What happens after the initial shock that your baby was really born so early has worn off? First you need to breathe. Realize it is okay to cry. Get mad. Calm down. Feel frustrated, cheated, lied to, betrayed. But donít be afraid to love your baby. Give him or her a name. Breathe some more.
The NICU can be a terrifying place. You will feel helpless. You may feel cruel having tubes and machines hooked up to your baby. You will feel robbed of the birthing experience. You will long to hold your baby. Your feelings will change at an alarming rate. So many factor will be contributing to your mental state. Between hormones, medications, adrenaline, and a lack of sleep, it is amazing anyone can function at all, let alone think.
You will have what seems like million questions. Is my baby going to live? What happened? Why did this happen? But the most important question you will face are: What happens now?
Our daughter was born slightly before 25 weeks at 13 inches long and 1 pound 11.5 ounces. She was given a 65% chance of survival. We are so lucky that she is now healthy. Our time in the NICU was filled with questions.
The questions vary tremendously depending on the severity of your babyís condition. A baby born before 23 weeks has only a small chance of survival. Their little bodies just havenít developed to the point of completely connecting all the necessarily parts. Occasionally you will hear of a survivor with complications. Will this child be a miracle? Is there any chance my baby will survive? Should I keep him alive on machines if there is no chance of survival? What kind of life would my child have if he does survive? Are we prolonging agony without the chance of improvement? Only parents who have to ask those questions understand what it is truly like, and only they can make those decisions. The responsibility of anyone who knows parents who have faced this decision is to give emotional support, no matter the decision or outcome.
There is no complete list of questions you should ask because each preemiesí situation is different. KEEP A NOTEBOOK and write down any question you have, no matter how simple, complex, or unusual. You will want to have a record of what you have already asked, whom you spoke with, and the answers you were given. It is very easy to forget or not comprehend the answers the first time you ask a question. Having a notebook will allow you to go back over questions and answers when you have more time to think. It will also give you a point to start with researching any topic or condition on which you wish to have further information.
We were told to go ahead and research our questions, but to understand that a lot of what you find on the internet is not current or may just be opinion. That was actually very good advice.
The general questions to start with are: Will my baby live? What are her chances? What caused her to be born early? Did she have a brain bleed? If so, how severe (what grade?) How are his lungs? Does he have any infections? Does she have any conditions?
The question we all want to ask: Do you have any idea how long it will be before she can come home? Is one question that canít be answered. The NICU stay will probably have its ups and downs, good days and bad days. If you ask how long it will be, you will get an estimate but donít set your expectations on that date.
The Neonatologist will tell you your babyís latest condition every time you meet. You can also ask the NICU nurses. Keep in mind that the Neonatologistís job is to medically assess and treat your baby. The nurses medically treat your baby, but also have the responsibility for day to day care. You can ask the nurses questions pertaining to how your baby is doing that day, but the more medical questions should be addressed to the Neonatologist. Always keep paper and pen with you to jot down anything on which you may have further questions. The nurses will be busy, but at some point should be able to answer a few questions or pass along your request to have another meeting with the Neonatologist. Let your babyís doctor know your preference. There is nothing wrong if your parenting style is to let the doctors do their job and give you the overall situation. Equally however, there is nothing wrong with wanting to know every change they are recommending in your babyís care.
Donít let questions build up. What you donít know will frighten you all the more. Ask questions. Ask them again later and each time you feel they need to be readdressed. Also understand that you can control the amount of information the doctor is giving you. If you donít want as much detail as the doctor is going into, let him know. I suggest bringing someone with you that will also listen to the doctorís answers. Often I found having another set of ears helpful. It is easy to loose focus, whether from the medicine still in your system, the hormones running through your body, or the confusion running through your brain. Also, just having another person to lean on helps.
There are not always answers to every question. When the doctor tells you it is an opinion, she is trying to relay what the outcome will be based on her experience. Every child is different and will fight their own battles with whatever they can. Medicines work on some and not on others. Some babies beat the odds and some lose their battle. The doctors will do everything they can.
The doctors will give you options. They will make recommendations. But it is up to the parent to make the final decisions. If time allows, do your research and come back to the doctors with more questions until you are ready to make a decision.
If and when your doctor recommends surgery, there are general questions to ask: What is the condition requiring the surgery? What is the procedure? Is there any alternatives to the surgery? Are there any complications? Will she require a blood transfusion? Is the surgery worth the risk? What is the recovery time? What is the desired outcome from the surgery?
The medicines your doctor recommend have a similar list of questions: What is the medicine for? Why are you recommending this medicine? Is it always effective? How long will she take it and how often? Are there any short term complications from the medicine? Will there be any long term complications? What should we be looking for as a possible reaction?
Other questions relate to preemies specific conditions such as Retinopathy of Prematurity (RPO), which may cause sight difficulties or blindness; Reflux; PDA and heart murmurs, Cerebral Palsy, bronchopulmonary dysplasia (BPD) or chronic lung disease (CLD), etc. Discuss these in length with your Neonatologist.
It is also advisable to ask the doctor if there are any further questions which you havenít asked, but should have. I asked this question at the end of every meeting.