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At just over seven months old, we are finally celebrating August being home longer than he was in the hospital! For Matt and I it is very significant that his life at home has FINALLY surpassed his life in the hospital. Thankfully we have settled in well, August is thriving, and we sometime don’t even remember the difficult time in the hospital. Though at times it feels good to put our experience behind us, other times I find myself feeling guilty about “forgetting” about it. It was such a significant part of our lives, good or bad, and I feel it should always be honored. Writing about our experiences in hopes of helping other NICU parents is a way for me to continue my mental recovery. And why not start with something lighthearted to celebrate our recent milestone.
You know you’re a parent of a NICU Graduate if:
- You turn on the garbage disposal to get your baby to fall asleep. Yes, they are crying because it’s too quite.
- You don’t mind being “house bound” since you’ve been in the hospital for days/weeks/months and almost forgot what your couch feels like.
- The first time a stranger in the doctor’s office waiting room asks how old your baby is you lie, and tell them “he came home this week.” You don’t want to get into a long story when you they tell them he’s actually 4 months old and they comment about how small he is.
- You secretly smile when you catch said stranger checking out your lack of still looking pregnant (I can only say this because I’ve been through alot… I would still trade a terrible 40+ week pregnancy for what Auggie went through.)
- You think the advice to “sleep when your baby sleeps” is ridiculous… who’s going to make sure he’s still breathing?!
- You position your baby to breastfeed being careful of the phantom cords and leads that you think are still attached.
- You don’t even flinch when your baby gets their first vaccine in a doctor’s office, you’ve seen them endure much worse and already know they are a total champ.
- You give props to moms who take care of a newborn WHILE recovering from a delivery or section. All moms should get at least two weeks to recover before having to do anything but breastfeed a baby.
- You re watch Grey’s Anatomy and realize how terribly they portrayed a NICU.
- After being brave enough to bring your baby out in public, you can’t believe how many people you lied to in one outing, about his age. You’re not ready for all the questions yet.
- You keep double checking that your hospital bracelet is still on each time you wash your hands, which is about 24 times a day.
- You don’t believe nipple confusion in a thing. From early pacifiers to learn sucking, then trying to breastfeed, to hospital bottles, to whatever you’re now using at home, your baby has tried it all and likely masted at least some of those just fine.
- You don’t know what to do with yourself that first week when there are finally no doctors appointments to attend.
- You finally start telling the truth about his age and prematurity, to raise awareness.
- They finally smile, for real this time, a few weeks to a month or so after they come home and you cry all the tears because of the miracle of that smile.
The hospital isn’t a great place to set up for a Mom Son craft project, especially a messy one. Mother’s day was the perfect occasion to get my creativity going again with a super fun project with August.
First we gathered our supplies:
- Receiving blanket you don’t care much about to protect the floor
- Make-up sponges to dab the paint
- Regular non-toxic acrylic craft paint
- Paper towels, damp towels, and baby wipes for clean up
- Happy Baby (or sleeping baby)
In the hospital when I did his tiny hand print on a baseball I covered his hand in petroleum jelly before adding the paint so it would wipe off more easily. I tried this again, but since we made a bunch, it didn’t do much. And his skin is not as delicate, so the baby wipes alone were sufficient.
I wanted a variegated color look – so we dabbed yellow to green to blue with the make-up sponges on his feet. The more paint the better they came out.
All done. I actually had more paint on my arms from August kicking me than he had on his feet and legs! I think it helped that he hasn’t discovered his feet yet. I’d imagine this would be much more difficult with a baby who is reaching for their feet.
I just used a black sharpie to free hand the butterfly bodies and antennas.
A comparison of his five month footprints to his one week footprints. The quarter helps with scale – his toes were so tiny!
The old blog was mostly about our adventures a couple and our DIY home improvements to our 1920’s bungalow. Sharing August’s nursery finally brings back our love of DIY and mixes it with our new love – our very special little guy.
We had always planned to find out ahead of time if we were having a boy or girl. I wanted to find out so we could either get very boy decor in the nursery or a very girl decor. The plan was always to keep things like the furniture, rug, curtains, and walls neutral and add accessories and bedding for either a girl or boy. Either way we wanted a “Backyard Adventure” feel to the space and were planing on more bugs for a boy and if it was a girl garden fairies. Instead of just finding out the sex to finish the nursery, we actually got to meet August and finish his nursery while he was in the NICU. Behold:
Curtains: a DIY I did two years ago with fabric from JoAnn’s.
“A” Artwork: A custom piece from an Etsy seller who happens to be local.
Animal Friends Artwork: A gift from and Etsy seller, but looks like the shop is no longer open.
Chipmunk Artwork: Handmade by a family friend
Room Paint Colors: Trim (not sure – it’s an off white that the homeowner before us used) Ceiling: Behr Wave Crest, same color we used in the upstairs guest room. Walls: Benjamin Moore Edgecomb Gray. I decided the morning we were going to paint that I wanted to do the ceiling. I am so glad that I did. It is very subtle, but adds so much extra character.
Crib: A family heirloom (It was mine when I was a baby)
Floor Poufs: Target
Rug: Flor, we really love their products and have used them throughout most of our home. The design intent behind the rug is that it’s a play rug with the water, beach, and grass, without looking like one. We’re banking on August having a great imagination!
Changing Table: Matt built this from Ana White Plans. We changed the location of the shelf because a) we could and b) we knew we wanted to use the animal baskets and placed the shelf to fit them.
Animal Baskets: Ordered from Amazon – they are 3 Sprouts
Woven Baskets: The Container Store
All of the quick grab items, like bibs, hats, socks, onesies, pants, and receive blankets are in the different baskets on the changing table and in the bookcase. Pajamas and full outfits are in the closet that you can’t see in any of these photos.
Changing Table Organizer: This was a DIY and also used IKEA kitchen storage containers and faux plants.
Changing Pad Cover: Another Etsy purchase
It’s working really well having everything overhead. We’re hoping it’s high enough for when August is bigger… but we’ll also try to be sure he’s not standing on the table at any point. The diapers and wipes are in the basket, zinc diaper cream and lotion are in one of the lower flower pots and the other has a few toys to play with while he’s being changed. Since these photos were taken I’ve also added some paper pinwheels under the diapers so he has something to look at.
Green Furniture: Old family hand me down
Rocking Chair:Local Craft Fair.
When August begins crawling the rocking chair and side table will probably go. I really want to be sure his room is a safe place for him to play and the looks great, but it’s very climbable.
Mountain Walls: My sister found the idea of the mountains on Pintrest, This is the direct link to the project. Instead of adding other colors we wanted to stay neutral, we have so much other color in the decor and rug. The mountain colors from top down are the trim color, followed by Benjamin Moore Rockport Gray, then the wall color.
Crib Sheets: Land of Nod
And that’s it. I’m excited to see him grow with this room. It has so much potential to be quite the little boy adventure play space.
We know many of our friends and family we don’t see often use this blog for an update on August. He’s doing really well. He’s been home now for 9 weeks, it feels like it’s been forever, which is awesome.
Sleep: August is a great night sleeping, waking up either once or not at all. He still sleeps in our room, in the pack and play beside our bed. However, we are working on his napping skills during the day. Maybe he takes after his mom in this department. I am a terrible napper. But sleep = growth. So although we are so grateful he’s sleeping well at night, we need to make sure he can get some quality sleep during the day too. We’d love to see him sleep a total of 15 hours over a 24 hour period.
Eating: August continues to be a great eater. He’s not very picky when it comes to temperature or bottle type. We give him his vitamins in a Dr. Brown bottle and then the rest of his feeding in a Munchkin Latch and both seem great. He’s still breastfeeding really well too. He’s still eating about every 2 hours during the day.
Growth: August has been climbing the growth chart. When he came home his weight was in the 15th percentile for his corrected age and it’s now just above the 30th. He’s getting tall too! Though, at his development checkup with the neonatologists we recently learned his head isn’t growing as fast as the rest of him. It’s something they will now watch much more closely and we may need to have a nutritional follow-up if it’s still not improving. Head circumference equals brain growth so this is very important. He is however meeting all his milestones for his adjusted age. If he wasn’t we’d be more concerned. There is always something.
Development: August is enrolled in Early Intervention and started last week. We really like the therapist we’ve been assigned. She will help August meet all his milestones for his adjusted age (of currently 2.5 months) and then eventually get him caught up to meeting milestones for his actual age sometime next year. So far he excels in personal care (eating) and he has top-notch communication skills! We are currently working on lots of tummy time which he doesn’t mind and side play to encourage him to discover his hands. Just last week he’s started mouthing his hands more than ever before. And we’re continuing lots of babbling and face time, to improve those communication skills even more.
Mom has one more month home and we’re savoring every minute.
I’m writing this post for the mom I met at the end of our stay in special care. She doesn’t know about this blog, and will probably never find it, but I want to tell her that there is a reward for the dedicated. And she was dedicated. I met her briefly as our hospital stay with August was nearing its end. She was about six weeks behind me in her breastfeeding journey with her preterm son and she was frustrated. Oh so frustrated.
When I was pregnant my goal was to breastfeed. I had the support of my family and I had my sister to look up to. She breastfed her daughter until nine months when her goal was six. I know how difficult it was for her and was in awe of how she persevered. I never thought much about the health benefits. My biggest motivation was the convenience and closeness it would bring. I also never thought about how I’d feel or what I’d do if for any reason I was not able to breastfeed.
And then I had a micro preemie. My baby was whisked away to another floor of the hospital no less than ten minutes after I delivered him. It would be four more hours until I could see him again, four long days until I could hold him, and seven weeks until I could attempt putting him to breast.
My intimate breastfeeding experience started with a pump, the Medela Symphony. My breastfeeding needs quickly changed. Instead of a pillow I desperately needed a hands-free pumping bra. The lanolin was still a must, and I wanted a cover up since I soon found out critical meetings with the doctors would occur bedside while I was pumping. And of course, it was my amazing sister that showed up the next day with all of these things in tow.
Pump every three hours, they said. It’s common for mom’s under the stress of the NICU and without the closeness of their baby to have supply problems. We were given a pamphlet and asked to sign a consent that if I could not produce enough we approved the use of breast milk from the Milk Bank. August was born so early that donated milk would be covered by insurance. This is how critical breast milk is to babies this early, it protects their unfinished digestive systems. So I pumped every three hours consistently for weeks. At first it was for 15 minutes, then as directed, it was until the milk stopped. My breasts were so engorged between pumps. I was uncomfortable but knew how important is was. I desperately searched for a bra that fit to ease some of my discomfort.
And then Mastitis. I have to say that my favorite lactation consultants were the ones at the NICU, however they didn’t help spot my oversupply. I knew something was up when the nurses would nearly gasp when I handed them what I had just pumped. Turns out at my peak, which resulted in mastitis, I was pumping about twice what I would need, for a two-week old TERM baby. “A good problem to have” they all said. But my goal was to breastfeed my son when he was ready, and with a supply like that he’d be too overwhelmed. I slowly decreased pumping time, then frequency, it became a bit more reasonable, but I still struggled with engorgement discomfort and oversupply off and on until August was about 16 weeks old.
The pacifier is a very important therapy aid for premature babies. The suck reflex and act of swallowing is finessed by a baby in the last four weeks of pregnancy. It’s common for even babies born four weeks early to have some issues feeding by mouth. We worked with an occupational therapist weekly teaching August to suck on the pacifier. He wasn’t awake often, and couldn’t hold it in his mouth himself for quite some time, so during a care time we’d dip it in breast milk and hold it for him. He still uses pacifiers occasionally, but they aren’t something that stops him from crying. I’d still consider them a therapy aid, because when he’s disorganized, especially when he’s fighting sleep they give him something to focus on and seem to center him. Also, when we had reflux issues offering a pacifier after he ate helps keep the milk down.
Non-nutritive is something that hopefully most hospitals offer to mom’s who plan on breastfeeding their premature babies. Once August showed signed of rooting during meal times, and he was stronger with the pacifier, I was allowed to put him to breast after I pumped to “empty.” This is good for bonding…though looking back all this really did for me was increase my supply again. He was about six weeks old, 32 gestational weeks when I could start this. Imagine breastfeeding a three-pound baby! The NICU nurses actually let me try without pumping first when August was seven weeks old, it was pretty amazing to see, he was able to keep a latch for about three sucks.
The transition to the special care nursery ended up being harder than I thought, in ways I have never thought about. I hope to write more about that another time. I can’t say the NICU nurses didn’t warn me. The goal in special care is to get your baby feeding by mouth so they can go home. If they struggle with breastfeeding and bottles turn out to be easier, then that’s what they will do. I expressed my desire to leave the hospital breastfeeding August and I had the support of the nurse manager. But when you can’t be at the hospital 24/7 your baby ends up getting their first bottle from a nurse, not even his mom. It took us a while to get over this – but he was taking several feedings a day by mouth, and that means he was closer to coming home. I would attempt breastfeeding him when I was there, but we struggled so much. My supply was back up again,he was still learning and choking all the time.
An LC brought me a nipple shield, and told me to try that next time. At this point she had man handled me AND my baby’s head trying to get him to stay latched and I didn’t want anything to do with the LCs anymore. After two more bad days I tried it. I hated it. August loved it. It was such a pain to get on and keep on. I suddenly needed five more hands to feed him. But he was eating at breast, finally! And he was doing well enough with the nipple shield that I could finally enforce that I did not want him to be offered a bottle after nursing. This was another thing special care did. I clearly had plenty if August had the stamina to get what he needed. He wasn’t going to learn if we kept offering bottles after nursing, and at this point his average weight gain was fine. This was around 37 weeks gestational age.
It was time to choose a bottle that we’d use once he was home. He was doing ok on the hospital ones, but I wanted something to help keep the air out because of his reflux. The hospital recommended Dr. Browns bottles. We tried them a few times and it wasn’t anything special, they also have lots of parts to clean. I did my research and ended up choosing the Munckin Latch. It was designed to aid the breast to bottle and bottle to breast transition. It took about a week of the nurses using it with him at night until he was a pro.
Then I took off the nipple shield. I’d put it back on when he got frustrated. But I attribute this success to the Munchkin Latch bottle. He needed to work to get milk out of it, and the more they used that, the longer he’d breastfeed without the nipple shield, and soon we ditched it!
The frozen milk at the hospital was adding up. And since they had us freeze in bottles, I asked them to use it so I could bag what I was pumping to store at home. So they began preparing his night bottles with the frozen and he began refusing bottles! Apparently there is this enzyme in breast milk that some people have more of than others and it changes the taste of frozen milk. Just my luck. We had 45 liters of frozen milk in our deep freezer.
Donation was how I dealt with the frozen milk that August refused to drink. I was unable to donate to the milk bank because of my blood pressure medication, but I found Human Milk 4 Human Babies and I’ve been able to donate to three other moms.
40 Weeks is important. That’s when August was finally breastfeeding as if he was born to do it. When he came home just after 42 weeks gestation age we still had some issues with my over-supply and him choking. But we’ve turned to block feeding most of the time and are doing really well. I have happy tears almost every time, just thinking of how far we have come and how amazing he’s feeding. And he’ll take the frozen breast milk now! His pediatrician is also on board with our breastfeeding and dropped his added calories after he was home for jsut two weeks. His weight gain continues to be great.
Yes, this was a long post, but I wrote it in the hopes it will help other mom’s breastfeeding their preemies. We missed so much in regards to our pregnancies and deliveries that if you want to still breastfeed you should be able to. It will be harder than the average breastfeeding journey, but it’s possible. It just takes determination.
Time for a side by side comparison. This is August at 3 weeks old and today at 19 weeks. He’s four times the weight he was at 2 weeks! We are thankful everyday that we are his parents. He’s taught us so much about determination, patience, and love.
August is thriving at home. Since he’s been home he has been taken off all fortifiers, allowing him to take straight breast milk for all of his feedings. We can get 4-5 hour stretches from him at night. During the day he eats promptly every two hours. He’s spending more time awake during the day and we’ve recently been gifted the “social smile.” Parent’ of term babies usually get this reward after 6-8 weeks. We waited a long 18 weeks to see this, and I still cry almost every time he does it!
We have another weight check appointment next week, but after that he’ll be on a regular newborn appointment schedule! And very soon we’ll begin Early Intervention and meet the neonatologists for his first big development assessment.
And now for some more photos!