Wednesday, March 23, 2011

Adeleine's NICU Story: Part 6

There's more? When does this ride end?

Part 6: Weeks 9-15

The "feeders and growers" room was great, more space, less stress, a more relaxed atmosphere with pumping room that had a comfy couch and chair and could seat up to 4 pumping mommies.  The pumping room was where the mommies would pump (obviously), talk, laugh and cry while sharing their stories about premature or sick babies. Then we'd take a deep breath, open the door and go back out to reality.  I spent a lot of time in that room since I had a hard time pumping (but that's a whole other blog post) and it was soooooo good to talk to others that were going through the exact same thing. I wonder if the docs and nurses know the value of that pumping room to the emotional health of the mommies?  I hope they do.

Adeleine's second eye exam did not go as well as the first. ROP (Retinopathy of Prematurity) is caused by exposure to oxygen and she had been on it for over two months now and the weaning was going sloooooowly. The doctor noted that she had ROP in Stage 1. There are 5 stages of ROP. They will do laser surgery when they get to Stage 3 to prevent blindness. Stage 1 meant that there was some evidence of growth of abnormal vessels in her retina. The following week, she was classified as Stage 1 to 2. So, not quite Stage 2, but worse than Stage 1. She would be checked again in a week.  Ugh. Add it to the list of things to worry about.

In the meantime, at about 10 weeks Adeleine would spend most days either on extremely low doses of oxygen or off the nasal prongs altogether. Some days she would need to go back to it, others she would be just fine.  It's funny how scared I was when she was off the oxygen, you would think parents would be ecstatic, but there was security in knowing she had that as a crutch and suddenly when it was gone, she had to breathe ALL ON HER was freaky.  I watched those monitors sooooo closely when she was off the oxygen. After a few weeks of breathing all by herself, I finally relaxed. Yaaaaay! Another milestone down!! Woohoo!

Besides all the obvious risks of prematurity, I learned that there are a few musculoskeletal 'side effects' to growing outside of the womb for the last trimester. Babies are supposed to be floating in a sea of amniotic fluid, stretching and kicking their arms and legs, building muscle tone and spending much of their time in the fetal position. Gravity causes a bit of a problem for preemies outside the womb. Premature babies spend months lying down, not floating. As much as the nurses try and reposition them to replicate the fetal position (curling them up and swaddling their hands at the midline), the force of gravity on their weak little arms naturally pulls them out to the sides. Since Adeleine spent so much time lying down, especially on her belly (it was her favourite position - ie the one where she would have the least amount of A's & B's) the muscles across her chest were stretched instead of tight and her arms splayed out to the sides instead of naturally curled up with hands touching in the middle of the chest. Term babies are all curled up tight, preemie babies look like starfish (or like they want to give you a hug all the time!) and are sometimes floppy (low muscle tone). Adeleine had pretty good muscle tone, but would need physiotherapy after discharge to help with these muscle related issues.

The effect of gravity can also sometimes be seen on the preemie skulls. When their very soft skulls are lying on a bed for three months they tend to flatten out on the sides. I remember noticing this one day when I was holding Adeleine and I looked at the top of her head. I called the nurse over immediately and said "Why is her head a rectangle?!!!".  It really was.  It was kinda freaky. She told me not to worry, it would round out on its own eventually, as Adeleine spent less and less time lying down.

The following two weeks her ROP was the same, Stage 1-2.  Finally, after a month of this ROP business, the doctor said she looked like she was "turning a corner".  I don't know exactly what this means, but it was good. I'll take it.

Adeleine still had a tube in her nose that the nurses would use to feed her, but she was also bottling. I struggled with that for a long time because I am sooooo pro-boob I didn't want her to be bottled at all, but I couldn't be there 24/7 so bottling was the only choice if she was ever going to get off the NG tube and go home. She needed to learn how to eat. She struggled with bottles quite a bit. The first time she had one she choked, pursed her lips and just stopped breathing. Preemies do this a lot, they choke and then they stop breathing in order to protect their airway. They just don't know how to handle a choke and end up needing to get stimulated or resuscitated by the nurses.  Adeleine did this a lot.  She didn't learn to handle bottling/chokes for weeks. We would call her the 'delicate little flower' when feeding her. You needed to give her just the right amount, burp her at just the right time and watch her expression like a hawk, or she'd stop breathing and turn blue. Blue. So needless to say, feeding was super stressful!

Preemies need a LOT of calories to grow, more than what breastmilk provides (because, hey, it's for term babies) so they were bumping up the calories by adding "human milk fortifier" to my milk. I don't know exactly what that is, and I'm not going to look it up now, but it was good for her. At some point they switched over to adding formula instead of the fortifier to bump up the caloric intake. Adeleine did not like this. She instantly became crampy and grumpy and gassy. So gassy in fact, that her farts were well known in the feeder and grower room. The mom next to us told me that Adeleine once startled her with her farts. Our delicate little flower was a loud and stinky little flower! But, she needed the calories from the formula to grow and her weight gain and feeding were the only things between her and the door now, so toots or not, we kept at it.  I would silently call her "Toots McGee" for a laugh, since I'm sure that's not at all appropriate.   

At 11 weeks Adeleine was so stable she was moved to "Care By Parent". CBP is an area of the NICU where the parents stay with the child 24/7 and take over their care before being discharged home. It was like she got her own apartment! She had her own room with her bassinet, a double bed, a sink, a tv and a nursing chair.  It was heaven. Adeleine was technically "Care By Nurse" because we had Liam at home and we couldn't be there ALL the time.  But I stayed over every other night and Andrew on  weekends for a month. For me, the routine was one night at the hospital, one night at home, every day at the hospital. It was a lot of traveling back and forth, but the time we spent together was so special it was worth it and we were just so grateful to the hospital for granting us this opportunity to be closer together.

Toots McGee making good use of her pacifier in her CBP room.
In CBP we worked on her feeding, both breast and bottle. It was so nice to have a quiet room and to be able to pick her up and hold her and feed her (pretty much) whenever we wanted. We started to begin to feel like she was really ours to care for - we bonded with her in those hours spent in the rocking chair.

Around this time, the formula added to my milk began to give her reflux and she would projectile vomit quite a bit.  That's a sight. A tube of milk jumps right out of her mouth. Crazy. And also worrisome since they wanted to check her esophagus out for a blockage or narrowing. A trip to radiology proved no narrowing so it was just plain old reflux and she continued on the medication that reduced the amount of acid in her belly. She would grow out of it apparently. Great. She was having so much trouble gaining weight, and the vomiting was not helping, especially with the choking problem. She was only gaining 20g a day and the dietitian required her to gain 30g a day (or 1oz).  She would rarely finish a feed via bottle (and would need to be topped up through the nose tube) or come close to her daily required volume, which would increase daily as she gained weight (I kept telling them that she was chasing a moving target). As she approached her "due date" it was becoming apparent that she would not be able to go home without the NG tube in.  The nurses asked us if we were interested in taking her home with it in, which would require both parents to learn how to insert and change it. We said no immediately. We are not medical people and the thought of maintaining an NG tube was very scary to us, and we thought Adeleine would soon catch on to the eating thing. But after a week, we realized that she would be in the NICU over the holidays and into the new year if we didn't take on this task. So both Andrew and I learned to insert an NG tube and the arrangements were finally made to send home our little peanut. The thought of her coming home was as scary as it was exciting for us! We would suddenly be responsible for her care, with no nurses standing by, no monitors, no safety net. But we were as ready as ever.

Look at me! I have good eyes now! And a big-girl crib!
As for her ROP, by the time she was discharged the doctor said her eyes looked fine and he didn't have to see her again for a year!!! Another milestone down! "Whew!" again!

For weeks the nurses had been lecturing us diligently about how sensitive Adeleine's lungs were. Because she was on oxygen for so long, it was concluded that she had sustained some lung damage, called Bronchopulmonary Dysplasia (BPD).  A common cold would immediately put her back in hospital on a ventilator (like on day 1). We would need to keep her away from germs by restricting visitors and remembering to sanitize sanitize sanitize our hands. We sent a mass email out to our loving family explaining the no-visitor situation and the fact that we would not be coming home to Windsor for Christmas. We were so grateful for their support - we are very lucky! And then I bought a shitload of sanitizer.

Miss Adeleine was finally discharged home, 2 weeks past her original due date, after spending 15 weeks or 107 days in the NICU!!!!  She went from 2lbs 2oz to 9lbs 6oz.  It would have been 106 days, but the worst snowstorm in 30 years decided to show up and make it impossible for us to drive! Ah well, what's one more day? ETERNITY!!! We were overjoyed when we finally got to take her home. Words cannot express how happy we were!

First moments at home!
But, the rollecoaster ride is not quite over yet. She still had an NG tube in and was not gaining enough weight per day. Ugh. To me, she looked like a chubby girl!

The hospital had arranged for us to have home support from the CCAC for nursing (for the NG tube supplies) and a dietitian. They would visit every few days to check up on her/us and see how everything was going.  It was wonderful to have them as resources we could call on. After a week at home, Adeleine had her first appointment with her new pediatrician.  I kept detailed notes of her feeding volumes and was able to tell the doc that she was only taking 20% of her feeds by the NG I asked if we could take it out. The doc said that she was happy with her weight so try it out for a week. Well I pulled that sucker out the minute we got home. She wasn't even out of her carseat by the time that tube was in the garbage.  The dietitian suggested I put it in at night to top her up - yeah, right, in and out every night, no thanks. After a week the doc was still happy with her weight, so NO MORE NG TUBE!!!! Another milestone down!!! BAM!!

At this dr's appointment I asked my most pressing question, especially since Adeleine had begun to refuse her bottles and was developing an oral aversion. "When and how can I transition her to breastfeeding full time? The dietitians had told me only to feed her 1-2 times a day by breast, so as to not tire her out." The doctor suggested I try her for 10 minutes each time and if she didn't take enough by breast to top her up with a bottle. (If you were wondering how we measured how much breastmilk baby drinks, we weighed her before and after her feed. 1g of weight is approx 1ml of milk. We had borrowed a baby scale from the NICU.) Well this little peanut just took off with breastfeeding. She LOVED IT. Loved. It. She could decide when it went in her mouth, control the flow herself and there was no nasty tasting gas-inducing formula to aggravate her reflux. The days of nasty bottle feeding were OVER! She was a boob girl, and couldn't have made me more proud. She went from projectile vomiting one day, to NO vomiting at all the next. She took in more volume with breastfeeding than the bottle and she kept it all down. Her reflux was 99% gone. She stopped being grumpy and crying in pain from the reflux and the gas. She was taken off her reflux meds the following week. This girl could eat and eat and eat. Another milestone down!! Yeah!

From that time on, which was when she was 4 weeks past her due date (just before Christmas), it has been smoooooth sailing. We had the most special Christmas as a little family unit at home in our bubble. We missed our family down in Windsor but were so very grateful to be home and celebrating the holidays with a happy, healthy little baby. Yay!

Christmas angel in Grandma Joanne's hat!
We still live in our germ-free bubble: no visitors until after flu season is over (which is very soon!), no errands, outings are rare and well planned, excessive use of sanitizer and frequent hand washing. The bubble life, while terribly boring and isolating sometimes, has all proved to be a very good idea since she never got sick! Knock on wood people, come on, do it!

She'll eventually grow out of her remaining issues: her lungs will heal, her skull will round out (it has improved considerably already), she'll develop more strength in her muscles, her little red dot will disappear. Adeleine goes for developmental follow up with a nurse and physiotherapist about every 6 weeks or so, just to check to see if she's meeting her milestones and so far so good!  There are a few little things we need to work on with her, but overall, she's quite average for her age!! Yippie! How amazing is that, eh?

So that's her story, from beginning to now! I'm hesitant to write this, but I do believe that the rollercoaster has come to the end. I'm not saying there's not another little ride waiting for us down the road, but I believe the super-scary-giant-hill-upside-down-whiplash-inducing-make-you-want-to-puke ride has stopped. Thank god, we wanted to get off! Now we're all just sitting on the ground, eating cotton candy under a rainbow. Well, not really, but it's a nice picture. Here's another:

She's now 4 months corrected age (or 7 months real age) and a bright, happy, healthy little munchkin who loves to smile smile smile. We are so very very lucky to have her. We are eternally grateful to all the doctors and nurses who cared for her with such love, especially Lorrie her primary nurse and Jan her nurse practitioner. Hug a nurse today!

A big thank you goes out to our wonderful family and friends who have supported us all - we love you and hope to see you all very very soon! XXOO

*Please note that this blog is not medical advice. It is simply our story.*

Previous Posts
Part 5: Weeks 3-8
Part 4: Dealing
Part 3: Weeks 1-3
Part 2: The First 24 hours
Part 1: Labour & Delivery

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