I can’t help but wonder if he will always be a fighter and I can’t help but wonder if his life will continue to remind us what a miracle he is. From conception, to his birth story, to 9 days old in the ER with an infection that could have cost his life, this little guy of ours has been a fighter through it all: defying many odds.
I have a feeling we will never forget our first visit to the ER. And I don’t think I will ever be able to erase from memory our first time watching our baby get a spinal tap, a catheter, blood drawn, his first IV, and his first time being hooked up to all sorts of monitoring equipment. And all at 9 days old.
Some times in your life God is silent, but then there are times when He graciously shows us his hand, his perfect timing, his love, his comfort and his peace. Last Friday was a really scary day, one we will never forget, but there is also something about knowing God is there with you the whole time, directing each moment and step. At the end of it all Daniel and I came out of it all knowing how blessed we are , how covered in prayer we are, how much God watches out for us and our little Sebastian, and we are overcome with thankfulness.
On Friday after Sebastian, Dayla and I came home from our first real outing out; Sebastian (to my surprise) didn’t want to eat at his usual time even though he seemed hungry and fussy. Then while I was on the phone with a friend, he started to make a very low, very guttural grunting noise. This didn’t throw me off at first, as I attributed it to gas, but then nothing I did relieved it…..AND…..it lasted TWO HOURS. At the end of the two hours of grunting I was surprised to see that he still had no interest in eating and suddenly he was very hot. I took a thermometer reading: 101.7. I re-took it: 101.9. I started to cry.
There was no way this was okay.
I got a hold of the nurse on duty and I told her the story and noted that by this time it had been 5 hours since he had eaten, holding back my tears as I explained it all. She told me to give him baby Tylenol and that should cut his fever. Being one who never grew up going to the doctor much I usually will find every excuse not to go, but in this case everything inside of me felt that this suggestion was crazy. Call it mother’s instinct.
Trust your instinct.
I asked for an appointment and got one later that evening 6:45pm. Not long after I hung up the phone the fever broke on its own and two hours later Sebastian ate again. “Should I go to this appointment?” I wondered. Everything seemed so fine now. However, there was something in the back of my mind that kept hounding me, and ultimately that got me to go to the doctor’s that night.
Just two days earlier my friend Amber came to drop off food for our family and she happened to tell the story about her son Asher, and how when he was just 9 days old he started to not eat and had a high fever. She told the saga of how they had to go to the ER and that Asher ended up having a really bad viral infection (that could have had the ending that every mother fears the most if they hadn’t gone to the ER). As I held the thermometer in my hand that read 101.9, I just couldn’t help but get this story out of my head….I mean it just seemed too coincidental that she HAPPENED to just tell me that story, for the first time, two days before.
As it turns out, I don’t actually believe in “coincidences”.
I sat in the doctor’s office for almost two hours (after-hours care is slow) and as Sebastian continued to look completely normal I started to regret my decision to come. But I am stubborn and I like to finish what I start, and praise God that our doctor’s office is far enough that I thought to myself, “I came all the way out here, I might as well just stay and see the doctor”. A nurse finally came to see me, she heard my story, took his temperature (now a low 99) and her calm demeanor and lack of concern about the situation put me at ease, “this is no big deal” I thought. Then the doctor came in and nonchalantly asked me if he had a fever today.
“Yes, 101.9” I responded.
“WHAT DID YOU SAY?”
I repeated my answer.
“GET UP NOW. YOU ARE GOING TO THE ER.”
My heart started pounding. “Really??? Do I NEED….”
“YES. You NEED to tell me now that you are going to go to the ER. A temperature over 100 in a newborn is very serious. I don’t care that he looks fine now, you need to go to the ER”
I choked back my tears, asked where Children’s Hospital was, and I called Daniel to come with me. As we sat and looked at Sebastian, we couldn’t help but continue to question if we needed to be there. Several of the staff kept commenting on how “good he looks”. Then we talked to the supervising doctor.
“Let me put it to you this way” the doctor said, “80% of newborns who come in here and we do the spinal tap and blood cultures and urine cultures… and all this invasive and not fun stuff to….well, they have nothing wrong and they go home and we wonder if we should have done all we did to those little babies. But then there are the 20% who come in and they have an infection and we end up saving their lives.”
Well, after our ER visit, being admitted to Children’s Hospital and staying almost a full 72 hours… being poked, prodded, and checked by countless doctors …we found out that our Sebastian was in the 20%.
24 hours after being admitted to the hospital ,the pediatrician came into our room to let us know that Sebastian has a Urinary Tract Infection (UTI). She not only gave us the diagnosis, but told us the same 80%/20% statistics and confided in us that was so glad that we came in and decided to stay in spite of the fact that he “looked fine”. And we in turn became so glad for each doctor along the way, each moment, each decision, each little turn in the story that was made, that ultimately ended up saving our Sebastian’s life.
There is something very strange about thinking of the “what if’s”. It can be scary. It can be humbling. It can make you fall to your knees and thank God. It can make you weep. It can make you hold your baby a little bit tighter and a little bit longer than you did the day before, breathing him in and appreciating every last rise and fall of his chest.
Breathe them in. Praise God. Their life is so precious and so fragile.
Sebastian had an ultrasound on Monday to see if the infection had gotten to his kidneys, and if it hadn’t, we could go home. We are praising God that his ultrasound came back with good news. We are home now and Sebastian will have to stay on antibiotics for the next 14-24 days to treat any infection left in his body and to insure that he doesn’t get another infection. We are praising God’s name over and over again that he is here with us and being treated, however we still long for your prayers. Please Read:
There are two reasons that a newborn can get a UTI. One: they just got a UTI, no explanation. This is our hope for our Sebastian and honestly our fervent prayer. BUT there is reason two: UTI’s can be caused by blockages and a condition called vesicoureteral reflux (VUR), in which urine from the bladder backs up into the kidneys. VUR is found in 30 to 40 percent of babies and young children who have UTIs. (This was explained to us as a valve that we should have, but in some babies it is missing causing the urine to not only go down, but also to back up into the kidneys. This can be very dangerous.)
On November 30th we will get a VCUG to show if this is what Sebastian has. A voiding cystourethrogram (VCUG), shows whether urine is backing up from the baby’s bladder into the kidneys. During a VCUG, X-rays are taken before a catheter is inserted into the bladder through the urethra. A liquid dye is put into the bladder through the tube, and more X-rays are taken to watch the dye as the bladder fills and as your baby urinates. If the urine backs into the kidneys, it can be corrected either with time and age or with surgery (depending on the severity and situation). With either situation (if there is any sign of a condition) at the very least Sebastian would have to be on antibiotics for an extended period of time, possibly a year or more. The worst case scenario would be surgery.
We know that this is not the end of the world and that it is completely treatable, but we still are fervently praying that this was just a UTI and nothing more. Only God knows right now, and we appreciate all prayers, love, support and help that have come our way in the mean time.
So we thank you for each and every prayer that has already been said for our little guy….and ask you to praise God with us for so many answered prayers….but also humbly beg you to please keep praying.