Life in the NICU is busy for him, for his nurses and the team of professionals working to help him sustain his little body. Walking into the unit, it is clear he is the tiniest baby and using the latest and greatest medical equipment designed for his micro features.
He is currently intubated and they have a machine working to help keep his little lungs open. He is actually breathing on his own (a huge feat I think when he didn't have fluid the last many days to help his little lungs form), but the machine (sorry I can't remember the name- probably will become a medical term pro by the end of this), that puffs several hundred tiny bouts of air into his fragile lungs each minute. Yes several hundred puffs each minute. Looking at him we see his chest, almost his entire body vibrate with the air filling his lungs. He will be on this machine for a few weeks, they expect. I am learly to give timelines for the information about when they will do x or do y, even the staff don't talk in specific date timelines. Instead they say, Noah will tell us everything. He tells us what he needs and we respond, we don't tell him.
So I guess, like this pregnancy, everything is in Noah's time.
So I guess, like this pregnancy, everything is in Noah's time.
He is also connected to wires all over his body. Currently they use his umbilical cord as a central line running his main iv fluids to and from there. The average length of time they can keep this line open is between 5 to 7 days, after that they will start a central line in one of the main arteries in his leg or arm. It is hard to describe the actual size, of the wires and tubes running criss cross around his body. Someone asked me if the tubing is about the size of a spaghetti noodle. I would say the wires running in and out of his body are about 1/4 the size of a spaghetti noodle if you would slice it in 1/4ths the long way.
They are monitoring anything and everything you could possibly imagine. He is under a bright light to help with some of the bruising he sustained during the delivery, like other babies who get jaundice. It is the same with him. So under the bright light he is with shades on. He is in an self contained eycolete where the temperatures are comparable to my womb temp. Because his skin is extremely delicate to the touch and too premature to maintain its moisture, they pump humidity into "home." at a rate of 72% humidity. One nurse joked with me this morning, "With his shades on, the light from the lamp and the humidity he's got, its like he's in Hawaii."
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| The nurses say he's getting shy from all the loving and attention they are giving him. "Oh please ladies." |
Yesterday the doctors decided to insert a feeding tube and begin 1 cc's of breast milk every 3 hours. Originally they told us they wouldn't probably start the feedings until day 3 so we were encouraged they thought he was doing okay enough to begin them within the first 24 hours. Again, we are on Noah's time, he must have been hungry. His intestinal track is also premature, so they want to get that good milk on his "guts" to get things going. I've had a minimal amount of colostrum come in so they are supplementing with donor milk, however the nurses are very reassuring saying, "even a drop of your milk is critical as it contains the nutrients specific to him." You should see how careful we are with even the tiniest amount of the special juice, this stuff is priceless. He was given my contribution late yesterday and as of early this am he has been tolerating it really well.
If there is one resounding message we hear over and over from everyone we talk to regarding the NICU experience, it is this. You are on a roller coaster and there will be ups and downs. He will have good days and he's going to have bad days. Just be prepared. Everyone, while honest and so forth coming with information to our onslaught of questions, is similar in one thing, they are not one to sugar coat or over promise. They realize the seriousness of where we are and they would rather under promise and over deliver (my term not theirs). So we are okay with it. We don't speak in those terms either, instead we use phrases like, "For his age, he's doing what we'd like to see him do." or "He's telling us x."
While I'd love for them to optimistically say he'd doing over the top amazingly, I'd rather have an honest, realistic understanding of where things stand. While the information is direct and straightforward, not filled with promises, where they go above and beyond is when they invite us to be a part. We are allowed to visit, sit with, be with Noah anytime day or night with the exception of 7-7:30 a.m. and p.m. This is the changing of the guard times and they want to make sure their team of experts are fully focused and informed of where our little are, so they limit traffic to the unit so everyone is at the top of their game. I think it is a great idea.
So far I've visited Noah every 3 or 4 hours, I want to give him time to rest, as they say keeping the area around his bed quiet and peaceful has been shown to have very good results for preemies. Plus they want me to pump every 2 hours to generate my supply so life is busy between just those two things. When we visit Noah we stand quietly by his side, I pray mostly and whisper loving words to him through hums of his machine. It is clear he doesn't like it when the alarms go off or he hears commotion from other babies around him, often raising his arms almost like he is startled.
This morning at 3 I couldn't sleep so Jarrett and I went to visit him. While we were there, the nurse asked us if we'd like to touch him. To this point we have not been able to have any direct contact with him. When she asked us, at first we were leary, not wanting to give him any germs or hurt his delicate skin. She said he's your baby he would love to feel your touch. And so we got to gently place our finger upon his skin. Tears streaming down my face as I touched my son, the baby who grew in my tummy and my heart, for the first time was a great gift. A moment my heart doubled in size again.
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| Our little hero, all 12.5 inches. |
I look forward to the frequent visits today and infact its time for me to wrap up. Just one more thing I want to say before signing off. While we are thankful for all of your support, I must also recognize the outstanding team of care providers we have been privy to this past week. The outstanding team of nurses who cared for me for a week, treated me like their sister, their daughter are truly remarkable. In the seven days I was here, we created friendships that will last a lifetime. To the doctors who respond to provide insight, care and expertise, you are truly world class. And to the team up in the NICU who are caring for our little Noah as if he is their most coveted blessing, I am so so thankful.
And finally one last story that captures just the true class of God's experts he has providing care. One of my amazing nurses, Kristal and I were talking one night in the middle of the night about why she decided to be a labor and delivery and antepartum nurse. I asked, "How did you know this is what you wanted to do with your life? What patient experience did you have that made you realize this was your calling?" She went on to tell me the story about a women who came in to the OB ER one night when she wans working and said she was 23 weeks pregnant and worried she was going to go into labor. Kristal evaluted her and said she was not having any symptoms of pre-term labor so she asked additional questions. The mom to be explained that she was currently pregnant with her fourth baby but was worried because with her third baby she went into labor and gave birth at 23 weeks. Kristal asked further about what happened and how her baby born so early was. The mom looked at Kristal, and said, "there's my baby, she's 8 now and perfectly health." Kristal said she has never forgotten that patient and that she loves labor and delivery because everything is possible.
It just so happened on Friday night when they feared I was developing an infection and Noah had to come out so quickly, that Kristal happened to be my nurse. While most nurses stay in Antepartum and they just transfer the patient over to L & D, somehow Kristal made it happen that she got to stay with me. Given the fact Jarrett and I had never even thought about labor at this point, we were of course nervous, had questions and were scared. Before they moved me over to the delivery room, they had a neonatologist come and talk to us again. The statistics and facts were very scary, I will not repeat them at all. Kristal sat in the room with us listening and quietly being a ever present force of support. After the doctor left, Jarrett and I were very quiet and Jarrett stepped out to use the bathroom. I did my best to hold back tears while I breathed through the every increasing pain of contractions. I felt hope leaving my body for a tiny bit of time, and without saying anything my weary eyes met hers. She said, "Angie, remember when we were talking that first night we met and you asked me about that patient who I remember? You keep that momma's story in the front of your mind and you believe beyond all beliefs, you will have a successful story too. There is always a reason to have hope."
Kristal stayed by my side through out the entire labor and delivery and she was everything Jarrett and I needed. She was another gift from God.
Last night Kristal was going to be coming back on for the night shift and I was really excited to see are her. It surprised me though when around 3:30 she popped into my room. I said, "hey, what are you doing here, you'd not suppose to be at work until 6." She came to my side, gave me a big hug and said, "I couldn't stop thinking about you at home all day, so I decided to come in early." She continued, "Remember when you asked me about why I do what I do and what is your one patient story?" "Yes I said, thinking she was going to tell me another story she thought of. She said, "I had to come in early because I just had to tell you, last night... you became my patient story."
Until next time,
Angie
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