Part I: The First 24 Hours

I write this for no one other than myself, but I very well assumed that others might find my story both intriguing and helpful if ever in my predicament. I find myself replaying the hours after Chase’s birth and leading up to our discharge date from Children’s and this is my way of letting it all out on paper so that I can cope and hopefully heal. A different perspective on the story might help me in the process of healing.

I believe that is one thing to know your child has an illness or to be expecting a stint in the NICU due to prematurity. It might also be less stressful to know what IS wrong with your newborn or to be told that they are simply monitoring him or her for something less severe – say for jaundice or a problem regulating temperature. I, however, knew nothing was wrong. I went 9 ½ months in great health (other than a few non-related incidents) with totally normal “baby tests” (such as the quad screen) and then I found myself within hours of Chase’s birth with a NICU baby and I broke.

We were induced at 3 p.m. on the 20th. I received Cytotec and Pitocin. I had a few problems through the night – at around 2 a.m. my blood pressure plummeted and I was barely able to speak. I was unbelievably weak and probably scared the daylights out of my husband. I also had hyper extended contractions which in my case meant I was experiencing 4-8 contractions back-to-back with no breaks… so basically 10-30 minutes of constant contracting. To relieve my unbearable pain, I of course opted for an epidural (who wouldn’t?) but unfortunately my hyperextension wouldn't stop, so I had to receive my epidural while contracting … and in a moment of idiocy I actually MOVED during my epidural… and now I have nerve pain to deal with (it’s only temporary though, and will go away over the next few months.) Chase had decels all night, so they constantly came in to roll me back and forth trying to get him off his cord. After lots of meds for my blood pressure, liquids and on and off pitocin I was ready to push.

My actually delivery was quick. I pushed for 15 minutes and delivered Chase at 9:55 a.m. His initial APGAR score was 9/10 and 10/10 at 5 minutes. He was pink and adorable… 6 lbs. 10.5 ounces. He did have the cord around his neck twice and very tightly… but that, for the record, has nothing to do with his condition although it was the reason for his decels in labor.

Michael left shortly thereafter to watch them bath and measure Chase. He came back to the room an hour later in what looked like great spirits. As the day progressed he kept pacing and asking when Chase would get done with his tests and bath as I unknowingly reassured him that they would bring him as soon as they were finished. I reminded him that there was a full labor and delivery floor that day and lots of babies were surely being seen.

Soon, it was close to 4 in the afternoon and we still hadn’t seen Chase. It was then that Michael broke down. He told me that there might be a problem and that while they were bathing him a nurse became concerned with Chase’s head (his fontanel or “soft spot”). He told me that they were going to do an ultrasound but surely everything would be ok. He didn’t want to scare me so he never let me know but that as the hours passed he began to worry that the test results weren’t good. I was “ok” for the most part, not believing that MY little angel could POSSIBLY not be perfect. Not minutes later the phone rang and everything gets a little cloudy from there.

The test showed blood on the brain and not just a little. A team of doctors came in about an hour later to explain that Chase was now in the NICU. He apparently seized shortly after Michael left and they hypothesized that the pressure from the blood caused the seizing. He had a grade III bleed… and there are only 4 grades. They asked if either of us had any blood disorders in the family to which we both replied no. They asked if we had any trauma during the pregnancy… such as a car accident… but that was a no too. Soon we found that we were dealing with a very rare occurrence, especially for a term baby, and that they hadn’t a clue why he’d have this problem.

They wheeled me down the hall and into the NICU not minutes later. They lead me there through a series of back doors to avoid having me go past the nursery, but it wouldn’t have mattered to me. I was broken, tired and in tears. I knew which one was Chase from the moment we entered the room – although there was no nametag yet. He was adorable and looked so healthy. "How could such a beautiful little man be so sick ?", I kept asking myself. His iscolete had a large sign on it “IVH Precaution”. Basically, that meant my newborn baby couldn’t be touched, talked to or stimulated. I had to sit in my wheelchair and cry. I felt so alone and cold without my baby.

I only stayed for a bit as they wanted my to settle into my postpartum room. It’s a strange feeling to know everyone is looking at you as they’ve clearly been informed of the situation. All the rooms we passed had mothers and babies, families and balloons, celebration and laughter… but it wouldn’t be like that for me.

A nurse came in to acquaint me with the NICU process, let me know the hours and numbers… told me when doctors would be by and the like and finished the conversation with “Would you like anything for the pain?” Oh would I. Only thing is they don’t make a drug for the kind of pain I felt. My heart ached for my baby.

It took forever to get to sleep that night, but within hours a NICU nurse was standing over my bed in the dark. “Chase has seized 5 more times”… “He's now on 35 mg of pheno”… “He’s having apeanic episodes of not breathing”… “We’ve had to intibuate him”. Michael told me later that he told himself then we might loose the baby.

We were awakened by Michael’s parents wanting to come up. How I wished they would have left me alone… but we used the wake-up call to immediately go to the NICU to check on Chase. Come to find out, they were already in the process of deciding when he should go to Children’s. We were told about 30 minutes after visiting him that they were going to take him by ambulance, and that I should go shower. So, I left and went to shower. I barely had the shampoo out of my hair before Michael knocked on the door feverishly to tell me they had decided to helicopter him out and the chopper would be there in 15 minutes. I still had conditioner in my hair when I jumped out (as best I could), threw my hair into a ponytail, threw on a robe and went back to the NICU.

There, the nurses prepped him for the helicopter ride by undoing all of his cords and monitors and reattaching them to a portable unit. They rewired his intubation machine and cleaned out his bed. Michelle, his nurse, told me I could have anything in his iscolete, and she handed me his thermometer, a blanket, some socks and a sign with his name on it that she had made. They told me the procedure for Children’s and explained to us how to get there. Within 10 minutes, the helicopter team had landed and were headed to the hospital. Four medics came in with a stretcher and a tiny little iscolete on top. They let me tell him goodbye and then took off his cap and handed it to me. I kissed Chase goodbye and stopped holding back my tears. I broke down as they rolled him out of the NICU.

Michael rolled me back to our room as I held the cap Chase had been wearing. I kept telling myself that the cap was all I had. I came to the hospital expecting a normal, healthy baby and now I was about to leave with nothing but a cheap piece of cloth that smelled of my baby. To this day, it is a feeling I can’t let go of.

I was discharged a day early, less than 24 hours after giving birth. I was in pain, swollen and unable to walk on my own. It would be 4 hours before I got to see Chase in Birmingham and I was already exhausted.



To Be Continued....

Blogtherapy.

I've been having nightmares about the NICU, about having my newborn basically ripped from my arms and then told that something is wrong, nightmares about the hell my husband and son went through for 8 days... and all while I was supposed to be living in a dream world filled with new baby bliss, family and all things Christmas.

I spend at least 3 hours each night trying to sleep, only to re-live the events of Chase's birth and thereafter over and over. It's terrible - really - so, in efforts to get some sleep and rest my mind I've decided on "blogtherapy". Writing has always been a great source of relief for many things in my life and thus, I believe telling my story will help me to cope.

I've already begun the blog in a word document, as I fear it's going to take up a TON of space... and I'm probably right seeing I'm only into day 2 and the piece is 2 pages long. So, I hope to have it finished soon... for both my sanity and in hopes that I help another mom out there that finds herself in my situation (or something similar).

So, here's to me dealing with what happened... finding peace... and becoming a stronger woman and mother.

Almost Home

We finally broke down in the form of two emotional outbursts, one per parent over the last 24 hours. Chase was given permission to be discharged from the NICU on good behavior ( :-) ). He's able to regulate his temp, eating very well, taking his pheno barb once daily, on room air, with great vitals, normal head circumference (yay for now) as well as a ton of other good things. We were invited to "room in" last night just for a few more hours of observation and to teach us how to administer his meds and to give us some "educational materials" on how to tell if Chase seizes (it's super hard in an infant, btw!).
The night went well, Chase fed great and no alarms went off (they are sooo loud). We both had problems sleeping and are exhausted today. As of now, we are staying one more night in Birmingham with family and then we will be back in Montgomery as of tomorrow afternoon.
Chase will continue to see both a neurologist and a neuro surgeon as well as his regular pediatrician. He will receive more than frequent head measurements which would indicate additional blood that would then need to be addressed. He has the ability to break down the blood in his head currently but if that doesn't happen, or he begins to clot, he will need a shunt to remove the blood and pressure. He will remain on the seizure meds for awhile.. if he doesn't seize he could go off them at the age of 2. Other than that, it's a waiting game again to see if and when he begins breaking down the blood. Frequent MRI's and CAT scans will help the neuro surgeons determine the best course of action for us and our little man.
Conner is doing well. He's really been through the ringer but has proved to both Michael and I that he is one strong dude. We really have missed being with him over the Christmas holiday since we've had to split our time up so much. But now, life will be getting back to a more normal state. I remember telling Conner the night before I was induced that I was truly sorry, but his world was about to be flipped on it's head... partially joking... and now that's proven to be the case. I just pray God gives us the strength to do the best for him and make him feel as loved as he is.
So thank you all, from the bottom of our hearts, for all the prayer and best wishes. In times of need, it is wonderful to see those who love you build a safety net of support... and without that we would have never made it through the last 8 days. We both love you all dearly and promise to keep you updated.

Life in the NICU

Life in the NICU
As of now, baby Chase is in the NICU at Children's Hospital in Birmingham. We too are in Birmingham and staying with family, although we are mostly in the NICU. Conner is here with us as well.
Chase has not had a seizure in over 24 hours, since leaving Montgomery after being flown to Birmingham via emergency helicopter. Until this morning, Chase was being treated symptomatically for the seizures and associated breathing problems (due to his high doses of pheno barb - a seizure medication). Now, we have the results from an MRI/MRA (a vascular MRI) of the brain and Chase has been diagnosed with Sinus Venous Thrombosis. This means he has a blood clot in the vessel known as the Sinus Venus that runs down the top of the brain. The pressure causes the seizures and bleeding. They are running genetic tests to determine if this is a long term problem or if this was just a one in a million fluke. We will know more later, but he will soon be able to start receiving nurioushment (in the form of pumped milk from me) via feeding tube, which is great news to me. However, in an infant there is nothing that can be done currently for the clot, as medication would cause more than excessive bleeding. For now, it's the waiting game for all of us.
MIchael is doing well and is doing night shifts at the NICU from about 2 a.m. - 5 a.m. in addition to the other hours we are putting in. I was discharged early to come to Birmingham and am trying to do the best I can physically. Emotionally, we are holding strong and are heartbroken that we can't be with our angel (both our angels) 24/7.
We are asking that you please keep our little man in your thoughts and prayers and we want you all to know we really appreciate all the great things you are doing for us now. We want our baby home and healthy... and prayer is the only thing we have right now.

With Love,
Amanda

Good to the Last Drama

In the spirit of my pregnancy, my last OB appointment today went from normal to not. I arrived on time and my nurse started my appointment with a blood pressure measurement. She checked my right arm first, made a face... then asked me to turn so she could check the other arm... same result apparently. My bottom number was high... and I've always had "perfect" BP. So, on the scale I went, 4 lb gain in one week: yowza. Baby's heartrate was normal. So, as she packed her things and left the room she mentions in passing "Oh, Dr. Griggs will be right in and then you'll probably be off to OB triage...". Great... just great.

So, Griggs came in and we discussed how I've been feeling, which for the record, I've felt like I was in slow motion for 3 days now and the swelling in my legs and feet has been absurd.. and I normally don't swell. I've had 2 instances in which I've seen spots, but only for a minute or two. He decided to send me off to the hospital for blood work and monitoring.

I tried to calmly talk Michael into staying home with Conner, to which he finally caved and did (it was nap time). At the OB triage, I met an AWESOME nurse named Gayle (she spells it right, yay!) who told me that if ANYTHING looked abnormal, I'd be staying. Lots of blood work and monitoring later (plus an IV line... grrr), I was released although my BP had spiked once and contractions were present. Apparently, Dr. Griggs would not be able to deliver me that night personally, so 20 hours of waiting was going to be our game plan. Personally, I think it was a bad choice medically, but I did get to come home and do things as we had originally planned.

Now, we are a medical induction and will not be bumped unless there are a ton of other people needing to be induced and all of those have more serious medical conditions.

I would have to say that somewhere in me, I believe something else isn't "right"... and that all the problems I've had this pregnancy are starting to show their true colors - letting the doctors and nurses actually SEE what I've been telling them all along. So, here's to a safe, non-painful and stress-free delivery... and a happy baby boy!

And Then There Were 3...

Only 3 people in the family NOW but as of next Thursday/Friday, there will be 4 of us!!! FINALLY, it appears we will be induced... baby is small but healthy... weighing in around the very low 6's... my guess is a 6 lb. 2 ouncer. We've been waiting on the weight to get a little higher, and at 36 weeks, he weighed 5 lbs. and a few ounces. Now, he is a little bigger and stronger and VERY ready to come home with us for Christmas!
We hope to not get bumped (PLEASE PRAY HARD THAT WE DON'T!!!!!!!!!!) as to avoid still being in the hospital on Christmas Eve. It would break my heart not to be with Conner at our house on Christmas! So, that's our story for now. I'll update if it changes.

Now... if the baby ONLY officially had a name. We're working on that. Promise.

Just Shoot Me

Dear Amanda,
I just thought I'd post a pleasant reminder in case you EVER decide that experiencing the "joys of pregnancy" sound like "fun" again. It's hard to remember exactly how being pregnant feels once you are a few months out and you've been busy with the new baby... so this time, I'm recording it.
The first few weeks weren't too bad. You sat around, waiting on Mrs. Period to come and thinking to yourself "self, this is going to be one BAD month"... then the flu-like symptoms set it around "your time", and you began contemplating going to the doc for some antibiotics ... or to Publix for a pregnancy test. The migraines were bad for about 4 months.. in case you forgot. The nauseous was never ending, and since it wasn't your first pregnancy.. you gained weight FAST.
I'll fast-forward to the end of the pregnancy, since my fingers are so swollen currently it hurts to type. The contractions are annoying, only some painful. At 36 weeks, it began to become difficult to wipe your own butt... and since you were going EVERY hour (including nights) that is more of a problem than you'd think. Speaking of sleep, this pregnancy you experienced the fun that is Restless Leg Syndrome.... yowza. Your left leg is the worst, the urge to move is unbearable... and the crazy tingling sensations are more than enough to keep you up and uncomfortable.
Let's talk about the heartburn ... the 4 zantac a day... the prilosec... the hospital visit because of the super-sharp pain in your upper abdomen... waking up a 3 thinking your throat was on fire... Yup... let's not go through that again.
I want to mention not being able to get out of bed on your own without pulling something... how bending over ventures towards a monumental event... and how you can't fit into ANYTHING in your closet at 38 weeks except 2 items made of lycra and 1 that's technically a towel.
Your feet started swelling at 35 weeks.... and sometimes your legs go to sleep now... both... at the same time... and won't stop!
But your boobs are huge. As in bigger than a D... eww. Oh, and your face is fat. Sorry... I said it.

So, self, don't be a moron. Be happy with what God has blessed you with and enjoy your beautiful baby boys. Besides, don't you have your hands full anyways?

Lots of Love,
Me