Life in the NICU - Community

This is my last post on life in the NICU. I'm a couple of weeks removed from it now and think I've gotten most of what I wanted to say out of me. One last thing that struck me is how much community support I've gotten on this journey. First, from the staff at the NICU itself. They know what an unexpected journey having a preemie baby is. They are wonderfully well trained to not only help your baby get through, but also to help you get through too. Secondly, the other parents whose babies are in the NICU at the same time. You are all on different parts of the journey. You may not chat very much (if at all), but you know by the looks and smiles at each other that you all understand. Finally, my most unexpected source of NICU community was found online. A number of people have contacted me who have been through the NICU journey (on both this blog and my others). I was really touched and encouraged by your messages. So thank you!
If you are reading this post at some point because you are going through an NICU journey, don't hesitate to leave me a comment to let me know. I'd love to be a voice of encouragement for you. You aren't in this journey alone.

Life in the NICU - routine

It's amazing how fast you can adapt to a new situation and find the comfort of routine in it. During our month at the NICU, the strangeness wore off and routine set in. I found the best places to park at various times of the day (it always helps to park in the same spots if you can swing it). I knew at any given time which were the best elevators to take. Even my 2 year old found routine comforting. He helped close our privacy curtain and knew once the baby had finished eating it was time to find the pump. You just do. You learn to deal with the curveball life has thrown at you and you go with it.
Here's what our day looked like:
-drive to hospital
-park and go in to the 2nd floor
-wash hands
-say hello to nurse, get update
-change baby's diaper
-get her vitals checked
-weigh her
-close curtain
-feed her
-weigh to check how much she's eaten
-top up with gavoge
-put her back to bed
-get pump
-pump milk
-label and store milk
-clean pump and pump kit
-go home
repeat routine several times a day

The few days following our daughter's discharge from the NICU I felt disoriented. What was I going to do with my time? I had to create a whole new routine for us. There is comfort in it.

Life in the NICU - the monitors

The monitors will drive you nuts if you let them. All the babies in the NICU are hooked up to monitors. They keep track of their heartrate, oxygen saturation levels and Resps. They are a guide. And they aren't fool proof. It's pretty scary to watch your child's heartrate monitor flatline, but when you look down at them you know they are breathing and nice and pink. Sometimes it's just the monitor not picking it up. Or your child has squirmed so much that the monitors are now on top of each other and not reading correctly. Don't jump at all the bells and dings either. Relax about it. Yes, it is hypnotic to watch. The nurses themselves don't use those as the actual readings. They take the vitals for heart and resps themselves. So yes they are there, but they are a guide and remember, when you take your precious one home, they won't be hooked up to them anymore, you have to learn to look at your baby yourself to know what's going on with them. All in good time.

Life in the NICU - hospital observations

I spent a lot of time at the hospital over the past month. A few things stood out to me as I went through the halls. Of course the NICU is on the same floor as Labour and Delivery. I walked through the L&D waiting area every day, several times a day. It seemed to me that you were more likely to see anxious families waiting at night time. And you could tell how long they'd been there by how much trash was sitting nearby (pop cans, water bottles, chip bags...). You could also spot the 1st time parents vs. the been there done that parents quite easily. Those wandering around smiling and relaxed were not having their first baby. They were much too calm and a huge contrast to the first timers. The first timers seemed to have exaggerated pain (I don't know what their attitude to contractions in later labour would be like) and hovering, panicked looking dads. I wish them all well.
Another image that stuck with me happened in the cafeteria. There was a young doctor there holding court as if he was Doug Ross. Good looking guy. 3 other doctors around him, listening to his tales. And you could just tell they were talking about women. Very amusing.
The last image I want to share is the very important friend that burst into the NICU, oblivious (and unconcerned) about the visitor rules. Visitors to the NICU are limited to 4, one of which must be a parent. But there she was in full make up and heels, carrying the obligatory newborn gift shop set in blue. Turning her nose down at every other baby in there. Disregarding the nurses trying to get her attention. She finally submitted to one rather authoritative nurse, admitting that she hadn't washed her hands on entering. She wasn't a parent, and was not accompanied by one. Oops! It was pretty funny to watch.

Life in the NICU - Homecoming

My daughter was discharged from the NICU yesterday morning. We suspected she might be, but it was a Wednesday the earliest, or Thursday. I'm so glad it was Wednesday. She was doing everything she needed to do. Eating 100% orally, no respiratory problems, and passed her car seat test. All she needed was the doctor's okay. The pediatrician was more than happy to release her at last.
We packed up all her belongings (it's amazing how many things a little one can have at the hospital). I collected all that extra pumped breastmilk from the freezer (I am set for babysitters and eventually pablum down the road). My 2 year old and I took all her belongings to the car while the nurse finished her discharge package. My son was very concerned that we would forget to bring his sister home while we did this. We came back, I signed a form and collected the paperwork and we were off.
It was a very surreal feeling. I can't believe that my life isn't split between home and the hospital anymore. I made sure we went out that night. As it was Wednesday we went to the college where my husband is working on his Master's degree. Each Wednesday they have a community dinner. It was so nice to see other people and have our daughter welcomed as a member of the community there. Many, many people have been praying for her and we're so glad they did. Keep on praying as we make this transition home. I have more to say about our time in the NICU and will post a few more thoughts over the next few days. Keep checking in.

Life in the NICU - It's only eating????

The majority of my daughter's stay in the NICU has been concerned with feeding. Can she feed orally? Does she need a feeding tube? Premature babies do not yet have the jaw and muscle development to handle the suck/swallow combination. They also have probably had difficulty breathing. So combine breathe, suck, swallow and get enough food and by the way we're really little and tire easily...and you get a difficult time eating (breast or bottle fed alike).
So we started out pumping, a lot of pumping. Because she wasn't breastfeeding yet, I had to let my body know that yes, indeed I wanted this milk and I had to build up a supply for her needs. When she was ready to be tube fed, she tube fed my breastmilk. So I pumped, and I pumped, and I pumped. My milk came in. I stored it, she 'ate' it. And we started to breastfeed.
She needed help here. We used a lactation tool called a nursing shield that helped her nurse. Preemies often can't quite latch onto the breast without slipping off. A nipple shield is make of sillicone and fits right over your own nipple, allowing the baby to have an easier time of it. We also used a lot of breast compressions, helping her get to the milk that she needed.
We started off slowly. 2 ccs, 4 ccs, and then the jump to 10ccs, 14ccs. We enlisted the help of a lactation consultant - an absolute fountain of breastfeeding knowledge. She reminded me that 40-42 weeks gestation babies can have difficulty with breastfeeding initially, never mind these 35 week gestation babies, they shouldn't even be born yet, never mind learning all of this. She helped me get a better position for the latch and how to do a better breast compression. And just encouraged me. She'll get it, it just takes time. You can't rush development. Did she get it? All of a sudden she started to take 16-24 ccs per feed (she needed over 50 at this point - over 60 by the end) and then one day she took 51. 51! I was so excited. It was the first time I didn't have to end a feed by gavoging her (tube feeding). Then the full feeds started to take over until finally she went from being 7% oral to 65% and finally 100%. She needed to be 100% for over 48 hours to come home. Because I couldn't be there for every feed, I okayed the nurses to bottle feed her breastmilk on the feeds I was at home (you have to balance, and I have 3 children to care for). I stayed over nights in the parent courtesy room, sneaking off in the wee hours of the morning to get my kindergartener off to school.
Getting a preemie to eat orally is a lot of work, but neccessary work. You wonder if they will ever get it, but they do, all in their own time.

Life in the NICU - The Car Seat Test

Here it was, my big moment. I walked in the NICU carrying my daughter's car seat. I saw the looks of admiration/jealousy on the faces of other NICU parents. We all knew what this meant. Our time left in the NICU was running out, my girl would be coming home soon.
So what is this car seat test all about anyway? Basically, the baby sits in the car seat for an hour and half while on monitors and the nurses watch and records what happens. Car seats were not designed for premature babies. A lot of these babies have had some level of respiratory needs. The car seat test is designed to make sure that they are ready to go in a car seat and not go into respiratory distress.
My girl passed with flying colours!

Life in the NICU - the Sibling Factor

The NICU is a place of rest and healing. There is soft lighting and not a lot of noise. The nurses try to create a place resembling life in the womb to allow these little ones to grow.
My daughter has 2 noisy big brothers (ages 2 and 5) - what were we going to do with them. The first 2 weeks we were in the NICU we were quite blessed. My mom was here to help out. I could go up to the hospital and not worry about my boys, she had it all under control. Of course this couldn't last forever. She had responsibilities back home and had to go eventually. So how did I cope with balancing my daughters needs and my boys?
First - I took them both up for individual visits at the hospital so that they would know what was going on. I explained everything I could in language they would understand. I also let them know that yes, she would be leaving the hospital eventually and living with us (very important for my 2 year old who has been the family baby until now). I also packed a backpack full of activities for them. Colour Wonder colouring books, hot wheels cars, stickers and paper. Anything that would keep them quiet and busy while I tended to my daughters' needs.
Then we got ready to all go up together. I knew that the space we would be in was small for 2 busy boys. Before we even left for the hospital we talked about my expectations of them. They needed to stay quiet (for both their sister and the other babies), they needed to stick like glue to me (no running around and being foolish) and they needed to get along with each other, listening to me.
So we did it. We all went up. And the plan worked. I had both of them there at least once a day over the past week and a half. We always reviewed the hospital rules on the way there, and they amazed me by following through so well. I'm so proud of them! It can be done, you just have to figure out a way to do it.

Life in the NICU - the Nurses

I have total and complete respect for the job of an RN. They work ridiculously long shifts in a high demand environment. They are up to date in knowledge of their area of nursing. They also have the people skills needed to present information to their patients (or in my case) parents of patients.
I've seen a lot of nurses in the past few weeks. The NICU we are in staffs 40. I haven't seen all 40, but I've seen a lot of them. As the parent of a patient at the NICU, I would recommend that you do your best to chat with the nurses about what is going on. There isn't a ridiculous question to ask. You need to stay best informed about what is going on. Keeping in the loop with the doctor is also very important. If you have a plan (which you will) you want to make sure it is followed. Be polite, friendly and assertive (a fine balance when you are in an unfamiliar environment I know). If your experience is anything like mine, you will see several nurses (2-3 per day). Some will only be with you once, others you will see several times. They are very good about getting updated about your child. All the nurses conference about the babies at the end of and beginning of shifts to stay in the loop. Yes, it can sometimes be frustrating to see so many different people. They all have something to offer to their job and they all have their own gifts and talents. Just keep in mind that you all have the same goal, making sure that baby is healthy and on the road for home.
While I'm talking about the nurses, let me say that I could not do what they do. A lot of these ladies (I say ladies purely because the NICU staff at the hospital we are at are all women) work 12 hour shifts. 12 hours is a long, long time, especially if you are working the 12 hour nights. Some of these women do 2 days (12 hours each), have a one day turnaround and then do 2 nights (12 hours each). I don't know how they do it. They also can have times where everything is slow going and scheduled and then all of a sudden a new baby is being admitted (or several) and everything flips into high gear. Think about it this way. You know how needy a time it is just taking care of one newborn. Now imagine looking after 2 or 3 at a time. All of these babies are on monitors. Some need oxygen. All need feeding of some kind. Some are on medications. Some are in isolettes, others are in bassinettes. And then there are parents who are in and out. There are reports and paperwork to be filled out. Measurements and vitals to take. Always keeping track of each baby. And you aren't always with the same babies. You may have a couple days in a row with one baby, but the next shift you are with a completely different child. I admire their work, I really do. I've found the nurses I've seen to be extremely helpful and kind. Professional and friendly. They are both encouraging and realistic. They make this experience one that I know I can keep on keeping on with. My hat's off to them.

Life in the NICU - The Learning Curve

I wasn't prepared for a preemie. My record of giving birth had stood up pretty well, 2 babies, both full term. I really knew very little of what went on in the NICU. I knew there were small babies in there. I know someone who delivered her son at 28 weeks last year and spent 10 weeks traipsing back and forth from home to hospital.
I've learned a lot since then and learning curve is huge.
I first saw my daughter in the NICU the morning after she was born (yes, I did get to see her and hold her for a while before she was admitted in). As she was early, she was having some difficulty with breathing. She spent the first 5 days in an isolette, on and IV. Her first night she had a CPAP mask. When I first saw her inside, I saw lots of wires. Her little arm was splinted up and her breathing looked like a lot of work. I didn't know if I was allowed to touch her, or even how to open up the isolette. The nurse started filling me in with terms and plans that I knew nothing about.
3 weeks later I feel like and expert.
IV I knew already, I'd been hooked up to one of those myself. The IV provided the hydration that she needed. Once she was ready for it, her IV bag was changed from a sugar water formula to a TPN formula that contained more nutrients necessary, until she was ready to start to try to feed.
The CPAP mask helped to give her oxygen and just open up her lungs a little bit more.
The NG tube is a feeding tube, through her nose and into her tummy. It attaches to a syringe where my breastmilk is warmed up and placed in and goes directly down.
Everything in NICU is based on numbers at first. How many CCs is she taking of breastmilk? What is her weight today? How much does she need to eat in order to gain? What was in her diaper? How many diapers is she needing? How long is she sleeping? How long can she sleep before needing to feed again?
I hear other parents in the unit bay discussing all these things. I hear the nurses explaining it to them. And I feel somewhat educated now.
I know how to attach and unattach all those wire leads to weigh her. I know how to use the scale and double check her numbers. I know how to use her feeding tube unassisted. None of it scares me anymore. It's just part of life now.

Life in the NICU - Jealousy vs. Encouragement

The weekend my daughter was admitted to the NICU there were 21 babies in there. It was, by the nurses' own admission a crazy weekend. There are now 10 babies in the NICU. I've seen babies come and I've seen babies go. I know not all of them are in for prematurity. Some come in for dehydration, some for antibiotics, some are babies with sugar issues. My firstborn was one of these in and out babies. He spent one day in NICU purely because he was born with the umbilical cord wrapped around his neck. He was full term.
Of the babies I've seen listed on the board, there are only a few left who were there when my daughter was admitted. The rest are home. I do have a mixture of jealousy and encouragement about this. I'm jealous because I want my daughter home too. I'm encouraged because I can see there is a light at the end of the tunnel. These babies do get home eventually, they just all have their own paths and timelines.

Life in the NICU - Day 22

My daughter was born 5 weeks early. She is in the NICU. NICU stands for Neonatal Intensive Care Unit. She's now 3 weeks old and yes, she's still there. I keep reminding myself that technically she should still not even be born yet. Each day I celebrate little milestones that let me know we're one step closer to having her home. I know in my head that you can't rush development. There's nothing I can do, beyond what I'm doing to help her along.
I am glad that if one of my children had to be born prematurely that it was my 3rd and not my first. I remember the first weeks with my first child seemed endless. And I didn't know that it would get any better. With my third, I know that kids grow and develop and change. I know that she'll be eating 100% on her own (without a feeding tube) soon. She is currently at 63% whereas a week ago she was at 7%. Once that happens, she gets to move in with us.
I was thinking today of the things that I haven't gotten to do with her yet. I haven't gotten to cuddle with her just for the sake of cuddling. Most of my time holding her is for the sake of feeding her. I haven't taken her out for a walk in the stoller (though Toronto in February really doesn't lend itself to nice long walks). I haven't gotten to introduce her to anyone outside of the family yet. We haven't been to church or the mall. We haven't gone for a car ride. We haven't laid out on a blanket. We haven't gotten to have a regular routine yet...kinda. We have a routine, it's just not at home. I know we will get to do all of these things and more. I look forward to not hearing my oldest son ask when his 'sis' can come home. She'll just be here.
Today I'm just weary and wondering the 'when' part of the equation. Hopefully this week. We'll see.