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Category Archives: Back-story

NICU: The First 24 Hours

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Getting cleaned up, weighed and measured.

When the Bean was born, we knew she was going to be spending some time in the Neo-natal Intensive Care Unit (NICU). They had made sure that there was a spot available for her there before they offered me the C-section. The pediatrician on duty in the NICU came to my room during the week before the Bean was born to let us know what to expect after the birth and during her stay. I felt so grateful that they were so prepared, but it also was not how I had imagined things going. Of course, with the birth of a baby, things rarely go exactly as we dream they will.

Immediately after the Bean was pulled out of my belly, my Sweetie went with her and the nurses to the weighing station where she was cleaned up and weighed and measured. She had to be accompanied by her Daddy until they put her tiny ID tag on so there was no question that we had the right baby.

She did fine on her APGAR score (I don’t remember the number) but she was super tiny: 3lbs, 13oz and 17 inches long. She was so skinny. It’s weird to look back on the pictures. They wrapped her up in a blanket and brought her over to me so I could see her and touch her tiny face. Too soon, they took her away to the NICU to care for her.

Seeing my daughter for the first time.

Overnight, while I was puking on the floor of my hospital room (see Birth of a Bean for the story), the Bean was dealing with some fluid in her lungs. She was almost 5 weeks early, and I’d been given an injection a few weeks earlier to help mature her lungs.  But she didn’t get squeezed the way babies do when they’re born vaginally. That squeezing is so beneficial for clearing the lungs of amniotic fluid. They taped a tiny nasal cannula onto her face to blow air up her nose and down into her lungs to dry them out. They didn’t tell me about her respiratory distress until the following day when I was in better shape, and by then she was fine.

She was slightly jaundiced, so she got to spend some time under a tanning lamp to break down the bilirubin in her system. I still have the foam eye shades that she wore to protect her eyes. They had to test her blood several times over the next week and they really had trouble getting blood out of her tiny veins. For the bilirubin test, they just prick the heel and smear a tiny drop of blood on a special piece of paper. But the Bean wasn’t giving up her blood that easily, and they had to squeeze and press her tiny foot really hard to get anything out. One young tech just couldn’t get anything out and had to get a more experienced nurse to help. Watching them do all that made me a little uncomfortable at first.

First diaper change - yes, I was really excited.

Because the nasal cannula was in her nose, the Bean initially had an NG tube inserted into her mouth and down her throat to her stomach, so that we could feed her. She was too small and weak to get enough milk through nursing. Once she didn’t need the extra airflow anymore, they moved the NG tube to her nose so that we could also practice breast feeding. I started pumping my milk as soon as I was able to, and the nurses fed that to her through the NG tube by attaching a syringe to the end. Her first feeds were 1 ml of milk every three hours. At the beginning, they also added something to my milk to help fatten her up faster. The Bean hated that tube. Even at 3 days old, she was grabbing at it with her tiny fingers and doing her best to pull it out.

There were sensors attached to her skin and around one of her feet, with wires leading to a machine that reported her vitals: heart rate, oxygen level, and respiratory rate. She also had an IV needle in her hand. It was so sad to see my tiny baby hooked up to all that machinery, and it took some practice to get used to dealing with the wires.

I very clearly remember the first time I got to hold my daughter. My Sweetie pushed me to the NICU in a wheelchair, and I was initiated into the routine of scrubbing my hands before entering. The Bean’s incubator was close to the entrance of the NICU, and I could see her tiny curled up body from the door as I scrubbed. I went to her bedside, but didn’t know what I was allowed to do. I’d never seen such a tiny baby, and though I’ve held many newborns, I felt like she would be so fragile.

Our first snuggle.

It happened to be time for her diaper change and feeding, so the nurse was at her bedside. She asked if I wanted to change the diaper, and of course I was excited to get right to work being a Mom.  But even though I’d changed a ton of diapers, once again I wasn’t sure what to do with such a tiny person. So the nurse walked me through a diaper change and taught me how to swaddle her. Then, I got to pick her up.  The nurses were amazing towards us and gave us all the advice and comfort we needed. For the at least the next few weeks, the NICU would be our home away from home, and the nurses understood that we needed to feel comfortable there.

My little girl was so tiny that even preemie clothes looked baggy on her. I picked her up in awe, and started crying happy tears. It was almost 24 hours after her birth and I was finally truly holding my daughter for the first time. It didn’t matter that I was in a busy NICU instead of my private room. I didn’t care about all the tubes and wires and machines and monitors and lights in that moment. It was just me and my daughter, finally meeting in person. She was just so precious. My Sweetie had already had some time with her and our parents had been into the NICU to visit before I was able to go, so I really cherished that initial time we had. Finally, we were all together as a family, and about to embark on the greatest adventure of our lives.

And baby makes three.

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Oral-Motor Therapy – In the Beginning

When I was first put in touch with the Golden Gate Regional Center, I expected my daughter would need Physical Therapy, but I had no idea that Oral-Motor Therapy (OMT) even existed.  The coordinator that met with me noticed that the Bean tended to stick her tongue out (called tongue protrusion) and suggested that we get her evaluated by an Oral-Motor therapist.  She said that tongue protrusion can have a negative effect on feeding, development of mouth shape and speech.  Let the education begin!  I felt overwhelmed, all of a sudden, with what I didn’t know about infant development and my daughter’s condition. 

We set up a meeting with the OMT office and a wonderful lady evaluated the Bean’s needs.  When I think back to that time, it amazes me how far we’ve come.   She was 7 months old when we started OMT.  I was having trouble introducing solid foods because everything just ended up coming back out of her mouth.  She wasn’t able to hold her own bottle, and still drank her milk lying back in the crook of my arm.  She was barely 15lbs, was still feeding at night, and her bottles were taking an hour to finish. 

The Bean had a lot of gross motor issues, which translated into problems with feeding.  When she sat up, she would hold her chin up and arch her back too much (extension), which made swallowing more difficult and made it easy for her tongue to protrude.  Her cheeks and lips were also very tight, which made her mouth look small and made it hard for her to babble and form new sounds. 

The Bean at 7 months

At 7 months, she wasnt able to sit on her own very well. In this picture you can also see how tight her smile was.

One of the first things we worked on was her body position in her high chair.  We stuffed towels behind and around her body so that she could sit more upright.  We put a rolled up washcloth behind her head so that her chin would tilt downward, and more washcloths beside her head so she wouldn’t tilt her head to the side too much.   All of this served to help teach her body not to arch back, and also helped her tongue to start learning not to stick out all the time.  To get a sense of this, try this exercise: 

  1. Stick out your tongue. 
  2. Tilt your chin up so that your head tilts back.  Feel the way your tongue actually pushes forward.
  3. Now tilt your chin down so it touches your chest.  Your tongue should pull back, and if you try to keep it pushed out, you’ll probably feel a bit of a cramp in your neck. 

We changed the bottles she was using to the kind with a bend in it, so that she could sit upright to drink her milk, thereby training her tongue to suckle the nipple while inside her mouth instead of between her lips.  It also helped a lot with her swallowing and she started to drink her bottles much faster. 

Tri Chew tool

The second thing we started working on at the beginning was teaching the Bean’s tongue to lateralize – to move from side to side.  In order to eat or talk, you need to be able to move your tongue in all directions in your mouth.  The Bean’s tongue only moved forward and back.  To train her tongue to do more moves, we used a tri-chew – a triangular teething tool with different textures on each side and at each point.   She loved chewing on that thing and it really worked!

The third thing we did was facial massage.  Since her cheeks and lips were so tight, I used a pen-like vibrating massager to loosen up those muscles.  I also massaged her soft palette (the top of the inside of her mouth) to make sure that it stayed smooth and rounded instead of getting a high peak in the middle from all the tongue thrusting she was doing.  Before she got teeth, I was also asked to encourage her to bite on my fingers by pushing down on her lower gums and then releasing.

Task number four was teaching her to eat from a spoon.  As it was, every time I brought a spoon to her mouth, I would scrape the food off the spoon using her top lip, and then she would promptly stick out her tongue and all the food would run down her chin.  We used a technique called parallel feeding to teach the Bean to use her lips to clear the spoon, and also to swallow with her tongue inside her mouth and with her mouth closed.  Stop again for a second and try this:

  1. Stick out your tongue
  2. Part your lips a little bit
  3. Try to swallow – it should be impossible
  4. Now close your lips around your tongue and try to swallow again – easier, right, but still not comfortable?
  5. Now pull your tongue back into your mouth and swallow again – ahh, now that’s what swallowing is supposed to feel like. 

Parallel feeding is a skill that takes some time to master.  It is also tough to explain in writing.  Basically, you feed from one side of the spoon, then flip the spoon around so they get the food on the other side of the spoon, and then flip it around a third time.  The idea is to switch sides quickly enough that the child learns to swallow the first bite before she can stick her tongue out again, in order to get the second bite when it comes.   I really wanted to include a video to illustrate my point, but my account doesn’t include video, so maybe I’ll add it at a later date.  In the meantime, if you are my friend on Facebook, you can see the video here

I have to tell you that all of these changes were a lot to incorporate into our lives.   I did my best to keep up, but feeding was hard enough without adding all the awkwardness of the different techniques, body positioning, chewing homework and massage.  I understood that in the long run, all the work would make everything easier, but I emotionally resisted the Oral Motor therapy right from the beginning.  I didn’t WANT everything to be this hard.  It seemed like I needed at least three hands to do what I was being asked to do on my own at home.  Feeding took up a large portion of our day, and it was embarrassing to have so much fuss around feeding when we were out in public.  At that time, I think I was still in denial that the Bean really had a serious problem.  Now, looking back on the pictures and videos, I can very easily see how different she was from other babies her age.  I just didn’t want it to be true. 

There is more to the OMT journey that I’ll go into in upcoming posts, but first, I’ll give you a sneak peek into the future.  Things got a lot better.  I got really good at parallel feeding, and so did the Bean.  We don’t have to do the parallel feeding anymore because she can clear a spoon with her top lip and swallows with her mouth closed and her tongue safely tucked inside.  The Bean’s tongue is rarely outside her mouth anymore, unless she’s doing her Tazmanian Devil impression.  It moves from side to side and up and down just fine now, and she pushes food onto her molars with that tongue, no problem.  Her facial muscles have also relaxed.  She has a huge, wide smile that shows up often on her face.  But the Oral Motor Therapy homework is still my least favourite.

The Birth of a Bean

The Bean at 22 weeks

In my 6th month of pregnancy, my OBGYN got worried that I wasn’t gaining enough weight – in fact, I’d lost some weight that month.  So he sent me for a series of ultrasounds to monitor the growth of my precious baby.  He also told me to stop working – I was not exactly on bed rest, but needed to reduce stress as much as possible.  I had been planning to quit my job anyhow, because we were moving to the Bay Area, but I had not been planning to quit 6 weeks before our move.  (We were scheduled to move a month before the due date to allow us to find a doctor and get settled before the big day.)  Luckily, I was able to go on short-term disability, which allowed me to rest and have time to go to all those ultrasound appointments.  The ultrasounds showed that the baby was healthy and strong, but was very tiny and was growing very slowly.  At 34 weeks, she hadn’t grown at all for three weeks, so my OB told me I was to report to the hospital that afternoon for induction of labour (side note: it was Friday, the 13th of March, and my sister’s birthday).  We had been planning a farewell party for ourselves the following day at our house, so we quickly called some people and told them the party was cancelled.  We also called our families and gave them a heads up – there would be a baby in the next few days. 

They started giving me the induction meds within an hour of arriving at the hospital.  Then I was shown to my private room.  My Sweetie stayed with me and slept on the pull-out bed provided for support people.  NOT the most comfortable place to sleep when you’re a big guy.  My middle sister, who has three older kids and lives on Vancouver Island, packed up the boys and hopped on the ferry right away.  She wanted to be there for the birth.  My youngest sister also came over from Vancouver Island and spent a few days

The week that followed was long and boring.  Sure, I had some great visits with my sisters and mom, but the induction just wasn’t working.  My sisters eventually went home without meeting their niece as they had hoped.  The baby was being monitored every 4 hours (even at night) and I was getting tired of lying around in the hospital.  On Thursday, 6 days after being admitted, I didn’t see the doctor all day.  It was such a busy day for births that they couldn’t afford for me to go into labour, so they didn’t give me the induction meds.  When the doctor on duty finally came to see me at 9pm, she gave me two options – keep waiting it out, or have a C-section the following day.  My OB was willing to stay late to do the operation, and there was a room available at 3pm on Friday.  After some discussion, I decided I was ready to be done with the waiting. 

The next day seemed to last forever even though people had come to visit.  Then suddenly, the nurses were there and it was time to get gowned up.  OMG, I was going to have major surgery and our baby was about to be born!   I hadn’t even considered the idea of a C-section during our birthing prep class.  I was going to have a normal birth, with all the huffing and puffing.  Our baby was small, so it would be super easy to just push her out.  Piece of cake.  Uh huh.  The best laid plans and all that. 

I was nervous going into the operation room.  It was a huge stroke of luck that my OB was available.  I’d liked him right from the beginning, and I knew he was good at his job.  But I don’t really do that well with needles.  I also have a tattoo (elephant) on my low back (tramp stamp location) and it turned out that it was in the exact place where they wanted to inject the anesthetic into my spine.  They had to start the needles above the tattoo (thank goodness it’s not that big), which resulted in me being numb right up to my lips by the time they were done.  Getting the needles into my spine proved to be a challenge.  I kept getting light-headed and almost passing out.  My blood pressure was dropping alarmingly, and the anesthesiologist was concerned for me.  So they finally laid me down and helped me to curve into a ball so they could finally get me frozen.  Then, it was a total breeze.  My legs felt like they were spread wide, even though they were right beside each other on the narrow gurney.  They just couldn’t feel each other.  The doctor got right to work slicing me open.  He was joking around at the same time as being completely professional with the nurses.  He warned my Sweetie (who had been admitted to the room after they laid me down and put up the curtain between my face and the proceedings) when he was about to pull our baby out, and Sweetie stood up and took the best picture of our little girl protesting the sudden change in her circumstance.  I’ll spare you the photo – it’s a bit gory.

When the Bean was born, she was admitted to the NICU almost immediately after being pulled from my belly.   After cleaning her up and doing the initial weigh and measure (under photographic supervision by Sweetie), they brought her up to my face and let me touch her.  The nurse held on tight because I was in no condition to safely hold a baby, and took her away much too quickly.  The doctor sewed me up while telling the nurse about his plans for going to the gym after work (for some reason, I found this highly amusing), and I was wheeled to a recovery room until I could wiggle my toes.  I felt like Westley from The Princess Bride after his encounter with the machine that sucked out his life.  I could think, although my head was fuzzy, but I couldn’t move.  I concentrated very hard on getting those toes to wiggle – I wanted to see my baby.  The nurse who was keeping an eye on me was kind and understood my need to get into the nursery.  As soon as was humanly possible, she signed the order for me to go.

I was still lying on the hospital bed.  I didn’t have the strength to get up, and besides, I had a 6-inch incision across my lower belly, so any movement was impossible.  But I turned my head to see my tiny daughter in her incubator, and was able to reach my hand through the side holes to touch her skin.  This time I was the one who was ripped away much too quickly, but I’d just had a major operation and needed my rest.

That night was brutal.  I was on some pretty strong pain meds, and this really sweet student nurse kept coming in to see how I was doing.  It took a while for the feeling to come back to my whole body, and when it did, even the pain meds couldn’t help me if I tried to move.  The nurse kept asking me if I could try to sit up.  Every time I tried to move, I would get light-headed.  I finally made it to the sitting position, but couldn’t get off the bed.  I can’t remember exactly why, but it was important that I be able to get up and go to the bathroom – they needed me to have a bowel movement before something else could happen.  That night was a bit fuzzy. 

What I DO remember very vividly was what happened when I finally managed to get out of bed.    The nurse had come to check on me, and I told her that I thought maybe I’d been sweating a lot because my bed was really wet.  When she took a look, it turned out that the tube had fallen off my catheter, and urine had been draining out of my bladder straight into my bed.  I was lying in a pool of pee.  Lovely.  Even at the time, I found this morbidly hilarious.  It was clear that I now needed to try to get out of bed so the sheets could be changed. 

 I very slowly made my way up to sitting with the help of the mechanics of the hospital bed, and the nurse helped me to stand up and change my gown.  I shuffled across the room to my bathroom and managed to sit down on the toilet.  I was feeling very nauseous and light-headed sitting there.  Suddenly, the garbage can became a puke bucket.  I’d insisted on eating earlier in the evening (they wouldn’t let me eat until I passed gas – yah, gross, I know) and of course cheese and crackers were on the top of my wish list.  Well, there went my snack.  I collected myself and when the bed was ready, I stood up to make my way back to bed.  Halfway between the bathroom and my bed, I tossed my cookies again, all over the floor.  That’s when Sweetie woke up.  The cleaning folks came and took care of the mess immediately and I went back to bed feeling kinda sheepish about the cheese I’d insisted on.  Perhaps some plain saltines would have been more appropriate, but I hadn’t eaten in 24 hours.  We made it through the rest of the night without further mishap, and then my new life as a mother truly began.