I didn’t know God until He let my daughter die

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I can’t remember a time when I didn’t know about God. I grew up singing Sunday School songs. I’ve had a Bible on my bookshelf since before I could read. When I was in 2nd grade, at Christian overnight camp, I confessed my sins and asked Jesus to be my savior. I did everything I thought would help me to know God. I followed the step-by-step plan, not knowing it was the unplanned that would save me.

In 2013, my delightfully well planned parenting stopped going my way. After having three perfectly spaced pregnancies with my loving husband and high school sweetheart, I found myself expecting the unexpected. My was pregnant with my fourth, when my third had just turned one. I was bitter that despite my diligence, I had a baby on the way that I hadn’t planned. I spent a week mourning my great plan for the coming year, and slowly accepting the change. And it was right about that week that the pregnancy started to become difficult.

I went from angry that my plans had been changed, to guilty that I had somehow caused these complications by my ill-will towards this new person on the way. Week after week went by with worsening and worsening problems. I was bleeding so much that I spent a solid part of every day fearing I had lost this child, to whom I had now grown attached. First trimester turned to second and the bleeding turned to hemorrhaging. Doctors were at a loss as to what was wrong or what to do. Every test led to more speculation. Every speculation led to more tests. I never did get an answer. But on April 24th, our tiny 1 pound daughter arrived 4 months too early. “She took a breath” I heard a nurse say as she was being delivered. A few minutes later I was holding her when she took her last breath. To me she was the tiny version of a perfectly formed baby. This life that I did not plan. This death that I could not fathom. This pain that I could not describe. Not in my plans.

I sunk to a place I had never been before. A place where my thoughts betrayed me. Where my head confused me. Where my dreams crushed me. I vividly remember, a week after her death, when I woke up from this horrible dream – sobbing and panting and in out-of-control grief! I had dreamed that my daughter had died in my arms! What a wretched nightmare…and the moment where I felt my empty womb and remembered that the nightmare was my reality.

I stayed there in that dark place for longer than most people around me knew. I carried on with living despite the death I felt. But it was God and I who had to come to terms with each other.  It was God that had allowed this tiny life, and God that allowed this crushing death. The God I knew was a God of love, but this felt nothing like love. Was this the God I knew?

At some point I came to accept that this was God’s plan. Yes, that is easier to say than to believe. But I don’t mean it as some type of pithy Christian pat on the shoulder. I mean it in the “God of all creation, has dominion over all things” sort of way. Once I saw and accepted that God allowed for my daughter to die, I could wrap my thinking over the idea that all things at all times are in God’s dominion. Every good, every bad, every blessing and every tragedy were sanctioned by the all-knowing God. Why was that pivotal information for me? Because I finally realized that nothing was in my control. God was in control.

The life I had planned, the family I had dreamed into existence, the future I had pictured…I wasn’t the one who held control. Not now, and not ever. I could finally let go and let God show me how my life should be. All this fighting for my own plan had prevented me from being a part of HIS plan. This God I was getting to know had a plan for me, and a plan for beauty from these ashes, if only I would let Him lead.

With new knowledge that I had never given God my life, I re-committed myself to Him. Or really, I committed to Him for the first time. See when I had thought I knew Him before, I was doing what I thought were the right steps. But I never allowed God to actually lead my life.

Now everything changed. God changed me. He opened my eyes to the goodness of His will. I saw sin and brokenness in a whole new light. I strived to do as He led, not as I planned. I saw beliefs that I had held that were against His Word. I saw poverty that I had the power to help. I saw hurting people that I could love. I saw orphans that I could mother. I saw love that I could share. I still wish He could have changed my life by using a less painful method. I still wonder what my life would have looked like if my sweet Josephine had lived. But in my heart I know that the sacred marriage I treasure would not be as strong. The next four children that joined our family would not have been. The daily life of loving and enjoying my family around me would be pushed to a breaking point while I pursued my personal agenda. The people we have reached might have gone unreached. The community that held us together may not have formed. Beauty in the ashes.  The pregnancy that I never desired to have became my saving grace.

My salvation came from the unplanned.

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Homeward Bound

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It is almost surreal. So part of me longed for the end of the NICU stays, and the other part of me believed it would never happen. So even though I worked tirelessly to get ready for Miriam’s homecoming, it still seemed to come out of no where.

The week she turned 100 days old, the week of her due date, was also the week she came home for the first time ever. 104 days old. The size of a newborn, but 3.5 months old. 6 lbs 9 oz at discharge. Wearing preemie size diapers. Tiny and fragile and precious.

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It was April 1st, but this was not an April fools joke, this was real. My tiny miracle had fought and grown and was now released. It was likely one of the most nerve wracking drives home as she is attached to a great many things still. She is on a ventilator the size of a large lunch box, that (when stationary) has a water tank and humidifier on it. The vent is connected to her trachea through that long white tube in the picture. The other side of the vent is attached to an oxygen source – a wall port at the hospital, a “portable” tank when we drive, and a loud and hot oxygen concentrator at our house. She is also continuously fed through a g-tube in her tummy, so therefore attached to a feeding pump with a bag for the milk. On her foot is a pulse ox probe which attaches her to a pulse ox and heart rate monitor, that seems to beep 100 times a day, usually not related to her health. We also must have a suction machine to suction her trach approximately every three hours all through the day as needed. And then there is a nebulizer machine to administer 3 of her 6 daily meds via the nebulizer. She also takes three “oral” meds through her g-tube. It takes about 90 minutes twice a day to give her all her meds.

The drive home involved many of those machines, plus too wide of travel tubing for her size so a very stressful drive where we worked hard to keep her oxygen levels regulated. But we made it, got her inside through the swarm of adoring sisters and started our new story. Our life as a special needs family.

Her nursery is our converted guest room. She is right next to our room but that is not close enough. She must be watched all the time. Maintaining the machines, doing the routine trach care, prevented or attending to emergent situations, administering meds all involved constant care. But mostly her tenative airways and her lack of vocalization mean she can’t be out of eye sight. She cannot cry or really make much of any noise. So is she is in pain, or choking, or uncomfortable, the only way to know is by looking at her. So for the first 48 hours of her being home, Jeff or I were by her side, in the hot and loud nursery every minute.

After that first 48 hours our first night shift nurse arrived.

What a Day It Will Be

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A month passed where each day and each moment my life was being defined and yet I felt like I was half asleep through it all. Twice a day trips to the NICU, a 19 mile drive that could sometimes take 30 minutes and sometimes 90 minutes. I barely slept and I was sustained on the physical help and prayers of all those around me. I can’t tell you how many times I had to flat out ask for help, an acquired skill that the Lord seems to believe I need practice in. Neighbors, friends, family, strangers…meals, child care, yard work, errands. How we kept milk in the fridge is still a mystery to me.

In early March I started to feel a lot of anxiety. We were now in the month of her due date and it felt like we were ages from discharge. Miriam was constantly battling infections and pneumonia to the point were I stopped counting rounds of antibiotics. At one point the Infections Disease team became part of my regular afternoon conversations. I knew the NICU fellows on a first name basis and I could tell you the nurses schedules, and which ones I would hope would have Miriam and on what day.

Another surgery was in the mix. Miriam was unable to eat anything by mouth yet and there was little hope of her weaning down enough on the vent settings to be able to do so in the next few months. “With a g-tube, she will be able to go home sooner.” they said, and we agreed. So on March 16th my itty bitty went in for her 3rd surgery to have a hole cut into her stomach and a feeding tube put in place. This would replace the naso-gastric tube that she was currently using it eat. This would be a long term, but not permanent feeding option. The surgery did not go as well as planned, we were hoping for minimally invasive surgery, little scaring and quick healing. But her insides were too swollen from the continuous pressure and so it quickly turned into open surgery. Another scar. And days of recovery.

But we had spoke of home. Though I always hoped and prayed she would be home near her due date (well before actually I was praying for the weekend before, which was Easter) it seemed so out of reach for so long. Now here we were. On surgery day she was 38 weeks gestation. Five pounds and change. Two weeks from her due date and much to do.

Her job was to heal and grow. Our job was to get everything in place. We had to chose a Durable Medical Equipment provider (DME) and a home nursing agency. We had to apply for coverage through our insurance (which the hospital mess up, but that was resolved). We had to meet with all the out patient providers she would be seeing. Pediatric surgeons, Ophthalmologist, ENTs, Gastroenterologist, physical therapists, speech and motor therapist, high risk specialist, etc. We had to train and practice performing all her care. Trach changes, trach cleaning, trach suctioning, g-tube cleaning, feeding pump training, CPR emergency training, vent training, oxygen usage guidelines…all a part of our new lives. Most fun of course was getting to create and decorate the new nursery. We converted the guest room to the lady bug nursery to prepare for the day when my baby will get to come home. Of what a day that will be!

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Lady bug room before the medical company came in

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And after…

Facing the Day

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So little Miriam is slowly gaining weight, fighting off a post-operative infection and overall things are looking up a bit. Each Wednesday after the surgery is trach change day. Unless she is sick or extra dirty, the trach tube needs to be changed about once a week. The first change and most risky was done by the ENT team to make sure that nothing went horribly wrong while the tube supporting her only airway was removed. Of course, it went fine. But the second week post-op it was my turn to change the trach, with no ENT team to back me up (though the nurse and respiratory therapist who are amazing at their jobs were on either side of me the whole time!).

Honestly, I am not sure how I got through it. It might be like one of those moments in life that you don’t think about until after it is over. But while you are in it, you just do what you have to do and press on. You know like car accidents…or cleaning up horrific bathroom messes that your kids made. So I got my game face on, listen to the instructions, prepped the materials, and just did it. Yup, I pulled the breathing tube out of my 4 pound daughter’s neck, observed the nostril-sized hole leading down her airway into her lungs and then inserted a new tube with the stylus, removed the stylus and then the vent tubes were hooked back up. All in about 20 seconds. And as the nurse and RT per praising my efforts…I nearly passed out. Because it was only then that I thought about what I just did, and what I will continue to have to do, and what the implications are if I mess that up. It is overwhelming.

Miriam is 36 weeks gestation, still a whole month away from when she was supposed to be born. I should be 9 months pregnant now, but instead I am feeding plastic tubes down a tiny hole in her throat. She cannot cough. She cannot smell. She cannot cry or yell or squeal. She cannot giggle. She cannot make any noise. When I hold her on my chest I cannot feel her sweet baby breath on my skin. Plastic tubes cross over her chest and block her arms from moving where she wants them to. Machines beep and blare every time she stretches, yawns or poops because the pressure of her body arching or compressing prevents the air in tubes from pressing through. When mucus builds up in her lungs (approximately every hour), we have to feed a suction catheter down the trach tube and suction the mucus out for her so she can breath. This is a different life than I had pictured.

The NICU is right next the to high risk clinic, the antepartum rooms, the labor and delivery area etc. On this particular afternoon while I am slowly absorbing the reality that we are going through, I head to the elevator to leave and a very pregnant woman gets on the elevator as well. She smiles and says hello. I smile and bite my lip. “How far along are you?” I ask.

“36 weeks!” She smiles. “So anxious to be done.” Then she looks me up and down and her eyes land on my large bag filled with baby-type items. Carefully she chooses her words (keep in mind we were on the baby floor) “Is that a diaper bag? Do you have a baby?”

“Uh, well yes, I guess, sort of…” I gather myself a bit. “I have a little girl, she is, or well I would be 36 weeks now, but she was born 11 weeks ago. She’s in the NICU now, and for awhile longer.” I think I stammered on a bit longer, but thankfully the elevator stopped and we parted ways.

Honestly, my head was even yet not in the present. This was all too painfully familiar. When I had lost Josephine nearly 3 years ago, I had continued bleeding for months after delivery. I had finally gotten fed up and worn out, and a D&C was scheduled (dilation and currettage, a surgical procedure where the doctor goes in to the uterus through the cervix and removes any remaining tissue or fluids that could be causing the irritation).  When I went in for my pre-operative appointment, I was, or I guess I would have been 36 weeks pregnant. I had to check in at the same desk as all the prenatal women. Every woman who checked in just before and after me was exactly 36 weeks along. I wept so loudly in the waiting room at the sight of the nine month bellies, that a confused nurse eventually led me back to her office to await the doctor there. I never calmed down enough to speak correctly to tell her why I was sobbing.

I walked out of the elevator, and nearly ran to the car. Now I had come face to face with my past reality, my current reality and my “what could have been reality” and I was ready to crawl back into bed and pretend there was no reality.2016-03-03 23.03.58

Lacto-engineering

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(Disclaimer: this post is about pumping, breast feeding, nursing, etc. you don’t have to read it if that makes you uncomfortable. Also, it is about a technique for gathering breast milk that we came up with under no medical guidance whatsoever, so I cannot recommend it in anyway. It was however, based on good logical and nutritional information, and it just plain makes sense.)

So just before the tracheostomy, the doctors wanted to add something to Miriam’s diet. It was Similac Human Milk Fortifier added to her breast milk. The minute the doctors said they were going to start adding it, I felt unsure. I asked to see the package (made with cow’s milk and soy….my hesitation continued). I spoke with the doctors. They explained that preemies need more nutrition than breast milk has, that the nutrition from the placenta is much higher and it is what she would have been getting still. So I Googled the HMF and asked several other parents. I found very little bad information. So we agreed to put her on it. But 10 days later it was becoming obvious that she was not thriving on it. She was painfully constipated, her stomach was bloated to the point of having trouble breathing and she had developed a bright red diaper rash. Since she had tested positive for Pseudomonas, the doctors stopped her feeds for fear an infection had spread to her gut.

It was then that one of the nurses hypothesized that perhaps the added protein she had been getting was what was causing problems. Jeff and I discussed it, but she had been given protein supplements for weeks and it had never been a problem. Which is when we realized that only one thing had changed recently in her diet, the HMF. So when the doctors were ready to start her feeds again we asked them to do straight breast milk without any fortification or additives. Sure enough, it no time she was in great shape! She was now having dirty diapers 3 or more times a day, her tummy went down 3-4 bloated centimeters, and her diaper rash completely cleared up. Fantastic!

Well, except one thing. Her weight went down quite a bit (of course it did, she pooped and deflated!). But the doctors need her to be gaining weight and they did not believe that regular breast milk could do that. So, what to do? Well pray, God make this milk be what she needs! Then I got an idea. When breast milk is chilled the fat rises to the top. What if we could collect several pumpings worth of milk in a jar, refrigerate it, and wait for it to chill. Once the fat rises to the top, skim it off and put it in the bottle. So the cream of the milk is what Miriam is given – higher calories, higher fat. “La creme de la creme” is what I called it! And guess what?! It worked! Well at least mostly. See she gained weight, though much slower then the NICU is used to seeing since nearly every baby is fortified. So the doctors calmed about that, but they were still concerned about the extra nutrition she needed. So we agreed that she could be given extra protein, calcium and phosphorus as long as they kept her off the HMF or formula.

Since then she has gained weight, and her health has improved tremendously. Praise God!

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Turns out, after we started doing all this, I continued researching and found other information out there on lacto-engineering, as it is called, here is one source I liked:

http://arubanbreastfeedingmamas.blogspot.com/2010/04/lactoengineering.html

 

Ups and Downs Again

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In the immediate days after the tracheostomy surgery it was almost too good to be true. So I suppose it was. Late on Wednesday night and on into Thursday and Friday things just kept getting better and better. Miriam was beautiful and full of life. Her smile was full from side to side, and uninterrupted by the breathing tube it once had. The doctors were so impressed that they decreased her vent setting dramatically. I was starting to dream of days at home cuddling with my baby. How wonderful it would be to have her home…

But by Saturday the dreams were fading. She had to back up on her vent settings, and then up again. Soon she was on higher settings then before the surgery. On Sunday after church I went up the the hospital to visit her. I signed in at the front desk but I was told I couldn’t go back – the doctors wanted to come and talk to me first. Out came the attending NICU doctor and the fellow. They shut off the waiting room TV and got wide eyed. I nearly passed out. Turns out she was getting worse and fast. They had run several tests on her, her heart rate was through the roof, the blood sugar had spiked and her oxygen requirements were higher than they had ever been. The doctors suspected she had gone septic again or worse. The high blood sugar very much alarmed them. They were not sure what was wrong but she was very very sick.

After they let me go back to her, I was surprised to see her awake and alert. From the way they had spoke it was as it she was fading fast. Her nurse watched her and stated that she couldn’t believe how much she had come around since I walked in. She made eye contact with me, even smiled a bit. I talked to her and held her hand while she sucked on a pacifier. They rechecked her blood sugar and it had gone down nearly 200 points since I got here. The doctors then started to hypothesize about what might be going on. It appeared as though the trach tube was too long and was causing pain and irritation. That would account for the increase in oxygen and heart rate. The stress of struggling to breath would have increased the blood sugar, which would have calmed down after she saw me. It surely calmed me down, and trust me when I say I had a hard time leaving her that day.

Nine weeks in the NICU and it only gets harder. The days fly by and creep all at the same time. Over and over again we get up after far too little sleep and pull through the motions of each day – it is almost hard to believe that this is our life. I look back and feel overwhelmed by what we have gone through. All the pain and fear and struggle. A now she is so very sick. Will this ever get better?

By Wednesday she is worse  and we find out that she has pneumonia. Two months old and not even four pounds and she is fighting pneumonia. But there is more. She stomach is extremely bloated, like a balloon. An x-ray is done to learn more, but we learn little, only that the bloating is preventing her lungs from fully expanding. And she is painfully constipated, and has a bright red diaper rash. Her feeds are stopped because we just don’t know what is happening. So many back steps. So discouraging.

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My sick baby with an IV In her head.

 

Breathing Easy (er)

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Now that we had decided to go ahead with the surgery it was like the days slowed down and got harder. We searched for a time to do the surgery sooner but there just wasn’t a safe option. Miriam seemed like she was deteriorating quicker than before. She had to be pinned down with positioners and blankets in order to keep her from removing the endotracheal tube again. The doctors were fearful that a time would come where her throat would be too swollen to re-intubate. We were not anxious to find out if they were right. Her oxygen requirements kept creeping up and up and it seemed like nothing could settle her. Finally blood work and cultures were done and it was found that she had an infection, again. This time in her lungs. More IV’s, more antibiotics. I was worried this would delay surgery, but thankfully it did not.

On the Tuesday night before her surgery we went up to visit her late. We were able to give her a bath (well rub her down with wet washclothes) and I was able to hold her for a few minutes. She was so agitated that she couldn’t handle being held for very long. Holding her arms and head in place made her very upset and her heart rate would soar and her breathing with stop. So a few minutes to snuggle and kiss her and pray over her for the big day tomorrow. I think slept about one hour that night. Between pumping every three hours and worrying, I was a mess.

We had a dear friend offer to come stay the night with the girls so we could be at the hospital late Tuesday night and early Wednesday morning. However, in the middle of the night she ended up terribly sick. Wanting to keep our kids from getting sick, we scrambled at 5:30am to find another friend to come by. Thankfully, we know a lot of homeschoolers who are often willing and able to drop everything for a friend! Now with childcare covered, we were off to the hospital.

We get there and scrub in and meet with the ENT team, then the anesthesiologist team, then the respiratory team. We talk to the nurses that cared for her last night, update the new day nurse and exchange concerns with the neonatologist. Oh how my life has changed. Finally a team of 9 people escort her out of the NICU and through the hallways, down the elevator, to the third floor and down the hall to the operating room. And my head starts spinning. Truly, the sound of construction in a nearby wing of the hospital makes me wonder if the floor really was moving, or if it was me. It was me. I pull myself together as I watch other mothers sob after parting with their child at the OR door. We need to keep busy.

An hour or more goes by and we get constant updates from the NICU fellow who is with her in surgery. All is well, she says. Even sends a picture. I see my sweet sleeping girl. Her face is swollen and scrubbed red to remove the tape that once held her ET tube to her face. But it is bare. Clean clear face with no obstructions. It is the first time I have seen her that way. Then just below I see the enormous tube erupting from her throat. It is real. At 3 pounds and 60 days old she now has a hole in her throat. To breathe. To save her life.

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After her big surgery

Troubled Decisions

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So much going back and forth on different breathing machines and I felt in my heart that we were going to be headed down a difficult road. It seemed as though being intubated was the only way for her to breath. However, we had learned that the tube in her throat was causing damage. And a tube down her throat was no way to live. There was one night in particular that I had to see first hand how terrible it is.

One evening I was up visiting her by myself, and suddenly her oxygen saturation went down. Immediately after, her heart rate dropped. Her nurse began diligently working on her to figure out the problem. She used suction to try to clear her airways and when that didn’t work a facemask and bag was used to try to revive her. The doctors and respiratory therapists were called in and she was given breathing treatment in hopes to clear out her lungs. Nothing was working. Minute after terrifying minute went by with her heart rate diminishing. Finally a large clot of mucous and blood was pulled out of her breathing tube. And she was ok again. But I was not. That was not the only time we were scared for her life. There were at least three other events where she attempted to pull out her breathing tube or it was bumped by her movements and she was extubated and the medical staff was left scrambling to secure an airway for her.

We were called into a meeting with the neonatalogists after the entire department had met to discuss her complicated case. Consensus of the department was that our tiny baby needed a tracheostomy.  This is a surgical procedure where a slit is cut into her trachea and a tube is inserted. The tube then becomes her airway and she no longer breathes out of her nose or mouth. This would bypass the inflammation in her trachea and allow it to heal. Any breathing support she needed would then be attached to the tracheostomy tube which she would be expected to need for a year or more. They presented this option to us and asked how we wanted to proceed. The alternate plan was to wait and hope and pray that either her trachea would heal (even with the tube in it that was causing the problems) or if we waited long enough then her lungs might become strong enough to compensate for the occlusion. So we could slit open her throat and proceed with a medically fragile child or wait and hope she heals. We asked for the weekend to decide.

I was torn. Jeff and I had different opinions and when one of us would convince the other, then we would flip flop back again. We researched, we asked questioned, we joined online support groups, we discussed it at length and we prayed and prayed. With still no set decision, we headed into the hospital on Monday morning to meet with the ENT surgeon to ask more questions and discuss possible other options. It was as we were scrubbing in that things became abundantly clear.

Just moments before we arrived,  another “event” had occurred. The breathing tube had become internally dislodged and required another extubation (her 7th I believe) and the doctors had to scramble to re-intubate and revive her. The nurse that was on her care and the doctor who recovered her appeared visibly shaken. And so were we. Our decision was made. She would receive the tracheostomy.

It takes exactly nine people to safely transport Miriam, secure her breathing, and perform the surgery. So the scheduling became a problem. Rearranging that many peoples schedules took some time, so the date was set for a week away. As that week dragged on we became more and more convinced. Miriam’s breathing tube was collecting bacteria and she contracted another infection. Her oxygen requirements went up dramatically and she was visibly uncomfortable. She had to be physically restrained to prevent her from pulling out her breathing tube. Not just her hands but her head as well since she would turn her head violently to try to remove it. We were heart broken as we watched her struggle and counted down the days until the risky surgery that would surely created its own series of complications and a year or more of medical fragility.

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Moving Backwards

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Antibiotics and reintubated. Slowly and surely Miriam got better from the infection and sepsis. But not without its consequences. Being intubated involved an endotracheal tube (ET tube) down her throat and a bar taped to her face. Through out her short life, that tube has been in and out of her throat multiple times and it is starting to cause problems.

First of all, the doctors do not like it. Years ago nearly all premature babies were intubated and the tubes were left in for a long time. However, studies and practice have shown that being intubated causes many problems in both the throat and the lungs. So more non-invasive breathing devices such as CPAP (Continuous Positive Air Pressure) and NIPPV (Non-Invasive Positive Pressure Ventilator) and several others have been the primary choice of many doctors for babies who only need moderate breathing intervention. It is usually healthier and safer to use a breathing mask or canula with these machines than to use the conventional ventilator with intubation. So with that said, the doctors aggressively try to wean all babies off the vent and on to another machine so as to better protect their airways. This happened to Miriam a number of times. She was appearing to do well enough on the vent that they extubated her and put her on a different device. One such stretch last many days…maybe even a week….it is all a bit blurry now. But then she got the infection and all of her strength was needed to fight it and she was not able to breath well anymore. So she was reintubed. It felt like a huge step backwards.

Second, Miriam does not like to be intubated. A tube down her throat is uncomfortable and even her premature instincts knew that it wasn’t supposed to be there and soon she taught her hands to grab it and pull it out. This would cause her to stop breathing, which would make her heart rate crash and an urgent situation would ensue where doctors and nurses would scramble to get the tube back in while she ‘decompensated’. After they realized that she was smart enough and strong enough to self-extubate they started to pin her hands down using positioners and blankets. This usually didn’t work as she found ways to break free. But eventually the nurses were able to out-smart her. Until she realized that she could gag the tube out of place. When it was really irritating her she would gag over and over and turn her head sideways into the blankets or positioners holding her hands down and dislodge the tube that way. Again resulting in an emergent situation. Finally the doctors researched a different interface for the breathing tube where it was taped to her face using a cross bar system and had a locking apparatus to keep it from moving around so much. This also worked for a short time until she started licking the adhesive off her face and loosening the cross-bars, therefore moving the tube again and causing yet another emergency situation.

Third, with the doctors and Miriam herself taking the tube out and then back in again, her throat was suffering the consequences. Being continually scraped and irritated by the tube going in and out and also just the presence of the tube sitting in the throat she began to develop subglottic stenosis, or a constricting of her airways below her vocal cords. After multiple attempts to extubate intentionally and having her fail each time with each different breathing device – she bought herself a trip to the operating room with an ENT (ear nose and throat) doctor. Upon evaluating her throat, they found that she has granulation tissue growing just under her vocal cords that was nearly completely occluding her airway. Granulation tissue is reactive, meaning if they try to laser it or cut it away they may end up irritating it and causing it to grow bigger and angier. Also it is so very near the vocal cords that operating on it runs the risk of harming her vocal cords. So there is nothing we can do. The doctors suggested we wait for her lungs to grow bigger and stronger so she could compensate for the occlusion and the time would also allow the throat to heal.

But there were problems with this plan. First the granulation tissue was nearly completely occluding the airway meaning her lungs would have to be very strong to push the airway open and breath through it. Anything that weakened her strength would therefore make her unable to breath even once the lungs are strong. Also the process of being on a vent was making her lungs worse…not better. Ventilators caused her to breath in an artificial way, making her lungs have more mucous and secretions than normal and not allowing them to fully expand unless forced. So her lungs were not getting better they were getting worse (quickly as it turned out). Also, the chance that her throat would heal from the irritations while the thing that irritated it in the first place was still right there irritating it didn’t make any sense to me. This was not a good plan.

Then came the care conference. On Friday February 5th we met with the attending neonatalogist, the NICU fellow and the head nurse. They reviewed her case with us and explained the very difficult situation. She was getting worse and the way they saw it we had two options. First was to wait and see if she got better as previously stated. Second was to have a tracheostomy. A tracheostomy is a long term hole placed in the throat with a tube to breath through. It would be in place for at least a year maybe longer. It involves a complex surgery with general anesthesia and a whole list of risks as it is an exposed surgical airway. As the doctor described the seriousness of the situation and the risks and difficult lifestyle that a trach would create, he admitted that his opinion was to wait. He felt like a trach was a big serious step to be taking so soon when she is so little and he believed her lungs would eventually grow strong enough. He then stated that the entire department was reviewing her case that morning and the general consensus from all of them was to go forward with the trach to secure an airway and make sure no more scary situations happened. We asked for some time to think and pray it over and to meet with the pediatric ENT to talk it through and ask more questions. The meeting was scheduled for Monday.

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My tiny princess on her 1 month birthday!

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Using a tiny pacifier even while intubated