Preemie essentials (for bringing home baby)

Bringing home your preemie is exciting but nerve-wracking. After spending all that time watching the NICU monitors alerting every episode of bradycardia and apnea, you feel a bit anxious about “unhooking” your baby. The important thing I kept reminding myself was that they would not be sending my baby home if she wasn’t fully capable of breathing by herself and regulating her own heartbeat. Here are some of the things we found most helpful in the first weeks at home with Harper.

preemie essentials top ten must have items1. I mentioned Dr. Brown’s bottles in my NICU essentials post. It was what our nurses recommended for reducing reflux, and Harper never did have an issue with reflux or spitting up. 4oz bottles will be plenty big in the beginning. Harper started on a preemie nipple when she was first learning to take a bottle, but by the time she was discharged she had graduated to a level 1 nipple..

2. You will likely need to fortify bottles if you had a preemie, even if you are breastfeeding. We used Similac Neosure (there is also Enfamil or whatever your doctor recommends).

3. A multivitamin with iron was recommended to us by our NICU docs and pediatrician. Preemies don’t have enough stores of certain vitamins and minerals like a full term infant, and therefore need a daily multivitamin.

4. Dr. Brown bottle warmer. This is my absolute favorite bottle warmer. It’s digital, which makes it super easy to set an accurate time to warm different volumes of milk. We’ve tried the Munchkin brand as well, but it doesn’t compare to this one.

5. Microwave sterilizer – so awesome and easy to use. We use it to sterilize bottles, pump parts, pacifiers, teething toys, etc. Keeping germs at bay is essential with a preemie, especially in those early weeks at home.

6. Angelcare monitor. Honestly any baby monitor will do, but due to the aforementioned apprehension we wanted this one to alert us if she were to stop breathing.

7. Breastmilk storage bags. If you are breastfeeding, it may take quite some time for your preemie to catch up to your supply. This means you will need to freeze and store a lot of milk. My favorite are the Lansinoh because they freeze relatively flat. (I found the Medela bags to be bulky, even after removing all the air.) The thinner, flatter Lansinoh bags stacked well in a drawer (a shoe box also works well) in the freezer. I put my newest milk in the back which makes it easy to take the older milk from the front.

8. Hand sanitizer. Baby is leaving the safety bubble of the NICU, and entering the real world. It’s ok to ask well meaning friends and family to sanitize their hands before touching or holding your babe. They know what you’ve been through and they won’t be offended.

9. Preemie sized diapers. Our developmental therapists said it was important to have the appropriate size diaper so you don’t spread their hip bones. For many preemies being discharged, even newborn diapers may be too big.

10. Swaddleme infant wrap. Preemies get used to being swaddled in the NICU to give them that snug feeling of being in the womb. A SwaddleMe or Halo sleep sack works well.  We preferred the SwaddleMe in the warmer summer months because it was thinner cotton and didn’t seem quite as warm. They also run a little small, so Harper fit well in the small/medium size even though she was only 6.5lbs when we brought her home.

Other thoughts:
There were a lot of doctor’s appointments in the early weeks at home. Because Harper came home on oxygen, it was a bit bulky lugging around her oxygen tank, a diaper bag, and car seat. Having a stroller that the car seat snaps into made it easier to get from the car to the doctor’s office (especially with a toddler also in tow). Also, people love babies. Rightly so – they are precious! I never thought I’d be that mom that didn’t want people touching her baby, but with a preemie susceptible to germs, you just can’t be too careful. I found a car seat canopy to be helpful in discouraging any unwanted contact, and as an added bonus, shielding Harper from unexpected coughs and sneezes. Before bringing Harper home I also stocked up on saline spray, mylecon, and baby Tylenol in addition to the other baby hygiene essentials.

I felt anything but prepared to care for my sweet baby girl without the aid of our wonderful nurses and doctors. However, we made it through the transition (by the grace of God!), and each week got a little easier. My goal is not to give advice, but to share our experience in hopes that it may be helpful. I was certainly grateful to everyone who shared their NICU story with us during this time!

* You can find my NICU essentials post here.

Advertisements

NICU essentials

Having a baby in the NICU was something we were not at all prepared for. I’ve been approached by friends with loved ones in similar situations and asked if there were any items I found useful while Harper was in the hospital. I rounded up the things I thought were helpful to serve as a reference. Having a baby in the NICU is tough, but having these things can at least make you feel a bit more comfortable during this time.

NICU top ten essentials must haves

1. It was several weeks before Harper was able to start breastfeeding, and even then she didn’t take much milk. The first thing I did after being discharged from the hospital (besides going to see my baby girl) was rent a hospital grade pump. It was recommended by my lactation consultant to establish and keep up my supply while exclusively pumping. I used a Medela Symphony. They had some available for use at the hospital, but I needed one to keep at home as well. I already owned a Medela Pump in Style, which I kept in Harper’s cubicle at the hospital to make pumping a little more convenient (that way I didn’t need to worry if all the hospital pumps were in use). The hospital where I delivered and the NICU both supplied me with extra pump accessories. This is so important because it cuts back on how many times you have to wash and sterilize the pump parts.

2. Since I was hooking myself up to my pump every few hours, making it as easy as possible was imperative (for my sanity). By using this Easy Expressions bustier, I was able to use my hands to surf the web, check my social media, read, write thank yous, etc. Being able to do something to pass the time made pumping *slightly* more palatable. By the way, I got mine in white so I could bleach the milk stains out of it.

3. Harper didn’t start bottle feeding until about the last week she was there, and the NICU provided her first bottle. However, they recommended Dr. Brown’s bottles with a preemie flow nipple. Preemies are more prone to reflux, and Dr. Brown’s bottles are good for reducing that as much as possible. We had used Avent bottles with Noah (and use them now with Harper), but in the beginning, the Dr. Browns bottle were great. Even if you plan on exclusively feeding your baby breastmilk, you will still need to fortify some of the breastmilk with formula and give it by bottle.

4. A cooler bag with an ice pack is a must-have for transporting breastmilk from home to the hospital. The NICU provided a decent-sized Medela one, but having a cute one makes it a little more enjoyable, plus it can double as a lunchbag or daycare bottle bag later. As far as milk storage goes, the NICU provided me with small plastic bottles called snappies to store my milk in, along with labels to record the date and time. Preemies don’t need much milk compared to what you are pumping, so make use of the NICU’s freezer to store it. I ended up donating quite a bit of mine to Mother’s Milk Bank since there was no way Harper could use it all before it expired.

5. Sterilizing pump parts is a must. I quickly learned how important being sanitary was to protect a vulnerable preemie from germs and sickness. I washed and sterilized my pump parts after every use. At home I used my Avent microwave steam sterilizer (super easy to use), but when on the go I used a Medela microwave steam bag. The NICU provided a couple of the Medela bags, and they are reusable up to 20 times.

6. I checked out several books about preemies from my local library, and found The Preemie Primer to be the most helpful one. The author, Jennifer Gunter, is an OB-GYN who delivered her triplets at 22 and 26 weeks, and gives a lot of insight to the healthcare system and explains a lot about the health and development of a preemie.

7. Between the frequent pumping, practicing nursing, and the kangaroo care, being comfortable is a must. These Basic Stella nursing bras are so comfy, and easy to slip on and off for pumping. These Be Maternity camisoles from Target were awesome for kangaroo care. I would actually lay Harper on my chest and then pull the camisole over her to keep her warm and snug. As an added bonus, they are really smooth to the touch, which made infant massage a lot easier during her developmental therapy sessions.. I had three from my maternity wardrobe, and always kept one at the hospital.

8. A journal or notebook was handy to have. I kept a daily log of Harper’s progress, including weight gain and other milestones. I also used it to jot down other thoughts and record her birth story while it was still fresh in my memory.

9. It was awhile before Harper could wear preemie clothing. They had little kimono style jackets they would put on her. This was due in part to her small size and also because she had to have a stable temperature before she could wear clothes. The NICU had a lot of preemie outfits, but I also brought a few from home because I was excited to dress my little girl. Ideally the clothing should have snaps and open feet to accommodate all the leads and the pulse-ox on baby’s foot. I also didn’t like slipping anything over her head because we had to remove her oxygen cannula each time. Hats help keep baby warm (plus they’re super cute). Toward the end of Harper’s stay they started using sleep sacks instead of all the NICU bedding. I got Harper a preemie sized Halo swaddle sleep sack to use at home. Swaddling helps give preemies containment that makes them feel safe, and keeps their limbs in a more flexed position at midline, like they would have been in utero.

10. Staying hydrated is a must when nursing, and the NICU only allowed closed/covered drink containers. They also had an ice and water machine, which I made good use of, but I would take my favorite cocktail of ginger ale and cranberry juice in an insulated tumbler.

I’ll discuss some other points worth considering as well. Before you can bring baby home, you will need to have an appropriate car seat. If your baby is very small, you may need to buy one with a very small weight limit. We already had a Graco Snugride 35 car seat that we used for Noah (accommodating 5-35lbs). Fortunately Harper fit in it just fine and passed her car seat challenge (90 minutes in the car seat with stable oxygen and heart rate)  – she was about 6.5 lbs when she came home, but they send babies home much smaller than that. For extremely little babies you may need to get a special car bed.

If your baby is born during flu season, be sure to inquire about Synagis shots to protect against RSV. They may be covered by insurance depending on birthweight and other risk factors. Also ask your hospital social worker about Supplemental Security Income (SSI). This is a government program that provides assistance to some at risk babies. They will send you a monthly check while your baby is in the hospital, but the biggest benefit is that if your baby qualifies for SSI, then he/she may also get Medicaid benefits, depending on what state you’re in (which can help reduce costs tremendously even if you have private insurance). Also ask your social worker if your baby qualifies for the Early Intervention program. This is a free program for at risk babies through age three which will provide access to occupational therapists, physical/developmental therapists, and other professionals.

Other practical points to consider: having meals prepared for you, childcare (if there are older siblings) while you are at the hospital, professional house cleaning service, car detailing service, are all extremely helpful. Gift cards to restaurants nearby the hospital also came in handy. Don’t be afraid to accept help when people offer, as difficult as it may be to swallow your pride.

If you are going to have a lengthy stay, some pictures or simple decorations around the baby’s cubicle can add a personal touch and make it feel less sterile. Our nurses did a great job of making cute little signs with Harper’s handprints and footprints. I also kept a few granola bars in my bag along with my wallet, because you never know when you will become ravenously hungry or if you may need to stay at the hospital longer than anticipated. Usually a snack would get me by, but I ate my fair share of meals in the cafeteria there as well.

I hope this is useful advice for anyone going through a NICU experience or who has a loved one in that situation. Please don’t hesitate to comment or contact me if you have any other questions! I’m working on another post to share the most helpful items we had in the early days at home with Harper.

* Update: You can find my Preemie essentials post here.

Harper’s birth story

On February 21st I was 27 weeks, 3 days pregnant. It had been a blissfully easy, healthy pregnancy. No morning sickness. Good energy levels. My OB sung my praises for eating right and keeping up with my regular exercise routine. I was truly enjoying being pregnant this second time around. I woke up that morning around 5am concerned that I hadn’t felt the baby move all night. I started counting kicks, and finally felt a series of kicks from 6-6:30am. I dismissed my concern as being a neurotic pregnant woman, and got up and got ready for work.

We had a lunch meeting with one of our contact lens reps that day. At lunch I started noticing a lack of fetal movement again. I called my OB’s office and was seen that afternoon at 3:15pm. They performed a fetal non-stress test. Everything came out normal. The baby was moving again, I wasn’t having any contractions, and I was due back for my 28 week visit in five days. Not much could happen before then, right? Wrong.

That evening at 7:04pm I started having contractions. They were brief at first, but each contraction became progressively longer and more intense. They started happening every 5 minutes. Then they were every 3. After about 20 minutes, I called my OB’s office again and spoke to the doctor on call. She said it was “probably nothing” but she would go ahead and meet me at the hospital where they would likely give me something to “calm my uterus down.” Blake was concerned. I rarely complain about how I feel, so he knew something was up. We called our neighbor to come stay with Noah (who was already in bed) and Blake drove me to Parker Adventist Hospital. The trip there only took about 15 minutes, but it felt like an eternity. My contractions were coming every few minutes and getting stronger and more intense. Something was wrong. This wasn’t normal, and we were both nervous.We got to the hospital just before 8pm. Blake dropped me off at the door, and I checked in while he parked the car. I was shown to a triage room to gown up and leave a urine sample. By the time I got out of the bathroom Blake was already in the room waiting. His belt had just broken and he was trying to see if he could fix it. He couldn’t.

A few minutes later, a nurse came in. She wanted to swab my cervix to do a fetal fibronectin lab. She went to swab my cervix, but couldn’t find it. She hustled out of the room, and the OB came in with her a few moments later. The OB took a look and then her expression turned grim. “Oh, man. You’re already 7cm dilated,” she said. “Can you stop the labor?” I asked. “We’ll do what we can to slow it down,” she assured me. I tried to hold back tears. “Will my baby be ok?” The OB looked uncertain and said, “We’re going to do what we can to help.” This was not the answer I wanted to hear. My thoughts quickly turned to what the future was going to look like for our family. Would we be able to handle the loss of this child? And if this baby lived, would she be normal? Visions of a special needs child in a wheelchair flashed through my mind. “Oh God. Please let everything be ok,” I prayed silently but fervently. When I could finally bring myself to look at Blake, it broke my heart. His face was white. He looked as frightened as I felt. “Call my mom. Ask her to pray,” I told him.

From that point forward it was a blur. There was a nurse giving me a steroid shot in my backside. “This is to speed up the baby’s lung development,” they told me. They inverted my bed so my head was below my feet to take the pressure of my cervix. Then they put an IV line in and inserted a catheter (an empty bladder puts less pressure on the uterus). They gave me magnesium (“To protect the baby’s brain”) and antibiotics (since I tested positive for Group B Strep in my last pregnancy) intravenously. They dimmed the lights to help me relax. They offered me an epidural at some point in there. “Will it slow down my labor?” I asked. “No, not at this point,” they replied. So I declined it, thinking to myself, “If for some reason this baby doesn’t make it, I want to feel the pain of birth before I feel the pain of loss.” For about 20 minutes my contractions lessened in intensity and came less frequently. This all had happened while we were still in the triage room. My OB sat by the bed and told me that if I were to deliver sometime in the next four days, my baby would have to be transferred to the NICU at University hospital. Parker didn’t take babies younger than 28 weeks. She noted that my contractions had let up and wondered if I could be transferred to University. I told her there wouldn’t be enough time. My contractions started picking up again. This time they were incredibly painful. I told my OB and the nurses, they had me roll onto my left side to help me relax. Blake had been holding my hand for quite sometime at this point, and gave it a reassuring squeeze. They tried talking me through it, but then I felt the baby moving down the birth canal. “The baby’s coming! I can feel her coming!” I told everyone.

When the doctor felt the baby’s head, she knew I was serious. A team of about eight nurses seemed to appear out of thin air. Because we were still in the triage room, they had to roll me down the hall to a delivery room. I was feeling the need to push but they instructed me to wait. They got my bed in position and dimmed the lights again. They had no sooner brought my bed up (I was still inverted) and got my feet into the stirrups when I couldn’t hold it in any longer. I gave one big push, and out came the baby. Harper Elizabeth was born at 10:04pm, completely contained in her amniotic sac. We would later learn that this was very rare, especially in a natural birth (“The first time I’ve seen it in my 13 years of practice,” a neonatal nurse practitioner told us). To be born inside the unbroken amniotic sac is called an en caul birth. Throughout history in many cultures, being born en caul was a sign that the child was destined for greatness.

Harper cried when she was born. I took this as a sign that she would be ok. I didn’t even get to see her up close for several minutes. As soon as she was born, they whisked her away and started working on her. She weighed 1163 grams (2lb 9oz) and was 15 inches long. A nurse came and asked for Blake’s cell phone to snap a picture before she was intubated. Her APGAR score at birth was 6, and at five minutes it was 8. This was remarkable, as she wasn’t intubated until 7 minutes of life. They say Denver babies never make a perfect 10 due to the altitude.

2-21-14 Harper's first picture

After some time, they rolled Harper’s bassinet over to my bedside. “Would you like to touch her? You can touch her before we take her to the NICU,” a nurse offered. I reached over and touched her tiny little hand. Blake touched her too. Blake went with her to the NICU, at my insistence. Suddenly the room was empty and quiet. The room was dark, as no one had turned the lights back up, and I was just sitting there alone and scared. I was too numb to cry or truly feel the depth of all the emotions in my heart at that moment. I suddenly had a case of shivers, even though I wasn’t cold. I was still in shock.

At some point during the whole process Blake had managed to notify our family, some of our church friends, and our workplaces. Blake’s parents were already on their way to take care of Noah and relieve our neighbor. My parents were coming first thing next morning (they had just driven back to Steamboat from Denver earlier that day). My friend Grace had texted to ask if everything was ok. I called her back and told her what happened. As soon as she found out Harper was being transferred and Blake was going with her, she told me she was coming to stay with me that night. I didn’t want to inconvenience my dear friend (who happened to be 9 months pregnant at that time), and insisted I was fine to be alone. But I wasn’t. I didn’t know it at the time, but I really needed her that night. It was the scariest night of my life, and I’m so glad she was there.

After awhile, maybe 30 minutes or so, a nurse came in to get me cleaned up. Blake came back as well. I found it surprisingly easy to walk to the bathroom without an epidural. She got me changed, and took me in a wheelchair to the NICU with Blake. They wheeled me up to Harper’s bedside. I got to touch her again and look at her tiny little body beneath all the tubes and wires. The neonatologist came and talked to us. He mentioned surfactant and a ventilator and said some other things I was too shell-shocked to remember. The nurse who wheeled me in offered to take me to my room, but I wanted to wait until the transport team came for Harper. I didn’t know if that would be the last time I would get to see my baby girl.

2-21-14 seeing Harper in Parker NICU 2-21-14 Harper Parker NICU

After about half an hour, they took me to my room where Grace was waiting for me. Blake got Harper’s birth certificate paperwork filled out while we waited for Harper to be transferred.

2-22-14 birth certificate 2

Eventually the transport team stopped by my room so I could say one last goodbye to her through the plastic box, and then they were off. Blake also left to head to University and make sure Harper would be ok. By this time it was about 1:00am. I asked for a pump. There was little to do besides wait to be discharged. And pump. Grace and I talked, and she comforted me with stories of preemies she knew about who were now happy and healthy children. She told me that Harper’s weight was promising and that a recent lecture she had attended had said babies with a weight like Harper’s were very unlikely to develop retinopathy of prematurity. We tried to get some sleep, but I was texting Blake and pumping and ended up getting very little rest. Bless Grace’s heart, she parked her 37-weeks pregnant self on the terribly uncomfortable sleeper sofa and was a reassuring presence to me all night. She even brought me snacks, slippers, and a robe.

2-22-14 waiting to be discharged

The next morning my OB came back in to check on me. She could tell I was anxious to get out of there and see my baby, so she got my discharge paperwork started. Grace and I ordered breakfast. Blake was back at the NICU seeing Harper, but was coming to pick me up afterward. A lady came by to do a hearing screening and looked confused. “Where’s the baby?” she asked. She looked embarrassed and murmured something apologetic after I explained what happened. Grace spent all morning on the telephone hunting down a Medela Symphony pump for me. Blake came and gave us an update on Harper. They were able to take her off her ventilator and transition her to CPAP. She got a second dose of surfactant that morning. She was on a 9-1-5 care schedule, and we would be able to make it to her 1:00 cares after being discharged. Finally, around 11:00am the nurse was ready to walk us out.

Being discharged from the hospital without a baby was difficult. I had somehow managed to keep it together up until that point, but when we started walking down the hall to leave, I couldn’t stop the tears from streaming down my face. Not two years prior, I was leaving that same hospital with a beautiful, healthy baby boy. Now walking out without my new daughter, feeling so uncertain about her future, just reminded me of how different the situation was this time.  The grief hit me like a ton of bricks.

Thus began our 60 day NICU journey, which is another story in itself. They never did find a reason for my preterm labor. The pathology labs on my placenta and umbilical cord, and a post-partum ultrasound showed nothing abnormal. All I can say is that we had an amazing support system throughout all of this. I don’t know what we would have done without everyone’s kindness and prayers. God was faithful to see us through this difficult time and keep our baby girl healthy. It’s still too fresh in my memory to look back on this time without stirring up some raw emotions, but one day I will be able to share this story with Harper about her dramatic entry into the world and her remarkable start in life, and we will marvel at how far she’s come.