Theresa's Inspire Me Session

My Story of Becoming a Mom

"We are the lucky ones. There is no doubt about it. Things could have gone in a completely different direction and can only be described by the health professionals as a miracle that our daughter, Brook, is not only doing well, but flourishing! This story is in no way meant to blame anyone for what happened, hindsight is 20/20 and I know that if any one of the health care professionals, or myself and family, would have known where all this was leading, something would have been done right away to stop it.

Her story could start in many places, it could be the day Chase and I found out we were expecting. Such a happy day that too many deserving people in the world are not able to enjoy, we are lucky and we know that. It could be that day, at 25 weeks pregnant, I broke down in tears on the side of the road after leaving my dr’s office alone, terrified we were going to lose her as I just found out I had a SUA (Single Umbilical Artery) pregnancy. This of course was the one time I went to my dr’s appt alone, every other time I had someone for support. It could be the day I sat down to eat a late supper on June 25 at 41 weeks pregnant (6 days past our due date) and was hit with sudden contractions that were 2 mins apart lasting 60-90 seconds each. This is not the way, as first time parents, we are told the birthing process starts. We were at the hospital within an hour and half, not sure if we should be happy we were going to be meeting our daughter soon, or scared that something was wrong.

After spending 6 hours at the hospital walking the halls, working the ball, doing the things that are supposed to help you move along further in your labour, I was not progressing in dilation and the decision was made to send me home to get some rest at 5am. I was told to come back when we were further along, I asked, “how do you know when you should come back” standard answer, “you will know”. No, I don’t know, and didn’t know and if you are going off the 4-1-1 rule for labour, I was already past that point. So, when do we come back? I already had a fetal assessment booked for 10am with a dr appt scheduled right after so we figured, if anything is wrong, it will be caught then. We went home for a couple hours and came back into the city for our appointments. At our fetal assessment everything appeared normal in the ultrasound except there was difficulty locating the amniotic fluid. Questions were asked about water breaking already or leaking, etc and no, none of that was happening. After more searching they were able to locate the fluid but it was depleted and written off to I was probably leaking and didn’t notice. I’m sure the health professional meant well but I was adamant at the time that no, I feel I would have noticed wet pants at some point. Maybe this was the first real indicator that something was not right with Brook and she was going into fetal distress. I don’t know. At our dr appt, it appeared Brook was getting ready to face the world and was 80% effaced. My dr said that we can head back to the hospital when we feel we are ready, again, when is that?

I still feel a lot of confusion and lack of understanding of exactly what happened during our “birth experience”. People ask me what the initial labour was like, what were the contractions like and I can just say I have no idea if I was in labour or if she was in fetal distress.  People forget how many babies and mothers are still lost in the world during this natural process and that a c-section is still considered a major surgery. I know everyone means well and for most people, maybe that is what they need to hear, I needed to hear, “it’s okay you are scared, but we are all here to help keep your baby safe and will tell you what to do”.

So, after the dr appt, we went home again to “get some rest”. After laying down for an hour and a bit, I got up with this crazy vice like pain that was not stopping, this wasn’t the “contractions” I had become accustomed to, something was very wrong. We had to get back to the hospital and then everything would be ok. So off to the hospital we rush again with this vice not letting up for a second around my baby. They get us into triage, check us and sure enough, no change in dilation but baby is 100% effaced. Baby is hooked up to monitor her heart rate, everything appears fine and we are relieved she is okay. They want me to lay down in the bed on my back while we wait but I choose to sit on a ball as the discomfort on my back is too much. We have the nurse come in after a bit and they want to check again, so into the bed I go and something happens to Brook. Those little beeps you hear monitoring her heart changes and my heart drops. After the nurse calls for help, I am repositioned a couple times and we find left side brings those little beeps back up. We are so sensitive to those beeps now. But something is wrong, we are told everything is okay and it is normal and probably just the monitor was moved and isn’t picking up well but now her heart rate is not variable anymore on the monitor. This means a normal heart rate will have all this little jumps and dives making the line all squiggly. Hers was described to me later by the doctor as being as if you took a pencil and tried to draw a straight line with it, there would be tiny little movements in the line as you did this. This is not what you want to see. When asked why at this point in our “labour”, the decision was not made to have her taken out, it was explained that, although the monitor is great for telling you when everything is fine, when it shows up as not fine it can be something as simple as the monitor not making good contact with your skin.

After again, being told, everything is fine and being under the impression it is soooo fine that they may be sending us home again, we hear the nurses talking on the other side of the curtain, “has the dr come and seen her yet?”, “no, we should get her in here, the baby isn’t variable”. Not words you want to hear, especially when you don’t understand the lingo. The nurse comes back and now I am asking, “are we staying or being sent home, is everything ok?” We haven’t even brought any of our “labour” stuff in with us yet, it’s all in the car. The nurse tells us “no, you have been doing this long enough now we won’t be sending you home”. Again, measure of calm, no indication that something else may be going on from them. Shortly after we see the dr, again, no concerns, monitors probably just not reading correctly.

After a bit more time there is a room ready for us in the labour ward, off we go and off Chase goes to get our stuff. It is advised that we induce the labour with some Oxytocin as it appears my body is not understanding the natural process of this all and won’t to allow our daughter into the world. Her heart is still non-variable. The discussion about a c-section is brought up and I say again, “yup, anything you need to do for her”. “Ok, we will wait a few hours to see how this goes.” A little time passed and things aren’t going along so we break my water (see, I was right about not leaking), big red flag number 3, there is meconium in it. I’m thinking, that’s bad. I’m being told, it’s okay, we will just move up our decision on when to do the potential c-section. They want to do an epidural, in my mind, finally, the pain meds, everything is going to be okay. We try for the epidural, I’m one of those lucky people who don’t freeze well, they are having trouble getting it to work, bend over more, there are those beeps again, dropped right down to 60. The nurse holding my hands and helping looks terrified, everyone freezes, this isn’t good, we wait a minute…feels like eternity, no improvement, another minute and they are all running around into action, I’m sobbing and having trouble breathing now, this is not how this is supposed to go. I had no “birth plan”, I was okay with whatever we needed to do or not do but this, this terrifying feeling that my baby is in danger for her life is not part of any plan, not supposed to happen in this day and age. But it happens more then you realize as we have come to learn.

We are in surgery now getting our c-section, the nurse at my head is talking about how everything is going to be okay, we are going to hear her little scream soon and if we look to our left, we will see them carry her by, they will check her and then she will be in my arms safe and sound. Chase and I are having a normal conversation, everything seems like it will be okay. The surgery team is talking about everyday stuff, the worst is behind us, all will be right any minute now when we meet our little girl for the first time. We are being told now that they are taking her out, any second now we will hear her….there is only silence, why is there silence? “Chase, what is happening, why is she not crying? What is wrong?” “Everything is fine” we hear from the nurse beside us, “it is normal, she’s just fine, look there she is” and there she is….limp in a nurses hands, dark purple, not moving , no sounds….“Chase, go to her, she isn’t fine, why are you saying she is fine, she isn’t fine, why isn’t she moving??” And then we hear the call for help, the paging of doctors and help from the NICU, the actual scream of “We need help in here!” “Chase go to her, please!” I’m trying to get off the table and then I hear, “put her under she’s moving too much”.

I awoke for a few minutes confused, being told, “here’s your baby, give her a kiss” and then they whisked her away and it was nothingness again. 6 minutes, 6 minutes she was gone from this world at the moment of her birth into it. I am so grateful for everything the staff did at that point to bring her back to us, to give her a chance to fight for her life.

I awoke again in the recovery room with Chase by my side, I have no idea how long I was out for but I did know my baby wasn’t there with me. The nurses had to break the news, she is alive right now but she is showing some concerning signs and had to be put on Hypothermia Therapy Treatment. Basically, they put her on ice for 72hrs to slow down any damage her cells are dealing with from her HIE birth. It is a type of injury the brain receives after not getting enough oxygen or blood to her brain. “will she live” I wanted to know, “we don’t know” is the answer we would get for 2 whole days. It wasn’t even a question as to what kind of life she would lead at that point, it was just, will she even have a chance at life at all? And as I am there, another woman gets wheeled in with her baby and her family, all excited around them. Jealous much, yup, 100%!
The nurses made arrangements to wheel me through the NICU on my way to my room in the maternity ward so I could see her for the second time for a few minutes. At this point she was covered in tubes, 3 in her belly button, down her throat, both wrists and ankles, and they had placed a mask on her to help her breath, she looked so little and cold, I couldn’t see her face, her hair, never saw her eyes, never heard her little cry. Just had what Chase described to me and the picture he got after they got her responsive again and before she became a pin cushion. The few minutes we had was such a kindness the nursing staff provided and yet at the time, it seemed like a cruelty that I had to leave her like that. She was “born” at 12:39am on Wednesday, June 27th, 2018 by emergency c-section and I was up on my feet by 9am that day to see her. We would go into the NICU and visit every couple of hours, pumping what I could and bringing it in to the nurses like it was liquid gold. This was the only thing I felt I could do for my baby and so I did it with a determination that amazes me now looking back. It was the only thing I felt we had control over and yet, even that is not something you can control, I was just lucky. Every couple of hours we went and stayed as long as we were allowed by my nurse and by her nurses. She had her own nurse dedicated to her care 24/7, at the time, we thought this was normal. Nope, turns out that is just how dire it was for her as we spent 12 days in the NICU and saw the nurse to baby ratios were not supposed to be 1:1. Every time we visited for those first 2 days brought worse news. I remember crying in the NICU and saying, “everytime I visit she gets worse, it’s me” Her kidneys stopped working, her blood pressure had to be regulated manually, she wasn’t having bowel movements, she had to be put on a breathing tube, she was having seizures, she wasn’t responding to medication, she was overreacting to medication, she had edema, she was high tone and low tone and she was so “sedated”. No crying, no sounds, no movement really besides when she would seizure, we kept asking if it was normal and was told it could be the drugs she’s on or the injury. The type of balance her dedicated team had to constantly try to sustain was overwhelming. She had so much medical equipment she was taking up 2 spots all on her own. I would go back to our room and hear the cries of other babies, the congratulations from happy family and I just felt anger and despair and didn’t even know when the nurse came and gave me her birth papers to fill out if I was supposed to fill it out or not because how does that work if your baby didn’t live? That’s when I felt I hit rock bottom, the guilt of actually thinking if there was a point to even registering her birth into this world. The only thing that kept me going during that time was her, as long as her little heart was beating, I was going to force myself to get out of that bed, walk down the hallways all the way to the NICU, past all those families celebrating and do what I could to be with her. On Friday, June 29th at around midnight I got to give her the first kiss on her head and smell her, she smelt amazing. Such a little thing you don’t realize you need until you can’t do it.

We had a little way to say hello, I would run my finger under her toes and she would slowly fan them, that was the contact we were allowed, we could not risk warming her up in anyway so we were allowed to touch her fingers and toes. Every minute was spent waiting for the day the dr’s said that she was going to live. That wonderful moment came on Saturday, June 30th at the 9:30am meeting with the medical team and at the end, when I was asked if we had any questions, I asked again, “is there still a chance she is going to die?” the dr said, “No! She is doing better and we don’t expect that now”. Every other time it was, we don’t know, only she can tell us with time. Such a wonderful moment in our new life with her.

Saturday, June 30th was warm up day. We were warned there could be complications, but this would be the day that I could finally hold her and maybe do some skin to skin to help warm her the final .5 degree. We were so excited! Finally! We have gotten our first family photo, first time having skin to skin with my baby, being able to hold her. Took 3 nurses to have her moved onto me and off and a ton of tubes and wires to navigate but we did it and Brook loved it too. Her vitals went optimum when they put her on me. I made the mistake of drinking water like I was told to during the skin to skin and within 3 hours, I felt I was going to burst but I did not want to give my baby back. Never thought I would wish for the catheter back but yup, here I was just cursing away in my head and vowing not to listen to the nurses about staying hydrated next time I got my baby on me. So off she goes and here’s me trying to make it all the way back to the maternity ward as there are no washrooms close by for the parents of the NICU babies, another recommendation for improvement I am adding to the list for those having to experience the NICU. I come back and spend 5 hours with her stuck to me like glue into the early hours of Sunday morning.

Sunday, July 1st, MRI day. We got the great news when we arrived at her bedside that the nurse was able to get her to suck on a soother. This is a huge thing for a baby to be able to do as it means her chances of being able to be fed by a bottle or even breast fed just increased. The ability to suck for a sick baby is a very complicated procedure for them to learn and everyone was feeling very optimistic about her chances of being able to go home in the near future. Time to see how her brain is doing. We tagged along for the trip to the MRI, as she was still on a breathing tube, they had to have a nurse hand pump oxygen to her and we had to hustle there and back. We were so optimistic going into it, she was doing so much better, they were weaning her off medication and the plan was to take out the breathing tube the next day. We were thinking we will be taking our baby home by Wednesday latest as that is when the seizure medication would wear off. We were thinking the MRI was going to come back all clear. We got back to the NICU and were barely set back up there with her when we were asked if we would be able to stick around until the Neurologist could get here to talk to us, about an hour or so. This can’t be good, why would he respond so quickly when they told us earlier we would find out the next day the results. We were staying as late as they would let us anyways but now you just have that sick feeling in your gut. Something isn’t right. Every other time we had news given to us, it was at Brook’s bedside, this time we get called into an office for privacy, I couldn’t breath, my heart was just pounding, he pulls up a scan and says, this is what we expect to see of “normal” brain in a MRI scan. Pulls up some more scans with a lot of white on them, these are Brooks. “The good news is we do not see any scarring which would lead us to believe she has not suffered any permanent brain damage, but as you can see by this, about 1/4 to 1/3 of her brain at the time this scan was taken was injured. We don’t know if all her brain was injured when she was born and healed to this point and will continue to heal, or if this is the extent of her injuries and nothing has healed. Only time will be able to tell us where we go from here. As far as prognosis based on this information, I would say she has a 30-50% chance of living a “semi-normal” life. Factoring in how she seems to be recovering in the NICU and how she was able to suck on a soother today, I’m giving her a 50-70% chance of a “semi-normal” life.” This means we don’t know if she will have the ability to ever eat, to see, hear, move, learn, play, know who her mom and dad are. This was the 3rd time in our hospital stay where our hearts just felt shattered. We just wanted her to know who her mom and dad are, that she is loved. Everything else we could deal with as it came, the whole pregnancy, we wished for health and at the minimum that she would know who we
are and that we love her and now to be faced with this possibility that she might not, was just so unfair, so heart breaking! This was the first time I really saw it hit Chase hard on what was happening with Brook, up to this point he was so optimistic and kept saying, no, they don’t know what they are talking about, she’s fine, she’s going to be just fine. Now was the first time I saw him question it. We head back to hold our baby for the 3rd time since she was born and was told that we should just go home and get some sleep, they were shorter staffed and it didn’t look like she would have the 3 staff she needs to move Brook onto me. With the news we just got, I did not take this as a nurse concerned about our welfare (she did not know what we knew yet), I just heard that I waited all day to hold her again and was constantly given good reasons why I had to wait and now this nurse is telling me no because it’s inconvenient to them? Dr showed up at the exact moment I started sobbing about just wanting to hold my baby. I was such a mess. She had a team there ready to help in 2mins after I agreed to go home in a bit and take some sleeping pills. This was the first night I would be leaving her side, the first night I was going home since she was born and it was hard. All those people with a loved one that has to do this, you are so strong! I couldn’t have done it without the pills.

Friday came and we were told at the morning meeting that they were going to have to transfer her to Children’s Hospital and that she would most likely be there a few weeks, maybe even months until they could get her eating better. Felt like another huge setback, and we were feeling pretty low when we had to leave her that night to go home. We showed up the next morning to a very excited nurse. Our little Brook had decided to rip her feeding tube out on her own and thankfully the nurse on duty decided to try feeding her without it and sure enough, we had a hungry little girl on our hands! 3 big feeds and we got the ok that if she kept that up for the next 24hrs, she would be coming home with us. And she did it, she surprised the dr’s and kept it up and home she went on Sunday, July 8th at 11am.

The weeks and months to follow I was looking for everything that could be wrong. I couldn’t go 15mins without checking her temperature for months, even checking it constantly through the night. She struggled the first month with her temperature, she had acid reflux, she developed a rare condition called Subcutaneous Fat Necrosis and required blood work every week or so for a couple months to monitor her calcium levels. She went off her seizure medication which left me terrified they would appear again. I could not sleep, after the first couple nights, Chase made her a little cardboard bed so she could sleep between us and I could hold her hand all night and wouldn’t have to get up constantly to check if she was breathing. I did that A LOT, she had to always be visible and with someone, I could not relax if she was not visible and even then, if I couldn’t see that rise and fall of her chest, I would panic and think she wasn’t breathing. I knew I was not acting like a sane person, I knew that I was going way overboard but I couldn’t stop myself because if I did, what if that was the time I should have checked? It took months of therapy for me to be able to leave her in her crib for a nap and just watch her on the baby monitor in another room. Not watching the baby monitor the whole time was not an option for a long while. The day I was able to do that was such a freeing moment in my life. I felt the switch happen, the ability to be able to sit back and enjoy being a mom.

She has kept up her fighting spirit, reaching milestones in her development that has surprised her dr’s and the team assigned to watch her development. You would never know the rough start she had in life, the obstacles she had to overcome just to be here and how every check up she has, it is described by the professionals as a miracle. We are the lucky ones, we got the miracle we hoped for. She calls me mom, that is all I really wanted, everything else is a bonus. We won’t know at what point in her life some side affects of this trauma may pop up (if ever, fingers crossed) but we know we can deal with whatever does come along after this.

After going through this experience, I was diagnosed with PTSD as well as a severe anxiety disorder. With help from medical professionals over the past 6 months, I can say I am well on the way to recovery. I do not believe this would be the case without the strong support of my family and friends as well as the personalized interest my doctors and health care professionals took in making sure I got the help I needed as quickly as possible. One of the jobs I was given was to write my story, it took me a long time to be able to complete it and another weight feels like it has been taken off my chest."