I have been asked so many questions that I decided to compile a nice long list and answer them all. I will probably do a few blog posts like this as time goes on.
Do you plan on more children?
No, I have three beautiful children. I could not go through another pregnancy being terrified that my water would rupture at any minute. I also could not watch another child go through what Eagan is going through. My uterus was essentially destroyed during my c-section to get Eagan out safely. It would be unsafe for me to carry another child for this reason alone. The doctor preformed a tubal ligation at the end of my section and I am one-hundred percent at peace with this decision.
How are your other 2 children responding to Eagan's hospitalization/you being gone?
This is a tough one. I battle with this every day. Fortunately, I have family that helps take care of the kids. Eli is almost 3 and Evelyn is almost 2. They are young enough that they probably will not remember this and although they miss me, all of the fun babysitters they get are a good distraction
How have you kept up a schedule of being with Eagan, sleeping, pumping, seeing your other kids?
I wake up, pump and leave every morning from the Ronald McDonald house between 9 and 11 am depending on what time I left at night. I go straight to Eagan's room and later go to the cafeteria for lunch, then pump again. At 7 pm, the nurses change shifts and I have to leave the NICU. I eat dinner, pump again and then go back to his room at 8pm. I leave the hospital usually around 12-2am. I pump again, shower and go to bed. Then I do it all again the next day. On Thursdays if Eagan is doing good, I visit him in the morning and leave to go home mid-afternoon. I spend Thursday night and Friday with the kids. I spend the weekend at the hospital and I have lunch and an outing with the kids on Sunday. I wish I could spend more time with all three of my babies, but Eagan needs me the most right now.
Are you taking care of yourself?
I say that I am doing my best. I don't usually eat or sleep enough, but I am trying my hardest. Knowing that I have to keep my breast milk supply up, I do eat and drink frequently throughout the day. I read a lot and that helps get my mind off things.
I know it's hard to have
guarantees right now but do the doctors have any idea as to how all
these complications with being a micro-premie will affect Eagan in the
long run?
Yes and no. Currently he has absolutely NO brain bleed. This is incredible for being a 25-weeker and all of the traumas he has endured. A bleed could cause cerebral palsy and a host of other issues. We do know he has Chronic Lung Disease. This is probably one of his biggest issues. He will be at a very high risk for respiratory infections. What wouldn't really affect a term baby could hospitalize or kill Eagan. When he comes home, major precautions will be taken. I will most likely home-school my oldest for Pre-K so he is not bringing extra germs home to Eagan. It will seem extreme to some, but he has fought so hard that I will take no unnecessary risks with his health. He may have Retinopathy of Prematurity which could cause him to need glasses or be severely vision impaired. Swallowing will also be a big obstacle. He has had tubes in his throat for so long that he will struggle with this. He will most likely come home with a feeding tube.
How did Eagan respond to the antibiotics given to battle his Sepsis? Did they work, and is it gone?
He is still on the antibiotics. When you have as many openings and lines in your body as he does, you are at constant risk for infection. Right now, this seems to have cleared up.
How did you come up with his name?
Eagan's name means fiery or very mighty. I would say that fits him pretty well. My first two children have "E" names and we wanted to continue that theme. Eagan is also an Irish name. Given my red-haired heritage, it was in the top of the running. I bounced around a lot of names, but as I got further in the pregnancy, I knew Eagan would be Eagan. His middle names are Robert and Olis. Robert was my grandfather's name and I can't think of many men who were as strong as my World War II veteran grandfather who went in on one of the first waves of D-Day and lived to tell the story. He battled cancer multiple times and had a marriage most people would envy. Eagan is a fighter in his own right also. Olis is the middle name of my biological father. (I am adopted.) It was also his father's name. We wanted to pass this name down to one of our boys.
Also I know he gets morphine. For pain I assume? But what is causing him pain?
Initially, the Morphine was because he was extremely premature. He was also given a few other sedatives/pain relievers. Even stroking his hand like you would a full-term baby would cause him pain. Too much stimulation would make him drop his oxygen and heart-rate. Obviously, he needed his diaper changed or ventilator tubes adjusted so the Morphine was needed for basic baby care. Then, he has had so many surgeries and several incisions. The swelling also makes him very uncomfortable. Since he has been swollen more than twice his natural body weight, his whole body just hurt. It was also given to sedate him so he wouldn't fight the ventilator when he was on higher settings.
How are YOU doing?
Honestly, I am getting by day by day. Some days are harder than others. This is my new normal. Keeping busy and reading books helps a lot. I really haven't broken down or cried but one time in this whole adventure. I am sure I have so many built up emotions at this point that the dam will break, but probably not until he is doing better and I actually have time to sit down and think.
How are you babies at home handling this?
Surprisingly well. They look forward to seeing me but still have lots of fun at home with my family. They talk about Baby Eagan all the time and are very aware of what is going on.
What do you eat when you go out to eat with your family?
Anything that they do not serve in the hospital cafeteria. Absolutely no pizza, french fries, or sandwiches. I am beyond sick of hospital food so I thoroughly look forward to going out to eat. I usually order Dr. Pepper to drink because in the several vending machines in the hospital, there is absolutely no Dr. Pepper. Such a big issue :)
How does the gestaional age vs. real age work?
Eagan is technically 36 weeks. That is his adjusted age right now. When he is 12 months old, his adjusted age will be 8.5 months. This means developmentally, he is expected to be on track for an 8 month old at 12 months old.
Are the issues that are affecting Eagan common to micro premies?
Yes and no. Most of them are, like the tears in his intestines and PDA issues. Other things, like the frequent line issues and the CVL leak, are crazy rare and make Eagan just that much more special.
What does a day in the life of Eagan look like? And vice-versa, what does a day in the life if you look like?
Eagan gets hands-on care every 4 hours. This means a diaper change, dressing changes, re-positioned in the bed, etc. At midnight, he gets a bedding change and weighed. A pretty neat feature about his bed is they can weigh him in it. It has a scale, temperature monitoring, and X-ray capabilities built in. His surgeries are also done in his bed. He never leaves it. He gets a visit from a respiratory therapist every 4 hours to be suctioned and have his ventilator checked. We try to keep his bed closed as much as possible, but it frequently has to be opened for cares and changing out medicine lines. He gets several X-rays in a week along with frequent exams by his neonatologist, endocrinologist, wound/ostomy specialists, and surgeons.
My days consist of lots of pumping, reading, coffee and sitting at Eagan's bedside. Every time his bed is opened, I spend time with him. I talk to lots of doctors and nurses throughout the day.
One thing I wasn't entirely
clear about when reading through the blog were the underlying reasons
your pregnancy with him was so hard and why he was born premature in the
first place. I just figured it was all too personal to ask.
First, nothing is too personal. I will answer almost anything. Odds are, it could possibly help someone else at some point or maybe educate them about premature deliveries. I had hyperemesis gravidarum with all three pregnancies, but this time was the worst. I pretty much held nothing down, not even water. I was admitted several times because I had high ketones in my urine. This meant my body was essentially breaking down because I wasn't getting any nourishment. I had 3 PICC lines, lines that go in your arm and up close to your heart. These delivered Zofran for nausea and fluids for nourishment and hydration. I went into pre-term labor with Eagan several times, and finally, my water burst. All at once, all the fluid was gone. This put both of us at a very high risk for infection. We waited quite a while, but eventually we both showed signs of infection. I required a c-section because he was footling breech and his foot was literally in my cervix. There is no medical diagnosis as to why my water broke and why he came early. That is probably the most frustrating part.
Oh, and
less medical note, I'd love to know exactly how his name is pronounced.
:)
E-gan. Like Ethan but with a G instead. Hope that makes sense.
How far along were you when you found out you'd have a preemie?
About 18 weeks, I began having contractions. At that point, we were all pretty confident I wouldn't make it to term, but no one thought it would be quite so early.
How & when did you go
into labor? What medical interventions did they use to try to delay the
delivery? How did they decide on a c-section?
I went into labor the first time at 18 weeks and multiple times following this. At about 23 weeks, my water broke. They used Terburtaline shots, magnesium sulfate IV, Procardia, and Indocin to try to keep him in as long as possible. He was footling breech and we both showed signs of infection, so a section was the only option.
What were his first apgars?
1 minute - 4
5 minutes - 4
10 minutes - 8
How
did you feel when you first saw him?
The first time I saw him, he was so bundled up, I only noticed his nose. After 9 hours post-surgery, I was able to go see him. Fortunately, I knew what to expect. He looked much better than I thought he would. I thought he was beautiful and super cute, but I am a bit biased. I wasn't afraid of him and was ready to jump in and help with diaper changes as soon as they let me.
Did your body give you pre-term labor signs?
Sort of. I had contractions but that was nothing new. I didn't have a lot of the typical signs like backache. Some women get nauseous, but I was already constantly sick.
I
know as a mom you never stop fighting for your child, but do you ever feel like enough is enough with all the surgeries and
sticks?
Absolutely. Some days I feel like telling them just to leave him alone, but I know that they are helping him.
How do you feel about the medical staff? What do you do when you
feel like you know more than the nurse treating him?
I love them. We have the most amazing nurses. So far, we really haven't had any major issues. I don't ever feel like I know more than the nurse treating him, but I do know more about my baby. I will tell them if he is positioned in a way he doesn't like or let them know if I notice he is unusually uncomfortable, but nine times out of ten, they notice about the same time I do. They really ask for my input and let me help with a lot of his care.
How did you pick his
name?
I answered this above. :)
What would you do if you couldn't be at the hospital?
That honestly would be impossible. If I was sick I couldn't be there and risk giving something to him, but otherwise, nothing would stop me. Even post-surgery, I never took a day off.
Do they have an idea of his actual weight vs swelling weight?
His weight due to swelling is currently 3 lb 15 oz. His actual weight is 3 lb 10 oz as best they can guess.
What are the biggest goals/challenges for Eagan now?
Short term goals are getting off the ventilator and tolerating feeds and re-feeds. Long-term, learning to eat.
How long is it gonna take to clear the fluid from his lungs?
As the swelling goes down, the fluid in his lungs will also.
Is the tear in upper bowel still there or is it healed? When should be able to have breastmilk again?
The tear in the duodenum is healed. The jejunum tear was removed and his ends of his intestines are on the outside of his abdomen. Several weeks from now, those will be reconnected. He actually started back of feedings again today.
How do they do an eye exam on a baby?
It looks awful. They dilate and numb his eyes in the morning. Mid-afternoon, the ophthalmologist comes by. He opens Eagan's eyes with a metal spreading tool and examines the blood vessels leading to the retina using special lights. Eagan hates this process and I don't blame him.
Why do you have preemies? All 3 were early, do you have a medical condition or was it just luck of the draw?
There is no medical reason why. With Eagan, I was told there was no reason why he would come early. The obstetrician did not believe me when I informed them I was contracting. I promptly switched OBs but you can't exactly reverse the damage that was done by waiting to treat the issues.
How old are you? Only because I remember the post about you being
younger than we thought, but I don't remember ever actually seeing how
old you are.
22. Yes, I know I am a "baby" but age really has no reflection on being a mom in my opinion. I actually just turned 22 a few days ago.
How freaking cute is Eagan? That's not really a question, but I swear that kid gets cuter every freaking day.
I agree, but I am his mom so he is obviously the cutest baby ever.
Does the blog itself help you
to keep calm and keep your faith that Eagan will be ok?
Yes. The blog allows me to process the day and look back at how much progress he has made. All I have to do is scroll to Day 30 something and realize how far we have come.
Is it hard to
make the doctors and nurses listen to your concerns since you already
have a wealth of knowledge of the NICU? And I agree he does
get cuter by the day:) His pictures always make me smile!!
No. The doctors and nurses frequently ask me how I feel about things, how his color looks, what his pain level is like, and multiple other things throughout the day. It helps me feel like his mom and that I am actually doing something for him.
Did you work prior to your
babies? How do you juggle being a mom of three and being at the hospital
most days, all day? What does your schedule look like?
I waited tables through high school and college. I went to college for Accounting, but will be going back when the kids start school and changing my major. My schedule is answered above. :)
Since he only has one IV now, do they plan to try to get another line started or will that one IV be enough?
He has the femoral line, but it has two ends for medications. Right now, this seems to be enough. Hopefully, he will decide he likes this one and keep it a little longer.
Is it
hard on you seeing all these other babies in our group be born and go
home when your handsome man is fighting so hard every day?
I thought it would be, but it hasn't been that hard for me. I am excited to see all our July babies do so well even the ones that need a few extra days to grow in the NICU.
Does he...because he is a
micro preemie...have developmental milestones that are expected to be
reached at a certain age as well?
Yes. He just started sucking his fingers and that is actually early since he is not full-term yet. Once we make it to his due date, he will be expected to do things around the time of his adjusted age. It would be realistic for him to roll over at 7 months. All children are different so it could be early or late.
How are immunizations and vaccines going to be handled with his prematurity. Does he even get his vaccines?
He will get vaccines according to his adjusted age. Once he is full-term, he will get vaccines on a schedule starting from his due date. Basically, he will be almost 6 months old when he gets his 2 month vaccines. Vaccines are going to be super important for him because his immune system will not be up to par with an average baby's.
What does your daily
schedule look like? How do you juggle life right now and what is
your biggest support?
My schedule is above. If I were juggling, I would drop the balls a lot. I am pretty much doing the best I can for the situation. My biggest support is my family to help with the kids. Beyond my family, I have some pretty amazing mom friends on Facebook that support me 24/7.
Is there anything that you want people
around you to know or do to help make life less hectic and more
"normal"?
First, no matter how many kids you raise, a micro-preemie is a whole new experience. Second, don't try to compare him to another kid unless that baby is a 25 weeker with bowel perforations and a host of other issues. I'm not sure there is much anyone can do to make life more normal for us, but I am trying. Both older kids have birthdays in the next two months and I still have no idea what I am doing for them, but they are young and would be happy with anything.
I've been wanting to send you
something, but I have no idea what would be good. What are the things
that parents need/want/appreciate most while their baby is in the NICU?
What do you need, and where can we send things?
Anything anyone wants to get Eagan will definitely be used since I haven't actually shopped for him yet. Beanie babies, small stuffed animals, sleepers, onesies, blankets etc. are all great. Little lovey blankets are also great for him to snuggle with. For me, gift cards for my Nook, coffee, gas cards etc. are always great. Please don't ever feel obligated to get us anything as thoughts and prayers are more than enough but this question has been asked so often, I will answer it. The best place to send things is my home address since Eagan's room changes often. Email me at sarahrstokes@gmail.com and I will send it to you.
Weight
3 lb 15 oz
Breathing
Eagan is on the
conventional ventilator. His settings are down to 29 breaths per minute. His
oxygen rate is around 21%. The pressure
that the
ventilator
puts in his lungs is at 21. Also, he has fluid in his lungs so he is
getting Atrovent breathing treatments every six hours.
Vein and Artery Access
Eagan has a femoral line in his upper thigh.
Medications
Fortaz, an antibiotic that stops the growth of bacteria has been added.
An antibiotic, Oxicillin is being given every six hours.
He is now only on Morphine every 6
hours as needed. Right now he is only getting it about once a day!!!
Caffeine has been started as a diuretic to try to speed up his kidney function.
He is also on Diflucan as a preventative measure.
He is also on Zantac to help calm his tummy's acid levels.
Lasix, a diuretic, will be given every 4 hours along with Albumen, a protein that makes up the majority of our blood.
He is back on Synthroid for low thyroid.
Nutrition
Feedings were started again today. He is getting 2 cc's of breast milk continuously every hour. The output into his ostomy bag is being put through a tube into the other side of his intestines, called re-feeding. He is getting TPN and lipids.
Transfusions
June 23 - Transfusion #29
Upcoming Tests
Another eye exam to check on the severity of his retinopathy of prematurity will be Thursday.
Cranial ultrasound at 36 weeks gestation.
