Infection 3.0

My entire life I have heard of the phenomenon called a "Mother's Intuition". A sixth sense that a mother has with her child that she is able to know when something is wrong or amiss. My mom's intuition was hypersensitive. I don't know how many times she came to our aid because she just had "a feeling" that something was wrong. I was always entranced by her ability to seemingly see the unknown. It also made me wonder, if I was ever able to have children of my own, would I ever experience this sixth sense.

For about a week now, I've been feeling like Dalley's behavior was just a little off. She was seeming more lethargic and unresponsive when we would bug her during her cares. In addition, her heart rate was elevated. An elevated heart rate is always the first indicator she gives us when she doesn't feel well.

I voiced my concerns last week and some blood work was ran 3 days in a row. All of the results came back within normal parameters. They refused to take any additional blood for more tests in the following days because they didn't want to take blood unnecessarily from her. I tried to take the lab results for face value and just hoped that I was wrong.

The week progressed and she did so well that she was even extubated for those 20 hours. I started to think that maybe I was wrong after all!?

After she was re-intubated, she was put back on the conventional ventilator. By Tuesday of this week, she had started to need additional support on the ventilator. Her heart rate had continued to rise but instead of going back down to her comfortable range of 150-160 bpm, it was hanging out in the 180-190 bpm range. I was stressed. I just felt this continuous nag that something was wrong. I kept asking them to check, but I got the same answer from all of the neonatologist and nurse practitioners. Until they saw a drop in her clinical exam, there was no reason to check her blood again for the markers that would indicate she was sick again.

Tuesday night she was unable to remain on the conventional ventilator. After getting an x-ray of her lungs, it indicated that there were a few lobes in her lungs that had become collapsed again and any additional pressure from a conventional ventilator would do more damage. So they brought in the jet (oscillator) ventilator.

I was sitting in my chair as they wheeled in the giant ventilator. I felt so dishearted. It felt like we were moving backwards! We had made such progress and now we were going back to the very first ventilator she had ever been on. I was reassured that moving her back to the jet ventilator would not only help with the ventilation requirements that she was unable to maintain but should also take care of her elevated heart rate. They thought the elevated heart rate was because she was stressed trying to breath.

Respiratory therapists preparing to move her back to the jet ventilator. This was moments before the potential catastrophe happened. 

They started to hook her up to the jet ventilator and when everything was running okay, they shut down the conventional ventilator. Everything seemed to be going okay for a few minutes but then all of the respiratory therapists began to scramble. I heard one call out to the others, "I need some help!" as they started pulling cords and hoses. Alarms were sounding on all of her monitors and I saw that her heart rate had plummeted from the 190's down to 45. Her oxygen saturation also dropped from 90% to 40%.

I tried to calm my racing heart. I stood up and started to pace. I asked, "Is she okay?" but they were too busy "bagging her" to get her to breath that nobody answered. I hate those moments. I feel completely powerless. There is literally nothing that I could do. They got her switched back over to the conventional ventilator and went to work trying to figure out what had gone wrong with the jet ventilator. I finally ran out of the room. Every inch of my body was shaking and I could not tell if it was from the sobs that came uncontrollably or the shock I was probably in.

Within about 30 minutes the problem was found and was switched over to the jet ventilator and had leveled out within an hour or two. Everything......except her heart rate and her lethargy. By this point on Tuesday night, she was almost completely pale and she barely moved or blinked an eye when we were bugging her. It was killing me to look at her. I just felt as though there were something wrong. More than just her needing additional ventilation support.

I left for the night around 2 in the morning. At 8 AM on Wednesday, I had gotten a call from the nurse practitioner that was on the day before. Because her heart rate had remained elevated after the ventilator switch, they had decided to do blood work again. The results came back and showed she had another infection. I cried with frustration when I arrived at the hospital. I was apologized to for being disregarded.

They had already gone to work to do a complete septic work up. They took blood, urine, trachea aspirate and even performed a "lumbar puncture" to see if the infection had made it's way to her cerebral spinal fluid. Because she had probably had something brewing for quite some time, they didn't want to miss finding it.

She has been on antibiotics since Wednesday and she already seems like a different baby. She had another blood transfusion on Wednesday night so she has adequate blood supply. The antibiotics are also working because her labs had been improving dramatically each day.

Today she was even taken back off the jet ventilator and put back on the traditional ventilator.

I felt such frustration that I felt like I wasn't being listened to. One of my favorite nurse practitioners, Mindy, came to talk to me yesterday. She said "there is a positive side to this. Dalley has probably been fighting this infection for quite some time now, but she was able to stave away the signs that she was sick." Meaning... she was so good at fighting the infection herself, that she had everyone convinced she wasn't actually sick. Everyone, except my primary nurses and ..... her mom!

The results are in and it looks like the infection has been isolated to her urinary tract (UTI). She is on a 7 day antibiotic course and will get a PICC line tomorrow to finish out her treatment. She is full of spunk again and let us know that she did not appreciate not getting fed for nearly 2 days while she was fighting this infection. I hate when she gets sad, but I also love it. It's much more painful to see her when she is so sick that she is completely devoid of any fight.

This girl continues to amaze me.

"Smokin' in the boys room." 

"Rock on my fellow warriors. Rock on!" - Dalley

Nobody Fights Alone

She lasted 20 hours without the ventilator before she had to be re-intubated. I wasn't sure if she would even last 1 hour. This girl is as tough as nails. Sometimes I just look at her and how small she is and think to myself, "How! How are you doing this?!". She's realized something that I think a lot of people forget, myself included. This life is amazing... and it's worth fighting for.

She weighed 2 lb and 3 oz at tonights weigh in. She now weighs 1 lb and 1 oz more than she did when she was born. When I look at her she still seems so small that it's hard to imagine she has double her birth weight.

Photo on the left taken a few days post birth. Photo on the right taken a month after birth.

We are making progress. We are moving forward. Even though days like today it may seem like we took a step back having to be intubated again. She is progressing. Now when I look at her I don't have the anxiety and the panic that I had in the first month. I still have anxiety... and I still have moments of panic, but they are becoming less and less.

I know that we have gotten much of our strength through the people around us. We have been flooded with support from so many people. So much support that we don't have the time to return the favor and acts of kindness so great that a "thank you" seems completely inadequate. You have NO IDEA the strength we have gotten from you. Phone calls, texts, gifts cards, meals, visits, money. I could go on and on.

Her first diaper. This diaper was oddly enough too big for her when she was first born. 

These are the kind of people I am so grateful are in my life. They are the people we will surround our little warrior with. The kind of people that bring out the best in others. That are selfless beyond words. Who have their own baby in the hospital fighting for their life and still see a need to bring you a gift card to buoy your spirits. And friends that find out the Diet Coke machine is only $.25 at the Ronald McDonald house and put together a quarter collection to feed your addiction that is keeping you somewhat sane.

This experience is so hard. It's bending us in ways I didn't know was possible. I would not wish this on anyone. Most days I beg the doctors and nurses to put me in a medically induced coma and to wake me up when this is over. Wake me up when she's ready to go home. Nobody complies. .... yet. :)
But we are going to come out of this stronger. We are cultivating relationships and strengthening already existing relationships with those that are surrounding us.

Thank you for your continued love and support. This little girl is teaching me so much already.... and the biggest is that "Nobody fights alone". What an ominous fight it would be if we were.

"I think somebody needs to change my diaper." -Dalley

Our MVP

Senior picture pose

This little girl misses her dad all week long. I know it may be hard to believe, but it's almost like she knows the second that he arrives on Friday night. It's evident in the numbers on her monitors and also in the way she responds to him. This is going to be a daddy-daughter relationship for the books. I cannot wait to watch their relationship blossom. I know it's so hard for Adam to leave us to go back to school. We are so proud of him. 

Yesterday I went to the hospital and the neonatologist had decided that they were not going to extubate Dalley yet. The settings on her ventilator were still showing that she was receiving more support than they wanted in order for her to be ready for the next breathing contraption. But there was still the problem of her ventilation tube being too small. The air leak was getting bigger and it sounded so laborious when she breathed out. The nurses describe it to me as though she were breathing through a straw. Our primary nurse Lisa was on yesterday and plead her case but they didn't feel she was ready yet. They didn't want to extubate her, only to intubate her with a new tube, then to extubate her again when they were going to try her on Nippv (the next contraption). I understood their logic, but it was so hard to listen to the loud rattle every time she would breathe out through the ventilation tube.

Adam and Dalley's creative interpretation of "The Creation"

Today we had another one of our primary nurses's, Jeanette. She too went to bat for little Dalley and they decided that they would extubate her today and give her a shot on the new breathing machine. The expectation was that she would be off the ventilator and on nippv until she got too tired to breath on her own. Most tiny babies like her don't last very long the first time they are extubated from the ventilator. The expectation set for me was that she would most likely be intubated again within a short period of time. We didn't really care because even if she gets re-intubated, she would have a tube that would fit her better.

Today at 11 A.M. they extubated her. I didn't want to watch the procedure. Some scenarios it's just best to keep the histerical mom away from. I waited an hour and a half before I called. I was expecting that when I called I would be informed that she was not able to maintain her oxygen saturations off of the ventilator and that she had been re-intubated. I was wrong.......

When IV's and monitors are repeatedly taped to your head... the result is the "balding" look hairdo. I think she's just trying to mimic her Grandpa Gilbert's style. 

Case in point. 

All of the tubes and tape were removed from her face before the new nippv nasal piece was placed. I got up to the hospital about 2 hours after she had been extubated and when I arrived, she was still going strong! Her oxygen was saturating and her CO2 levels weren't outrageously high. I think everyone was in shock, including myself.

Cool new head gear. 

As the day progressed I just kept watching the clock and counting the hours of how long she had been going strong. There were a few occassions where she would freak out and get really mad and cry. Her voice is so hoarse from having the tube down her throat that I still couldn't hear her actually cry. It just came out as as a faint whisper. In those moments I would just sit with my hands on her and softly sing to her until her heart rate came down and she stopped thrashing around.

I stayed as late as 10 PM and when I left she was still going strong. I just called up to the hospital to see how she was doing and it sounds like she's started to get a little tired and struggle a little more. Her little immature lungs and chest muscles have had quite the workout today and I'm sure she's feeling fatigued. I won't be surprised if in the morning she has been re-intubated, but Adam and I could not be more proud of this little girl. She has surprised even the professionals today with her level of stamina, grit, and fortitude.

Today.... we won.......and Dalley was our MVP.

"Stick 'em up!"

Two Pounds

"And in corner number one.... weighing in at TWO POUNDS.... IS DAAAALLEY GARFIELD!"
(Dalley fist pumps air)

"I laugh in the face of danger." -Dalley

This little fighter had one heck of a week. The entire time Dalley has been intubated, she has been on a ventilator that oscillates. Instead of expanding and contracting like our mature lungs do, the oscillator gives hundreds of tiny breaths within a second. This type of ventilator is very loud and if you were to put your hand on Dalley, you would feel a constant vibration. Well, yesterday morning they decided to take her off the Jet ventilator (oscillator) and put her on just a conventional Drager ventilator that will make her lungs expand and contract like a mature lung. The transition went SO WELL!  It went so well that Dr. Yoder, the Neonatologist saw the settings that she was on last night and said that he wants to try to extubate her on Saturday and go to the next breathing aid. 

If she is able to handle the next transition, that will mean one less tube will be going down her throat. The reality is, the clear breathing tube that she has in right now is too small for her trachea. It fit her trachea when she was first born, but she has outgrown it. When she breaths, you can hear the air leaking around the tube and escaping back out. I think this is stressing her out and making her air hungry.

All afternoon she seemed so agitated. Nothing was calming her down. She just kept crying and crying and her heart rate was incredibly high. Her heart rate normally stays around the 150-160 bpm range, but this afternoon it was 180-200 bpm. When Dalley cries no sound comes out because the intubation tube is going between her vocal cords so it prevents any sound from escaping. When she cries, you can only see that she is crying. It's a silent cry and it's gut wrenching.

Nothing was calming her down. Getting her diaper changed, getting fed and even getting morphine for sedation would work. I was antsy and pacing the floor like I always do when it seems like something terrible is going to happen and I feel completely powerless. Finally, our nurse tried suctioning out her intubation tube and was able to retrieve a glob of mucus that had probably lodged itself up against the edge of the tube. Immediately after that her heart rate lowered a little bit and she was finally able to sleep.

I wish it were Saturday already so we can take out this tube that is too small. If she is unable to breath without being intubated, they will at least be able to intubate her with the next size of tube so it can help her breath better.

Today I held this little peanut for the second time. She was placed against my bare chest and we just sat together for hours. I felt every little movement. Her tiny little feet that would press against me. The feather light pressure of her hands against my skin. The rise of her chest when she would breath.

The first time I held her over a month ago I was scared. I thought it was too soon for her to be held. She was too small and too fragile.... and maybe that was all true. But when the nurse asked me if I wanted to hold her, I selfishly said yes. I wanted to hold my baby while she was alive. I wanted to feel her warmth and feel those tiny movements. At that point, I wasn't sure if she would survive long enough for me to be able to hold her again while she was alive.

For today to happen was nothing short of a miracle. I know that there are more people hoping and praying for us than we probably deserve. We could spend a thousand years saying thank you for the hope and faith that have got us to this point.

We still have such a long way to go. There are still so many hurdles to overcome and things can change from a daydream to a nightmare within a matter of moments. But we couldn't have gotten this far without this much support.

"Thank you for the prayers." - Dalley

Obsessed

"Block with the left... jab with the right."  -Dalley

I am obsessed with this baby. I stare at her all the time.

She has had several good days in a row. .... besides the fact that she is not gaining weight, but has been losing weight. This is mostly because she was given a lot of fluids while she was on her antibiotics, and she is now just starting to pee off all of the excess fluids. One of her favorite past times is peeing through her diaper so the nurses have to change all of the bedding. She thinks it's hilarious. She has also had several FULL diapers. I LOVE when she has a full diaper. I never thought stool could bring such happiness.

She was taken off food when they thought she had a stomach infection. Now that they have ruled out a stomach infection, she is back up to full feeds of 14 mL. They are fortifying the caloric amoun from 22 calories to 24 calories. Hopefully the fortification will help her gain weight but will not cause an excess in gas production and give us another NEC scare.

One of our primary nurses, Jane, getting her nightly weight.

Last night she weighed 850 grams (1 lb 14 ounces). Today she only weighed 810 grams (1 lb 13 oz). Now that she's feeling better, I hope she starts gaining weight. She clearly has her dad's metabolism, instead of her mom's.

I've started to notice a few things with Dalley. Her dark hair is turning blonde and I think I saw some curls. I think she is getting big and mature enough that she is more aware of things that bug her. She is constantly trying to spit out the tubes going down her throat. She gets antsy when she's hungry. She also seems to hate when she has to lay in the same position for too long. She still doesn't like being swaddled. And she still sleeps with her hands all over the place. I think she's going to be a free spirit.

"You're letting the light in..." - Dalley

Yesterday when Jane was changing the bedding on her bed, I got to hold her for a brief moment. I cannot wait until holding her is second nature to me. When I can just pick her up and hold her close to me. That will be a day I will never forget.

It's amazing to me how much power this tiny little girl has over us. 

She has left her footprint permanently on our hearts. 

Enjoying the Moment

In my life, I have developed a terrible habit of being unable to relish life's blissful moments. Even on some of the happiest days of my life, I always have in the back of my mind a cautionary voice telling me that the joy of this moment will not last.... so be prepared for when it ends. I don't like this characteristic of myself.

The day Adam and I got married, my mom was laying in our house dying of cancer and passed away 3 days later. The day we found out we were pregnant with triplets, I was so afraid of the risks that I couldn't enjoy the moment. The day we found out we were pregnant with Dalley, I was overjoyed for a few minutes before realizing the heightened risk I had of developing preeclampsia again. I never really let myself get excited for fear of having to bury another baby. We tried to remain cautiously optimistic but I still have never allowed myself to buy a single baby item for fear that we would have to take stuff back like we did when we lost the triplets. It was too crushing. As much as I hate this characteristic about myself, I feel like it's a form of self preservation. Don't let yourself get to high in excitement because the fall hurts a lot less if it doesn't work out. 

Today was a good day.... and that side of me did not win. It was a good day and I let myself bask in the calm. I'm not naive enough to think we won't have any more bad days... but I let myself enjoy today.

This was Dalley on the day she was born. I remember after I had awoken from the c-section surgery, I asked Adam if she was alive. After he told me that she was, I felt as though I wanted to be happy but I had the same apprehensions. Don't get too happy. Don't get to high. The fall will hurt. 

Every day we would come into the NICU to see her, and I would just stare at her with eyes full of tears and a heart that was so broken and afraid. I was starving for any kind of hope that she was going to be okay. I would ask the nurses constantly for reassurance. I just wanted one person to tell me, "she's going to be fine. You are going to take your baby home." But no one ever did. They never could. They still can't. All they can say to me is, "We are going to do everything we can." 

Here we are 5 weeks later and it is a good day. Today was the first time we have reduced the settings on her Jet ventilator. We have only had to go up on settings to increase the support. Today we went down and she is still able to saturate on her oxygen. Today was also the last day of her antibiotic for the pneumonia. The other blood infection that they thought she had turned out to be a contaminated blood sample. The second sample did not grow anything. And she finally had a full diaper which made her tummy look a lot less scary. 

Normally, I don't think I would have let myself enjoy today in preparation for the next bad day. But I feel like I can begin to taste the hope that I was so thirsty for in the first few weeks. 

She is maturing and filling out. She now weighs 860 grams (1 lb 14 ounces). Only 50+ more grams and she's a 2 pound baby! 

I am going to do my best to let myself try to enjoy these good days as they come, because she deserves that. 

She deserves all of the Faith that we can muster. She gives us Hope. And the Charity, or love we feel for her is something that will drive us forward on the days when it feels completely impossible. 

I guess it's only appropriate that she has 3 big sisters, Faith, Hope and Charity as guardian angels to help her and us along. I'm sure they keep her company more than we know. I know those babies are a powerful force for Dalley.  

Life is so beautifully challenging. We're doing our best to live in the glorious moments when they come. 

Goodnight kisses from Dalley.

Longing for Boring Days

My friends Levi and Lindsay brought me a burrito from Cafe Rio. A few bites in, I had the realization that the burrito was in fact BIGGER than Dalley. It also weighed a lot more too.

Today I feel tired. I feel so exhausted from being stressed, scared and worried for the majority of my days. I long for boring days in the NICU when there's nothing to report besides resting and growing.

Monday morning I got a call from the NICU. It's not usually good when I get a call from the NICU before I've even had a chance to get up there for the day. The NNP (Neonatal Nurse Practitioner) that was looking after Dalley for the day was concerned about another infection that could potentially be presenting in her stomach or intestines. Her abdomen is abnormally distended and when they push on it, it was causing her some pain. These are some first signs of an infection called Necrotizing enterocolitis or NEC for short. I don't know much about NEC, other than it is common in really tiny preemies, that it is an infection in the wall of the intestines, and that I met a mom who had a baby die from the infection.

The words from the NNP saying that they were worried it could lead to that had me racing in my car all the way up to the NICU. Why does the world seem to be driving like they are on a leisure drive through the mountains on a Sunday afternoon, when I am trying to get to the hospital in a hurry?

I enter the NICU and I'm immediately greeting by the Neonatologist to tell me they are very concerned with her belly. They had completely stopped all feedings, put her back on the TPN fluid, and put another large tube down her throat and into her stomach. This tube was hooked up to a device that was sucking all air and fluid out of her stomach. The goal was to put her digestive system completely at rest.

I felt the tears starting to burn my eyes. How many times can I beg and plead for a miracle? How much more can Dalley take? I know she's tough, but none of us are invincible.

When I went to see her they were taking blood samples from her PIC line and from another site. They sent them off to be cultured to make sure the infection hadn't once again entered her blood stream. I looked in at her and saw her gagging on the giant tube that had been put down her throat. Sometimes I feel like such a coward when I have to walk away and bawl during these moments. I cannot watch her suffer. I wish I was stronger. I wish I could sit next to her bedside and tell her it's going to be okay.  But All I could make out to her was a whisper of, "I'm so sorry. This just isn't fair."

Fast forward to today......

They are starting to rule out an "infection" of her gut. But the size of her stomach is still concerning to them so they will continue to watch it vigilantly. The poor little girl just needs to poop. It's amazing to me how victorious a full diaper is to me.

Tonight I was also told that one of the blood cultures that was taken yesterday is growing positive for another infection. It came from the PIC line location again. I hate that the PIC line is necessary for medication delivery. It's a double edged sword. The site that is feeding the body the life saving drug... is getting infected. The other blood culture hasn't grown anything yet so they are "hoping" that it was a contaminated sample. If her blood were truly growing an infection then both cultures would be growing the same thing. Another sample was taken from the PIC location again today and if it tests positive then we will know we have yet another infection on our hands.

I just want her to have a break.

"Kicking these infections butts!" 

One of our primary nurses and one of our favorite nurses, Jane, is on watch tonight. She can seem to make miracles happen for our little Dalley girl. Fingers crossed that tonight is no different.

Good night from our worn out family to yours.