A friend asked me to write about our NICU experience with the support staff in the NICU -- speech and occupational therapists, other allied health providers. (I don't know whether she wants me to reveal her identity and blog or not, so I'll hold off for now.)
The problem is, we didn't have any direct contact with allied health providers other than the Lactation Consultant. I'll share our story about Elba's struggles with feeding, but meanwhile, any and all of my readers who had more contact with allied health providers while your baby or babies were in the NICU, please share your stories! Especially consider addressing what you think NICU team members should know about
"how to work with parents who are grieving, parents who have a whole lot to deal with, parents who don't know what the future holds."
Feel free to leave a nice long comment here, or to post something on your blog and use trackback or send me a link.
Wilder and Elba and Gemma were all evaluated by members of the NICU support team as part if their routine care, but only Elba was referred for therapeutic intervention. At 36 weeks gestational age, 25 days after her birth, Elba was still having apnea & bradycardia (As & Bs) during feeds. She would take too large a mouthful of expressed breastmilk or formula from her bottles, choke on her food, and then her nervous system would go a little haywire. Her heart would slow way down, her skin would turn grey, and she would just lie there.
A brief digression: In utero, babies' brains and muscles practice the communication and motor skills necessary for feeding through thumb-sucking and swallowing amniotic fluid. Learning to suck, swallow, and breathe is an essential neurological milestone. But practice is less essential than physical brain development. A certain bundle of neurons has to be functioning for suck-swallow-breathe to work. Most babies born before 34 weeks gestational age (and quite a few born after that) simply have to wait for their brains to be ready.
A full-term baby, when it chokes on its food, should cough vigorously to clear its airway. Its brain should be able to manage suck-swallow-breathe while also managing the cardiac system. Elba was slower to reach those milestones than Wilder and Gemma. Luckily, Elba only ever needed mild stimulation (a tap on the back, a shift in her position, a firm command: Elba!) to get her brain and nervous system back to work. But the doctors weren't going to discharge her until she stopped turning grey every time she swallowed too much liquid.
Because Elba hadn't mastered suck-swallow-breathe by 36 weeks, she was referred to the feeding team. Maybe there was a muscle problem in her mouth or throat that contributed to the choking. Maybe she had some oral defensiveness from her days on the ventilator. Maybe there were feeding positions or special bottles she could use to alleviate the choking. These are the sorts of questions speech pathologists and occupational therapists can address.
I think that a member of the NICU feeding team came to evaluate Elba while Calder gave her a noontime bottle. He was the one who reported that they thought we should try low-flow nipples, to see if that helped Elba manage the flow. I also know that the ST/OT team evaluated Elba at least once without a parent present, because Calder was working and I was at home with Wilder and Gemma when the team was first called in. I'm pretty sure that the bulk of the ST/OT report was given to us by the nurses. I know I never had any contact with any therapist, because I couldn't come to the hospital until after 5pm. Ultimately, the staff concluded that Elba just needed time for her As &Bs to resolve. There wasn’t a specific problem that anyone could address.
We did bring low-flow nipples to the NICU, and Calder thought they helped Elba regulate her swallowing. (I was breastfeeding -- Elba didn't have As & Bs while breastfeeding. In retrospect, I should have lied about my ability to breastfeed her exclusively and taken her home.) A few days after we brought in the nipples, however, they had all disappeared. We were supposed to take them home to sterilize them -- NICU nipples are discarded after a single use. When we asked where they were stored, the nurses told us the nipples tired Elba out and that they had decided to revert to standard nipples.
It wasn't clear whether the speech and occupational therapists concluded Elba wasn’t thriving on slow-flow nipples, or whether the nurses simply reported their conclusion to the feeding team during rounds. In any case, the decision wasn't presented to us until after we asked what happened to the slow-flow nipples. No one ever said, “we’ve evaluated this treatment and here’s our conclusion.” The nipples just disappeared.
I don't believe the nurses were honest with us. One of Elba's shift nurses dismissed the importance of nipples even before we tried them. All of her nurses would have found it a hardship to spend extra time feeding one of the healthiest babies in the room. Elba was one of four babies assigned to her nurse each day, and all four of those babies were on the same three-hour schedule (the assignments and feeding times were posted above the sink at the door). I am convinced that some of the nipples were accidentally thrown away. Even if a plan was reached to change back to standard-flow nipples, why not return the slow-flow nipples to us?
My gut instinct is that there was less formal care given to her feeding issues than Elba deserved. That seems hard to believe – I doubt my own instinct; the feeding team exists to treat these sorts of problems – but after the initial report via the nurses, the whole issue was addressed in such an ad hoc manner … I just can’t shake my suspicion that Elba fell through the cracks.
Like a lot of other NICU parents, I wasn't able to be in the NICU during the daytime shift. So there's a lot we don't know about Elba's treatment during the two weeks when her As & Bs wasn't resolving. I would rush in for the 6pm feeding, get a brief update on Elba's condition (variations on “she’s doing fine, she gained 60 grams today”), and spend a few hours rocking and nursing. Communication was so fantastic during this period that one two separate occasions, Elba’s nurse didn’t see the note in the chart that noted my schedule, and had already fed Elba before I arrived – which meant I needed to go into a pumping room to express breastmilk (because I hadn’t nursed Wilder or Gemma, either) when I wanted to be with my baby.
Ultimately, the staff sent Elba home without a resolution to her feeding problems. The As & Bs didn't happen when either Calder or I bottle-fed her, they didn't happen when she was breastfed, and they resolved with the mildest of stimulation in any case. Elba came home without monitors, and if she had any mild As & Bs after coming home, neither Calder nor I ever saw them. Obviously she survived, and thrived, once she was in our full-time care.
NICU staff members, being human, make assumptions and reach conclusions about parents who aren't present during their shifts. There’s no question that some members of many NICUs believe that parents of high-order multiples in particular have created their own problems, by recklessly pursuing unethical infertility treatments. I'm confident that these sorts of assumptions and conclusions do not affect direct treatment of the babies. I'm equally confident that staff assumptions do affect their communication and interaction with parents. At the very least, NICU team members who only work daytime shifts can’t communicate directly with parents unable to visit during those hours.
Not talking to all of Elba's medical team didn't greatly affect her outcome. I have to believe her ST/OT team made a thorough evaluation, and did their best to resolve her feeding problems. Of course, I don't know, because I never met them. I do know that my entire NICU experience, characterized by these sorts of breakdowns in communication and disrespect for my decision-making role as a parent, contributed absolutely to my post-partum depression. If only because of the link between NICU and PPD, I know that how parents are treated can have direct consequences for babies' lives after discharge. And I believe that my failure to have direct contact with all of Elba's medical team was emblematic of the problems in her (Northeastern, Prestigious University, Level-III) NICU overall.
Your post has motivated me to come out of lurk-dom and provide my thoughts.
I am the mother of three five year old tripets (C,R & E) that were born at 29w3d. They had a relatively smooth early NICU stay (no brain bleeds, no NEC, minimal breathing support). My son C came home after about seven weeks, as soon as he learned to eat while avoiding A&Bs.
My son R and my daughter E seemed to languish, however, in the step-down nursery. Neither had any significant issues with A&Bs, but both were slow to take bottles of either expressed milk or formula (I was never really sucessful in direct nursing - I honestly gave it a good shot with the help of various lactation consultants, but failed - my failure to make it work remains a very sore subject five years later).
For the first few weeks, we were told to be patient, that eventually R & E would reach the gestational age (around 36 weeks) when feeding would be easier and the ng tubes could be removed. Eventually, however, we became less patient, especially as the logistics of commuting at least 45 minutes each way while caring for my son C at home got to be more difficult.
As the weeks wore by, I began to get the distinct impression that R and E (especially) were falling through the cracks. I could not imagine that they were the first babies to have trouble feeding, but there did not seem to be any sort of coherent plan to try and address it - was it best to try a nipple feed at every feeding, or was it better to try every other feeding to give them a chance to "rest" between nipple feeds? Was it better to use a low-flow or fast-flow nipple? Was it good to encourage the use of a pacifier to encourage sucking strength? How long should a nipple feed be attempted before resorted to using the tube? I could not get good answers to these questions and it seemed like each nurse implementing their own personal "plan" each shift.
Ultimately, I got frustrated and decided to use my lawyer training to try and get to the root of the issue. The problem, that I didn't recognize at the time, was that lawyer + PPD + stressed-out NICU parent of triplets = slightly crazy person. I demanded, and was granted, a meeting with the entire medical team - the neonatologist, head of nursing, speech pathologist, and social worker. I tried to create and control an agenda that was basically - "what is the cohesive plan that everyone will stick to in order to get these children home where they belong."
For my son R, it turned out that his real issue was that he would take six or seven feeding a day by bottle, but refuse the eighth. The feeding that he refused to take by nipple was consistently occurring in the middle of the night, and never, for example, when I was doing his feedings during the day. I suspected, but admittedly do not know, that overworked nurses found it easier to tube him (which would take about five minutes) at 2am rather than spend the 20-30 minutes it took to feed him by nipple. At the massive meeting, it was agreed that we could take him home once we had NG tube training. As soon as we got him home, we removed the tube. We had some feedings take longer than others, especially at the beginning, but never used the tube again.
This left my daughter, E, at the hospital. It became even harder to see her since we now had two newborns at home(both of whom started 3-4 hours of colicly crying every evening about this time).
At our massive meeting, various theories were thrown out as to why she might not be eating - did she have reflux, was there some sort of neurological issue, was she just not readily developmentally, etc. We developed an approach to figure out which of these was the case (it turns out that she had reflux, and needed medication, which helped somewhat).
To this day, I find it very surprising that I was the one who had to demand the meeting and, basically, create the agenda. We were at a well-respected, level-III NICU at one of the more prestigous teaching hospitals in the country, yet I think my daughter especially could have languished for weeks more without my very direct intervention and insistence (not that I did such a great job at being her advocate - as I mentioned above, PPD and stress had really done a number on me by this point). The lack of communication amongst the various members of the medical team also seemed to be sort-of shocking - I honestly felt like I needed to be in the NICU for a number of hours each day during the day to make sure that everyone was up to date on the plan to get her released.
Ultimately, it came to the point where I basically demanded my daughter's release - I could not see how she was getting better care at the hospital then she would at home and the logistics that were allowing me to spend a number of hours each business day at the NICU were about to change so that my visits would be seriously limited. She was released to us and, after a few weeks of struggle and the help of a very supportive pediatrician, we finally got her on track to gain weight.
I continue to have very conflicted feelings about the NICU experience - as the years have gone by, some of my initial anger and frustration has faded - my children have developed on-track and, to date, we have not found any lingering impacts from their prematurity. Without the intervention of the NICU, particularly in the first few difficult weeks, I know that this would not have happened and for that I am very grateful. I also know that I was not at my best - a difficult pregnancy and delivery left me in a bad emotional state, and I suspect some of the anger and frustration I felt about my situation was mistakenly taken out on the handy target of the NICU staff. On the other hand, I resent that I had to become such a vocal advocate for my children on what seem like pretty simple and basic issues of communication and having a treatment plan. In some ways, I am not sure that five years has been enough to fully process the experience - raising the triplets (and their happy surprise of a little brother) while continuing to work has not left much time for reflection.
I'm not sure if this is what you were looking for - but I felt compelled to add my thoughts.
Posted by: Jane | November 14, 2006 at 03:27 PM
I don't even know if I can get into the whole NICU ordeal yet. Our 25.5 wk BBG triplets were born at a facility with a Level III NICU and spent between 3 months and 5 months there. It still feels too fresh even though they were born 15 months ago. We left the NICU last January and it feels like yesterday- still raw and painful. I also experienced the communication breakdowns you described almost daily but it wasn't the feedings we had problems with. It was things like walking in and finding my baby in isolation because he developed a severe infection when no one had called me. It was my son contracting antibiotic resistant staph because of improper sterile technique from nurses that were "too busy". It was finding my triplets split apart in different parts of the room or wing without warning. It was a multitude of problems. Sigh.
I'd like to hear more about the link between PPD and NICU stays. I think it feels more like post traumatic stress disorder. My husband and I were discussing it last night and we both feel like we've been through a war. The entire pregnancy, we were afraid we were going to lose our babies and then we almost did. Months and months of NICU visits that left us angry, sad or just lonely for our children. 1 year of a child with a trach, g-tube, chronic lung problems and delayed development has left us worn out and nervous. But, we are grateful every single day that they are still alive because why? Why did ours live when so many others died? Ours were tiny, too early, sick and seemed to have idiotic nurses who damn near killed them with their mistakes. Sometimes I think our babies lived in spite of their medical care. I'm incredibly thankful I still have my children and it makes me even sadder for those who lost their kids (some of whom were born later and bigger than ours). I'm angry with the way the NICU treated our family but also grateful- it is quite a paradox.
I'm going to write about this more on my site (www.kimblahg.com) if you want to hear more. Thanks for sharing your experience.
Posted by: kim de kimblahg | November 15, 2006 at 10:09 AM
Jody, I don't know if I have mentioned this book before but I really recommend it: 'Parents of Premature Infants: their Emotional World" edited by Norma Tracy
http://www.gleebooks.com.au/default.asp?p=displaybook_asp?bookId=144280&isbn=9781861561305&from=search
I don't know if it's available in the US. It's a book written *for* and by psychologists and other health workers (social workers, midwives, pediatricians), which was very useful to me as I could see that a lot of what I'd experienced fitted a *pattern*. We had many of the same problems you mention and I think it is an institutional-psychology problem, a kind of us-against-them which develops. The book talks about the tendency of staff to feel that they own the babies in their care, not the parents. To this day almost eight years later I still get tears in my eyes when I remember the scene when a very young nurse told me (a 42 year old), when I had put my baby to the breast late one evening beside his crib(before he was even breastfeeding properly), "Don't let him use you as a dummy (pacifier)" - I felt so intimidated by her disapproval that I immediately put him back into the crib and went home, bursting into tears as soon as I walked out the door. I read this book after my son came home and it helped me process some of my post-traumatic stress (I agree with Kim, that's what it is).
Posted by: susozs | November 15, 2006 at 06:59 PM
It's on Amazon and also on Amazon Canada second hand at a cheaper price.
Posted by: susozs | November 15, 2006 at 07:17 PM
I'm still too close to my NICU experience with my twins, but I agree 100% with the comments posted above. I am still angry at the MANY NICU staff we had that treated us, and our children poorly. Mainly b/c they were overworked, and had too many patients. (Many of our nurses had 5 babies!)
Posted by: Meghan | July 20, 2007 at 08:53 AM