On Thursday, May 2nd, our wonderful little Patrick turned TWO! While this blog is mainly to share information on Natalie, I’d like to take a moment and talk about Patrick!

These past few months have been trying and exhausting and yet, Patrick’s strength and positivity have never wavered. When mommy was admitted into the hospital, he turned a tough situation into a new adventure. The hospital became a second home to Patrick on his own accord. He quickly learned how to get to mommy’s room, which buttons to push on the elevator, all while smiling and saying ‘hello’ to everyone he passed. I don’t know how I would have survived my 3 weeks in the hospital, early delivery, and recovery if he had struggled with the changes. His smiles brightened our darkest moments. His hugs gave us strength when we were feeling weak. We love how excited he is to visit ‘his baby’ and can’t wait for him to be able to be with ‘his baby’ 24/7. Patrick, thank you for being you! We are the luckiest parents in the world to have you as our son. We love you TWO the moon and back!

On Monday afternoon while at work I got a call from the hospital. The RNP Nancy asked if I could do a 72hr stay to work on infant driven feeding, basically, having Natalie dictate her own eating schedule and work on breastfeeding. Thankfully, with the support of my boss, we worked it out that I would do my 72hrs from Wednesday through Friday. The thought of the 72hr stay stressed me out initially. I hate being away from Patrick but, luckily, now that flu season is over, he can and did visit everyday for dinner. The 72hr stay was wonderful for the fact that I had extra Natalie time. I just love our time together and I always struggle with leaving her so it was amazing to not leave her for 72hrs. She did improve with her cueing. She, for the most part, would wake up crying due to hunger right around the 3hr mark. She would make rioting actions with her mouth and even a few times by bringing hands to mouth. She has a wonderful latch unlike her brother who started out as a piranha. Unfortunately, while she has a good latch, she barely sucks which means she isn’t getting food. The most we got in the last 72hrs was 3mls of milk in a feeding. Needless to say, she has a long ways to go. The nurses keep saying that at some point it’ll just click but I’m disappointed. I was so hoping this 72hrs would work miracles for her eating. I wasn’t expecting her to take 100% of her feedings orally in the 72hrs but I was hoping we could at least get 70%. Unfortunately, on a good day, we only got 3%. We will keep trying and the nurses have the ok to continue trying bottles. Whatever it takes to get her fed orally. While I feel a bit defeated in terms of feeding, at least I had 3 amazing days with my daughter. Leaving today was so so hard. It’s hard juggling a baby in the NICU and a toddler at home. They both need love and attention and it’s hard to find the balance but I just remind myself that every day is one day closer to her coming home.

Our Easter was magical. Why, you may ask? Well, it was the first time our family of 4 was in the same room at the same time. That’s right…Patrick finally had a chance to meet his baby sister!!

It was the sweetest thing. Mommy/daughter sleepover night is Saturday night so that Sunday morning, Ben brought Patrick to visit. Patrick walked in and immediately walked over to Natalie’s crib. He was so excited to peak inside and see his sister. That excitement was quickly overshadowed by his dinosaur Easter basket holding his favorite treat, yogurt melts. Having our family all together was amazing. We can’t wait to have Natalie home where we can all be together. While we have no idea when she will be able to come home, each day we are one day closer. Be ready to have your heart melt at these two!

One of the best parts of having a private room is that we can now have sleepovers. Ben was the first to have a sleepover on April 18th. Here are some pictures from that first sleepover…

Midnight snacks. Natalie gets milk, daddy gets milk and cookies!

Post bath hip hairstyle

Snuggles with daddy while dreaming of running a marathon

Natalie turned 2months on the 12th. I have never had two months of my life feel equally slow and fast. The life of a NICU parent is unlike anything else.

Natalie had a big month of firsts. She wore clothes for the first time, she moved into a big girl crib, moved off of CPAP, and was able to be held by non-nurses and non-parents. She is growing more and more everyday. She has officially doubled her birth weight (and then some). For her second birthday, she got an incredible gift, she moved into a private room. Moving up to the 11th floor and into her own room is one step closer to coming home. It also allows Ben and I the opportunity for sleepovers. Our little warrior is thriving.

So the big question on everyone’s mind…when is she coming home. The answer is still up in the air. The hope is still that she will be able to come home by her due date of May 8th, however, she has 3 tasks to accomplish in order to come home. 1) she needs to take all of her meals orally. 2) she needs to gain weight by orally feeding. 3) she needs to go 5 days without an apnea spell (we have yet to make it 1 full day). We are told that all this could happen quickly and are reminded she is still young. We have also been given the heads up that she will probably be sent home on oxygen. Keep us in your prayers and send good vibes that she will be home come May 8th. We are anxious to have our family of 4 all together.

Major steps were taken this week. On Wednesday they moved Natalie back onto low flow oxygen. This, of course, made Ben and I super nervous since the last time they tried low flow oxygen she wasn’t ready, needed to get bagged, and was put back on CPAP within 24hrs. Being on low flow oxygen is a huge step towards going home because babies can’t practice oral feedings on other types of oxygen. Well, in true Natalie spirit, she exceeded our expectations and is rocking low flow oxygen. She still has her apnea spells, which is not uncommon for preemies, but she is thriving on low oxygen.

On Thursday, since she was doing so well on the low flow oxygen, the doctors gave me the okay to practice nursing IF she is awake and giving cues. I was so excited I stayed at the hospital extra long hoping to practice. At around 3pm, Natalie was wide awake and giving small cues she was hungry. Lactation was called and we got to try nursing. I’m not going to lie, it was like a breastfeeding comedy routine. Her mouth is so small we have to use a nipple shield and the shield kept coming off. It was kind of a mess. However, Natalie got a good latch and gave three strong sucks. It was so exciting though I worry I’ll end up with a little barracuda like Patrick. After 3 sucks they started her feeding tube feeding because, it was not only time, but that way she also gets the idea that latching and sucking will lead to a full belly. Well, once the feeding started she then noticed the lights on the ceiling and was too preoccupied watching those. It was still so exciting to get to try nursing. So far, Thursday has been our only trial run at nursing. Every visit since she’s been a sleeping beauty. I’m so anxious to keep trying to get it mastered so we are that much closer to going home but I also have to keep reminding myself that she is still young and it’s not unusual that she’s not fully there yet. Hopefully we can get more practice in soon. Until then, I will enjoy the sleepy baby snuggles! Here are some pictures from Thursday.

Ben and I would just like to take a moment and thank you all again for your love and support. Every ‘like’ to a post, every message, text, call, or stop in the hall means so much to us. This past week was the last of our meal train. We can’t thank all those enough who provided meals. It was such a huge help to not have to worry about food. It seriously took a huge burden off of us and we are forever thankful. Our GoFundMe is still going and we are humbled by every donation. These donations will be a huge help as the medical bills have started to come in. The saying ‘It Takes A Village’ is so true and we have never been more thankful for our village. Natalie is so lucky to have such a strong, loving, supportive village behind her. From the bottom of our hearts…thank you!

https://www.gofundme.com/natalie039s-journey?pc=ot_co_dashboard_a&rcid=a6af02b40c854fea95b02fb688812c5a

When I was first admitted into the antepartum unit at Masonic, my doctors told me that they would not let me go past 34weeks as it was safer to deliver Natalie at that point than keep her in utero with no fluid. That night I looked at the calendar and mentally marked off March 27th as my goal date. March 27th is when I would have hit 34 weeks exactly and, after talking to other antepartum moms, figured that would for sure be Natalie’s ‘eviction date’. However, my body clearly had other plans and instead of going into a csection, on March 27th, I went in for my 6 week postpartum appointment. It’s still crazy to us that our little Natalie is 6 weeks old and yet still 6 weeks away from her due date. Natalie has had a rollercoaster week. She was doing well but then, mainly during her snuggle times with mom and dad, she would get so relaxed, she would have an apnea episode and stop breathing. It’s not uncommon for preemies, especially her age, to have episodes of apnea. While these episodes are scary, the doctors weren’t super concerned, and on Wednesday they moved her straight from CPAP to low flow oxygen. The usual trend is to go from CPAP to high flow and then to low flow. They skipped the middle step and went right to low flow. It went fine for a bit but due to apnea spells they put her on high flow by the evening. Unfortunately, that night while Ben was holding her, it just got to be too much and she had so much trouble coming back from an apnea spell that they had to bag her. They moved her back onto CPAP after that spell. She is currently averaging about 1-2 apnea spells a shift (8-12hrs). Other than these apnea spells, she is doing well. She takes almost 9oz of milk a day, is 1oz shy of weighing 4lbs, and has quite the personality. Apnea spells like this are super common in preemies, especially her age. They do think hers are a bit more common because she has a growth in her nares (nasal passage). Her left nare is about 70% blocked. ENT is hopefully with age that the blockage will decrease. Hopefully in the next week or so we can try going to high flow oxygen and then to low flow. Once she is on low flow we can start nursing. She has come so far in these 6 weeks. I look at her every day and am reminded that she should still be inside me, growing and developing, and yet here she is, this spunky little warrior. She truly is a miracle.

Thursday was Superhero Day at the hospital. All the NICU babies got capes that said ‘Wee Warriors’. There is no truer statement. Here are some fun pictures from the day!

We have said several times that the NICU journey is a rollercoaster full of ups and downs. Monday was a perfect example of just that.

During my Monday visit, the first thing I noticed was that Miss Natalie had her mask off and was using a nasal cannula with her CPAP. That morning she had a head ultrasound and therefore needed to be off the mask in order to get a good picture. She did so well with the nasal cannula that they kept her on it. It was an exciting step. We also got the results that her head ultrasound was perfect. The bright spots that could have indicated brain damage are gone. More great news! And then, the cherry on top, after our mommy and daughter cuddle time, Natalie’s nurse Cheryl asked if I wanted to dress Natalie. And so, that’s just what I did.

Unfortunately, after all the ups, then came the downs. That evening Natalie struggled with her breathing, so badly that at one point they had to bag her. That night they moved her back onto the mask to better support her breathing. They also took her out of her clothes. On Tuesday they were able to figure out why she struggled with her breathing. Natalie was getting her feedings 3hrs for 30mins. It seems that 30min feedings were too fast for Natalie. They have since expanded her feedings to 1hr every 3hr and that seems to have made a huge difference. Hopefully she can go back on the nasal cannula soon but for now, she is back on the mask. Those are the big updates thus far. Thank you for following our journey!

Here are two more pictures from Monday just for fun!