Introduction
I am so thrilled to announce that Our NICU Roadmap, our newly published comprehensive NICU Journal is complete and available for purchase on Amazon! You can head to Amazon directly and search for “Our NICU Roadmap“, or head HERE for the direct link, additional images and a full description of the journal.
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My vision for Our NICU Roadmap stemmed from the lack of a comprehensive NICU journal being available for NICU parents. I wanted to develop a journal that was not only was a great resource for parents, but that also served as a place for NICU parents to document their baby’s progress each day while in the NICU.
As a Neonatal Nurse Practitioner, I had the medical knowledge and experience on my side during our son’s NICU journey, so I knew the questions to ask the NICU care team, but I felt there was not an appropriate place to document all of the information. I wanted to remember and document information about my pregnancy, William’s delivery, his birth stats and all of his achievements along the way, but especially his daily labs, ventilator changes, feedings, and the plan of care each day.
So in our podcast episode 22, I spotlight my favorite part of the journal, the daily log. As any NICU parent knows, there are new changes that occur daily in the NICU. Personally, I wanted to document all of those changes, not just as a keepsake, but because I as his parent wanted to keep track of his daily weight gains or losses, lab results, ventilator changes, feedings, who cared for him each day, how I felt, the plan of care plus so much more!
I created the daily log section so parents not only had a place to document their baby’s daily updates, but it was also meant to guide parents with questions I believe they should ask the NICU care team each day! So get ready for a sneak peek into our brand new NICU Journal as I highlight all of the questions you should ask your baby’s NICU care team each day as well as the most pertinent information you should document daily during your baby’s NICU journey.
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Episode 22
The importance of parental involvement
I strongly believe in family-centered care and parents not only being an active member of their baby’s care team, but the most integral member! As NICU parents, you may feel completely overwhelmed by how fragile your baby is or that you have no previous knowledge of the care we provide in the NICU, but you will learn and we are here to help. With the appropriate knowledge and resources, you will become more and more confident in not only helping to care for your baby, but also being actively involved in the decision-making each day. The neonatologists, NNPs, NICU nurses, respiratory therapists, dietician and all of the team are very knowledgeable and competent to care for your baby, but you should definitely be involved as well. Afterall, this is your baby!
To start, I strongly encourage parents to be present for daily rounds each day if possible. During rounds, the team will review the plan of care and the most recent changes on your baby. It is the best time to ask for clarification or to ask any questions you have including what we will review here today. If you are not able to be present, I recommend asking the questions you have when you arrive at the hospital or over the telephone. So let’s take a deep dive into the daily log section of our new NICU journal so you know exactly what questions to ask!
What did my baby weigh? Did they gain or lose weight?
NICU parents typically have one main question each night when they call to check on their baby – how much my baby weigh? In the NICU world, especially when we are referring to micropreemies or extremely low birthweight infants (ELBW), we celebrate every ounce that our babies gain. In our daily log, just below the date and day of life, we have an area started for you to document your baby’s daily weight, how much of a weight gain or loss it was in both grams and lbs and ounces. As you may know, all newborns lose weight in the first few days of life, but especially with premature infants, they tend to lose weight for several days, before they slowly start to regain. It is a BIG deal once they return back to birthweight and gain a little bit each day!
What respiratory support is my baby on?
If you are not in the practice already, I want you to ask the NICU care team not only what respiratory support your infant is on, but specifically what are the settings. Whether they are ventilated with a breathing tube or on CPAP, it is important that you at least know if there is an improvement or what changes were made to their settings.
For a full review on ventilation and respiratory settings commonly used in the NICU, I highly recommend that you go back and listen to our podcast Episode 10: Ventilator Review in the NICU – What Does Positive Pressure, Volume-Targeted, and High Frequency Do and Episode 11: Non-Invasive Ventilation in the NICU – A Review of NIPPV, CPAP, HFNC, and LFNC too.
I recommend that you ask the NICU care team what settings your baby is on and if you are unsure what they mean, then ask for clarification on the meaning and how the settings compare to the previous day. Were they able to wean or did that have to increase the settings? Also, inquire about the range of the FiO2 or the percentage of oxygen your baby has required over the last 24 hours.
What labs, X-Rays, or ultrasounds did my baby have done today?
To go along with the respiratory settings, inquire about your baby’s blood gas results. Especially early on when your baby is more critical and on respiratory support, it is likely they are following at least daily blood gases. Even if you do not fully understand the numbers, it is important to know how the team interpreted the blood gas results and if they made any changes in your baby’s respiratory support or ventilator settings based on the blood gas results.
Labs will be drawn on your baby throughout their time in the NICU. Lab values help the providers evaluate your infant’s clinical status and/or response to treatments. Although I would never expect you to completely understand all of the lab results, it is helpful for you to understand the trends. We recommend that you ask the care team each day what labs your baby had drawn and what the results were. We created a dedicated space to document your baby’s lab results including blood sugars, bilirubin levels, CBC results, and/or electrolytes. This is not to say that your baby will have these labs drawn everyday, but they will be common especially in the first few weeks of their life.
Your infant may also have head ultrasounds and/or X-Ray results throughout their stay. So we have a dedicated space for you to write down those results as well. Again, you may not fully understand what the X-Ray shows, but ask the providers in layman’s terms what your baby’s X-Ray looked like.
What is my baby being fed and what is the volume?
Next, we have a separate section just for your infant’s feedings. Initially, your infant may not be fed on the first few days of life. But, once feedings are initiated, the provider will start with small amounts based on your baby’s weight and the volume will be gradually increased over days to weeks. We want you to document what your baby is being fed, whether it is your expressed maternal breastmilk, breastmilk that is fortified for extra calories and nutrients, donor breastmilk, or formula. Next to it, you will document the volume, because whether your infant is fed every 3 hours or continuously, the volume can change day-to-day as the team slowly advances your baby’s feedings especially in the first couple of weeks. Following the type of feeding and volume is what your infant took by mouth versus through their feeding tube. Especially for extremely preterm infants, this area will not be used initially, but once your baby is older and stable enough to attempt bottle feed or nurse, it will be great to look back and see their progression and improvement each day!
Is my baby receiving any IV fluids?
Next, there is an area for you to document if your baby is on any IV fluids. With time, you will quickly learn about the different IV fluids your infant may be on whether it is TPN (total parenteral nutrition), intralipids, or clear fluids. For a more in depth understanding of the common fluids used in the NICU, I encourage you to go back and listen to Episode 5: NICU Equipment From Head to Toe: What You Need to Know. In this area, write down what type of IV access your infant has and if they have any IV fluids infusing.
Has many voids or stools has my baby had in the last 24 hours?
Now, I’m sure you never thought you would ever be so concerned with how many voids and stools your baby has each day, but you will! The first time I ever did kangaroo care with our son William, he basically had gauze around his private area rather than a diaper to avoid skin breakdown. Well, let me just tell you that gauze does not always hold up! Right as he was skin-to-skin with me, he stooled right down my chest! But, I absolutely did not care! I was just so thrilled that he was stooling! So, you will want to know and document if they are voiding and stooling regularly!
Who is taking care of my baby today?
The next section allows you to document the members of the NICU care team who are caring for your baby each day. You will not initially know the names of the Neonatologist, NNPs, bedside nurses or respiratory therapists, but with time, you will get to know them very well. And yes, you will absolutely have your favorite nurses, NNPs or Neonatologist in time, but I can tell you from personal experience that it’s great to look back and see who cared for and loved on your baby each day. We also created a specific section in our journal that lists out all of the common NICU care team members that you may meet while your infant is in the NICU with a detailed description of their roles. Or head back and listen to our podcast Episode 2 NICU Cast Members: Leading and Supporting Roles where I dedicate a full podcast episode to describing all of the NICU care team members.
May we please do kangaroo care today?
Next up, kangaroo care! If you have listened to my podcast before, you know my fondness for kangaroo care! Kangaroo care or skin-to-skin care is holding your infant skin-to-skin on your chest. It allows you to bond with and hold your baby when they are so small. Kangaroo care is so beneficial not just for the baby, but the family unit as a whole! There are countless benefits for the baby, including but not limited to improved oxygenation, it helps infants with self-regulation, successful breastfeeding, neurodevelopment and nervous system maturation. It minimizes your baby’s stress and pain, prevents and treats hypothermia and it has also been shown to stabilize vital signs and decrease the number of episodes of apnea and bradycardia. For parents, it promotes parental bonding, attachment, self-confidence, positive mood, and increased lactation.
If you have not already listened, please go back and listen to two of my favorite episodes, to hear all of the benefits of kangaroo care for the infant and parents, Episode 14, Kangaroo Care in the NICU: How Does it Benefit the Infant and Parents? And for a step-by-step guide of kangaroo care and how to overcome the common barriers, listen to Episode 15: Kangaroo Care in the NICU: how to address the barriers, assess for readiness, and transfer the infant safely. I always recommend the standing transfer method for kangaroo care, which can be intimidating initially, so we have a video available where you can see exactly how to do the standing transfer, just click HERE!
Now, I hope if your infant is stable enough that you are able to do skin-to-skin care on a daily basis. Since I believe so strongly in kangaroo care and how much it will benefit your baby and you as parents, we have a section dedicated specifically to kangaroo care in our daily journal log. We recommend that you document who did kangaroo care each day (either Mom or Dad) and for how long. The question I want you to ask the care team each day if it is not already being offered to you is, “May we please do kangaroo care today?”
I recommend that you do kangaroo care at least once a day if your infant is cleared to do so and for a minimum of an hour. I did daily kangaroo care with William for 3-6 hours a day. If my husband came in the evening, then he also did kangaroo care. We attribute a large portion of William’s overall success to our frequent and consistent kangaroo care. Hopefully if your infant is stable enough, kangaroo care is being offered to you daily by the care team, but if not, I want you to feel empowered to ask EVERY DAY! Yes, initially, it can be intimidating to ask the care team, but remember, this is your baby! It can also be a bit scary to hold your infant as they are connected to so many tubes and wires, but I promise that you will not regret it! I hope kangaroo care becomes a daily part of your NICU journey!
What books did we read today?
Following kangaroo care, I added a section so you could document the books you read to your little one each day. I also strongly believe in singing or reading to your infant everyday. Read to your baby in a calm and steady voice either while doing skin-to-skin care or while they are in the isolette. You should also consider singing simple lullabies or songs to your infant with a steady rhythm and tone. Reading promotes parental involvement, bonding, and engagement between you and your baby. Before birth, the mother’s voice is the most important sound infants listen to while their hearing is developing. If infants are in the NICU, the unit sounds they hear are not what they are used to.
Reading to your baby is one of the most beneficial things you can do for your baby’s growth and development. Once babies hear language and/or words, hundreds of their brain cells connect and it helps to set up brain pathways for future learning. Books with rhyming stories train young brains to learn phonemes which help to build the blocks for later language development. The American Academy of Pediatrics (AAP) recommends 15-20 minutes of daily reading for all babies and children. If you are unable to visit the NICU everyday, ask your baby’s nurse to read to them. Plus, if you commit to making daily reading a regular part of your time with your baby early on, it will be more likely to become part of your daily routine once you bring your baby home.
If you are concerned about overstimulating your baby, speak to the care team so you can learn particular signs that may indicate if your baby is overwhelmed. If so, some simple modifications may need to be implemented so you can continue. A few of the signs include: fast breathing, yawning, changes in skin color either pale or bright red, excessive alarming on the monitor, splayed fingers, tremors, and/or putting his or her hands in front of their face.
If your baby continues to show some distress after modifications, just pause and try again later or the next day. Do not give up! I remember most of the books I used to read to William in the NICU and now we read them together years later! It brings back a lot of memories, but most importantly, reminds me just how far he has come! So please, consider reading to your NICU baby today if you have not started. Many NICUs have donated books for you to use if you have not had the opportunity to get any. And be sure to document each day what you read to your little one!
Who came to visit us today?
The next section is who came to visit you and/or your baby each day. Now, before COVID, the number of visitors allowed into the NICU and the restrictions in place were much more lenient than they are today. And while each institution is different in their current restrictions, it is important to document your daily visitors. Even if family or friends come to visit you outside of the NICU, you will want to look back one day and remember who came to see you, what gifts they brought etc, so it is important to have a place to document your support system during the NICU journey.
How do I feel today?
The next section focuses on how you feel each day – and believe me, it will vary. I think it is important to not only address your feelings each day, but it is also very important to document them. This is not an area of judgement – just a safe place where you as a NICU parent can write down how you feel. Sometimes, it is difficult to tell people how you feel, but you’ll find that writing down is easier.
What was our high and low today?
Next, there is a dedicated spot to write down your high and low from each day. Because, if you have not learned already, there will be highs and lows each and every day. But, I think it is incredibly important even on a day that feels as though there are more lows than highs, to still find a high for the day. It could be that your baby had a stable blood gas or the first time you were able to do kangaroo care, or they were free of apnea all day! Whatever your high is, write it down! As I’ve said before, this is a roller coaster of emotions, but it is essential that you try to stay focused on the positives and the highs during the difficult times. By finding a “high” in each day, it will help you to see the progress your baby is making each day, even if they are baby steps. Some days, it will feel as though there is minimal progress, but by finding a positive, you will see just how far your little one has come in their NICU journey!
What questions do we have today?
Next we have an area for you to write down your daily questions. As I previously said, I always encourage parents to be present at their baby’s bedside during the daily care team rounds. I completely understand that every family’s situation is unique and that may not always be possible, but whether you are present during rounds or you speak with a provider on the phone, I want you to have your questions ready.
Once the NICU care team reviews your infant’s labs, respiratory settings, and their overall clinical condition with you during bedside rounds or on the phone, you may become overwhelmed by all of the information you were given – so it is important to have questions ready so you do not forget. And obviously, you can ask any other questions that come up based on the daily plan of care once they have reviewed everything. Please just remember to ask questions. If you do not understand something, then ask for clarification. Every NICU is different, but some care teams have very large groups that round so it can be overwhelming, but please do not be afraid to ask questions. If you need more clarification after rounds, I encourage you to ask your nurse or ask to speak with one of the providers again. Remember, this is your baby, so you should have a good understanding of what is occurring with your baby each day.
What is the plan of care for today?
The final area of the daily log is the plan of care. What exactly does this mean? Each day as either your baby’s physician and/or Neonatal Nurse Practitioner reviews all of the aforementioned including your baby’s vital signs, lab results, respiratory settings, feedings, IV fluids, urine output, stools, and medications your baby is on, they develop a plan of care for your baby each day. This basically means, what changes are they going to make. Will they wean their respiratory support, adjust the composition in their TPN or IV fluids, add, remove, or adjust a medication, or possibly advance their feedings. The plan of care is basically the summary of the changes for the day. This is not to say that it will be the only time changes are made throughout the day, but it is what they plan to start with.
As providers, we always want your infant to be progressing forward, but there is a fine line in ensuring they progress smoothly without overwhelming them or making too many changes. We may change one parameter on the ventilator then wait to see how they respond with either monitoring their blood gas or their FiO2 requirement, but this “plan” is discussed and reviewed with the team each day. So although I do not expect you to memorize or write down every single change, this is a good spot to summarize the NICU care team’s goals for your baby that day.
Closing
So there you have it – all of the questions and topics I believe you should either your baby’s providers about each day as well as the daily topics I feel are important to document. As I said, some areas you will use more frequently, especially early on in the first few weeks of your baby’s life, but each day your baby will progress and you will see less labs needing to be done and more advancements of their feedings.
I created the daily log portion of Our NICU Roadmap so you can stay actively involved in your baby’s daily progress and plan of care. I have provided you with a guide that equips you with knowledge and questions to ask throughout your baby’s NICU journey. Each day, you will not only see your baby’s daily progression, but you will also know to ask if they had a blood gas or labs that day? Or what changes will be made on their respiratory support. Once you begin to understand more each day, and I promise that you will, your confidence will build which will continue to encourage your daily involvement with your baby and make you feel more like a parent! I want you to stay actively involved and not just become a member of your baby’s care team, but the most integral member! Our daily log will also allow you to see all of the small and large steps of progression your baby is making each day which is so important! Remember, this is a marathon, not a sprint!
I hope this review was helpful to you and allowed you more of a deeper look into our new NICU journal. I put a lot of thought and preparation into our NICU journal so it would be beneficial to you as parents and include everything that I felt was missing in a NICU journal. I wish that this would have been available when William was in the NICU and I hope it eases your NICU journey if even in the slightest way.
Remember, once empowered with knowledge, you have the ability to change the course.
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