Our NICU Experience with Premature Twins

Our NICU experience with premature twins started when my boys were born at 31 weeks old. Levi was born weighing 3 pounds 5 ounces and Noah weighed 2 pounds 8 ounces. My miracle babies are currently 19 months old, healthy and happy! We are blessed.

(Before you read on, if you haven’t checked out our pregnancy and birth story, click the links below:)

Finding out I was likely going to have premature twins-

Immediately after hearing from my Maternal Fetal Medicine (MFM) doctor that the babies would be born early, I began researching “premature babies in the NICU.” I wanted to know what to expect so I could be as prepared as possible for what was to come.

The thing about research is, you always stumble on the scariest situations which makes your mind race about everything that could go wrong. I started reading other mom’s blogs, looking for stories similar to our own. Just searching for positive stories to get through the days of not knowing when my babies would enter the world.

I’m writing this post for a couple of reasons. The first is for my own documentation. Secondly, if you are a mama who is going through what we did, I hope you find some hope and comfort in our story.

Our NICU experience…

Our babies were “feeders and growers” as they are called in the NICU. The boys were small, but mostly healthy. During their time in the NICU they needed oxygen support, Levi had a blood transfusion after catching a very scary stomach infection and everything seemed to be a very slow process. It total, we were there for 47 days. Levi left the NICU on day 38, and Noah on day 47.

Spending time with the boys-

The NICU was a 20-mile drive from our home. My husband and I drove to the hospital each morning and stayed through the evening. My husband was able to work remote at this point, which made it possible for us both to visit the hospital each day to see the boys. My husband would visit with the boys off and on throughout the day, then log onto his computer and work from the hospital cafeteria. While it wasn’t an ideal work-space, he made it work.

Kangaroo (skin-to-skin) time-

From the day we were able to hold the boys, until to the day they left the NICU (minus a few days due to medical issues) we had skin-to-skin time with the boys. I truly believe this is extremely critical to developing a connection and helping the baby along. We found a mountain of studies on the power of Kangaroo time and the benefits it provides the baby. We took full advantage of this beautiful opportunity.

All the emotions-

To say it was an emotional roller coaster is an understatement… It was HARD. Leaving our children each night while someone else cared for them was not only hard….but heartbreaking. Pumping in the middle of the night, without my boys, was hard. Post-pregnancy hormones and a lack of sleep is hard. BUT, completely worth it to have healthy babies home with us now.

Connecting with the boys-

To be completely honest, it took some time to make a strong connection with my boys… I knew I loved them, however, I didn’t feel that “motherly connection” until after they came home. We spent 47 days in the NICU and the connection didn’t start until after… I felt so guilty like something was wrong with me. I loved being with them and holding them each day, but kept longing for that deep, loving feeling everyone says is instant after a baby is born. That was not the case for me. BUT. That would not stop me from trying to get there. I held them, talked to them and kissed them as often as I possibly could. Today, the connection is stronger than ever! It just took time with our situation.

Pumping/breastfeeding-

This could be (and might be) a completely different post because I pumped for 14 months and nursed for about 10. I started pumping an hour or two after the boys were born, and continued every 3 hours for quite a while. Waking in the middle of the night to pump instead of nurse was a really…sad feeling. I wanted my babies home so bad, but knew I was doing what was best for them, so I continued to pump.

Since I was able to pump, I did it for as long as it made sense for us. Pumping while your babies are in the NICU is a weird experience. I didn’t get to breastfeed until right before the boys were released from the NICU, so the pump went with me…everywhere. I would pump, fill the bottles, and take them to the NICU each day. The nurses would give the boys what they needed and store the rest for future use. At the end of the boys NICU stay, they sent me home with a freezer full of unused milk (this came in handy when my supply went down!!!).

Medical Issues-

For the most part, our boys kept very healthy. They both needed oxygen to support breathing and they both had jaundice for a short period of time. The boys were in closed incubators, hooked up to temperature probes. Levi and Noah had feeding tubes through their nose/throat for most of our time there. Levi caught a stomach infection around the third week of our NICU stay that was healed with an antibiotic. This resulted in a blood transfusion, but he recovered quickly. Noah was attached to the oxygen for a longer time, but was able to wind off it prior to leaving the hospital.

Neither boys had any medical issues after leaving the NICU. At about 8-months they needed cranial helmets due to flat spots on the back/sides of their head, but those are off now and their heads look MUCH better.

Keeping a Journal in the NICU

During our NICU stay, I kept a journal and wrote down everything I felt was important. This was super helpful!! I encourage you to do the same. It helped me keep track of all of the little things! Doctor conversations, weight gains, feedings..I wrote it all.

Most of what I’m writing below came out of the journal I kept. So, if you want more specifics of our NICU stay, keep on reading!

The boys arrival day. 5.11.18 – Journal Entry

Immediately after the boys were born, they were taken straight to the NICU. My husband, Jack met them in the NICU and I was sent off to the recovery room.

Birth Weights-

Baby A- 3 lbs 5 oz
Baby B- 2 lbs 8 oz

After a few hours of recovery, I was finally able to visit the NICU to see the boys. They needed assistance breathing, so they were hooked up to a nasal cannula, which helped deliver oxygen. They also had an IV inserted into their belly buttons to provide nutrients. Finally, they had a feeding tube which went through their mouth, into their stomach.

Watching your babies being kept alive by a number of machines is so incredibly scary and makes you feel completely helpless. However, we were so thankful they were both doing well considering how early they came.

We weren’t able to hold the boys, as the doctors wanted them to become more stable. Since we didn’t have names for our babies at this point, the doctors called them “baby A” and “baby B.” Our little baby A was in an open incubator while baby B was in a closed incubator (this was more to do with availability than need.) We were able to sit by them, but unable to hold them while they continued to fight and gain strength.

5.12.18 – Journal Entry

Both boys were doing well. I started pumping and producing colostrum (the first milk you produce after giving birth). I wasn’t producing much, so “baby B” was given colostrum while “baby A” received donor milk. (This continued for a short time until I was making enough for both boys to receive the colostrum.)

We are focusing today on the babies eating and growing! Nurses increased their feedings and added proteins and carbs to their diets.

We were able to touch them today, but still unable to hold them.

5.14.18 – Journal Entry

Both boys were under the jaundice lights today to help get rid of bilirubin in their bloodstream. This is common with babies born before 38 weeks’ gestation. They are doing well and the nurses have increased their feedings again!

I’m still staying at the hospital. I’ll be released tomorrow. I’m ready to be home but not without my babies.

5.15.18 – Journal Entry

Today we left the hospital…without our babies. This was by far the hardest day since the babies were born. I can’t even put into words how this day felt. I didn’t have that mom feeling at this point, since I hadn’t been able to hold my boys and we still hadn’t finalized names yet. A part of me felt missing. We went home with all of the pumping supplies, and I got up every 3 hours to pump. Not to nurse my babies, but to pump. 🙁

5.16.18 – Journal Entry

The boys finally have names!!!

Although calling the babies “baby A” and “baby B” felt normal by now, but it was time to officially give them names. Our “baby A” is Levi William Rix and “baby B” is Noah Gordon Rix. We had a hard time coming up with boys names, but we came up with these names after a lot of internet searches and baby books. (Levi’s middle name was the name of my Grandfather, and Noah’s middle name is the same as my husbands, which is a family name.)

Boys are no longer under the jaundice lights! The doctor was able to remove the IV’s out of their belly buttons. A good day for the boys!!

5.17.18 (day 7 in the NICU) – Journal Entry

We got to hold the boys today!!!

Finally, we were able to hold our babies for the very first time.

It was at this point when I finally started to feel a deeper connection with them. As a first time mom, I gave birth, then had my babies taken away from me. My husband and I would visit them in the NICU, but it still hadn’t sunk in that we were parents. I was pumping and bringing milk to the babies each day, but that deep connection hadn’t yet been created.

Holding them in my arms felt amazing. The boys were still hooked up to oxygen and a feeding tube, so there were wires everywhere, but I was finally holding them and that’s all that mattered.

5.18.18 – Journal Entry

Boys feedings increased again. I got to kangaroo (skin-to-skin) BOTH babies TOGETHER for the first time .

Levi got off of his oxygen today. Noah still needs oxygen support, but the amount he needed was decreased (which is great).

5.19.18 – Journal Entry

Jack (my husband) got to Kangaroo with both Levi and Noah for the first time!

5.20.18 – Journal Entry

Noah got off the oxygen today!!

Boys are doing great, continuing to focus on feeding and growing. They started physical therapy today. The PT will help the boys with movement of their legs and arms, and will continue 2-3 times per week. Noah didn’t care for it…Levi didn’t seem to mind.

5.22.18 (day 12 in NICU) – Journal Entry

Both boys received an ultrasound to check for internal bleeding. This is a common ultrasound the doctors perform with preemies in the NICU. Noah’s was normal. Levi had minimal bleeding, so they will follow up and perform another ultrasound before Levi goes home. The doctors aren’t worried at this time.

Noah was having trouble breathing so he went back on oxygen. Today we couldn’t hold him. 🙁 I felt horrible leaving him in his incubator, while we were able to hold Levi. Mom guilt has started.

Levi is having some issues with breathing as well. He has periods of time where he stops breathing and his heart rate drops. This is fairly common for preemies. He has been resolving the breathing on his own (most of the time), so the nurses aren’t going to do anything yet, but he may need to be back on oxygen or his feeding tube may need to be moved from his mouth to his nose.

In the evening Levi was still having drops in heart rates so the nurse moved his feeding tube to his nose. This should help his breathing.

Speaking with the doctor- Today we were told that Noah will most likely be in the NICU for about 2 weeks longer than Levi. Noah is still very small and will need more support than Levi. My husband and I expected this would happen, but its still not fun to hear. Taking one baby home and leaving the other is NOT going to be easy.

Boys current weights: (After babies are born, they normally drop in weight then start gaining again. This is why both of the boys weights are still so low)

Levi- 3 lbs 3 oz
Noah- 2 lbs 8 oz

5.29.18 (Day 19 in the NICU) – Journal Entry

One of the scariest days in the NICU.

Today we arrived at the hospital and saw Levi with an IV in his arm, and an inflamed belly. The doctor called when we were on our way to the hospital, but I missed the call. They wanted to give us a heads up but unfortunately we didn’t get that heads up…

An x-ray showed that Levi had an infection, causing his stomach to become inflamed. They withheld Levi’s feedings so they could run blood work. They didn’t know what caused the infection. His red blood count was down, which was showing anemia. His heart rate dropped multiple times throughout the night and into the morning. The doctor said it COULD be Necrotizing Enterocolitis (NEC).

NEC is an intestinal disease among premature babies. It happens when the small or large intestine is inflamed or injured. This could cause a hole in the intestinal wall. If this happens the intestine can no longer hold waste, and bacteria can be passed through the babies bloodstream. Without going too far into it, it can get VERY scary.

Since the doctors weren’t sure what they were dealing with or if it was NEC, they wanted to start an antibiotic right away to help with the infection. We agreed to start the antibiotic, although it scared me so bad to give it to him. I like doing things as natural as possible, but being ignorant on medical needs and having limited time, I put my trust in the doctor.

We stayed at the hospital all day and left that evening. Leaving him was even harder than normal. It goes without saying we didn’t get much sleep that night…

5.30.18 (Day 20 in the NICU) – Journal Entry

We got to the hospital very early to check on the boys.

Levi did well throughout the night, but was very fussy. He still hasn’t been given any food, so he’s hungry and unhappy. His morning x-ray looked good. His belly wasn’t as inflamed today. The doctor said the infection is not NEC (THANK GOD) but isn’t sure what caused the infection. He’s still on the antibiotic, but should be completed tomorrow.

Levi’s tests are still showing anemia. His red blood count is very low. The doctor said he would need a blood transfusion around midnight to increase the number of red blood cells. This was another issue I was not prepared for. Of course I googled risks associated with blood transfusions, but the doctors said that the benefits of the transfusion outweighed the risk involved. Again, we had to put our trust in the doctor.

Another sleepless night, worrying about our baby.

Noah is still on oxygen, but is doing well. They increased his feedings again, which is great!

5.31.18 (Day 21 in NICU) – Journal Entry

Levi’s infection is gone! The doctor stopped the antibiotic and Levi will be able to eat this afternoon. Poor baby still hasn’t eaten. He’s been getting fluids through his IV, but no food. The blood transfusion went well. The feeding tube was placed back through his nose so he could get milk. The doctor said they would run labs again tomorrow to see where his levels are.

Noah doing well!!

6.4.18 (Day 25 in the NICU) – Journal Entry

Levi attempted his first bottle today!

Levi tried his first bottle today! During the feeding, his oxygen levels continued to drop so the nurse had to finish the feeding through his tube. We were so happy they tried the bottle though! It’s one of those exciting milestones in the NICU.

Current weights:

Levi- 3 lb 15 oz
Noah- 3 lb 4 oz

Noah’s temperature probes were removed today! YAY! That means a few less wires attached to his little body.

Both boys have begun pulling out their feeding tubes… the nurses have to keep reinserting them during feeding times. I think they are sick of having tubes down their throats! I don’t blame them.

6.6.18 (Day 27 in the NICU) – Journal Entry

Levi took 29 ml of a bottle today and has reached 4 pounds!!!

The doctors don’t want to try bottles with Noah quite yet. They don’t think he is strong enough at this point. Hopefully soon!

6.9.18 (boys are about 35 weeks) – Journal Entry

Noah tried his first bottle! His oxygen dropped during the feeding so he will only try 1 bottle a day until his oxygen stops dropping. His oxygen drops because his body is trying to suck and breathe at the same time and its a lot of work for such a small baby.

We got to bottle feed Levi for the fist time today. He finished his whole bottle! We are proud parents! 🙂

6.10.18 (day 31 in the NICU) – Journal Entry

Levi moved to a crib today!! Another exciting NICU milestone!

Levi moving to a crib means he is that much closer to coming home. As long as he continues breathing on his own and taking bottles, he will be coming home soon!! He is currently taking a bottle, twice a day. We get to dress Levi in real baby clothes tomorrow!!

I got to nurse Levi for the first time today. He latched fairly quickly and nursed for about 10 minutes!

Noah is doing well with bottle feedings, but hasn’t taken a full bottle without his oxygen dropping. We will keep trying a bottle per shift, which is twice per day.

Current weights:

Levi- 4 lb 6 oz
Noah-3 lb 10 oz

6.15.18 (day 36 in the NICU) – Journal Entry

Levi is taking a bottle every other feed at this point. He ripped his feeding tube out (once again) so the doctor is considering bottles for every feeding to see how he does.

Today, the doctor said as long as Levi continues to do well tonight and into tomorrow, he will be released from the hospital SUNDAY!!!! Jack and I are both excited and terrified!!

Noah’s oxygen was removed today! The doctor wants to monitor his breathing and hopefully he can be moved from the incubator, into a crib.

6.17.19 (day 38 in the NICU, Father’s Day) – Journal Entry

Levi is coming home today!

Both boys had labs run and are showing anemia. Noah’s red blood cell count is low, so he may need a blood transfusion. The doctor will monitor Noah for the next few days. (Noah did not end up needing the transfusion.)

Levi passed the “car seat test” and is coming home with us tonight!

Today was another hard day leaving the NICU. We are thrilled to be taking Levi home, but leaving Noah behind is beyond difficult. We are trying to figure out what our schedule will look like with the boys being separated.

What ended up working: Before bringing Levi home, I had been waking up every 3 hours to pump. Now that Levi was home and on a 3 hour feeding schedule, we continued to wake every 3 hours to feed him. Jack fed Levi, while I pumped. This was extremely tiring, but so worth it.

6.18.18 (Day 39 in the NICU) – Journal Entry

We didn’t sleep much last night and are eager to get to the hospital early to see Noah.

Noah was having trouble breathing through the night, so he has to get his oxygen cannula back on. The doctor will take it off in a few days and let him try again. He said some babies go home with oxygen, and Noah may be one of those babies. 🙁

I’m trying to figure out a feeding and pumping schedule now the nurses are no longer responsible for Levi. Today, a nurse fed Noah, while I fed Levi (they are still on the same feeding schedule). Once Levi fell asleep, I brought him into the pumping room with me so I could pump. When I was finished pumping, I was able to hold both boys. While this is not ideal, we can make it work until Noah comes home.

6.20.18 (Day 41 in the NICU) – Journal Entry

Noah’s oxygen was removed today. He is doing great without it! The nurses will be increasing the amount of bottles he gets during the day. Crossing our fingers for his crib move in the coming days!

6.24.18 (Noah’s day 45 in the NICU) – Journal Entry

Noah moved to a crib today! He is doing great regulating his body temperature and taking bottle feedings. My mom was in town visiting and was able to hold Noah for the first time!

I was able to practice nursing Noah for the first time. He had trouble latching, but a lactation nurse helped and he was able to get a little bit of milk.

6.26.18 (Day 47 in NICU- Noah comes home!!) – Journal Entry

The day we have been waiting for! Noah is taking bottles, breathing on his own (without any oxygen support) and is up to 4 lb 7 oz! He passed his “car seat test” and although tests show he is anemic, he does not need the blood transfusion the doctor said may be needed.

Now, we need to figure out what life is going to look like with twins at home, and without the support of doctors, nurses or nearby family!

Our NICU Experience with Premature Twins

Finding out I was likely going to have premature twins-