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It can be really hard and stressful when you don’t see any results of weight gain from your child. You are a parent, and like any other you might start blaming everything on the team that works with you or wrongly accuse your husband for everything that happens just because you are lost and simply don’t know what to do. Don’t worry, you are not alone. We are here to help you in your most difficult time.

Why can nobody tell me for sure what the future will hold?

book tube feedingThe medical team that takes care of your baby consists of devoted professionals. The treatment of premature infants and new born babies requires highly skilled, dedicated and experienced professionals with special training in all cases your child might need help with. There is hardly a niche in the health care system where money and time are available in such generous amounts as in the field of intensive neonatal care. Your team has been doing its job for many years and we hope that a mutual atmosphere of trust has been established between both of you. They are doctors, pediatricians, surgeons, nurses, therapists but definitely not prophets. This is why nobody will be able to give you “full security” and complete insight about how your baby will be doing in a few weeks or months from now. Probably the health of your child is still not stabilized fully and unfortunately unforeseen complications can happen every day. An uneventful day is therefore a great day! In this phase, predictions are about as vague or true as the weather forecast for the next month and the best you can do is try and hold onto the reports and observations day by day as your baby is being watched and treated 24/7 by a very well trained team, that takes immense satisfaction in working with the tiniest, youngest and most frail and fragile patients existing.

Why can’t I be calmed by well-intended explanations?

Even if the doctor takes time and care to sit down and explain the current situation of your baby, you most probably will never be quite sure that things will go just the way you have been told.

Your life has been turned upside down, you have learned about things you did not know existed a short while ago. You for sure do/did not feel prepared for all of this and at times, you still cannot quite believe this nightmare is really happening. Probably you have noted some diagnostic terms and have checked about them in the wide jungle of the Internet and have found pages and pages of frightening information. The term “complications” appears over and over and you cannot understand or accept why all possible complications seem mainly to be happening to your baby! You might experience other parents going through the sad challenge of losing their tiny baby and you might also see parents take home their child after months of intensive care feeling insecure and nervous. Knowledge and facts are not really the answer for you. A warm hug and a good cry and maybe some laughter afterwards might be more along the lines of what you feel you need. Whatever they tell you, you cannot quite believe it and please try and accept this as being the most normal and actually best possible outcome. You will not find utter peace of mind, so please don’t be angry if you notice this.

Why do I always leave from the doctor stressed?

Well, this one is easy! Doctors like to help and know what they are doing. This is why most of them actually went through a lot of effort to become a doctor and they have surely learned enough from textbooks and lectures! The thing is, when they studied, tubes either had not or had just been invented recently, and for the first 20 years research has focused on a few specific aspects like surgical complications or nutritional outcome of enteral feeding in rare medical conditions. They are trained quite well in discussing the need and indication for placing a tube and will be able to advise you on the Pros and Cons of which tube to use and also be able to calculate how much formula your infant will need. But when it comes down to side effects like skin irritations, excessive vomiting and unexpected complications like food refusal, nausea and gagging, their expertise comes to an end.

child and mother at play picnicWhilst parents become more desperate as the weeks of enteral feeding pass, the child might not gain weight in an expected manner and the parents will logically seek more advice. A good pediatrician, even if he/she is experienced, has usually seen just a handful of patients receive enteral nutrition support. As it is likely that each of them reacted differently and each set of parents get on differently with their child’s possible limited tolerance for increased volumes, his or her experience on tube feeding related issues is bound to be close to zero.

As in the case of limited tolerance of the tube feeds, the pressure of parental expectation increases, the infant’s intake and weight decreases and all involved adults become desperate and often angry at each other. A mother visiting a doctor alone with her tube fed infant will most likely be advised to give more formula so as to gain weight. She will feel guilty and know that she will not be able to increase neither the caloric density for enrichment nor the volume. So the dialogue will become stressful and awkward.

Recommendation: ALWAYS take your partner, husband, the child’s dad or actually any man or second person with you to doctor’s visits; the atmosphere will generally be better and less unnecessary tension will arise. Unfortunately on an information level, it will not change anything.

Marguerite Dunitz-Scheer