Warning, Epic novel!
JACOB CHRISTOPHER'S BIRTH STORY - 11/8/00 (8lbs 1 oz; 19.5 inches long)
Just a warning this is probably going to be an Epic by the time it's done.
I've been MIA since October 25, 2000 when I started with preterm labor.
Actually it started early in themorning and was strange because it was right
sided. I waited until my doctor was in around 9:00 AM and called. They
weren't overly concerned but said go ahead to the hospital to be checked. I
had the choice of two hospitals and this was not the one I wanted to be at
but it ended up being a blessing in disguise. We went over around 10:30 and
they checked me. I was still about 2 cm and 50% effaced but the monitor was
picking up definite contractions although I was only feeling them on my right
side. They of course did a urine culture at that time too. They did an u/s
and said that Jake was about 7 lbs 5 oz and looked good. First they made me
walk the halls to see if it was real labor and progressed. I walked around
until about 1:00 when the resident (Sharon) said let's check again. Sharon
quickly became a great friend to us through all of this ordeal. Well this
time I was 3 cm and about 60% effaced.
They then decided to move me into an L&D room instead of the cramped exam
room.
My doctor wanted to attempt to stop my labor since I was only 35 1/2 weeks
and we
knew the baby was a boy. Apparently white males have the slowest lung
development and she was concerned that he might have some problems being this
early. They hydrated me like crazy and I was still progressing. By the time
they decided to try magnesium sulfate (that's a whole other story) which made
me feel terrible to say the least, I was 4 cm and 60% effaced. They kept me
on the mag all night and into the morning. They had detected sand or gravel
in my urine culture and determined that I probably had a kidney stone. The
next morning they decided to stop the mag sulfate since the contractions
stopped and I was starving since I hadn't had anything since the morning
before. They let me eat. Big mistake!!! I ended up getting really sick
after taking a few bites of food and proceeded to vomit. Well I guess that
was a blessing in disguise because they still weren't sure that I had stones.
In the process of getting sick I passed a rather large stone. They then
decided to get a renal u/s and it showed that I had bilateral hydronephrosis
(enlarged kidneys) and a very large right sided kidney stone that was not
obstructing.
The treatment that everyone decided on was to try to get me until 36 weeks at
least and manage my pain. First we tried Percocet which didn't work, then
Nubaine which was not much better, and then finally Demerol which did manage
to take the edge off a little bit. After sitting in the hospital for a week,
they decided to discharge me on Halloween which I was glad for so I could see
Eric dressed up. I was of course on bedrest and they now wanted to get me to
37 weeks. The one good thing was I made a lot of good friends between the
doctors and nurses and the hospital and that made all the difference through
all of this. The next morning, November 1, I started having pain on my left
side so back to the hospital we went. It ended up being nothing more than
they already knew about so we scheduled my induction for November 7 that day.
I was in excruciating pain between the stone and the baby but I would do it
all over again if I had to.
So I was actually suppose to go in to the hospital at like 11:00 PM on
November 7
(insurance reasons). My doctor was trying to get me an extra day after he
was born.
However, the prima donna anesthesiologist didn't want to get called in that
late so they told me to go over around 5:00 PM. My plans for an unmedicated
birth pretty much went out the window due to the extreme pain from the stone
too. They were afraid it would dislodge during labor and cause more problems
so they pretty much insisted on an epidural which I wasn't thrilled about at
all.
They started the pitocin after I had some fluids and then around 7:00 PM the
anesthesiologist came in for the epi. I had done this before so I knew what
to expect but I was still not happy about getting it at all. Well he put it
in and then they just waited. My doctor was a little annoyed because the
nurses weren't being very aggressive with the pitocin. They figured since I
was contracting every two minutes that it was enough but I knew the
contractions weren't strong enough to do anything. So between watching the
election fiasco which was rather amusing because each time I woke up there
was a new winner I noticed that the epi wasn't doing too much on my left side
but my right side was totally dead. I told the nurse and they just kind of
blew it off since I wasn't in a lot of pain. My doctor came in around 6:00
AM and I was only 4 cm and about 70% effaced. They turned up the pit and my
buddy Sharon talked my doctor into attempting to break my water. Well Jake
was still really high so she first tried with a fetal scalp electrode since
they are longer than amni hooks but it didn't work. PS I was feeling
everything on my left side. They adjusted the height of my bed a few times
and in that time my cervix came down enough that she could break my water
with a hook. The fluid was clear which I was thrilled about since I had
meconium staining with Eric. I figured this way I could at least hold Jacob
right away. They broke my water at 7:15 AM and then my contractions started
to get stronger and stronger. At this time the stupid plug on the bottom of
the epi pump had come out so unbeknownst to me I hadn't had any medication
for a while (no wonder I was in so much pain). I really got to the point
where I didn't think I was going to make it because it was really intense.
At about 9:00 o'clock Sharon came in and checked me and I was only about 5
cm dilated. My doctor came in to apologize since she had to go because she
had office procedures to do and told me that the attending (Dr. Croff) would
deliver me. I started to get really nauseous between contractions and swore
I would be sick and I felt everything on my left side. Around 9:45 AM, I
told Tom to go find someone because something was going on. Sharon came in
all scrubbed to go deliver the woman next store and the minute she checked me
she started laughing and told the nurse that I was 10 cm, 100% effaced and +2
station. The only thing I can remember saying to her was "but who is your
favorite patient?" She laughed and I did get to go first since this was #2
for
me and the other lady still had a lot of pushing to do. Dr. Croff came in
who was
absolutely wonderful. I started pushing at 9:50 AM and Jacob Christopher was
born at 10:06 AM on November 8, 2000. Fortunately I had no episiotomy and no
tearing. I think that's because I actually listened and stopped pushing
after his head was delivered. I literally coughed out his body at the
doctor's suggestion to avoid tearing.
His apgars were 9 & 10 and I did get to hold him right away but I immediately
knew
something was not right. His cry was very breathy which was totally
different than his brother. Call it mother's intuition but I knew something
was really wrong. They cleaned him up and assumed that he had just aspirated
some clear fluid. They attempted to suction him in the L&D suite but figured
they would go ahead and take him to the nursery to be able to get everything
out. A few minutes later my labor nurse came back in and I asked if he was
okay. She then told me that they had to take him to the NICU because he was
really tachycardic (fast heart rate).
Forgive me but it's really hard to relive this part and it's still a bit
foggy. The
neonatologist came in to talk to us and said that Jake was having trouble
breathing and they really weren't sure why. He told us that they had him in
an oxygen hood and hoped that within a little while he would respond and be
fine. I was absolutely terrified. They moved me to a room (private, thank
god) and called the NICU and they said it would be okay for us to come see
him. It almost broke my heart then and still does just remembering it. We
went in. He was on a warmer and struggling to breath even with the oxygen
hood. They said that if he didn't improve shortly they were going to have to
intubate him (put him on a ventilator). They still had no idea what the
problem was but suspected it might be PFC (persistant fetal circulation).
They explained that when a baby is born they are supposed to be able to open
the blood vessels in their lungs to breath but unfortunately Jake was still
breathing like he did in utero. I can't even begin to recall all of the
details of the next three days but in a nutshell, that night they put him on
a ventillator, started a bunch of IVs to keep his blood pressure up, and put
in an umbilical catheter. I have never been an overly religious person but I
have never prayed before like I have in the past month. I couldn't
understand how a term baby could have these problems. By the way he was 8
lbs 1 oz and 19 1/2 inches long.
The neonatologists were very honest with us and said that he was very sick
and they
weren't sure he would make it. I have never felt so lost as I did then.
Thank god for the support of my wonderful husband and parents and friends
because without that I would have never made it through this whole ordeal.
They told us that they were going to try a few different ventillators. They
did and nothing was doing much good. Finally the third night (the hospital
let me stay an extra day), he appeared to stabilize. The doctors had told us
that if he got any worse that they would have to transfer him to Children's
Hospital of Philadelphia for ECMO which terrified me. When my husband and I
had toured this L&D unit when I was 20 weeks pg, we had a terrible male nurse
give us the tour. When I asked him then what level NICU they had he said
that they had every ventilator but 1 (ECMO) and if a baby was sick enough to
need that, they weren't going to make it anyway. This stuck in my mind when
the doctors told us he might have to be transported. Fortunately I talked to
some of the nurses that night and they knew exactly who it was that told us
that and said that he was really misinformed and that a lot of babies do very
well with it.
I stayed almost the whole night in the NICU with Jake and he appeared to be
stable.
They were even able to come down on some of his ventillator pressures a
little bit. The next morning though, the original neonatologist who had seen
Jake right after birth came in to tell us that they felt it would be best to
transport him to CHOP because they were reaching the end of their rope as far
as how much they could do for him. They had to go back up on his pressures
since he was starting to deteriorate again. They wanted to transport him
while he was stable instead of having to airlift him out in a crisis. I can
honestly say that November 11 was the scariest day of my life. We sat in the
NICU while they got him ready for transport via ambulance. Tom and I were to
meet them over at the hospital. My heart absolutely sank when I saw them
take my baby away in an ambulance with lights and sirens. They warned us not
to follow and said that they were only doing it to get him there and settled
in more quickly. They tried nitric oxide gas on the way as this was the last
resort before ECMO.
So we got to Children's Hospital (CHOP) and had to go to admissions and then
finally up to see him. They told us that they didn't feel that any other
therapy would work for him and that ECMO was pretty much his only hope. For
the benefit of anyone who doesn't know what it is (like we didn't), ECMO
stands for extracorporeal membrane oxygenation. What they do is surgically
insert two cannulas or tubes into the right side of the baby's neck and into
veins and/or arteries. It's actually the same principal is a heart-lung
bypass machine but used for extended periods of time (3 days to 3 weeks) to
give a child's lungs and/or heart a chance to heal. Fortunately Jake only
needed venovenous (vein to vein) since it was only his lungs affected. The
arteriovenous kind is a little more serious since they have to sever the
carotid artery in the neck so that was the one bright side of this. They
explained all of the risks of the surgery and we had one last chance to see
him before the procedure. This was the one and only time through this whole
ordeal that Tom actually broke down. It was really hard to kiss him good-bye
then not knowing what would happen. We waited for the surgery to be complete
and we were finally aloud to see him. The only risk after the procedure was
mechanical failure and/or brain bleed since he had to be a blood thinner to
keep the machine from clotting his blood.
On Thursday November 16, they attempted to clamp the machine to see if he was
ready to breath on his own. Unfortunately his oxygen desaturated and he just
wasn't ready to breath on his own. Finally on Monday November 20 they tried
again and his numbers looked great. They clamped the circuit and called
Surgery to come remove the cannulas from his neck. He was then only on a
conventional ventillator with relatively low oxygen settings but rather high
pressures. They started to wean him and on Wednesday November 22 they
started feeding him, weaning his pain meds, and they tried to extubate him
(take out the tube). He did great for 12 hours and then started to
desaturate again and they had to put the ventillator back in. It turned out
he was developing an infection and was just not strong enough to breath on
his own at that point. We were really depressed to say the least. His
doctors decided that they would try to start things really slowly this time
around and on Saturday November 25 they started feeding him again. They also
started to wean his ventillator settings very slowly. On November 28 his
doctor said while he was on his way out that they felt that they rushed him
too much the first time and that Jake would pretty much have to come tap them
on the shoulder to tell them he was ready to be extubated again. He was
hoping by that weekend to have him off the ventillator.
Well apparently Jake overheard the conversation and decided that he just
didn't feel like waiting anymore. He flung his little head back and pulled
out the ventillator on his own. The nurses grabed the little tiny oxygen mask
and called the resident to reintubate him when he suddenly stopped crying and
smiled like he was very proud of himself. It was the difference between
night and day how much better he was handling breathing this time. The last
time he wouldn't even swallow his own secretions and did nothing but cried
with a very hoarse voice. This time he was hoarse too but he was actually
smiling!!! :) The resident asked Tom and I what we wanted to do. He said
that they could reintubate him or give him a chance. We both felt the same
way that he was trying to tell them something so let's just give him a chance
on his own. The resident promised us that if he started to struggle that
they would reintubate him immediately so it wouldn't set him back any
farther. He explained that the first 30 minutes were the most critical, then
the first 4 hours, then the first 24 hours. Most likely if he was still
doing well at that point, he would be fine breathing on his own.
I think Tom and I have held our collective breath all day long but I am
pleased to say that Jake was right and handled breathing beautifully this
time. The next steps were to wean his oxygen requirement on nasal cannula,
get him to eat food by mouth, and get him off of his pain medications. He
starting taking food by mouth on 11/27 and nursed like a champ. They say
that sometimes eating is one of the hardest things ECMO babies do but I knew
that no male in this family would have trouble with food! :)
They progressed his feeds by mouth and finally removed the NG tube (the tube
from his nose to his tummy) on 12/1. They went down on his oxygen
requirements slowly and started to titrate his pain medications down.
Finally on 12/4 during rounds the doctors finally said the "D" word
in the same sentence with Jake's name - - - DISCHARGE!!! They were planning
to discuss him on discharge rounds that day. I couldn't beleive it. I was
so afraid to even think that far ahead for so long that I started to cry the
minute I heard it. We still had to get him off of his oxygen and medications
but we were so much closer. They even told us that by either the end of that
week or the beginning of the next he should be able to go home.
On 12/5 he had an MRI of his brain (a precaution since he had been on blood
thinners) and it appeared to be good. He also had his oxygen stopped that
day too. Finally on Saturday 12/9 they went to oral doses of his pain meds
and totally stopped them Sunday morning 12/10. He did exhibit a little bit
of withdrawal but I could usually comfort him with nursing so I lived at the
hospital that weekend just to get him home. It was starting to get
increasingly difficult to leave Eric in the mornings and to leave Jake at
night. All I wanted was for both of my boys to be together with us. Finally
on 12/11 during rounds they said that he could go home!!!!! :) The only
problem was he was getting really inconsolable from narcotic withdrawal. I
was certain he would be okay once we were home but I was deathly afraid that
they would change their minds so needless to say when Tom got there, we ran
for the door! He was a little edgy his first day home but since then is
adjusting beautifully.
I just wish that I could somehow erase some of what we have seen in the last
month.
Jake lost two of his room mates in his first room (both were micropremmies
that were
born at 24 weeks). He lost another room mate in the next room to a rare skin
condition. The most heart breaking case was his next-crib neighbor. This
baby was a term infant born to very loving parents. They knew he had some
deformity of his nose and face from an u/s but two amnio's came back fine.
This poor little guy had multiple birth defects ranging from no cartilige in
his nose to enlarged tongue and club foot just to name a few. This little
guy will probably never leave the hospital yet the day of Jake's discharge
his mom came over to me. She gave me a huge bear hug and told me to just
enjoy and love Jake. I knew that she was just trying to remind us of how
lucky we were. My heart still aches for them and for her selflessness of
being happy for us when they had so much to deal with themselves. After
coming so close to losing our own child, I ache for any parent that has had
to experience that pain.
As close as we did come to losing him though, I thank god every day that Jake
is strong and healthy and alive. They feel that he will have absolutely no
residual problems as a result of this except his respiratory system might be
susceptible to infection for a couple of years. He suffered no oxygen
deprivation (thank god) and all of his brain scans and echocardiograms have
been perfect. To this day, the doctors are not sure what caused this and may
never know. His final diagnosis was PPHN (persistant pulmonary hypertension)
but what caused it, no one knows.
The one thing that I have definately learned through this whole experience is
that I was very guilty of taking my family for granted. Even though I
thanked god everyday for Tom and Eric, I didn't stop to appreciate the little
things. Now the things that used to really upset me (lack of money, etc.)
just don't seem important anymore. The sky seems bluer and everything just
seems a little bit better when you stop and take the time to appreciate it.
I am so very thankful for the love of my husband and children. I have
battled a rough case of postpartum depression these past few weeks but I
honestly think that little Jake has pulled me out of it. I also don't know
what I would have done without such wonderful friends and support.
This has been an incredible journey to get our little guy home happy and
healthy. At
some times most people wondered if we ever would. One thing though, Tom's
and my own faith never wavered in knowing that our little guy would somehow
be okay. When we said this to a few of the doctors through this whole thing,
they looked at us like we were crazy but I honestly beleive faith and hope is
all that got us through this very rough time. The funny thing is that I am
not the least bit bitter and haven't been throughout this. I firmly beleive
that things happen for a reason no matter how obscure it might seem to us
sometimes. I know one thing now, I have made a promise to myself and my
children - to be the best mother I can be and to take the time to just enjoy
my kids and my life. I also decided to go to back to school to become a
nurse (possibly NICU) so in some way I feel like this maybe did happen for a
reason.
SheriR & Jake