Jaxon’s NICU Journey

Well, here we go. This is the blog post I have dreaded to type for over a year. I am going to sum things up the best that I can. Or maybe I won’t. I don’t really know. I think writing this will also help with my healing process. Although there are some things I feel I will never truly heal from. Things have gotten a lot better over time and I am thankful for that. I may need to sit down with a glass of wine to get through this post. I know that a lot of tears will be shed as I type. Bare with me, it may get long.

Please also let me start by saying Jaxon spent 19 days in the NICU. While in the grand scheme of things this is not a lot of time, to me it was. I know there are plenty of babies who spend much longer time in the NICU and face many more struggles than he faced. To you fellow NICU moms, past and present, I salute you. All of you. Any time spent in the NICU is hard. Whether it be 5 days, 19 days, 50 days or 120 days. It is not easy either way you slice it. But to the longer NICU time moms, my heart goes out to you so much. Stay strong mama!

 

I shared my birth story with you almost a year ago in my post here.

I am going to pick up just a little before I left in that post. On December 29, 2016 at 33 weeks and 4 days pregnant I went in for my NST (non-stress test) and was sent over to L&D for a BP reading of 180/100. They could not get my blood pressure to go down after 3 doses of meds and told me I would not be leaving the hospital pregnant. My highest reading in the hospital that day was 182/126. I had no symptoms other than some ankle swelling and I was tired. Thank god we had the test that morning, otherwise Jaxon and I both would have likely died. They said I likely would have had a stroke. Especially given I had no symptoms it is even more scary to me. They gave me 2 steroid injections that day to help boost his lungs since he was coming early. On Friday December 30, 2016 I went in for my C-section and Jaxon was born at 2:43pm weighing 5lbs 5 oz at 33w5d gestation. He cried once and was whisked away by the doctors and nurses off to the NICU. I didn’t even get to lay my eyes on him and he was gone. My husband snapped a few pics of him on his phone and those were what my first look of my child was. Cell phone pics. I will spare everyone of these bloody photos from the OR. He was very blue looking in one of the last photos. Little did I know at the time, this is when he had stopped breathing. They did not mention this to us while I was on the table likely because they knew I would freak the eff out! I was taken back to my room for recovery and several hours later, the time escapes me exactly but I believe it was between 5:30pm and 7pm that I was wheeled in my bed over to the NICU to finally see my son. At this point he was on a CPAP machine to help with his breathing and that was covering the majority of his little face. At this point we were told we were not able to hold him as it was causing him distress when being held and his oxygen would go down when he was stressed. So I was told I would need to wait until the next day to hold my baby. After I saw him, my husband took my mom, dad and stepmom and his mom in one at a time to see him. The NICU only allows 2 people in at a time, one being a parent and one visitor. So not only did I miss out on seeing my child right after birth, I also missed out on seeing the looks of our family members when  they first got to lay eyes on him. This bothers me, a lot. I think it always will.

 

 

 

Friday night into later Saturday night I was puking on and off and in and out of consciousness. I don’t know if it was from the anaesthesia, or the mag they had me on or a combo of both but puking multiple times when you just got your abdomen cut open and stiched back up is no fun! Let me tell you! Finally early Saturday evening before dinner time they transferred us into the post partum unit. I finally stopped puking at some point that evening and I got myself cleaned up enough to go visit the NICU. It had been over 24 hours at that point since I had seen Jaxon. This was on Saturday December 31, new years eve. Hubby and I went over to visit and leave what little milk I was producing with the nurses. We were told we still could not hold him. At this point he was on around 30% oxygen. I told hubby I wanted to go back to our room because I was still feeling crappy and then come back to see Jaxon right before midnight so we could spend New Years with him. Now this is where a huge part of my major mom guilt comes in. We both fell asleep and forgot to set an alarm to go see Jaxon before midnight. Neither one of us had slept a lot the night before and we were exhausted so what should have been a nap turned into an all night sleep for us. At 5am on New Year’s day (Sunday) I was awoken to a knock at our hospital door. When the door opened and I saw the NICU doctor in the light of the hallway my heart dropped. I immediately thought she was there to tell me we had lost him. Thankfully that was not the case! However, she was there to tell us we had come VERY close to losing him. Not long after midnight, I am thinking around 12:30am if I recall correctly, his left lung collapsed (pneumothorax) and it took them 4 hours to work on him and get him stabilized. He had to be intubated and we were told we would again not be able to hold him while he was intubated. He had to have a chest tube placed as well. She explained that even though I was given the steroid injections to boost his lungs that they may not have worked. Or if they had worked it was only minimal. We spoke to her for a little bit and talked about how hubby had a pneumothorax at one point in his 20’s and at the time it made me feel a little better that Jimmy understood what it was. I was not there for my son and he almost died. I feel like the biggest POS when I think about that still til this day. It still makes me cry when I think of the fact that we could have lost him and I was not by his side.

 

 

By the following day (Monday) I was finally feeling much better and was able to shower by myself and ate a full meal for the first time since Thursday morning before being admitted. We were back and forth to the NICU a lot more by this time but still unable to hold Jaxon and he was still intubated. During all of this time he also had jaundice and had to be under the bili light a bit. On Tuesday I was discharged. Leaving my baby at the hospital was not an easy thing to do. I still had yet to hold my son and felt like I was literally just on auto-pilot. I felt disconnected in a sense. I needed to hold him. I was starting to go crazy not knowing when it would happen. On Wednesday, January 4th I went to the NICU to visit and they informed me they were going to extubate him as he was doing well and his lung was healed and he had no more fluid in there. They asked me if I wanted to hold him and of course I said yes! I was finally going to be able to hold my baby! As they removed his tube that day he opened his eyes. That was the first time I had ever seen his eyes open and he looked at me and I spoke to him and called him “nugget” our nickname for him throughout my pregnancy, and it was like he knew who I was when he looked at me. On his 6th day of life I finally held him and my heart melted into a million pieces right there on that NICU floor! I can’t even describe the flood of emotions that came over me that day. It would take too many words! I finally felt like he was truly mine. Obviously I knew he was mine but holding him just put the icing on the cake. And here I am in all my glory, no make up, disaster new mom-ness that day! Don’t mind me, I had been crying of course!

 

Thankfully this was the worst of his NICU journey and we could not be more grateful that after this point he just kept improving each day. I will not go on to talk in much more detail about the next 13 days (trying to recall all the small details is tough) but I will just say once he finally got his nasal cannula out and was off the oxygen our only remaining issue was his feeds. He would always eat and fall asleep pretty quickly at the bottle so a good bit of the remainder of our time there was just trying to get him to eat the amount he needed.

One of my favorite pics from the NICU

 

On Wednesday, January 18, 2017 we finally said our goodbyes to the NICU!! His going home outfit was still too big for him but we put him in it anyways, lol.

 

 

What they don’t prepare you for in the NICU………

 

The entire time he was in there everyone kept telling me that they were so impressed how well I was handling the situation and blah, blah, blah. Well let me tell you, the entire time he was in there I was on auto-pilot. I did what needed done on a daily basis at home, went to the hospital and spent as many hours as I could there daily. Drove 1 week post c-section because I had no ride and I needed to get to that hospital and see my baby. I didn’t think and didn’t care what needed done, I just did it. I went through the motions of each day and handled everything with ease. Why? Because I had no choice. It was only once he was released from the NICU is when everything started to hit me. And I say released because I felt like I wanted to grab my child and run with him on a daily basis. Of course I knew the NICU was the place he needed to be and he was getting the best care possible. Of course I am thankful for those NICU doctors and nurses still to this day. But I just wanted to take my baby home. Not being in control was the hardest part for me. I did not do well with it and have no problem admitting that.

 

When things started to settle is when my grief and some ptsd started. I say grief because I have literally grieved the loss of these experiences with my son. The things that I looked most forward to while trying to conceive were robbed of me. I did not get to see my husband’s first look at the baby while we both held him and cuddled him after he was born. We did not get to ogle him together. Hell, I didn’t even get to see my son until hours after his birth, only cell phone pics. I did not get to do skin to skin with him. I did not get to try to breastfeed him after birth as planned. I did not get to see the looks of our family members when they first saw him. I did not get to give my child his first bath. I did not get to put him in his first outfit. I did not get to feed him his first bottle. I did not get to change his first diaper. I did not get to spend the nights awake feeding him and changing him. I did not have the chance to figure out mom life on my own. I had the nurses showing me things instead of learning them on my own. This is not how I wanted it. I wanted to do these things on my own. I had to ask if it was ok to hold my child, my own child. I missed out on all of this. I did not get the experience of friends and extended family coming to visit us in the hospital to see the baby and I. In fact, no one came except for our parents. No one sent flowers, no one sent cards. The entire experience was not how I had envisioned it at all.  I was angry. I did not get to experience the end of my pregnancy and being “ready to get this baby out” like I hear some women say. I was robbed of my full pregnancy and my son was almost robbed of his life. Then there was the guilt because yet again, here I was and my body had not only failed me, but it failed him. In a major way. My placenta was deteriorating and my BP was sky high and if it had not been for my stupid body my son would not have had to spend the first days of his life in the NICU, fighting for his life.  After 3 years of struggling to conceive him and already hating my body, all I could do was hate it even more. I am so incredibly thankful for modern medicine and thankful for the NICU doctors and staff but it should not have been this way in the first place. My son should not have needed to go through all of this and have such a rough start to life. No newborn baby should have to fight for their life. My body almost killed me and my son. It still eats me up inside sometimes, but I just try to remind myself that we are both here and that is the most important thing. I can’t tell you how many times I questioned God and asked “why?”. Why him? It should have been me fighting for my life, not him. He did not deserve this. He did not deserve being pulled from my womb, poked, prodded and tubes down his throat and in his chest and belly button. It was too much for him to endure in my eyes. But I tell you what, one thing is for sure, he is a fighter.

 

Some people may read this and not understand, or say that those things don’t matter. They may say all that matters is he is alive. Yes, that matters a lot. That is the most important thing. But I am here to tell you that when you struggle for so long to even become pregnant and then you are robbed of these things that you have dreamed of for many years it is crushing. These things may seem little in the grand scheme of things, but when piled together they were ALOT. It was a lot for me. It took me until after his first birthday to feel like I have healed enough to type this post. In fact, his birthday brought everything back up to the surface in a sense and also brought me some feelings of closure. For a long time I did not know the best way to cope. I should have made the time to go see my counselor again but I was busy being a new mom and did not take the time for myself I needed. Will I ever be “over it”? No. I am sure I will always have some part of it creep back up at some points in life but I no longer let it bother me as much. It was a traumatic experience for us both. It rocked me to my core on many days. But it is our story and I have come to accept that as much as it was rough, it is a part of who I am and I cannot change it. I am incredibly thankful for everything those NICU doctors and nurses did to save our baby when he was first born and when his lung collapsed. I know if it was not for them that we would not have our biggest blessing here today with us. Am I thankful for the way our story turned out? Absolutely! Because of him. Because of how well he is doing today. But being thankful does not take away the trauma. It just helped towards my healing process. It does not take away the bad, but it truly helps. I realize not everyone’s story has a happy ending and I am immensely grateful that my happy ending is a silly, toddling 15 month old toddler. Here he is a few months ago at his one year photos/cake smash……I still look at him and cry because I love him so incredibly much.

 

 

 

And that is our story………….

 

 

Speaking of NICU nurses, I just came across this blog post today and it really spoke to my heart. These NICU doctors and nurses truly are real life angels among us 🙂