A Journey Through the NICU

I feel the need to start this post with a warning. So consider yourself warned that this will be a long post. I struggled with breaking this into several parts or shortening it, but decided to just write until I felt I capture the 5 toughest weeks of my life adequately.

It's hard to put into words exactly what it was like having the girls in the NICU. Throughout the pregnancy I had prepared myself for this journey knowing that given the statistics the girls would spend some time in the NICU; however, I don't think there is anyway to truly prepare yourself to have a child stay in the NICU. It reminds me of a quote I saw on Pinterest:

"Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body".

That is exactly how I felt. For 33 weeks Hadley and Hailey had become a part of me. Not just figuratively or emotionally speaking, but a true physical part of my body. I had completely forgotten what it was like to not have them literally attached to me, and I cannot describe the longing I felt for them after they were born. The first few weeks were rough not being able to hold them and to be torn whose bedside to sit by. I found myself hobbling from one incubator to the next fighting the urge to just rest from my c-section, because I had to be with them. Something few people understood. A small hole just big enough for my hand was as close as we could be. I felt so helpless, but was so grateful they were born so healthy. I never for a moment took for granted how blessed we were to have two healthy babies in the NICU. As tough as it was for me, when I would look around the NICU at the other babies who were there because they were sick and not just born too early or who were born early because of other more traumatic pregnancy complications than just a multiple birth I felt lucky. Our girls just needed a little more time to grow and develop before coming home, but their prognosis was beyond wonderful. Also, this was not my first encounter with the NICU. Both of my nephews unfortunately spent some time in the NICU, and while I didn't experience it first hand my sister-in-law was a great comfort and resource throughout this journey. It was nice to be able to text her and know she could relate on a level others couldn't to what I was going through. I am blessed to have her and my older brother, and it was nice that my mom wasn't too freaked out by the girls being in the NICU since she too was familiar with the process.

With Hailey

I was discharged from the hospital just two days after they were born on my birthday. Happy birthday to me. It was the most empty feeling leaving the hospital to go home without our girls. It was difficult just being home surrounded by all their unused things and seeing their half finished nursery. I am so grateful we lived literally around the corner from the hospital and it was so easy for me to come and go from the NICU. I could not imagine having to drive any amount of distance to go to the hospital nor do I take for granted the amount of time I was able to spend at the NICU. I became good friends with the nurses and learned about so many of their lives. At times I actually miss our daily chats. That is another thing I am so grateful for the nurses and doctors that did what I couldn't do for the girls in those 5 weeks. We had some bad nurses, and that was frustrating and difficult to leave the girls in the care of someone you didn't trust, but the good nurses far out weighed the bad thankfully.And I won't be able to replace the encouragement and advice they gave to me during the most difficult time of my life.

Now I would like to take the time to just say how amazing Paul was during this whole thing. As I mentioned in a previous post, Paul was in the middle of his surgery rotation, the most time consuming rotation of his medical career. Paul only took one day off from his whole rotation during this time. I am so grateful to Dr. Castro the girl's NICU doctor who encouraged Paul to continue full force with his rotation while the girls were in the NICU. It truly was the best thing he could do for them and our family. I still don't know how he was able to work his 14-16 hour shifts 5 days a week and half days on either Sat or Sun on only 4-6 hours of interrupted sleep (I was getting up to pump breast milk every three hours. On a side note it is much easier and more enjoyable to wake up to a crying baby than to an alarm clock). I never once felt neglected by Paul throughout this whole process, and I am sure the girls didn't either. We truly are blessed to have him. I am sure this journey was rougher on him in ways I'll never be able to understand.

Paul with Hadley

It's funny what things parents of non-NICU babies take for granted. We were excited for every chance to interact with our girls. I cherished diaper changes (and still do) even if I did have to become proficient at doing it through the windows of the incubator.  During those 5 weeks I would've given anything to be able to just walk in and pick up my child whenever I wanted.  That was very difficult; having to wait for instructions on what interaction was ok for your baby on that particular day and with the particular nurse you had. Each nurse was different. Some were more lenient than others with allowing you to hold the girls and take them out of the incubators and some weren't.  I think one of the hardest things for me was having to watch the nurses do things I so desperately wanted to do like give the girls their first bath. I missed out on a lot of firsts with them in the NICU. I also grasped at any opportunity to give the girls "their" things. I loved that they could have their own blankets on top of the incubators and was so excited to put them in their first outfits. For the first 3 weeks everyday was exciting and the girls were making leaps and bounds of progress very quickly. They were taking food by mouth after a week and a half and were able to wear their own clothes. After two weeks they no longer needed oxygen support, and after three weeks they were moved out of their isolation tanks into real cribs!! It seemed like every time I walked into the NICU the girls had made progress which was very encouraging.

Watching one of our favorite nurses give Hailey her first bath

This is how we had to hold them for the first week and a half and we were only allowed to do so when they were being weighed or their bedding was being changed.

Changing Hailey's diaper for the first time!

Paul demonstrating the diaper change with the incubator closed on Hadley. This is how we had to change diapers the majority of the time. It was rare to have the incubator open like in the picture above with me and Hailey.

Holding them for the first time. Me with Hadley and Paul with Hailey. It was tough being so far away from each other and also not being able to hold both of them. I cried when the nurse made me choose which one I wanted to hold first. It was an impossible choice and luckily Paul made it for me. I couldn't do it.

Finally sitting closer together. Me with Hailey and Paul with Hadley.

Ahh. Together again.

Feeding Hadley her first bottle

Feeding Hailey her first bottle

Hailey in her first outfit.  This day was a surprise. I wish they would have told me in advance that they would be letting them wear clothes because I would've gotten them special outfits. Oh well.

Hadley in her first outfit.

Finally in a real crib

 Once they were in their cribs things slowed down significantly. All of the sudden we went from making tons of progress to just holding steady. I was and still am grateful for no regression. I know many babies in the NICU can regress, but our girls never did. Weeks 3, 4, and 5 were the toughest for me. One of the rules for going home was that they had to go 5 days without any bradycardia episodes (dips in heart rate) or 7 days without any apnic episodes (stopping of breathing). It seemed like we would go 4 days without an episode and then they would have just one and we would start all over again. It was very frustrating. What was frustrating as well was it was semi subjective as to whether or not they were having true episodes and once again some nurses were more lenient then others. Even though I knew God had a plan for them to come home and His timing would be perfect I found myself for the first time becoming angry at our situation during theses weeks. However, I was also dealing with some significant health issues of my own during this time. Which looking back I am grateful that girls remained in the NICU while I sorted out my health issues.

My health issues began when I first began expressing milk to be taken to the girls in the NICU.  The lactation consultant and I became concerned that I had unusual bleeding while expressing. Needless to say my doctor didn't like it either and she ordered an ultrasound. The ultrasound revealed that I had a small lump in one of my milk ducts that I would have to have biopsied. I was nervous to have the biopsy done because I really wanted to try and breast feed the girls. However, my doctors assured me that having the biopsy done would not interfere with breastfeeding and that it was imperative to determine if the lump was cancerous or not.  Thankfully the biopsy results came back negative for cancer, but positive for an intraductal papiloma. The doctors still wanted to remove the lump as it can at times promote/mask cancerous growth within and around it.  Unfortunatley, the doctors were very wrong about the biopsy affecting my ability to continue to breast feed. I developed a terrible infection secondary to a milk fistula that developed from the biopsy site that never closed, and was placed on antibiotics for 24 days. After, the 24 days the infection had only become worse and I had to stop breast feeding to get the infection to go away before it spread to the rest of my body :(  I was very sad about this and felt defeated. Also, the doctors had never encountered this complication before, and weren't sure how to treat it which was scary. But once again I was grateful to the wonderful nurses and doctors who were very encouraging and supportive to me while I was dealing with my health issues and trying to take care of the girls in the NICU. I could not have gotten through it without them or Paul who thankfully was able to come to all of my doctors appointments without taking more than his 3 allotted days off thanks to the great team of surgeons he was working with.

But enough about me. Since the girls continued to plateau in progress the doctor decided to run a test called an OCRG to determine if they would go home on monitors and oxygen or if they could go home without them. The test took 8 hours and we weren't allowed to interact much with the girls while it was being done. It took three days to get the results, and we were ecstatic to find out Hadley passed with flying colors. Hailey didn't do too poorly, but our doctor was very cautious and determined she needed to go home with an apnea monitor and on oxygen. That was confusing to me since she hadn't been on oxygen for 2 1/2 weeks while in the NICU, but I wanted my baby home so I was willing to do anything to get her there. Unfortunately, Hailey couldn't get her equipment and boy was it a lot of equipment until the next day so Hadley got to go home first.  Thankfully we were able to return in less than 24 hours to pick up Hailey and learn how to use her equipment. We were so blessed to have them come home less than 24 hours apart. While in the NICU we watched two other sets of twins go home weeks a part from each other. I could not imagine being able to take one baby home and not the other for several weeks.  

Hadley coming Home!!

Hailey finally coming home!!

While it was an extremely tough time and indescribably painful to be apart from the girls for those 5 weeks, looking back now it seems so far away.  One of my favorite things to do is to look back and reflect on events in my life to see God's hand and timing in it all. God truly does have perfect timing and he orchestrated every detail of the girls birth and NICU stay perfectly so that we all could get the care we needed at the times we needed it, and so Paul could finish his surgery rotation.  I am happy to report that he did very well in his rotation and impressed the residents he was working with.

I would also like to thank our family and friends for being there for us. For listening when I needed to vent or cry. For coming to give me a ride to the hospital to see the girls when I was still hocked up on pain pills. For providing us with meals while I was on bed rest that we were able to continue to use while the girls were in the NICU. And in general just praying for us.  Thank you!

Oh and Dasher was so excited to finally meet "the babies" Paul and I kept running off to go see. I am happy to report he loves them and is so sweet and protective of them. We are lucky to have such a kind and caring little puppy.