Hi, Melinda.
I cannot believe you found the time with a job and a newborn to write me such great information. What you sent was perfect and dove-tailed nicely with what your mother had already given me. I especially appreciate the part where you told me what you were feeling. My story is fiction, of course, so the character is different than you in most respects, but I want the part about the baby's health and what the mom is feeling to be accurate. Just going by how I would have handled being a new mom in that situation, I guessed I'd feel scared, panicked, and helpless. Your being mad at seeing other moms with healthy babies seems totally normal and an important part of the story. I am so happy you shared that. I'm sure lots of moms with sick babies can relate.
In the story, I have the new mom be so scared and frustrated that she starts blogging about her experience. She then "meets" other moms going through the same thing. Sharing their worries online helps all of them. As you said, it would have been nice at the time to know your emotions were perfectly normal.
Brenna and I were praying for Zoe the whole time, and we knew she was sick, but we didn't realize how sick until I read what you and your mom sent me. You and she are incredibly strong to have gone through something like that. You will be a great mother! Perhaps Zoe got her life-saving stubbornness from you. It has served her well!
I keep all of you in my prayers and am so happy to hear how well she is doing. She is a beautiful baby. I look forward to meeting her one day. I think this story will be in the May issue of True Story. I will get you a copy when it comes out.
Thank you so much for all your help.
Mary
On Thu, Jan 26, 2012 at 2:20 PM, Melinda Christman <jmelinda.christman@gmail.com> wrote:
Hello Mary,This is Melinda, my mom passed on your email so I could give my feedback about everything. First, I want to say thank you so much for keeping us in your prayers. Zoey was so sick, they didn't think she would make it at first, and then got better so quickly, was in NICU for 2 weeks, that I know it was because she had so many people praying for her. Thank you.Since mom sent me your email yesterday I've been trying to figure out what exactly to say and how to say it without it being confusing. I think it's neat that you are writing a story about this and would have loved to have had something like to this to turn to so that I would know what I was feeling and dealing with was perfectly normal. I'm not sure how much you know about what Zoey has so I wanted to give you some medical background, from the dr, first. Zoey has Meconium Aspiration Syndrome. It happens when the baby passes meconium in the amniotic fluid and then inhales it. Passing of meconium in the amniotic fluid happens more often: 1. In term or overdue babies 2. When the unborn baby is not getting enough oxygen- especially during labor..fetal distress. Passing meconium does NOT guarantee the baby will breathe it in. When meconium is passed and the baby is struggling for oxygen, there is a greater chance for MAS.Symptoms:Difficulty breathingRapid breathing, think of a dog panting real hard. This may last for several days even after the baby is betterGrunting noises when breathing outSucking in of the spaces between the ribs when breathing in.Nostrils flare open when the baby breathes inBlue skin color from not getting enough oxygenBaby's skin may be stained with meconiumWhat Zoey has is what they call terminal meconium. What this means, is, instead of passing meconium in the womb and then sitting in it for weeks, she went through some kind of distress during labor, passed it in the birth canal and then inhaled it. Had she not tried to cry at first, they say they would have been able to suck it out. However, since she tried to cry, the meconium went straight into her lungs causing severe burns thereby making it where she couldn't breathe.I am going to answer your questions out of order. In my mind, everything happened chronologically and it makes more sense, to me at least, to go through it in that order. I will number them so they correspond with your numbers.3. At first, the doctors and nurses really didn't tell us anything. The doctor, not my doctor otherwise I think it would have been handled differently, broke my water around 11:30am. When he did, some meconium came out. He mentioned that fact, but to us, that meant nothing. We didn't know that there was a potential for a problem, let alone that it could be as serious as it was. Thankfully, he had the insight to call down to NICU and have their respitory (sorry that's mispelled) team in the delivery room with us. I had a very easy labor. Nothing that led us to believe there were going to be issues. I pushed for an hour and a half and at 7:34pm Zoey was born. The plan was for them to place Zoey on my chest after she was born, dry her off and let David, dad, cut the cord. They were then going to weigh her and clean her up and whatever else newborns have done to them. Instead, when the amniotic fluid came out brown, the doctor had his nurses clamp the cord, he cut it and then passed her off to the NICU nurses. Still, nothing was told to us. They went back to work on me, finishing up my part of labor that still had to be done. She was in a bed next to my bed so I could see them working on her, but still had no knowledge of what was going on or how bad it was. All I knew was that there were three nurses standing around my baby all moving super fast and no one was telling us anything. I finally asked someone what was going on and I was told that she had inhaled a lot of meconium and they were working on getting it out of her lungs and that right now, she really couldn't breathe on her own very well. They worked on sucking the meconium out for about 30 mins before they decided that they had done all they could do and they had to get her down to what they call the transition room to focus on her breathing. I was told that after I was taken care of and up in my post-partum room that I could come down and see her and see what was going on. At this point they had her bundled up in a blanket with a hand held ventilator..one that you have to squeeze with your hand. I could tell that they were taking my baby away from me and that if I didn't speak up, who knew when I was going to get to hold her. So, I spoke up and told them that I needed to hold her, if just for a few seconds. They let me hold her for a couple of minutes and then they took her away. Long story shorter, about an hour, hour and a half later I was taken down to NICU with my mom and David. All I knew was that she had an IV in her. When we were taken back it was a mess of organized chaos. There were so many people working on her. Between the nurses and all of her machines I really couldn't see her. The doctor came and took David aside, showed him her x-rays and talked to him about what was going on and what they were doing to try and help her. At some point during their conversation David asked the Dr if he needed to go home and start making funeral arrangements.The Dr told him no, that at this point she was extremely sick but he didn't think that was going to be necessary. For the first week and a half, she had a ventilator breathing for her, was on Nitric Oxide to open up her blood vessels so that she could get the proper amount of oxygen in her blood until her body was ready to regulate it herself. She had a bridge across her face holding these two tubes in place. She had another tube down her throat that they used to suction out the gunk that she was coughing up out of her lungs. She had an IV in her umbilical cord giving her nutrients since she wasn't able to eat yet.She had an arterial IV in her foot that they used to do what they call blood gases...tests on her blood to measure oxygen levels, white blood cell levels, and hemoglobin levels, they also used it to give her medicine to keep her blood pressure elevated so her body didn't have to work so hard to do that on it's own. She was also on an extremely addictive sedative so that she would not try and breathe over the ventilator and allow her body to start to heal. She was hooked up to all sorts of monitors...heart, lungs, oxygen. She was also put on a cathatar since the sedatives effected her kidneys. She was able to process the fluids going in her, but her body shut down some of it's functions so it could focus on getting better, including getting rid of her bodily wastes.As time progressed, the nurses and doctors were always open with us. They let us know what they were doing and why. Since I was able to go up there every day, I learned what all of her machines were for, learned what her goal numbers were to be taken off of the machines, the possibilities for setbacks, all of that fun stuff. Any questions that I had, they answered for me in a way that I understood what was going on with Zoey. The one thing they couldn't tell us was when she was going to come home. Her healing was based on her. They gave her the tools she needed to get better, but she determined the speed of her recovery. That was difficult, not knowing when we were going to get to bring her home. David's mom doesn't live here, so every day I had to tell her no, we don't know when we are getting to bring her home, and that was difficult. One of the hardest parts for me was not knowing for sure if the way I was feeling was normal. I would talk to people and they would say..."oh, so and so's kid had that, they were fine." or "my kid had that, they were in NICU for 2 weeks and were fine, Zoey will be fine" but no one would talk about how scary it was or if the anger I felt towards mom who I saw taking their healthy baby home after birth was normal. I would get so mad about it and then I would feel guilty cause I wouldn't wish this experience on anyone. I would get mad at people who, in the elevator, when they would realize what floor I was getting off on and that I was a mom of a NICU baby, would give me these "looks"...don't pity me I would think, I don't need that. Just pretend you don't know what floor I'm getting off on. And then I would feel bad again because how do you know what to say to someone who's child is in NICU, especially a stranger? No one would tell me that the way I was feeling was normal and ok to feel and that was difficult.1. This is pretty much answered in the previous question. Zoey was on a ventilator, a Nitric Oxide machine, an IV giving her nutrients until I could start nursing, blood pressure medicine, sedation medicine to keep her asleep so her body would heal, several monitors keeping track of her vitals, a cathetar, an anxiety medication once she was taken off the sedation to help with her with drawls from that medication (that was much harder to watch than the tubes in her), a feeding tube once she was taken off the ventilator, and then a cpap- supplemental oxygen. She was put on the list for a blood transfusion because of her low hemoglobin levels. Thankfully, she never had to have it. She was kept under a warmer until her breathing was under control. She wasn't jaundice, but keeping her body's temperature where it should be was too much for her body so they assisted so she could focus on healing.2. Zoey's feeding tube was in her mouth most of the time. Once she was able to start nursing while I was there, and after she threw it up a couple of times, they put it in her nose so that when nursing, it wouldn't be in the way. After a couple of days of her on it that way, they no longer had to use it. She was either nursing with me or taking a bottle and had no need for the tube.4. Zoey's complications all stemmed from the meconium. If she had not inhaled it, she would have been able to breathe and we wouldn't have been in the NICU. She will have to see a developmental specialist routinely for about the first year to make sure she didn't suffer any developmental damage from being on the Nitric Oxide so long. Other than that, she shouldn't have any side effects from this experience. We just have to watch who she's around right now since her lungs are still weak.7. At first, I wasn't sure what was going to happen, live or die. My mind kind of put up a mental block so I could stay strong for her. Once I got home and she wasn't a floor away from me anymore, then I panicked. Not being able to go down and see her whenever I wanted ( we live 45 mins away from the hospital without traffic) I didn't have to stay strong the entire day so then I was afraid, wasn't sure if she was going to make it. We didn't realize how sick she was at first. The drs and nurses continually told us she was a sick little girl, could always take a step back and it wouldn't end well, that she was the sickest baby they had in the NICU. David and I felt that they were keeping something from us though. Two days before she came home, I over heard the day shift nurse and the night shift nurse talking, catching each other up on their patients and their medical history and what they were working on accomplishing that day. One of them said, " Wow, she was a sick little girl and has gotten better really fast." The other nurse replied, "Yeah, we didn't think she'd make the first couple of days, we weren't sure if she was going to pull out of it or not" Thankfully, maybe not thankfully, we didn't know it was that bad. I don't know how I would have handled it all knowing she was that close to not being with us. They didn't start saying she would be fine until about a week and a half into it. Once she showed them that she had turned the corner and was going to make it, then they started talking about our future with her and what we needed to do and to watch out for once we got her home. Until then, all they would say is that she was a very sick little girl and that it was a good thing she's so stubborn cause that's what was keeping her going.5. I could see Zoey almost whenever I wanted. At first she was under "minimal stimulation" which meant we couldn't talk to her, we couldn't touch her, and they really only wanted us there during "touch times"...about 6 times a day when the nurse checked her diaper and her temperature. They would allow us down there to sit/ stand next to her bed and watch and talk quietly to her and hold her hand. As she progressed and I started to heal, they let myself and David come whenever we wanted, 24 hours a day. I had a chair to sit in if I wanted it, which I did, and depending on the nurse of the day, I could sit and quietly talk to her and hold her hand for as long as I wanted. David did get us kicked out one day. He discovered that she was ticklish on her feet and got her too agitated and her numbers started to crash so we were kicked out and told to go home for the day so she could get back under control. Other than that, I could sit there however long I wanted as long as I didn't get her too worked up. I had to wait for her to be off the Nitric Oxide machine before I could hold her. Holding her before then would get her too worked up and her oxygen levels would then drop so they wait until she was off of that for good to allow us to hold her. I think we got to hold her the second Monday she was in there...so a week and a day in NICU we could finally hold her. She still had all her monitors and IVs in her so it wasn't a simple task, but to be able to sit there as long as I wanted and just hold her was wonderful! Such a healing moment for me and beneficial to her healing as well. A couple of days later, Wednesday I believe, I was able to start nursing her while I was there during feeding times.6. In this NICU, they have what's called pods. There are about 8 of them with about 6 little cubicles in each. So, you go down a short hallway where you scrub in and sanitize your hands and make sure any belongings you're bringing in are in a sanitized bag. There is one Pod off of that hallway. As you continue walking, you reach a longer hallway that intersects with the short one. Down that longer hallway are most of the pods with their little cubicles in them. At the end of that long hallway, is another short hallway with another exit to the hospital and sanitize station.| Another POD POD Water station POD POD POD || || |Zoey's POD ------------------------------------------------------------ ------------------------------ ------------------------------ ---------------------------| Another POD | || |POD || || |wash station || wash station| || |respiratory specialist office || |door out to the hospital door out to the hospitalFront desk of NICU, where you had to check in to be let back in NICUOnce you were in Zoey's pod, there were three cubicles on either side of the room. The cubicles had curtains for privacy if the family wanted and then walls that separated each cubicle. When the curtains were not drawn, your cubicle faced into the cubicle of the patient across from your room and you could also see across the hall depending where in your cubicle you were. There were two nurses assigned to her pod at all times and they had little computer stations out in the walk way between cubicles. At first, since Zoey was so sick, there were only three babies in her pod. She had one nurse all to herself and the other nurse had the other two babies. I'll never forget the day I walked in and there were two more babies, all but one cubicle was taken. They told me Zoey was finally well enough to not need a nurse all to herself so we now had to share her nurse with other babies. Her poor nurse, once Zoey was off the sedation and going through drug with drawls, she cried and screamed non-stop. It was a rough couple of days at first and her nurse was just a tad bit stressed. They were always happy to see Mom or I cause that meant they could focus on their other patients not helping Zoey through her with drawls cause we would do that. In each cubicle there is a set of monitors that monitors the babies vitals. There is a constant beeping noise. When David's mom came up, she made a comment about the beeping and I didn't know what she was talking about at first it is such a constant noise in the NICU. The monitors also show alarms for the other patients in the room. So, if Zoey's nurse was in taking her temperature and one of her other patients heart beat dropped, an alarm would sound and show up on Zoey's monitor so she would know what was going and on would know to leave Zoey and go take care of the other baby. Each pod in NICU has a theme. Zoey was in G-Pod, G is for giraffes. So, there were giraffes every where. On the ceiling, they had stars and clouds imprinted in the ceiling. Depending on what is wrong with your baby, you can bring items from home and put in their room. The little boy across from Zoey was born about three months early so was there until he put on enough weight and his lungs finished developing. Since he was allowed to have stimulation, his mom could bring in a mobile for his bed, stuffed animals, a swing for him, sheets from home, and music. We couldn't do that for Zoey. She had to have just what NICU would give her so that she could spend her time healing, not being entertained. I didn't see a lot of parents there during the day unless they had just given birth and were still in the hospital. There was one couple who live really close so she and I were usually there at the same time. The other mom was already back at work and came at night so I rarely saw her. I tried to go during the day so I could avoid sitting in traffic where I could do nothing but think about my sick baby that I just had to leave.I hope this helps! I know mom gave you a lot of information so I hope both of ours together makes sense. Thanks again so much for your prayers in our behalf, I can never say thank you enough for that. Good luck with your story! Feel free to use whatever information about us that you want, it will not bother me a bit. I look forward to reading it when completed!Melinda Christman
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