Answers

As I drove to the NICU, I readied myself for a fight, if need be, over my daughter’s care. I told my mom that I wanted some answers- I couldn’t understand how her eating would get worse simply because Harper had moved rooms. So I arrived at the NICU with clenched fists, just knowing that I was going to talk to people who didn’t see the big picture with Harper- I was so busy worrying about my hypothetical fight that I missed the big picture myself.

I scrubbed in with a woman I had met before, a lactation consultant that I talked to while I was still in the hospital who was supposed to be “the best”. She chatted me up about the twins and about Jack’s eating since he’s been home. Then she asked the inevitable follow up about Harper and her schedule for going home. I explained that Harper was still trying to learn to eat and the consultant asked if she could come and take a look at Harper while I was there. I shrugged and said, “sure”, craning my neck to see whom Harper’s nurse and, in my mind, my inevitable opponent, would be. Turns out I should’ve worried less about my fight, and more about the consultant.

The lactation consultant came in after the nurse had already mixed up a bottle for me to try with Harper and just as I was trying to wake her up- determined that I would at least offer her said bottle (a step up from yesterday). I explained Harper wouldn’t be breastfeeding, but the consultant asked to evaluate her anyway. This evaluation is the answer I’d been waiting on; I just didn’t know it. 

She spent thirty minutes with me. In those thirty minutes, I learned the following:

-Harper has a very high pallet that needs direct stimulation from the bottle before her sucking reflex will take over

-She thrusts her tongue while she sucks, something that will force the bottle out of her mouth whether she wants to spit it out, or not

-Harper has good, strong jaw muscles and a strong suck when she feels the bottle high enough in her mouth

-I learned a new position to hold her to maximize her comfort and minimize the thrust

-Harper also has some anxiety about eating (something I noticed and had told everyone- her nurses who would listen, the nurse practitioners, the occupational therapists, etc.) Harper gets hiccups each time we try to feed her; that’s an anxiety response in preemies

- I learned how to set a calming environment for Harper before eating and to stop when it becomes too much for her instead of trying to force her to finish and scare her

-I also learned the root of Harper’s anxiety- something I’d bee trying to get to the bottom of- she has still not mastered the idea of “suck, swallow, breathe” so eating a bottle is difficult for her brain that’s not quite organized yet.  Meaning, when Harper eats from her bottle, she holds her breath like she’s going under water, and then sucks a few times. When she stops sucking, she has to pant to try and catch her breath- it is very taxing on her body.

The thought of having to chose between eating and breathing was enough for me to realize that is why Harper is not home yet. It’s not that she can’t eat, or won’t eat, it’s that her brain just isn’t mature enough yet to make the connection and I can see the panic on her little face and hear her struggle to catch her breath- proof of what the consultant is saying.

I left Harper’s room today armed with more information to help my daughter than I have ever had. Eating is important, but breathing is more important. This is why Harper is having anxiety hiccups when she eats; someone asking me to hold my breath over and over would make me nervous too. I also felt that someone had finally listened to my concerns and had taken the time to investigate with me instead of dismissing her as a “silly girl who just needs to eat” or saying, “she just wants to stay in the NICU and hang out with us”.

I had prayed the whole way to the hospital for the Lord to give me the words, to use me to help Harper voice her struggle, to fight for her. In the midst of gearing up to fight, I didn’t realize God was slowly providing me answers if I would just be still and listen.

Imagine my delight when Tony sent me this picture tonight. This is Harper’s bottle and Tony’s caption read “I’m trying, Mom. I want to come home.”   

The Mystery Girl and Her Brother

The twins will be 39 weeks on Wednesday-just one week away from their original due date. With that due date quickly approaching, I had hopes that we would all be together by this time- it looks like all of us being together by 40 weeks may be a pipe dream.

Harper is still not on track with her eating.  The day Jack was discharged, many of the nurses told me that once one twin leaves, the other one seems to pull it together and they leave quickly too- that was 4 days ago and we seem to be going backwards. Last week, Harper was attempting bottles 5-7 times a day and completing 2-3 of those bottles and finishing at least ½ of another. When I went to see Harper in her new Pod today, she hadn’t completed any bottles, nor had she attempted any bottles in the morning.  The feeding in the NICU is “cue based”; the baby has to be showing signs they are hungry and motivated to eat (sucking on pacifier or fingers, rooting around, etc) before being offered a bottle. I’ve always had problems with Harper either 1) Cueing for me and then, when offered a bottle, acting like she no longer wants to eat by refusing to open her mouth or take her bottle or 2) Not cueing at all, but suddenly cueing after the feeding tube has started. Today we had an appointment with the lactation consultant. While Lactation was in our bay, Harper was wide-awake, but would not sustain a latch. She would latch on and then stick her tongue out, or push away and smile. She looked at all the lights, stared out the window, did everything but nurse. So, the lactation lady left and the nurse hooked up the feeding tube; the feeding tube started while I held Harper and the tube had been going about six minutes when Harper started cueing and rooting and decided to latch and eat.

You can imagine the frustration I felt today when Tony got home from the NICU and told me that Harper’s new nurse, trying to conserve the milk that we supplied her, only gave Tony ½ a bottle to offer Harper saying, “she hasn’t wanted to eat all day”. Tony fed Harper the bottle, which she completed (yay)! But then, Tony had to take the bottle away to refill it with the rest of her feed, and she refused to open her mouth after that. Tony also told me Harper had not even been offered the option to try a bottle all day because the nurse said she wasn’t cueing. Harper has a window of about 5 minutes or so to cue before her feeding gets put in the feeding tube, so if she’s not alert and acting hungry in those 5 mins, her chance to bottle feed is lost. I don’t know how, but we’ve managed to back slide and here we sit with a little girl who is almost full term and will not eat. The nurse practitioner that has seen Harper the least is on duty this week and told Tony she was going to order a blood test to see if Harper is anemic and that’s why she won’t eat, but she doesn’t think that’s the problem. It’s frustrating because everyone’s answer is “when she gets closer to term, she’ll grow out of it and will eat”, well, she’s got a week until she’s term and now she’s in retrograde.

I’m trying to trust God’s timing and to be patient and optimistic, but my heart breaks when I have to leave her– this is such a helpless feeling.

In other news, Jack tried out the Rock and Play Sleeper for the first time today; he seemed to like it and even let me get in a quick shower. Here’s a pic- too cute not to share.

Outings

Big adventures were to be had in the Collett family today. Jack took his first outing and I tried my hand at packing a diaper bag and transporting the little guy as he went for his first pediatrician appointment. Miss Harper also took an outing- her very first venture out of Pod E as she moved into a new room down the hall in Pod F.

Jack’s very first pediatrician’s appointment went well. He didn’t cry or fuss on the 20 min car ride and was fine sitting in his car seat in the waiting room. He got his weight and height done and, even though he is in the < 1 percentile, Tony and I are proud to announce he is growing just fine, and doing so at home (so we are feeding him enough- good to know). Jack has gained 3 ounces from his discharge on Friday, 6 lbs 1 oz to 6 lbs 4 oz, and he is now 19.3 inches long. The doctor was also very proud of him for his development up to this point- he got an A+ and did well waking up and not crying during his exam. All of these “good marks” made him eligible for his 2 month old shots- NOT Jack’s favorite part. I held his hands and soothed him while the nurse gave him an oral medication and three shots. He has been sore in both legs, and ran a very small and very short fever, but otherwise has been fine. I decided that since he didn’t feel good, he needed extra Mom, Daddy, and Nana snuggle time- I’m sure that is the trick that helped him do so well.

Miss Harper’s big adventure is also something that she handled quite well. Tony and I were told today that Harper was going to be moving to a new Pod in the NICU to rearrange the nursing schedule in Pod E. Two (of the 6) babies in the Pod are long term kiddos with problems- one’s been on a ventilator since Thanksgiving, the other one was only 420 grams at birth- and both have gotten sick in the last 10 days. So, Harper, being a feeder/grower, moved to a new Pod to help the nurses lighten their load and focus on the sick wee ones. I was encouraged to stroll down to Pod F, Harper’s new residence, and see it. The Pod houses more kids than E does and it seemed louder to me- not my favorite.  However, the nurse giving me a tour of the Pod told me that there was a corner bay open and Harper could be eligible for that one, upon request. I checked it out, put in a request, and Tony helped Harper move into her new digs tonight. She now has a window with a view of the Tollway, three chairs in her bay, a door to separate her from the rest of the Pod, and her own thermostat (score!). I will post pictures of the new place tomorrow- Tony said she seemed happy.

So, there are our adventures for the day. All of this moving about made for one tired Momma, Daddy, and Nana.

8 Weeks Old

I can’t believe the twins are 8 weeks old today- time sure flies. Jack had a good Sunday here at home and Harper had a good Sunday at her private NICU suite.

Jack had a little bit of a rough night on Saturday, insisting that he stay awake for a majority of the 11-2 stretch and beyond (almost 3 before we got him to sleep officially). The night left both Tony and I frazzled and longing for a 28 hour day, if only to sleep for 4 hours without interruption. We also tried out a new schedule the lactation consultant put together for us- we will give it another go tomorrow night and see how it works then. With Tony going back to work on Monday, we have to find a routine that we can really groove. Thank goodness Nana will be back tonight so we can add another person to the rotation.

As for Harper, when I went to see her at 11:30, she wasn’t too interested in eating so I got to snuggle with her while she was fed through her feeding tube. This, apparently, was a good rest break for her because then she completed a bottle at 2:30 pm for her nurse and took 75% of her bottle for Tony at 5:30 pm. I am hoping that this will begin an eating trend, but I’m not holding my breath. In the meantime, Harper has been growing and is up to 5 lbs 6 oz. I hope we can have our little girl home with us by their March 6^th due date.

Picture of the day goes to Jack, all snuggled up and sleeping on his dad’s shoulder after his tummy time workout and dinner. Too cute not to share! 

Visitors

As you can see by the time of my post, things are a little more hectic at our house than normal- well, I guess this is our “new normal”, so I should just say, “our house is hectic now.”  Little man Jack is doing well. We are so glad to have him home, but are still, even after 8 weeks, adjusting to his cues. It’s much different having him around 24 hours a day instead of just seeing him for a few hours a day surrounded by nurses.

On Saturday, his Great Granny and Great Aunt Becky and Great Uncle Rex visited Jack; it was so neat to be able to show him off for the first time. Granny got to hold Jack after his bottle and Pop, who came over too, provided the perfect shoulder to nap on. While they were here, Jack ate two full bottles, slept well, and interacted with our guests- it was a good day.

Harper also had two visitors today-Mom and Dad. I went up at 11 while Tony watched Jack and Tony went up at 5 while I watched Jack. We both found Harper snug as a bug in a rug and very cute. Her nurse said she was doing great and still working on learning to eat. Tony noticed they had changed her from a normal flow bottle nipple back to a low flow and he questioned the nurse about it; she said that she would try the normal flow again today, so we’re anxious to see if that may be something that will jump start her eating.

Saturday night and all day Sunday Tony and I are on our own with Jack because Nana is going home for the night- wish us luck and I will keep everyone posted on how it goes!