How Husbands Can be Health Advocates

It’s humbling that our story continues to be shared. I hope it’s shared for years & years to come. I don’t think we traveled the thorny path we did to just keep quiet about it. It’s not about me, or Andy, or even Nicholas at the end of the day. It’s about grace & power & what happens when love is abundant, even in dark & scary places.

Hugs to Ginny Bowen Olson for helping others see how important our PEOPLE are during pregnancy. She credits my husband for my saving my life in her latest post. And she is right. He did. He is nothing short of my hero.

http://www.mothersrest.com/prego-health-advocate/

visiting the NICU

Over the Christmas holiday we visited the NICU at Golisano Children’s hospital – where Nicholas was born & spent his 1st days.

When we left the hospital in 2014 they had begun construction on a new NICU. The new NICU wing of the hospital will be ready next Spring. There will be private rooms for families where mamas & dadas can sleep with their babies. There will be privacy. Andy (somewhat) joked that he was glad the wing wasn’t ready when we were there because he knows he wouldn’t have been able to pull me away. He’s (probably) right. Still, I am thrilled that this wing will be ready for families. Tickled. What a beautiful thing to have privacy with your early arrival. The next time we visit it will be ready. And, they are building a library in part to the donations received through our LoveNotes program. I couldn’t be happier that more families will have access to books during their stay.

We spent the majority of our visit with our dear nurses at the NICU. I couldn’t imagine life without them now. They are like long lost sisters & aunts.

As promised we delivered care package goodies for NICU families – over 150 blankets, 30 preemie hats, and over 60 books.

Thank y’all for your love, support, & donations. We couldn’t do this without so many of you – it really does take a village.

 

 

On Going Home

69 days. 69 days and just like that, we were done. On Friday December 12th, at 7 PM Nicholas was discharged from Golisano Children’s Hopsital. To be honest, part of me wanted a bit more pomp & circumstance than what came with a discharge from the NICU. After all this time in the NICU, to just hear “Okay, bye.” was a bit underwhelming. Don’t get me wrong. I didn’t expect a red carpet rolled out and the nursing staff to be along the carpet throwing flowers at his feet and cheering us as we left but I did hope for a bit more time to say goodbye. A bit more time to process where we had been, what we had been through, and where we were going now.

Andy & I had looked forward to and counted down the minutes to this day – the day we could take Nicholas home. But now that it was here part of me wasn’t ready. I wasn’t ready to say goodbye to the nurses who had become friends. I felt lost knowing I didn’t have to go scrub in for 3 minutes with surgical grade soap each time I wanted to see or hold Nicholas. I wasn’t sure what I was going to do the next morning when I didn’t have to call into the NICU to see how his night had been. I wondered how I would spent the 2 hours I had back in my day now that we didn’t have to drive to and from the NICU.

The last 2 weeks of this journey were the hardest 2 weeks of this entire ordeal. We were so close to coming home we could feel it. Each day that went by and we didn’t come home was heartbreaking. I threw my fair share of temper tantrums in the hospital parking lot with Andy by my side during these 2 weeks. Through tear-streaked cheeks I would say to Andy, “Why Us. What on Earth did we do to deserve this. This is not fair.”. Andy, not a man to wear his heart on his sleeve, would calmly reply “It isn’t supposed to be fair. We were just meant to be stronger people. And we will be.”. True-er words have never been spoken.

Folks told us from the beginning that this would be a journey. And what a journey this has been. I do know, and am thankful, that our journey wasn’t longer and bumpier. It could have been. In my time in the NICU with Nicholas I have seen things I cannot un-see. There are families that aren’t as lucky as we are. It is heartbreaking yet beautiful all at the same time. Some situations were dismal yet love was abundant – proof positive that there can be true love in the chaos.

Some days I have managed the load of this experience better than others. I have laughed at things that aren’t really funny just to feel the release of endorphins. I have lost sleep. I have had little or no appetite. I have cried. And I have sobbed. I have bit my tongue when all I wanted to unleash were a long string obscenities (sometimes I didn’t bite my tongue long enough – I should probably apologize to a few nurses). I have fought the overwhelming urge to scream at the top of my lungs – to just stand up in the chaos of it all and just scream for it to stop – just for a minute – so I could catch my breath.

But, most of all I have prayed. I have prayed until I ran out of words. Whether they be words of thanksgiving, thoughts for others, or asking “Why Us?”, I have prayed.  When I ran out of words, I sat in silent prayer – exhausted from the day and numb from the experience – and rested in the arms of Jesus.

But, here it was – the day we had waited, cried, and prayed for. I was anxious. Anxious to begin our lives with Nicholas outside of the confines of the Hospital. We had spoken of all the things we would do with Nicholas once he came home and now that the day was here it was time to start checking off the bucket list.

As we packed Nicholas’ things up and prepared to leave it was bittersweet to say the least. As I sit here and put these thoughts down, it still is. I will miss the people that saw us through such hell but I will not miss the stress of the days spent by his bedside watching and wondering what tomorrow will bring.

As we left the hospital doors, there was a rush of release for all 3 of us. It was as if we had all been holding our breaths for 69 days and now that we were out, we could breathe again. As we drove to St James City we felt like the family I had longed for since we found out we were pregnant. How we got to that car ride wasn’t what I had planned but, if this journey has taught me nothing else it has taught me that life is a gift that can’t be planned. It can only be embraced – which is exactly what we plan to do with Nicholas for the rest of his life.

I will continue to share our story here as Nicholas’ journey as a successful preemie baby isn’t over – it is just beginning. Join us for this adventure.

Week 10 – More On The Art of Eating & Final Tests

We spent Sunday continuing to feed and gain Nicholas’ trust back at each mealtime. His pacing was getting better but did need support from us occasionally. Since his feeding tube was put back into place – we were back at square 1 on feedings- he had to do 8 bottles in a row again before the feeding tube could be removed. This was honestly frustrating. It wasn’t as if Nicholas hadn’t proven he could eat. He had. He was just now apprehensive to suck down whatever you put in front of him after tasting the vitamins.

When we weren’t feeding Nicholas we were talking with doctors about what our week may or may not look like here. Andy was set to get on an airplane to head back to NC for a few days to take care of some business and we weren’t sure if he should go or not. Andy wanted to be there when Nicholas was discharged and, if that was going to be before Friday, we had to decide whether or not he should fly home. In a conversation I had with both Dr. Sultan and Dr. Singh I asked the question, “If this was your child, would you go?”. They couldn’t answer the question with certainty. It all depended on how quickly Nicholas could pick back up on eating. Drats. It wasn’t the answer we wanted but, it did help us to decide that Andy should go home – if things progressed quicker than anticipated he could hop on an earlier flight back down here.

On Monday morning, after a night of Nicholas not eating for the nurse, Andy and I arrived at the hospital extra early. We wanted to be there when the doctor rounded to discuss what had gone on over the weekend and see where we stood. Dr. Sultan was our doctor this week – I enjoy Dr. Sultan for his common sense, no fluff, present moment approach to neonatal medicine. He isn’t interested in discussing “what ifs” with parents – his response is always “We’ll discuss that if and when we get there.” (I know this because I have asked my fair share of “what if” questions and he always smiles and says “When we get there, we’ll talk about it.”. He reminds me to be present and only focus on 1 thing at a time in Nicholas’ care – a hard but ideal way to deal with Nicholas in this situation – be present and patient.). When we met with Dr. Sultan our nurse Tarianne was present as was the discharge team.

In our talk, Dr. Sultan let us know that Nicholas was going to be sent home on an at-home apnea monitor. Not because he has had apnea in the NICU but because he does have some breathing issues while eating and he felt safest placing him on the machine while we traveled home to NC. Nicholas would be spending many hours in a car seat and he wanted to make sure Nicholas had no issues with breathing that we weren’t aware of so the monitor made sense to him. It wasn’t ideal for Andy & me but, hey, if we got to go home, we will take it. (More on the monitor later).

Since we were going home on the monitor, and had no brain, sight, hearing, or motor skill issues, all we needed to do to go home was (in the words of Dr. Sultan) “Get Nicholas to eat. Let him know what the deal is, get him to eat, and you can go.”. Easy Andy & I thought. (And, really, it was.)

Also, in our meeting with Dr. Sultan on Monday morning, one of the members of the discharge team offered me the opportunity to “reverse nest” at the hospital. Nesting, in the neonatal world, is when they allow the parent(s) to move back into the hospital and stay with their baby in the room for a few nights to acclimate to caring for their child, especially if they are going home on support of any kind (ie oxygen or monitors). Reverse nesting in our case meant that I could move into the hospital and stay in a suite down the hall from Nicholas and go down throughout the day and night to feed and care for him. Dr. Sultan felt it might help him to trust eating quicker and would help expedite our discharge. To that I said “Sign me up. When do I start?”. In 2 hours, they had a suite available for me and by the night I had gone home, gotten some things, and had moved in.

We did decide that Andy should fly home to NC and we would play the week by ear. If he needed to, he could always get on an earlier flight. I spent the next few days working with Nicholas to feed him – day and night. Folks kept asking if I was exhausted. Honestly, I wasn’t. For me, there is something simply wonderful about spending time feeding Nicholas in the middle of the night. 2 AM feedings are some of my favorite times with him. The universe has come to a standstill at 2AM and we get to spend quality time together – just us. Nothing and no one to bother us. With 12 hours of me moving into the nesting suite and being the ONLY person who fed Nicholas he was back in business eating everything we put in front of him.

He & I even figured out a way to eat the vitamins everyday without issues. Hallelujah. The doctors were firm saying “He needs the vitamins. Make him eat them.” I don’t know about other moms out there but, I am uninterested in force feeding my child anything that causes him such stress. Dr. Sultan and I had several discussions about the vitamins. I pointed out that there are children who leave the hospital everyday without the recommended vaccinations because their parents decided, for whatever reason, their children didn’t need the vaccines that the doctors recommended. (This is not a dig at moms who choose to deviate or remove vaccines from their children’s care plans. I choose to vaccinate my child, others do not. My point here is that if children are allowed to leave without a measles vaccine, we shouldn’t be kept in the hospital over a multi-vitamin). I was not going to force feed my child nor was I going to stall his discharge over multi-vitamins. In the grand scheme of things for Nicholas, his eating and gaining weight was, at this point, more important than vitamins. If the taste of vitamins caused him such stress we would either 1) find a different type of vitamin he did like, 2) spread his dosage out throughout the day so he tasted it less, or 3) live without the vitamins until he was a bit older.

Nicholas’ at-home apnea machine was ordered on Monday. On Wednesday there was still no sign of the machine. I begin to grow a bit anxious because we were now eating just fine and all we were waiting on was the apnea machine. Since we are in Florida but live in North Carolina it is very difficult to take home healthcare equipment across state lines these days (thanks, Obamacare). Several companies wouldn’t accommodate our needs even though our health insurance covered the machine in full. It took 5 companies until Thursday at lunchtime to determine we finally had a machine we could take home with us. Even Dr. Sultan was frustrated saying on Thursday morning during rounds “Why are you still here?”.

Now that we knew when our apnea machine would be here and we were eating appropriately Nicholas’ very very very last step to leaving was to pass his car seat test. They do this with all preemies. During the “test” Nicholas was placed in his car seat and was made to stay put for 90 minutes for observation. If he went into any respiratory or heart distress that the monitors would pick up, he would fail. If he failed the 1st test he was allowed to test again in 24 hours. If he failed a second time we would have to get him a car bed – which looks like a cradle strapped to the backseat of the car. I was concerned about his care seat test from the get-go (not to mention I did NOT want a car bed. When asked why I said “A car seat is a small piece of normal. We havent had much normal yet.”). Nicholas had had oxygen saturation issues from birth and would often drop from 88% oxygen saturation to as low as 80%. He would always come back from any de-saturation on his own and fairly quickly. However, according to the rules, if he de-sated to 87% even if only for 2 seconds he would fail. While Nicholas had gotten much stronger breathing on his own, certain activities would cause him to de-sat. I had a feeling he would fail his 1st car seat test. I was right.

While I understood the car seat test rules, I didn’t agree that they were appropriate for Nicholas. Nicholas was being sent home on a monitor to track and alarm us for any breathing issues that the car seat test was testing for. Why were we being failed on  car seat test for the exact things that the monitor we were being sent home on would track? I shared my concerns with the nursing staff and our doctor and they were willing to adjust the test to accommodate appropriately for Nicholas. By Thursday night we had passed our 2nd car seat test with flying colors.We were set to be discharged on Friday. Andy was on notice to fly in early.

Week 9 – Two Steps Forward & One Step Back

Normally, this is the week that Andy would travel back to NC for business for a few days and Nicholas and I would spend our days together in the NICU. But, this week Andy stayed in FL which meant Nicholas and I got to spend more time with Andy.

Sunday evening started out on a great note for us. After a day of Nicholas eating and eating and eating, and he being removed from VapoTherm and doing fine on a simple nasal canula, we were downgraded from “Level 3” status or ICU to “Level 2” status or Progressive Care Unit. Progressive Care Unit is also known as “PCN” or the “Feed and Grow” unit. Babies in this unit typically have minimal or no health issues and, for the most part, just need time to learn to be a stronger eater and gain weight. On Sunday evening there was not a space available for us in the actual PCN unit so we physically stayed in the ICU but were no longer needing the care we had received up until this point.

Andy and I spent much of the week with Nicholas helping him learn to eat. Now that he was just on the nasal canula and could eat from a bottle whenever he wanted to, we spent our days (and some nights) with him eating. Nicholas is an eager eater. Every 3 hours, like clockwork, he would begin to get ‘hungry fussy’ and only being held while eating from a bottle would satisfy him. When we would start to feed him, Nicholas would be so excited he would gulp and gulp and gulp his milk and forget to breathe. His machines that monitor his oxygen level and repsiratory & heart rates would begin to sound and nurses would come over to see what all the fuss was about. We began to learn very quickly how to pace Nicholas’ eating. Once he got a few good gulps of milk in his system we would turn down the bottle so the milk wouldn’t be available and he would hopefully stop gulping milk and instead take a big, deep, breath. This process was frustrating. Nicholas didn’t get pacing right off the bat (most babies don’t we’ve come to understand) and when he would struggle to remember to breathe his alarms would sound off and we would not only be dealing with a “Hey, where did the milk go? Why is there no more milk? I’m still hungry – call the waiter, I need seconds.” fussy baby but would also be hearing alarms sounding constantly. After 3 straight days of 10 hours at the hospital working with Nicholas I did threaten to toss the monitors out the window if they weren’t silenced (or was that threat a promise?).

All week long I was growing more and more eager to speak in detail about the remaining tasks and tests we needed to accomplish, along with the timeframe to accomplish everything directly with our team of doctors. Each morning I would wake up with a longer list of “What ifs” and “How abouts” that I wanted to discuss. And each morning Andy would say “Relax. We’ll get there.Just breathe.” (apparently Nicholas and I both needed to remember to breathe.). By Wednesday morning I had decided what truly important questions I wanted to talk with our team of doctors about. I say “truly important” because if you ask Andy questions like “When can Nicholas wear pants and sweaters? Because I have some cute outfits I’d like him to wear before he grows out of them.” are NOT important questions. You say tomAto, I say toma-toe I guess.

I knew the 2 BIG tasks we needed to accomplish before going home were 1) to come off the nasal cannula and 2) to reduce the amount of calorie fortifier (also known as “baby protein shakes”) Nicholas was consuming. I know that some babies do come home on oxygen and, as such, do not ever come off their nasal cannula before coming home. Andy & I were not interested in having Nicholas come home on oxygen if we could avoid it – even if it meant staying a few extra days so Nicholas could catch his breath a bit better. Fortunately for us, when we got to the hospital Wednesday morning, Dr. Singh must have read my mind – he removed the nasal cannula from Nicholas to see how he would handle no oxygen support at all – and he was doing just fine breathing on his own. He did get a bit winded during meal time for a few days following but, overall he was a-ok without any oxygen support (thank GOD). Dr. Singh also began discussing reducing the calorie fortifier from his diet but, as Dr. Sultan has discussed with me before, Nicholas would be going home on an increased calorie diet so we didn’t need to wean all of the fortifier from his diet before discharge. Since Nicholas was still on weighing slightly more than 4 pounds, the doctors wanted him to remain on increased calories at home so he could recoup some of the calories he would lose during his meals while he was still trying to master the art of “breathing while eating”.

By Thursday evening, Nicholas was eating 6 out of 8 of his meals straight out of the bottle (the others were being fed through his NG tube which still sat in his nose). Once Nicholas was able to eat 8 bottles (his entire day of meals) in a row, we could remove the NG tube. The NG tube was the last piece of tubing in his body, period. Once it was removed, there would be no more tubes, nor more IVs, no more PICC lines, no more tape on his face – there would just be Nicholas. Andy & I have only ever seen Nicholas’ face tape and tube free a few times – each time for only a few minutes while they were repairing or replacing the placement of or the tubes themselves. We wanted so badly to remove the NG tube so we could, for the 1st time, sit with our child and just look at his handsome face.

Early Friday morning a spot in PCN became available for Nicholas. He was moved to PCN by the nursing team at 5 AM and was settled in nicely when we arrived later in the morning. He was also up to 6 bottles in a row by 11 AM – if Andy and I could get him to eat 2 more, the feeding tube would come out. By 5 PM – out came the feeding tube- Andy & I were ecstatic. What a great way to celebrate Nicholas being 2 months than by him being tape & tube free.

Our “hey, look, we have a baby with no more tubes and tape!” high was diminished come Saturday morning. Now that Nicholas was tube-free that meant that everything that could have been administered via the tube must now go through his mouth – including medicine. Nicholas had been on a daily dose of vitamins for sometime now but, since we know they taste bad (they’re iron based to help with anemia and smell like iron – a LOT of iron) had been given via his feeding tube. This morning they had to give them through a bottle. And Nicholas HATED it. He absolutely, no doubt about it, HATED it. So much so that he gagged so hard he stopped breathing for a few seconds and his heart rate dropped causing his 1st brady episode in over 2 weeks. And as we can all imagine, after that experience he stopped eating. I would too if I thought I was being served chocolate cake and instead got brussell sprouts. Since he wouldn’t eat, in went the feeding tube.

Andy and I spent the next 2 days trying to gain Nicholas’ trust back and get him to eat again. It was frustrating. So was looking at that feeding tube again. So was hearing all of the monitors alarm when he would get stressed out while eating. I believe in my “I am so tired and so frustrated and so eager to get my child out of the hospital that no matter what you say I will not agree with you. Just stay away and let me feed my child in peace. Oh, and before you go, turn the damn monitors off before I throw them out the window and not apologize for my tantrum”  attitude was experienced by more than  a few nurses. Thank GOD for our care team who had been with us most of the time and didn’t mind my attitude that much. Other nurses who didn’t know me or Andy or our situation so well might not have taken my attitude in stride like Jovita, Tarianne, and Lily did.

Happy 2 month birthday!

Nicholas is 2months old! We celebrated the day by officially moving to our new space in the progressive care nursery, practicing eating from a bottle and singing the “happy birthday” song (over and over and over).

Today we paused from the chaos, the doctor reports, the tests, and were just a family of 3 living in the moment and celebrating Nicholas. It was a good day.

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We Are Out Of ICU

As of Sunday evening, Nicholas was downgraded from a level 3 baby (intensive care unit) to a level 2 baby (progressive care unit). We are out of ICU!

We are still waiting on a space to become available in the progressive care unit so our physical location hasn’t changed yet but, we are happy to report that we no longer need the care and attention classified for ICU babies (and we even got a new ‘big boy bed’ to go along with our new status). We are beginning to talk more frequently about discharge with the nursing team and preparing for Nicholas to come home. We still believe it will be a few weeks before we are discharged from Golisano Children’s Hospital but we are over the moon excited to have made it this far!

(more to come in our weekly update on Sunday).