Return to Rocksberg

We were a spectacle at the airport, as the winnebago sped up to the drop off point, we unloaded 4 suitcases, 2 car seats, 2 babies, 2 carry on bags full of milk, diapers and apnea monitors, a double snap and go, 2 parents, 2 grandparents and 1 golden retriever who had to go - if you know what I mean! They dumped us out and sped off just as quickly as they arrived. Now we were really on our own. After being felt sorry for by the check-in lady who didn't charge us for the extra luggage, giving us the twin, new parent discount, having the breast milk tested for bombs and making it through security, we were seated in separate isles next to a pack of boy scouts. I forgot to mention that the epicenter of the swine flu outbreak was NY, namely Columbia University ER, where everyone was trying to get medical attention. It had just infected thousands and killing hundreds in south america and the scare it was causing in the US was insurmountable. Schools closed all over manhattan, people were refraining from eating in public places and riding the subway - no one was safe and no one was sure. Fortunately, we did not see the deaths they did in Mexico, but we did know that children in group settings were the most infectious and contagious. I was paranoid that it was going to get into the NICU and be devastating for all the premature infants there, namely mine. The nurses traveled to work on the subway and passed through the triage center set up in the lobby of the ER on their way to the NICU, as did I and all the other parents. So, I made it through that, and now I was faced with being in an enclosed space with 30 coughing boy scouts with recycled air. My heart sank, I just wanted this to be over, I was so worried for my precious bundles who were only 3 months of age with an immature immune system AND I wanted to breast feed upon takeoff to help Chloe equalize so she wouldn't be uncomfortable! I was in an isle seat juggling nipple shields, pacifiers, boppy and nursing wrap - we got it done. And all went well - as far as I can remember. I just wanted to get everyone home safe. As soon as we landed in Albuquerque, I pulled out my portable oxygen sat probe and checked their oxygen - we were holding steady around 93% - good enough. Time to go home...

we made it - it was time to set up the Rocksberg-step-down-nursery!

And Away we go...

Packed up and ready to go

At some point, enough is enough. I woke up one morning in less of a haze than usual and decided they are ready! And more importantly, I had enough energy to make it home to Albuquerque. And even more importantly, I wanted to take my babies home. I had had enough of this adventure. I left Albuquerque mid February 2009 and wouldn't return until the end of June 2009. The alarms were starting to bother us, or we felt more comfortable that we could see the "episodes" and respond appropriately without having a loud beep constantly reminding us, so we disconnected them in intervals that seemed to stretch into days. I felt they had gained enough weight and progressed enough to fly on an airplane and land and live at a higher altitude when the oxygen is lower.

We booked our tickets, but we had to make a trip to Westport. Martha extended her love and support as always and invited us to come see her and get a little rest with the help of extended family and lots of rocking from the grandmother's. Just what I needed. So, after a lot of packing and shipping of boxes to Albuquerque, Mimi and The Captain picked us up in the RV. This was a particularly humorous sight to see. Loading up the RV double parked on 79th Street in Manhattan, we had to swing by Columbia before we left to sort out Brian's last minute packing and whatever else I had left there. And off we went...

We set up the Westport step-down-nursery:


They were just as cozy and just as cute.

As is somehow the case, it was colder in Westport in June, but it was so lush and peaceful. We had long sleeved night gowns with matching hats and double blankets. They snuggled and got snuggled by everyone. Cousin Carly was so helpful and so curious, she was there to help me at every turn and just couldn't get enough of Nate and Chloe.

In the garden at Westport

Me and Martha with the twins

Mimi and Chloe

Mimi in a rare moment - both Nate and Chloe, with Carly ready to help!

I wanted them to see the Atlantic before we left, so we all went down to Elephant Rock beach

sailboat art

It was perfect Westport weather. Martha gently touched their foreheads with the salty, cool water for the first time.

 We took some beautiful family photos in the garden!

What a spectacular few days. Yeah!! I was so grateful for the peace, great food, and wonderful family support.

Back to Almita

This was our set up: 2 side by side infant positioners/snuggle nest, elevated to control reflux symptoms, in a cosleeper bassinet,  attached to my side of the bed with O2 sat and heart rate monitors on a bedside table, next to the pumping station with the pump, tubing, cups, extra bottles, lids, labels, the journal to record it all in, spare case of water for mommy and the probes attached to their "big" toes. ***Cozy***

When we were ready to leave for the second and last time, we were ready. We made sure this time that we were being discharged with the proper bells and whistles - literally. We let the NICU doc talk us out of the apnea monitor and oxygen the first go around, but there was no way we were leaving without them this time. It is generally in a Pediatrician's tool kit to dissuade you from the use of a home apnea monitor. Wiggly little babies are known for detaching the probes so that the monitor beeps excessantly because it is "not picking up" and not usually because of the infant's vitals. Thus it makes for a lot more aggravation for the parents and doctor's managing the beeping when the probe is off. So, infants are not commonly sent home with them. Their Neonatal ICU nurse confessed that she would not take these babies home without a monitor, and would not have done so the first time. And she took care of Nate and Chloe specifically 40 hours per week for at least the last 3 weeks if not more. Watching a baby "on the monitor" (heart rate, respiratory rate, oxygen saturations and blood pressure) while sleeping and feeding while in the NICU gives the parents reassurance and then fear when they "have no idea what is going on" while at home off the monitor, AKA being a normal parent. It is a very strange phenomenon. Then being a pediatrician, I like to have all the information available to me. It was time for me to put on my mom hat and go home.

But the Pediatrician in me will give you all of their Discharge Diagnoses:

Nathan Finn:
1. 31 Week Gestation Preterm Male
2. Twin B
3. Diamniotic-Dichorionic Twin Gestation
4. Maternal Long QT Syndrome
5. Ruled out sepsis Twice
6. s/p Respiratory Distress Syndrome
7. s/p Indirect Hyperbilirubinemia
8. Likely Gastroesophageal Reflux
9. History of Apnea of Prematurity
10. Anemia of Prematurity

Chloe Genevieve:
1. 31 Week Gestation Preterm Female
2. Twin A
3. Diamniotic-Dichorionic Twin Gestation

4. Maternal Long QT Syndrome

5. Ruled out sepsis Twice
6. Apnea of prematurity

7. s/p Indirect Hyperbilirubinemia

8. Possible Gastroesophogeal Reflux

9. Bilateral Small Germinal Matrix Hemorrhages

10. Probable laryngomalacia

11. Anemia of Prematurity

12. Patent Foramen Ovale

Going home the second time with our eyes wide open and knowing that we were just transferring them to the "Home NICU,"  complete with ipod downloaded with soothing sounds and nursery rhymes - my favorite was U2's nursery rhymes! They were not going to be acting like normal babies for a long time, so our expectations were altered to have a much better understanding about the reality of our current situation. I have to say, the NICU physicians and nurses did a horrible job transitioning us home. And I attended all the classes and spoke at length to all the docs, specialists, therapists, nurses, case managers, lactation consultants and anyone else I could get information from. And still, even as a pediatrician, I didn't have a clear picture of the difference in care between a normal newborn and a preemie. For example, they are not allowed in a reclined bouncer meant for newborns, they do not have the muscle strength yet to maintain their own airway, the same goes for the car seat. Which reminds me about our trip home in the rental car! After securing both car seats - took a LONG time. I sat in the backseat between the 2 car seats, monitoring their color and propping chins to maintain an airway as Brian drove! We didn't take a trip by car for another month.

breast feeding Chloe and Nate patiently waiting his turn while being held by Mimi. Notice their co-sleeper attached to the bed. That was their NICU out of the NICU - their home nursery!

This is getting settled in! Water bottle and the cord from the probes are the staples

That is Chloe on "My Breast Friend" - only the best nursing pillow ever, Room enough for twins, an attached pocket for wipes, lumbar support and a built in little pillow for Chloe's head to position her just right.

So we got settled in for 2 hour feeding, sleeping and diaper changing around the clock. Chloe's apneic spells were better, ie, her sats didn't drop to the 70's as often, with breast feeding as with bottle feeding, she could coordinate suck, swallow, breathe and control the flow better, they only dropped to the 80's! Which is usually the difference of blue lips vs the entire face blue or chalk white and the heart rate dropping with the severe dips! This would also upset Chloe, so she would cry, probably in fear! So, I was, naturally, on Chloe duty. Brian admitted that feeding her scared him too much. And who would blame him, this was not parenting for the easily scared or lighthearted, THIS WAS PARENTING! Nate would latch well, and have very minimal drop in his oxygen sat or heart rate, but since one person could not breast feed twins around the clock every 2 hours and continue pumping to keep up emergency supply, Nate was bottle fed. So, the routine was wake up the baby, change the diaper, breast feed for 1/2 hour, rock the baby back to sleep, pump for 30 minutes, wash supplies, store milk, recording how long Chloe fed for and on what side, how many ounces Nate took, how much milk was pumped, labeling bottles, recording the times of wet and poopy diapers for each baby and trying to sleep for the remaining 45 minutes to do it all again. I also had to administer vitamins for anemia and prevacid for their reflux twice a day. Never mind, eating, peeing and showering myself. I did not do much else for an entire month.

We were used to their monitor's going of all day and night and not because the probes fell off. There were real issues and we were both glad we had the monitors. I am not sure how I would have slept my 45 minute intervals without them. The first night home with Nate on our first discharge, I was up checking him all night long to make sure he was still breathing and thought to myself, I am never going to be able to sleep again. I took refuge in the fact that no human being could do that for long and I would "get" to fall asleep occasionally out of exhaustion.

Snugglin' in

The twins cuddled together in their rare awake minutes. I think they really enjoyed that, they would just snuggle faces and be so calm, it was the cutest thing ever. They were listening to each other breathe. We also noticed a good drop in their heart rates and decreased amount of dips in their oxygen, or I should say...I did.

so relaxed and sound asleep, Chloe with her arms up, as usual 

just starting to wake up

Just like little peas in a pod

It was exhausting and exhilarating for so many reasons. I was getting a little of my strength back, and was able to start some light stretching on the floor of our bedroom listening for the monitors. That was when I wasn't sleeping or lying in bed too tired to move but couldn't quite sleep.

First Buggy ride through Central Park

Nate soaking it all in, thoroughly enjoying himself

The Captain and Cooper were enjoying the exercise

Mimi and The Captain came to visit and we had our first outing. Central park was 1 block away and it was now June, so the weather was good. We packed them up - which was an ordeal, loaded their car seats onto the double snap and go and timed it in between feeding and pumping. It was magnificent. We got a little rain and we were prepared, we stopped for treats...it was awesome. But I could not move from exhaustion from overdoing it, for our 20 minute walk. It was my first taste of exercise since I had to stop from complications at about 10 weeks pregnant!! A long time for someone who previously couldn't make it a couple days without running!

She wasn't exactly as small as to fit in the palm of his hand, but it could be close

You can't actually see the probes attached, but this is the benefit of monitors sometimes...sleeping on their tummies. They love it, they would gaze at each other lovingly for a while and then just drift off to sleep. You can't really see the ruffles on Chloe's little but, this is the only newborn outfit I bought for her at the cutest little chic baby boutique in Manhattan! She was swimming in it until about 9 months old!

Some of my favorite shots:

The move to Almita!

Chloe sleeping peacefully in her open crib in the NICU

At 3 weeks of age, both babies were out of their isolettes and stable in an open crib.

Nate was meeting criteria for discharge which meant that he had to be able to gain weight on his own, breast or bottle feeding without the help of the NG tube, he had to have 5 days in a row without apnea or bradycardia and otherwise stable labs, and the sign off of all his specialists. On the day of discharge, he was circumcised, given his 2 month vaccines, given a hearing screen (which was a very stressful event for him), had his heel stuck for his 2nd newborn screen, underwent a car seat trial to determine if he would be able to hold his oxygen sats while in that position and a few other things to round out the day. On the night before discharge, we were given the opportunity as parents to utilize the parent suite for transitioning out of the NICU. This was where we would be in charge of taking over all of his care while in another separate room in the wing of the NICU, so if we had questions or problems, the nurses and doctors would be right there. Needless to say, we did not get any sleep and were exhausted for what was to come!

all packaged up and ready to go!

see the look of fear on our faces...

Nate's first smile when he was leaving the hospital!

Chloe was still suffering tremendously with apnea and bradycardia that was worse with feeding and positioning, so that she was only NG tube fed for a while and would not meet criteria for discharge for a long time. Among a whole list of other preemie complications.

Almita, our temporary home on 79th Street

view from the roof deck at dusk!

My parents' long time family friends rented us their apartment on 79th street in Manhattan, this was Almita. It was lovely and it was big! For Manhattan! We even had a guest room for grandparents!! And a rooftop deck for eating and viewing

This was arranged because the 300 square foot graduate housing first of all would never accommodate all that was going on once the twins were discharged, and frankly, I couldn't stand to be in there another minute after bed rest for so long. There were dust bunnies as big as the twins from lack of cleaning, there was no counter top space for all my pumping equipment that was occurring every 2 hours, and there was no way it was going to accommodate the rest of the stuff that came with them, with changing and feeding and rocking and changing and feeding and.... And then there was the fact that my mother said she would never step foot in there again. Through this whole ordeal, she came for a 2 day visit from Boston and ended up staying over 2 weeks, sleeping on the LOVESEAT in the living room, while traveling by subway every day back and forth to the hospital. I think she had had enough.

Changing Nate's diaper with Aunty Laura

  

  

Nate sleeping right next to Daddy

Burping

Interestingly, Brian's parents were visiting that weekend from Florida, so they got to stay in our lovely guest room and help us with the transition. Laura and Joe were also there to help.

However, Nate was not ready to leave....The next morning as I was showering, to get ready for my trip to the NICU to see Chloe, Nate stopped breathing. Brian carried him into the bedroom floppy and grey. I attempted stimulation and when that wasn't working, started to position him to initiate CPR and he started coughing sluggishly. His entire life flashed before my eyes, as they say in the movies, and the rest of Chloe's life without her twin. Needless to say, I can't think of a worse day in my life, and he was immediately readmitted to the NICU where he spent another 3 weeks side by side with Chloe. He continued to have apnea and bradycardia and after what had happened, I was not ready to take him home again.

Nate at 1 month

Nate saying "hi Mommy" in his sleep

Chloe at 1 month, with a satisfied look in her favorite position, hands across her chest!

Chloe and Mimi

feeding Chloe

Chloe at 5 weeks

Nate feeling satisfied after eating, 5 weeks old

Nate and Mimi

Kangarooing 

Chloe smiling again, 6 weeks

I think she even has a chuckle going on now

Nate at 6 weeks

Our favorite time of the day, Kangarooing the clan!

That's Chloe checking out Nate's head

Now she grabbing his ear and he just thought it was all normal and cool, he had no complaints

Chloe trying to get those hands crossed over her chest.

This is how they would snuggle together under the wrap, just arms and legs all intertwined, so cute.

Mimi visiting again - feeding Nate

Nate is starting to get a chubby little face

So is Chloe - you can see those chubby cheeks at 6 weeks old

Sweet sleeping girl - always like to get her hands out so she can stretch them over her head

So, were getting ready to leave the NICU for a second time, Chloe for her first, and the NICU nurse's felt extremely generous to unhook them from all their machines and monitors, and let them have a little snuggle time. I was able to snap some great shots of this new experience for them! I was also trying to get some cute twin baby feet shots!

I made some phone skins and thank you notes with these little feet pictures!

This was made into a great phone skin for Mimi also

They both have one eye glued on me!

Nate is trying to hold onto Chloe's hand