolate more so than the crappy Hershey's style. The only thing that saved us was she ran out of gas around 9pm and fell unconscious. But we did hear she was up at 4AM roaming the house (probably looking for more chocolate).

Our final exam prior to release is to spend the night with Alexandra in a room near the NICU and perform all of the duties as if we were at home. Not too difficult one may think. Neither of us were worried as we have done most of everything needed except give her medicine at specific intervals. We had a class earlier on Tuesday, when I had to leave work at 2 and race to the hospital to meet with the pharmacist, who explained all 5 medicines, when and how to give them. Which after a couple becomes overwhelming. 3 are given in the morning once a day. The other two are more complicated. One 30 minutes prior to a feeding and the other after a feeding. So we have a plan to create a matrix of when and how for each. All seems well.

Now we arrived with an hour before the midnight feeding. Our room was small, a typical hospital room just on the outer door of the NICU ward. All started well during the first feeding, until I had to add our portable monitor to Alexandra (on top of the hospital monitoring). Doing so allows us to learn and see if all is well. All you have to do is place the velcro strap under her arms and put the white lead under the right arm pit, equal to a nipple. Then the black lead under the left arm pit with the same distances. Ali had other intentions. She was grunting and getting pissed since she was naked, cold and hungry. It was like trying to put a rubber on a worm. OK, maybe I don't know what that's like but the kid was squirming, not allowing me to get the velcro strap in place. So we did our best and kick started the machine.

BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEE"HOLY SHIT TURN THAT THING OFF!"EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEE"WHAT?!"EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
OK, remember off = EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEPress button 1, hold EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
hold button one, press button 2 BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
OK, SHIT,
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
BEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEP
PRESS and hold button one, then press button 2.
AHHHH
Silence.

Well almost, Alexandra was crying, floping like a fish out of water. The hospital monitor is ringing and flashing like popcorn on the screen. Hmmm, something wasn't right. Maybe the leads are not on properly. Yeah. Put that test on hold for now, until the headache and ear pain subside.

Alexandra ate like a champ then. 10 minutes later she finished the bottle and not a drop spilled. Must have been the adrenaline rush from the comotion. Just when 1 o'clock rolled around things started to get pretty hairy. Looking back I felt like a science experiment more so than Alexandra. Almost like the movie SAW, where someone had a plan to fuck with us as they could observe everything and change the conditions as needed:

Doctor 1: "Ahh, they are comfortable, put the air down to 70."
Doctor 2: "Ohh, good one. Wait until they both try to sleep on that little tiny bed together."
Nurse 1: "Sleep, you think those idiots are going to sleep. Huh, you two must not have kids."
Doctor 3: "Dis iz a test to zee if dey are able tu cope wid da stressss."
Nurse 1: "Lets fuck with the TV volume. Up, down, mute HIGH, more HIGH."
Doctor 1: "Yeah, look at the sleeping baby stir. Oh good that started an argument as usual."
Doctor 3: "Zumthin about TeeVee and Americuns. Got to hav it on. HAHAHAHAHAH. Little do dey know, it sucks and da volume neva stayz level."
Nurse 2: "Dat dusnt matta. They fools will keep da dam boob toob on all night anyhowz."
ALL: "AHHHH HAA HAAAAA"

And so we were tested as the temperature kept going down all night in the room. I love it cold. 65 degrees, no problem. Well shit the temp was so cold my hands were cold. Every time we touch Alexandra, she gave us a look like "Dam your hands are cold"

Doctor 1: "Now they will spend an hour of their sleep time looking for the thermostat. Goood. Gooood, no not there, or there, or their. Hey, look the bastard is checking behind the toilet. "
ALL: "AHHH HA HA HAAAAA. That's a new one!"
Doctor 3: "Zeems dey alwayz take more time trying to ged comfour tab bull."
Nurse 2: "No shit, dey think dis is a Holidayz inn. See dey evun axed us fu ma towelz."
ALL: "AH HA HAAA HAAA, like they can take a shower!"


One the second feeding, we were both tired, but awake. No thermostat could be found. None of the nurses knew a thing on how to control the temperature.

Nurse 2: "Lookz, dey tawking to da fifth girl dis howa. Damm if wonna doz bitches sayz anything Im ma gunna twist der tits off."
Nurse 1: "Don't worry, we removed the thermostat. It has one temperature. On, full fucking cold"
ALL: "AH HA HAAAAAA! Its like the desert. No one expects snow in the desert. HA HA HAHAHAHA"

The 3 am feeding was a bit harder. Jeanette was exhausted, cold and unable to pump milk to her satisfaction. So I took the feeding and I was able to reposition the leads for our monitor. Then came the fun part. I turned on the machine with a wince ....

nothing
not
a
sound

Hmm, was it on? YUP, working well.
That was a relief. Even Alexandra was not too upset with process. Not until I had to give her the medicine. Opened a check, squirted the liquid in.

"WAAA" The sound of why the hell did you surprise me with that shit."

Doctor 2: "Hmm, medicine and portable monitor both on, gotta mark those boxes off."
Nurse 2: "Damz dem"

We had to double wrap Alexandra and then cover her with two more blankets. Her temperature was going down each feeding. I think I got about an hour or less of sleep, sometime during the 3 to 4 am time. Then the 6 am feeding came. More medicines. Three at once.

Now, medicine A and B can go in with a squirt of milk.
No. Is that medicine C and A with milk and B before.
No. Crap, heart beat, breath in ... out. All functions getting harder. Cloudy.
Now back to the medicine puzzle.
Why couldn't this shit be like Tetris. I could play that all night, all day without error.
OK, medicine A and B in milk, then medicine C afterwards.
Ok, why did A+B turn the milk black.


Doctor 2: "Look, medicine time. Ahh. This is when they look puzzled and have issues. No sleep, but need to think."
Nurse 2: "Yep fool, da milk iza black az night. Drink dat bitch."
Doctor 1: "Maybe the child will spit it up ..."
Nurse 1: "Look at that, he only put a little milk in it. And she's drinking it before she can taste the vile substance."
Nurse 2: "Na UHH, da bitch did dunt. NAH UH, no wayz. Crap!"
Doctor 3: "Yezzz, marks thatdwon az well. All medz taken."
ALL: "Crap .... Heh, turn the temperature down."
Doctor 1: "Can't its already at 58"

So I shuddered under my poncho liner. The one thing I stole from the Marine Corps when I left. It is used to go under a poncho for cold weather rain, but we improvise and use it in the sleeping bags. In the desert the nights are usually in the 30's or lower, so having a layer take up space helps. And it's thermal, strong, but light. Very durable. Washed it more than anything I have ever owned and it's still in perfect condition. I layed on my 12 inches of space and Jeanette had the rest, at least 18 inches to move. At the 7am time, we pushed Ali on the new nurse, to get her the hell out. I would hate to see her get sick from that cold place. Even the nurses told us that it was the coldest ever.

Nurse 1: "Hey, look, he is putting a card in the suggestion box."
Doctor 1: "Hurry zoom in, see what it says."
Nurse 2: "Hmmmm .... Datz funny. Heza righten likz we redz da damm cardz."
Doctor 2: "Sooo, what does it say?"
Nurse 2: "Itza toooo fuckin cold. Putz in a therma, thermza, therda. A dam controlz."
ALL: "Ah HA HAHHAHAHAHAH."
Doctor 3: "Hmm. Deyz dunn all the things needed. Looks like a pasz."
Nurse 2: "Bitches."
Nurse 1: "Lets go eat breakfast and go home."
Doctor 1: "Yeah, we better get home and rest, we have another couple, but first Time parents."
Doctor 3: "Ahh, fresh meat ... mwa hahahahaha"
Nurse 2: "Heyz, Ima gunna putz dat fake temp cuntrol inz latta."
ALL: "AHAHAHAHAHA...yeah that will make things fun..."

Then on my way out to the car. I had a funny feeling. One where you think "Did I, or didn't I". Dam, did I put my name on that test?

Well we must have. Alexandra was released as of 5pm but we had to fly like Superman with two kids before 6 or then after 8pm. So I opted my own rules. We will come and get her on Thursday morning. When we could get a good, or even some sleep.

Once in a Blue Moon

Today is the day, and yes tonight it will be a full moon (according to scheduled cycles). Alexandra's due date was March 11, and that seems to be the day she will be coming home. Jeanette and I will be at the hospital this afternoon for class on her prescriptions. Then we spend the night at the hospital in a transition room (it is a padded room with straight jackets). Then if all goes well, the earth and moon align she will be on her first car trip heading home in the morning. The girls will be sleeping at the Abuelos. Amanda will be eating Bonn-Bonn's with their shoes on the bed. Liana will be causing havoc with free reigns on the house and snack closet (never, I repeat NEVER put your goodies in a closet at waist level! She raids the closet at a whim and runs around trying to stuff the crap in her mouth if she is caught).
The Ides of March is approaching this Sunday. It use to mean for me: that's the day Julius Caesar was assassinated, but now it's just Jeanette's birthday. I foresee a day at home, basking in the sun, hearing feint noises of children playing outside ... since I will be on the sofa with half a bottle of scotch consumed trying to dull the noises of the kids and the monitor alarm going off ... AHHHHHHHHHHHHHHHHHHHHHHHHHHH.

It's only an hour

I want to meet the asshole that invented this "Spring forward, Fall back" crap. I know it wasn't Einstein. It doesn't take a rocket scientist to realize how crappy this concept is and how much it causes havoc more so when you have toddlers on a schedule. When I was younger and/or without kids the hour was no more than something I had to do without which was either less sleep or less drinking time. Now we have to within a day get the girls to bed earlier, yet NOT have them wake us up earlier. Then move every one's eating schedule as well as bowel movements. In my world the ass comes before the mouth, so we have to get the bottom in sync with the top.

Alexandra was the first to feel the wrath of the time change demons as she was slowly (in 6 hours) pushed ahead to a new feeding and living time frame. I raced to the hospital just after Jeanette and Amanda went at the 6pm feeding, which didn't end until 7pm. When I arrived she was sleeping soundly. I had to wake her up with a thermometer in her arm pit and then change her diaper. This video shows you how good she was sleeping:



During the whole time she kept giving me this look like: "Oh crap not again. I was just cozy sleeping and you are going to start making me do something."

Every time I poked, moved, or altered her body she started to make the grumpy noise. Almost a growl-like sound that gurgles when a large dog growls at another when they are sniffing around their food bowl. When I started to feed her she didn't appear to enthusiastic. So after half of her bottle was finished (25ml of the 50ml) she had the look and sound that she wanted no more. And that was the case. I had to burp her for a couple minutes after every swallow or so of milk. It was as if I topped off a gas tank and I was trying to get in another gallon despite the tank not letting me fill more than a drop at a time. She was done when the bottle was near gone. She would lay on my back and held to me tightly as if she just finished swimming for hours and she was exhausted.

Then came the eye stare. Alexandra has a process when I let her sleep on my shoulder that she wants to see who is holding her. So she tries to keep her head in the air and moves it to see me. Kinda like a turtle coming out of the shell. She will do so until either A: she moves so much she will fall off the shoulder or B: I take her off the shoulder so she can look me in the eyes. Once I do so she will then stare at me without blinking for minutes.

"Ahh, so your the asshole that keeps pouring milk into my tummy when I had enough huh."

Ok, maybe those aren't her thoughts but I can see something brewing when she does the gaze. At the end of Sunday evening she weighs 5 pounds, 4 ounces.

Interrogating Alexandra

It started like every other evening in the NICU. But this day was different. Something happened and Mommy was determined to find out who and why. Some times our kids do things we can't control. But we want to know if they did it or have knowledge of it.

She now weighs 5lbs 3 ounces.

Taming of the Shrew

The Shrew refers to all of my girls as each of them have their own "special" issues that we as parents have to either alter or deal with.

Lets start with Liana. She has the attentions span of a gnat while eating. If she is starving, she will sit down before the plate hits the table and eat like a horse with a food bag. Non-stop eating, with hands, fork, spoon, whatever she can do to get the food down. If she is not starving, having her sit for 30 minutes is a pains-taking chore that occurs with most 2 year old boys. But she tends to distract when she leaves, by dancing, taking her sister's toys, making a mess, asking for things, etc. NO MORE I said!

"If you leave the table without permission, your meal time is over. I put your plate in the kitchen and you get NO FOOD for the rest of the evening. NO! Not even crackers. Just agua." She just gave me a grin and moved on. Her usual routine is to come back after a few minutes then graze and repeat. So she tried and was surprised when her plate was gone. So I saw her take food from Amanda's plate when she wasn't looking. I had to shoo her away like a stray dog at a picnic. The hard part now is not giving in, not changing the rule.

Amanda on the other hand has an eating disorder called "Me no likey". But that's not the issue I need to tame. This Shrew has a whining issue. Every word toward the end of the day comes out whining. No matter if it is a question, statement, or request. She whines. More so than a mother of a Jewish American Princess planning a wedding. So I ignore her words if they are whining in tone. I pretend not to hear them so she has to ask more than twice. Then I say "If you talk to me without whining, I can hear you." So far no progress is made, and when the tears start to flow I tell her that all negotiations have ended. I will not give into crying as a negotiation tactic (taken from my hard-corp never negotiate with terrorists or children crying stance).

On the Alexandra front she now starts to cry just before her feedings are due. On Tuesday I heard her start to cry just before 9pm, while we were washing before entering the NICU. Nothing would satisfy her other than a nipple in the mouth (I may have to start crying at home and see if I get the same treatment). Yesterday during my visit I talked to the head nurse who said:

"Your daughter's cry is bigger than her body. She's demanding her bottle sooner and she wants more attention. Time for her to go home."

And that's usually the case. As the baby's mature, they demand more attention. Which means they are on a time table closer to what a regular baby is. That is when they send them home. So yes we have been processing her to leave. Performing each step on the long check list. But the doctors want to make sure she has the best medication for her reflux while she is being monitored. Which I agree with. Although more than 2 months of hospital visiting gets more than tiring. Taking trips from house to doctor, to house, to doctor all in a day is even harder. Especially if you are in traffic with a crying infant in the back.

The Most Annoying Sound

About 10 years ago the most annoying noise I thought at the time was Matthew's velociraptor squelch that came from his mouth during a dinner at Friday's. It was so loud, ear piercing, wretched, long lasting witch-like scream when he didn't get what he demanded. The Matthew I am referring to is about 12 now and you never would have guessed he made that noise.

Now one of the most annoying noises besides a dozen Cubans in the room talking like they are on the phone trying to get their point across with hands flailing, sounds escalating, sentences roaring like belt fed machine guns, is the sound of the Apnea monitor alarm. We received training on the machine that will be attached to Alexandra most of the time when she is released. Like the picture on the left the sensors are attached below the arm with a Velcro strap that wraps around the chest. The strap is soft and comfortable and the leads are pretty small. The machine however is very loud. So loud you can land an airplane by just the volume level while flying at 15,000 feet. So loud you don't need to perform CPR on her if she does stop breathing. So loud I would rather run into Lake Michigan on a winter windy day naked than hear this noise while sleeping. I will gladly record the noise and show you what Amanda and Liana think of the noise. Maybe, just maybe we will use it to deter telemarketers ...

The actual monitor is pretty small, no larger than a dsl modem. The lights are simple and the funtionality isn't complicated. The data gets downloaded of the system hard drive to a computer and then sent to the cardiologist. It however needs to be on Alexandra most of the time, while in transit, anywhere anytime she is not being watched like a hawk. So we may just pay Liana in chocolate to watch her breath instead of the monitor. Not sure what gutteral noise that will emit from her mouth as a warning but I doubt it will get as loud as this machine.

The End is Near ...

This weekend we started prepping her for extraction. Alexandra failed her first car seat test on Friday. She had to sit for an hour without any breathing issues. She had the Liana "I want movie" syndrome. That is whenever we get in a car seat/van Liana expects a movie to play. Which we always say "NO! That feature is reserved for flights over an hour in length." Didn't you hate that excuse on planes? The second test came on Sunday morning around 5 am, when she was too tired to worry about the car seat, movie and popcorn. Alexandra actually did pass without any issues. The alternative to not passing is purchasing a car seat that is horizontal in the sleeping position, so we can feed her grapes as she is driven around town.

So far Ali is doing as expected at just over 5 pounds, taking all 8 feedings by bottle (notice no tube in nose) and limited to no breathing abnormalities. Now all we need is to get trained on the sleeping apnea monitoring equipment we will be using at home and then get her prescriptions filled and have the doctors train us when and how to:

• Give her the opium for life out of the NICU, the morphine to less the pain from her bleeding ears from the nearby sibling ruckus
• How to actually inhale the marijuana (getting the Bill Clinton book) to deal with the visitors and help her build up an appetite
• Finally the daily caffeine injections to keep her awake and stimulated. But I heard that Cuban Coffee is a safer, easier alternative. She will just have to fight Liana on who gets it first.

When I get the time I will orginze this bubblr presentation below with two postings for Alexandra and the other for our Sunday picnic with the Familia group.