A MicroPreemie Story: The Honey Moon Phase

After the dust had settled from the day of Beckham’s birth reality began to sit in.  We started reading up vigorously about micro preemies, percentages, what to expect, other peoples stories and more.  Regardless of the percentages as I read other moms stories of their micro preemies I began to feel a bit of relief and maybe even an ounce of hope.  Stories of people that we knew flooded in.  People that were preemies, or knew someone with a preemie that had survived and was doing fine.  All of this time we didn’t know any of these stories about our friends or their friends and relatives and now we were learning so much about them.  The hospital had a library where I found a few books on prematurity and what to expect as well as real stories from the NICU.  As we read through these stories we found the majority of them the babies had 1 or 2 issues and then were fine.  It was reassuring and I hoped this would be the case for us.

Every day and every week we would be on “watch” for something new.  Week 1 was the brain.  Beckham would be stable with meds and oxygen through intubation and his line in the belly which would eventually be replaced with a PIC line, but the first week was the greatest chance for a brain bleed.  We were told once micro preemies make it past 7 days with no brain bleed they are pretty much in the clear.  We needed to be on the lookout for any repetitive motion that could indicate a seizure and he would have multiple brain ultrasounds in the first 7 days.  I didn’t know how they could do that on such a tiny head.  A head only the size of a Kiwi.  The doctors explained brain bleeds are ranked on a level 1-4.  1-2 being fairly manageable and 3-4 bring quite concerning with the possibility of long term effects if not resolved.  All we could do is watch and wait.  In the mean time we had plenty of other numbers and symptoms to watch to ensure he was sustained and not declining.  The doctors would call this first week the honeymoon period.  The first several days most micro preemies are able to remain stable with no issues.  They cautioned us not to get too hung up on his doing well in the first few days as anything could go wrong and if and when it did his body was so fragile it would be extremely difficult for him to handle anything major.  We proceeded with caution enjoying the calm before the storm.

Day 1: (remember this is the 2nd day as the hospital counts the first day as “Day 0”) Beckham had lost an ounce.  He was now 1 lb 7 oz.  Beckham was jaundiced and would be given a light over his incubator to help with the jaundice.  Although his eye lids were fused together he would be given mini cloth shades that would cover his eyes for protection as his skin over his eyes and everywhere was so thin it would not do much to protect them.  Additionally the doctors said we needed to treat Beckham as though he is still in the womb.  He would be kept in the dark as much as possible and as quiet as possible.  The incubators were mostly sound proof and had a removable cover to keep it dark.  The incubator also had heat and humidity control.  His body was unable to control his temp and of course really no moisture for his skin which was so frail and needed to remain humid so he could retain his fluids.  The less exposure to the real world the better so that his tiny body would not be stressed out.  We also had to watch oxygen levels and I don’t mean just his O2 percentage.  We needed to monitor how much oxygen he was being given which can vary based on his O2 saturation percentage, volumes, pressures etc.  The respiratory tracking screen was the most confusing, so many numbers and things to track we needed it to be explained to us every day.  This day he was on 25, all thing considered it was not too bad, as the lowest is 21 and highest 100.  Beckham’s Sodium levels would be monitored as it was high, high sugar levels needed to be continually monitored, his PH levels to ensure his body wasn’t acidodic or too alkaline with the oxygen levels and sodium balance, his dopamine levels that were being given, as doctors want to ween off of dopamine (which was helping keep his blood pressure up)as soon as possible,  his blood platelet counts and H&H also monitored and the list goes on.  How did they test these levels?  Mostly through blood draws.  As you can imagine there’s not much blood in such a tiny baby to draw. The more blood taken would be the more blood transfusions and platelet transfusions needed.  They encouraged us to have people donate blood and platelets.  Luckily Beckham turned out to be a universal receiver and this would make it easier to give him blood from any type rather than needing a specific type.  I had never thought about the transfusions.  I mean, I had had so many surgeries before where you check off that you would or would not accept blood products in case of emergency and  I always checked yes, even though the idea of it scared me for some odd reason.  Now it wasn’t even an option.  He just gets it.  Period.

Day 2: Another ounce lost, this was to be expected.  Now 1 lb 6 ounces Beckhams body was starting to struggle a bit.  He would need his first blood transfusion as his H&H (hematocrit and hemoglobin) were low and platelet levels were declining.  This was no easy task.  A separate IV would be placed (an IV would only last a few days in his various limbs until another would need to be placed) which would require a visit from the VAT team (a special team that places various lines in the tiny patients).  Once placed the transfusion would go on for several hours pumping donor blood into his system drop by drop.  His oxygen saturation was also declining from 88-92 with 28% oxygen being given at increased volumes. This was also showing on his blood gas levels which monitored the O2/C02 levels in his blood.  He was being given dextrose for his sodium levels and his sugar levels were on the rise.  His PH levels came back showing Beckham was acidodic.  The doctor called it metabolic acidosis, indicating there is too much acid in the body fluids.  The blood transfusion would be able to help this as well.  His bilirubin was also on the rise so treatment with the special bili light would continue.  Most of the various levels would be adjusted via his TPN bag.  This was the bag containing various nutrients that go into his body that at the time could not be given through his mouth.  It was a bright yellow bag, the kind of bag I always think of when people need to go to the hospital to be re hydrated from drinking too much..thanks to medical TV series I suppose.

Day 3: I felt the sleeplessness finally getting to me.  My patience was wearing thin in every aspect of the sense.  While we appreciated the Ronald McDonald House for everything they had the beds were extremely uncomfortable and I hoped eventually my exhaustion would just knock me out.  I found myself sleeping on the uncomfortable bed by the incubator more than the bed at Ronald McDonald.  It was still difficult for me to leave his side and for Josh as well so we took turns sleeping and being up so one of us could always be there with him.  I had never felt exhaustion like this.  My body feeling numb, my emotions always on the verge of crying, my mind only on my son, I couldn’t think about anything else.  To think before all of this my biggest worry was how I would handle a sleepless baby.  I thought that was exhaustion!  It’s not.  This was true exhaustion.  Every bit of my body and cell in my body working overtime to keep me together, to keep me awake and alert, to process all of the scientific information being thrown at us constantly.  I don’t know how we did it.  We were paid a visit from the NICU social worker who gave us a large To Do list and mounds of paper work that we would need to fill out to receive medicaid assistance.  The last thing I was worrying about of course but a necessary evil.  The assistance would not be much but it would be something and we would automatically qualify for “Low birth Weight”.  It would take months to process and medicaid would not back date any coverage which I thought was pretty shitty but at the time could not care less.  Of course now I think back to folks we met in the NICU that didn’t have the luxury of waiting for assistance and realize how truly terrible it really is…but I digress. This day Beckham lost yet another ounce, now 1 lb 5 ounces.  He would need a second transfusion.  This time platelets, which the doctors were not surprised over considering the previous days numbers.  Although he had just received blood the previous day his H&H was still fairly low and of course he would need more blood tests.  He just couldn’t make blood as fast as it was being taken.  His various levels continued to be all over the place as the doctors struggled to find the right balance.  Because of this he would be scheduled for his first brain ultrasound as they feared the dips and increases in all the wrong places could effect the brain and cause a bleed.  We would, however, receive a few uplifting moments this day.  The first being Beckham had given us his first urine output!  First dirty diaper!  It was a big moment and indicated things were being processed finally though his body enough for him to urinate!  The next being the doctors felt he was ready to receive his first feed.  He would receive donor breast milk!  When they brought the feed I couldn’t contain my laughter at the size of it.  It was the first time I had laughed since before his birth.  It was 1CC.  Just a few drops if that! But it was nutrients.  They could not fit the tube in his nose as his nostrils were too small so for now they would add another tube through his mouth for the feed.  After a short time when it was done they would check for residuals to see if he was able to hold the feed without anything coming up.  He held it all and there were no residuals!  This was an amazing sign!  After this we got incredible news that his brain looked great!  It was all clear of any bleeds!  It was turning out to be a great day for our little fighter!  To make the day even better he needed a bed change.  This was no easy task as his bed made of silly puddy would need a new sheet to cover it as well as the full bed underneath it all while keeping Beckham inside the incubator.  what it did mean is that mom would get to pick up her tiny fighter and hold him up while everything was changed!  My exhaustion immediately disappeared and was replaced by utter excitement.  I would finally get to hold him!  Not how I imagined obviously…I wanted so badly to wrap him in my arms and hold him close to my heart but I would only be sticking my hands into the port holds and lifting him.  He was lighter than air it seemed.  Only 12 inches long from head to toe, his head smaller than the palm of my head, his diaper the size of a credit card and it was so big on him it made his legs stick out awkwardly like he was straddling a horse. Though it was only for about a minute that I was able to lift him,I soaked in every second of holding my son for the first time hoping he would feel some sort of connection and know this was mom.  All the while in the back of my head completely freaking out that one slight movement could break him in half.  I had never held anything so fragile in my life.  It was equally as terrifying as it was amazing.  We got the updates out as friends began to advertise to everyone they knew to donate blood and breast milk.  We were again overwhelmed at the outpouring of love and messages, folks interested in donating and hope from everyone we knew and people we didn’t know!  Our community of support was really keeping us going.  To this day I don’t think we would have survived without them.

Day 4: The good news carried over from the previous day!  Beckham had gained weight!  He was back to birth weight at 1lb 8 ounces!  How exciting!  He would wiggle and make squeaky noises and I would laugh at his wiggles as it looked like he was dancing to a little salsa number!  His blood and platelet levels were greatly improved, his acidosis and sodium was improved.  We began noticing little things about him like when his oxygen would decline and he was moved to his right side he would do better!  This was a big moment for me.  Telling the nurse that I noticed he did better on one side and then him doing better on that side really empowered me for the first time since being the the hospital.  It’s so easy to get lost in the midst of all the madness that was surrounding my son.  The machines, the doctors, the nurses, and respiratory team, the VAT team all doing things for him that I couldn’t do.  I couldn’t be the one to make him better.  I was his mom and I was lost, hopeless and useless.  For the first time I didn’t feel that way.  For the first time I really felt like I was a mommy and not a bystander watching over a patient being held up by my husband and our parents who were the only ones we felt could really provide us the one and support we needed.  Finally I could do something and little did the doctors and nurses know this would only be the beginning of a very long road of Maegan’s Opinions! hahaha.  In the end it was this empowerment and this first step on confidence in speaking up for my son that would eventually save his life.

Days 5-7: Over the next several days Beckham would continue to do pretty well overall.  There were talks of removing his breathing tube if his blood gas levels continued to do well then the line going into his belly button would be replaced with a PIC line (a central line), his feed would be doubled to a whole 2 CC’s!  His BP had declined slightly which called for an Echocardiogram.  The Echo showed Beckham had a PDA and a VSD.  The PDA being the flap that closes when you are born not allowing blood flow into the lungs that otherwise would be going that direction while in the womb.  The VSD essentially a hole in the heart that could send blood flow the wrong way.  Both common in micro preemies, both sending flood flow the wrong way and would need to be fixed surgically but at the time they thought surgery could wait.  Beckham’s weight dropped back down to 1lb 5 ounces which again the doctors believed was normal.  He had his first tiny poop (meconium) which they anticipated more to come as it was not nearly as much as should be there, but the fact that there was anything was a great sign!  He was starting to get some green residual back from his stomach through his feeding tube but the thinking was it may have been a one off and would be checked on day 7.  By the 7th day Beckham continued to do well  while his weight was still 1lb 5 ounces his pulmonary settings would be changed to Non-Assist which was a BIG step and most importantly the day 7 brain ultrasound would be done.  We anxiously awaited to see if Beckham had made it to that “final clearance” of having no brain bleed.  The neurologist came by and gave us the all clear.  I cried in excitement over the moon about the possibilities for my little boy!  He could really do this!  He could make it out of here and be completely healthy.  For the first time I didn’t just have an ounce of hope, I had a bucket of it and I could not wait to see what this little one could grow to do!

#TEAMBECKHAM

 

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