As I write this post, I'm sitting on the couch with sleepy little Lainie nestled next to me. She's seven weeks old tomorrow. This morning I did something I haven't done since before she was born: I visited a couple of CDH blogs. A month or two before Lainie's birth, I found the blog of a couple whose first child {a daughter} had CDH and was treated at the same hospitals we were going to use. One CDH blog is linked to twenty others; pretty quickly I discovered an entire network of CDH families on the internet...and they completely freaked me out. Their babies were really sick, and/or still hospitalized months after birth, and/or had major complications--one little girl only lived a few weeks. After first discovering these blogs, I never went back. {As a friend pointed out, it does make sense that all the CDH blogs are on the worst-case-scenario side: You only keep writing about CDH if it's an ongoing issue. I'm not going to have a CDH-specific blog, because it's no longer something our family is dealing with.} Anywhosies, this morning I ventured back, and I was blown away all over again by how incredibly, deeply, overwhelmingly God has blessed us. I have a happy, healthy, completely "normal" seven-week-old baby at home with me; our biggest issues are thrush and that she doesn't like to sleep if she isn't snuggled against another human being.
This is not normal for CDH babies.
Elaina never needed a breathing tube. She never had problems with reflux, swallowing, or latching. Her heart was not affected by the hernia at all. Good grief, it appears her LUNGS were not affected by the hernia at all! NOTHING about Lainie's medical course is "normal" for CDH babies--she was, and is, off the charts "abnormal" in the very best ways. Even according to the doctors' conservative best case guesses prior to her birth, she'd be hospitalized at least 4-6 weeks. Their best case scenario--the best possible outcome they could imagine--was her being discharged from the hospital around now. Not five weeks ago.
Man, Jesus, You are awesome!!!
I have already forgotten the fear and the gut-wrenching unknowns of that season. I have forgotten how not knowing how anything was going to pan out and that undercurrent of fear was our normal for two months. I have already forgotten how much worse this could have been. I don't want to forget, because I don't want to forget the depths of mercy we have to be thankful for. If I forget how crazy bad things could have been, I don't recognize how crazy good things are. I'm frustrated with my lack of sleep these days; any other parent of a CDH baby would give the world for the privilege of sleeping in two-hour increments, if it meant their baby was healthy enough to go home.
Thank you, Jesus, for the shocking gifts You have given me, Mike, and Elaina. For the incredible gift of this little girl, healthier than anyone could imagine, eating like an eight-pound piglet, charming everyone with her smiles and her sleep talking and those blue, blue eyes.
Back to the story:
Friday morning at rounds, the doctors told us that Lainie would probably be discharged from the NICU to a regular room that day. She wasn't in need of NICU-level care, so there was no reason to keep her there. We were shocked and ecstatic. I remember the neonatologist {who asked about her pooping the day before} saying that they were going to miss her; she's such a sweet, cute baby, but she really doesn't need to be in the NICU anymore.
We spent the morning hanging out with Baby Bug, holding her, and waiting for her to get a room assignment.
We discovered the trick for instantly calming Little Miss if she fussed: One hand cupping her feet and legs, the other hand gently holding down her arms. She would immediately relax and drift off. Mike spent a lot of time "holding" her like this...she loved it.
:: Ramah and Lainie...Lainie's head had already outgrown the hat she got from the university hospital, so they gave her a new one that was hand-knitted and donated to the Children's NICU ::
Sometime on Friday, I randomly thought of baby footprints {I still have no idea where that thought came from} and asked Mike if they'd taken Lainie's footprints at the university hospital. He didn't remember them doing that, so he called them and asked. They said they don't typically do footprints on babies that go to the NICU. ?!?!?! Ramah was Lainie's nurse again that day, and she very graciously hunted up a footprint kit and made us some footprints.
It was mid-afternoon by the time Lainie had a room assignment on the surgical floor. She got a new crib--it was huge and reminded me of a cage--and then Ramah and another nurse took us all to our new digs. I was a little nervous, because once Lainie was out of the NICU, we were no longer eligible to stay in a parent sleeping room. Comically, our tour of Children's had been scheduled for the day Lainie was born; as it was, we hadn't seen much beyond the NICU and cafeteria. I needn't have worried. This was our room in the surgical unit:
:: doesn't that crib look like a cage?! ::
The couch {seen in the first two photos} folds down into a double bed! It was actually pretty comfortable. The room was quite spacious, and we had our own private bathroom with a shower. Thank You Jesus!! This setup was even better than the parent sleeping rooms: much bigger room, much bigger bed, same room as our daughter, private bathroom, big windows. It felt luxurious, folks!
What I did not realize till a few days later, walking around the unit, is that most of the rooms on that floor are shared by two patients. We got one of the few single-patient rooms. With all the pumping and breastfeeding I did during our stay, I can't even *imagine* sharing the room with another family...
We met our sweet and unspeakably awesome and helpful nurse, Alysia {she was our day nurse Friday, Saturday, and Sunday}, and she showed me around the unit: linen closets {"If you need bath towels, new sheets, blankets for your baby, etc."}, elevators, the family area {"Feel free to use the fridge, freezer, and microwave--there are plenty of disposable dishes and utensils."}.
Our night nurse, Fiona, was equally awesome {we had her Friday and Saturday nights}. When I think about Fiona and Alysia now, I seriously get teared up and want to go find them and hug them and give them each a $500 Starbucks gift card RIGHT NOW and show them how well Lainie's doing. They both spent so much time with us, answered our dozens of questions, thought of our every need pretty much before we did, never rushed or answered a single phone call while they were in our room. They were both total godsends. When Alysia brought Fiona in to introduce her and Fiona saw teeny tiny Lainie in that enormous crib, she exclaimed delightedly, "Oh, it's a wee baby!" {Fiona is British; you have to read it with an English accent for the full effect.} As Alysia had said, having a baby less than 48 hours old on the post-surgical floor was quite unusual!
That night, I had just drifted off to sleep when I realized someone was coming in the room {we had pulled the curtain partially around the daybed}. Groggily I watched a lady in a lab coat fix her hair in front of the mirror on one of the cupboard doors before she went over to Lainie's crib. Retrospectively hilarious, since she thought Mike and I were asleep. A few minutes after she left, Fiona came in and said, "I'm so sorry to wake you, but the night resident just rounded on your baby, and she said we can take out her stomach suction tube, so I'm going to do that when I take her vitals at midnight."
Me {suddenly very much awake and incredulous}: "Does that mean she can eat?"
Fiona: "Yes, you can feed her after I take it out. I'll bring in a bottle and we can use some of your breastmilk that's in the refrigerator. I'll wake you when I come."
She's starting oral feeds at a little over 48 hours old...not when she's a few weeks old. I can't believe it. I can't believe it!
Needless to say, I couldn't really sleep! When Fiona came back, I watched her take out the tube, then I fed Lainie her first bottle with Mike and Fiona watching. {They wanted to use a bottle, rather than the breast, in order to measure how much she ate.} She ate an entire 30 ml--one ounce--very hungrily, which was phenomenal!! Mike and I were so excited, it was hard to go back to sleep--but that was definitely in our best interest, since we now needed to feed Lainie every 3 hours around the clock.
Even though Lainie was still getting nutrition through her IV, we learned that it was critically important for her to start eating more than she did at her next few feedings. She needed to eat a minimum of 36 ml per feeding for hydration, and that was not happening at each feed--sometimes by a long shot. At first we were feeding her pumped breastmilk in a bottle, but soon they got us a special baby scale that measures down to grams. One gram is approximately equal to one ml, so by weighing her before and after she breastfed, we could know how much she ate.
We didn't know it at the time, but this was the beginning of what was to be our biggest challenge for the rest of Lainie's hospitalization, and several weeks after: Getting her to eat. Every three hours, we went through the same routine:
~ Try to wake Lainie up {a long and sometimes unsuccessful process}: change her diaper, talk to her, tickle her, etc.
~ Weigh her
~ Nurse her and try to keep her awake--this was often very frustrating, as it was very difficult to keep her from falling asleep
~ But don't nurse more than 30 minutes, otherwise she will burn more calories than she takes in
~ Weigh her again
~ Record how much she ate
~ Pump for 15 minutes
~ Package up milk and give to nurse to freeze
~ Wash pumping equipment
All that takes at least an hour, so I generally had less than two hours till I had to do it all over again...and at night, that was definitely not long enough! {Sad but entertaining side note: The song that my phone plays as an alarm was going through my head pretty much the entire time we were at the hospital, because I heard it every.three.hours. I was SO SICK of that song!!}
: :a little jaundiced ::
:: trying to treat the jaundice with sunlight ::
Mike was incredibly helpful with all the pre- and post-feeding stuff. After a day or two, he volunteered to wash the pumping stuff at night so I could get a little more sleep. I felt bad, waking him from a sound sleep every three hours just to wash the pumping equipment, but I was so exhausted that the extra ten minutes of sleep was worth it. And Lainie slept like an angel in between feedings. We were lucky to see her eyeballs for a few minutes twice a day. She almost slept too well...it was really, really difficult to {a} get her to wake up period, and {b} keep her awake while she was nursing. That was the main reason she often ate less than we wanted.
On Saturday evening, guess who popped in for a visit?!
Chelle and her family, who just happened to be making a quick trip to our side of the state! It was so special for them to meet Lainie when she was only three days old! Chelle made the most beautiful quilt for Lainie...you'll see photos of it when I do a post about the nursery {whenever that may be}.
:: family photo, taken by Chelle ::
to be continued...
