The Terrible, Horrible, No Good, Very Bad, Hospital Stay

What a week it has been! There are naughty 4 letter words I could use to describe my week, but the only horrible awful word that comes to mind has 6 letters! REFLUX! It has taken over our lives. Starting all the way back in March with Alyx and Luci to now with Dot reflux has caused us more trouble and stress than anything else.  Dot has always been a spitter and had reflux even when in the NICU.  However, about a week after coming home, her reflux seemed to get much worse. She began having more and larger vomiting episodes. And then she started choking on her spit ups.  Each spit up episode was so hard to watch. She would cough and gag and then try to get the spit out while continue to breath, gag, and choke.  She would do this 5-6 times a day.  It had really started to take a toll on her breathing. She looked like she was working so much harder to breathe, her chest was rising up and down much faster and harder. Her diaphram was showing signs of retraction.  All this combined to make Dot's home health nurse want her to have a chest x-ray to make sure she hasn't aspirated anything into her lungs. So we went to the ER.  While in the ER they gave her more oxygen and tested her for a respiratory infection. They also did a chest x-ray. The x-ray showed no aspiration and on the good news side her lungs had gotten a little better not worse. No infection was found either, but they still wanted to keep her for observation due to her work of breathing. They also wanted her newborn doctor and the GI doctors to see her to try to help her reflux and respiratory issues.  We went into the ER around 11 and around 6 went up to the floor to her room.  This is where our entire stay started to fall apart.  

   

Nutrition is extremely important for Dot. She needs every calorie to help her gain weight, especially when she vomits most of it.  I brought one feed with me, but for the 6 I knew we would need to get that together.  Her food is a little complicated- a mix of breastmilk and formula- but I said something to our nurse at 5 to help us start getting it together.  We traveled to our room and made sure to ask about the feed. They took down the mix and amounts of everything and said they would get it together. Mark and I decided to get something to eat while she was sleeping and figured she would be eating within the next few minutes, so we were very surprised to come back around 7:30 and she still had NOT been fed.   I went to find out what had happened and was told they were working on finding the formula. Mark sat he back up in her crib (she had scooted sideways) and in the process accidently disconnected her monitor.  Now her monitor sat unconnected for almost 20 minutes with no one coming to check on her.  Now mind you I know the monitor goes off and on like crazy but when a baby is admitted for respiratory distress looking at the monitors should be closely watched.  Still I figured they were a little flustered and unsure of the formula mix (it is pretty complicated), so I cut the nurses some slack.  Finally Dot ate 8:00 pm. Now this had set all her other feeds off time, which would also affect her reflux since her stomach had 6 hours to empty and would not have as much food there as normal.  She ended up only spitting up 3 times the entire stay and none of them were anywhere close to what we experience at home.  

Due to our concern of monitoring her, (it was much different from the NICU) I decided to stay with her overnight.  Overnight everything went okay, nothing much happened. 

And then morning came...about 9 in the morning the charge nurse comes in and says they would be bringing in a 15 year old boy in to room with Dot. I instantly got upset and said no way! I am a grown woman with a premie baby, who had just been released from a neonatal ICU with immature lung development. I am also pumping and the curtain does not provide privacy for me to do this.  My baby would be unmonitored (other then from her maching and vital checks every 4 hours and visits from her nurse) with a teenage boy.  And on top of that if she had to stay the night again, I would not be allowed to stay with her.  I said if that was the case, we would need to be discharged immediately or transferred to a different hospital.  So the nurse said she would see what could be done.  I knew from the ER the rooms were not private (not exactly the happiest of news), but I thought they would room babies with babies (or of a similar age). The nurse comes back and says our only option is to move an adult girl (not sure what age that meant but at least a teenager) into the room. Again I was not happy with the situation and said I would not be comfortable with this situation.  The nurse again walks out to see what would happen with the situation. Little did I know 20 minutes later, they are wheeling in the adult girl.  No options given, so again I asked to be discharged. I am just outraged that the hospital would allow this type of rooming situation for a preemie who has  been very sick. 

I agreed to stay for the consult with the doctors with the agreement that we could be discharged that day. The day seemed to pass by slowly with Dot pretty much sleeping most of the time. Although, again I had to remind the nurse to feed my daughter because they were 30 minutes late and still had not come in to feed her. So after waiting most of the day for the doctors, GI finally came and talked with us.  We decided to start meds and adjust her feed amounts. The newborn doctors never even came to see her, kind of disappointed. Based on her chest x-ray, they said they would see her on August 11th and advised against starting meds to treat her reflux because of potential side effects. Finally around 5 in the evening we were discharged and released. I was so glad to leave the hospital after the last 24 hours of mess.

Hopefully with meds and new feeding schedule something will get better. As soon as we got home and started her next feed she was back to vomiting (3 different times just in that feed). She is still having heavy breathing and retraction but because everything checked out fine all we can do is wait and hope it gets better. And if she gets worse know that we won't be returning to that hospital. This little girl has been through so much already, I just want her to get better and be able to enjoy being home with her sisters. She is such a fighter and most definitely my hero!

Bringing the Baby Home- IT JUST GOT REAL!

So Dot has been home for a little over a week now. I can still remember the day of her surgery the doctor telling us as long as everything continues to go well, she will be able to go home in a couple of weeks. I couldn't believe we were finally here! For awhile I refused to let myself believe it. Then as we got closer I felt excitement and happiness to be able to finally have our family back together.  Then as the day got even closer, some new unexpected emotions set in.  Emotions that no one has ever talked about when you have a baby in the NICU.

The first strange and overwhelming emotion I felt was fear. I realized I was absolutely terrified to bring my little miracle home. For 5 1/2 months my baby had been cared for and taken care of by nurses and doctors.  I was NOT a nurse or a doctor.  What if she stopped breathing? What if her feeding tube falls out?  What if she refuses to ever take a bottle?  What if she can't handle being home?  All these questions running through my head making me more and more afraid something would go wrong, and maybe it wasn't time for Dot to come home just yet. At least not until I had completed nursing school...

Because of all the fear, my anxiety was through the roof.  When it comes to unknown situations, I am a worrier. I constantly worry about how the situation might play out and think of all possible outcomes so that I can prepare.  But I really didn't know how to prepare for this.  At home, we had a schedule worked out pretty well.  How would Dot fit into this schedule?  Could I do it all? I was anxious how Dot would react to being around her sisters and the home environment all the time.  I worried it would all be too much for her at once.  Her sisters are movin and groovin, which is great, but what if they accidentally hurt Dot?  On the outside I was calm and excited, but inside I was a knotted up mess.

I felt so sad and guilty inside because I felt like I should be more excited about my last baby coming home.  I wanted to be as excited as I looked. Don't get me wrong, I was happy and excited to have her home, but I just didn't know if I was prepared to handle it all. I was terrified it would all fall apart if I couldn't handle it, and my babies would be the ones to suffer.  With Alyx and Luci I knew their likes and dislikes, what makes them giggle and cry, when they are scared or angry.  I realized with Dot, the nurses knew these things better than I did. I felt guilty because I hadn't bonded with my baby to know these things yet.  I felt like the worst mother ever, and that feeling is awful.

The first night she was home I didn't sleep much at all. Every little sound and beep woke me up and had me running to her room to check her. A few times I went to her room just to watch her breathing. Even though I knew she had a monitor to tell me everything was ok, I just needed to see for myself.  The first day was tough. Working out a schedule was most important so not knowing what Dot's schedule would be was a little tricky.  Thank goodness I had my husband to lean on that day. Even with 2 of us there, it was still a little hectic. Mark and I went through everything together, setting up her feeds, hooking up her tube, putting on her sensor, checking her monitors,etc. By the end of the day, with my hubby's help, I felt a little more confident.

I was definitely worried about the first day by myself, but as it turns out, I was able to manage everything pretty well. Now here's the silver lining to my story...it's not all bad.  Once Dot was home, I could see how much happier she was now. She giggles and smiles all the time.  She wants to be on the floor with her sisters.  She loves her room that we set up for her.   And best of all, I have had some major bonding time with my baby.  I no longer have to schedule a time to see her.  I can be with her and love on her whenever I want.  I can tell you without a doubt what makes my baby happy and sad, what makes her giggle and cry, what she is scared of and what makes her angry.  Being home has been the best thing for Dorothy Jo.  She has even started taking the bottle a little at a time.

I wanted to share this because just in case someone else ever has to go through the NICU experience (I don't wish that for anyone.), know that you are not alone in these feelings.  And if you know someone going through the NICU roller coaster, know that they could be feeling the same way.

I will say that I can now fully 100% say I am so glad to be home with all my babies, and I know I can handle this.  All my fears, doubt, anxiety, and guilt have faded away.  I just feel love for my family (and some exhaustion)!

1 day at a time...girls' update

So another busy week comes to a close!  Here is an update on the girls!

Alyx and Luci-  So these girls have gone from being the big sisters at birth to almost the little sisters (Dorothy Jo almost took her over).  They got their 4 month shots and check up at the end of May.  They did great and there were no effects after the shots, other than Luci being a little cranky that night.  They took it like champs!  We did notice that they hadn't gained much weight since the last weight check up last month (less than a pound gained).  This wasn't surprising.  The past month they had been extremely crabby and spitting like crazy.  I am not talking normal baby spit either. I am talking puking half their bottles.  No matter what we tried, burping more frequently, feeding upright, keeping upright after feeds, etc. Nothing seemed to help.  This reflux was winning and it was so frustrating to see my babies in pain and not being able to help.  So our pediatrician referred us to see a GI specialist.  While waiting for the GI appointment we decided to make a few changes on our own.  I gave up dairy in my diet to see if that was causing spit ups (I MISS MY ICE CREAM!!!), we changed nipple sizes on their bottle, and we started feeding oatmeal.  The changing of the nipple and dairy seemed to help, but still waiting to see if the dairy helps but seems to be good so far.  Jury is still out on the feeding oatmeal.  At first the girls seemed to be interested but after a few days they just were not interested in eating oatmeal anymore. Went to the GI specialist and now we are on a new medication (that they can't spit up like the last one), we are thickening bottles with oatmeal, and will be going for an x-ray next week to make sure nothing is wrong with their upper GI tract. We also found out that the changes we have made have been doing some good, because in less than 3 weeks the girls had gained almost a whole pound! Alyx weighs 10.2 pounds and Luci weighed 10 pounds even.

Other than trouble with feeding, the girls seemed to be doing great!  They are rolling all over the place and are so active it's hard to keep them still.  They are full of smiles and giggles, and it has been so fun watching them grown and learn.  Mark has decided to teach the girls some signs in hopes that we can teach the girls to communicate with us before they are talking.  It is really sweet to watch him.  He is fully committed to teaching the girls these signs.  We have started with Mom, Dad, and eat.  The girls have also developed a love for lights and music.  They love the light up turtle that plays music.  We play with it almost everyday.  They also love cartoons! I try to limit the amount of time, but we do watch this youtube channel they love called Baby Bum!  It has some very cute songs and nursery rhymes.  I can't believe my summer vacation is almost halfway over!


Dorothy- So big changes coming for my little squirrel! WIth her oxygen needs coming down, she has been working on eating from a bottle. This has been a slow and tough process for her.  She is having trouble getting the concept of swallowing while still being able to breathe.  She gets very worked up thinking she can't breathe and then chokes on the bottle.  Some days she will take a little bit other days she won't even let the bottle near her mouth.  Because feeding is her last and large hurdle we had to decide on a more long term solution.  After discussing out options we decided the best path for Dot is to have a G-tube or G-button put in.  So on Tuesday Dot will have a small operation to insert a more permanent tube in her stomach so that she can eat from a pump while still learning to eat at home with a therapist.  It is scary to think about my 5 month old baby undergoing surgery, but I know this will be a way for her to be home with all of us.  The doctors assured us that this is a very routine and safe procedure so we will just hope and pray that all goes well.  As a parent you just want the best for your baby and want to know that you are making the best decision.
 
So other than the big news of the surgery Dot is coming along great! She had an MRI yesterday and everything is normal. No abnormalities from being born premature.   I even got a picture of my little eskimo baby before she went to the MRI. She was not happy about being swaddled up so tight.  She is getting stronger with her head control and can sit up with support.  She has also become such a happy baby and a social butterfly!  She will coo at the nurses and giggle.  My favorite time is when we sing together.  Music is Dot's favorite, so when I visit I will put on music and we will sing together.  Her favorite music?  The oldies! Especially the beach boys.  She calms and gets immediately happy when her cd is turned on.

So even with this scary time coming up, we know this means she is close to coming home.  We can't wait to have us all together and hopefully within a few weeks we will be all together.

Alyx eating oatmeal.

Luci and Alyx enjoying blanket time.

Alyx and Luci

Alyx napping

Alyx napping

Luci after bathtime

Luci after food time

Mommy and Dot time

Getting ready to go to MRI..we are NOT happy

Happy that MRI is over!

Really mom?? Do my pants need to be this high?

I think I can... I think I can... One day at a time Mommy's Story

So what a crazy couple of weeks!  You'd think since school has been out my life would have gotten a little easier, but then again I do have triplet GIRLS! I should know life will always be an adventure.  So for the update I am going to write about each person individually.  For the sake and understanding of the week I am going to begin with me.

Mommy-  I had started noticing a few weeks ago with all of the stress of going back to work, ending the school year, reflux woes (I will explain in the girls' section), insurance dealings (explanation below), and schedule of going back and forth to the nicu all while still trying to be a mommy and wife; I was beginning to feel a little rundown and tired.  Well...it all came to a head this week.  Ending the school year went pretty well, thanks to the support of family and my husband, I felt pretty confident the whole way through.
      Since giving birth to the girls I have been using a hospital grade breast pump to help feed the girls, and I have been able to exclusively breastfeed all 3 these past 4 1/2 months with no supplementation.  I am extremely proud and want to keep going until they are 1 year at least at this point!  However this hospital grade pump has to come from a medical supply company- no problem- my lactation consultant from the hospital help set it up with insurance and the medical supply company.  Received my pump and all is great! Fast forward to May, medical supply company is mad because the insurance will not pay for all the months and is demanding that I return the pump or pay the rental fee.  Umm..hello? How do I feed my babies without this pump?  Man from the medical supply company does not care and wants the pump returned anyway. After 2 weeks of talking and mediating between the insurance, medical supply company (who is not a very nice man to speak with), and my lactation consultant, we were able to reapprove the pump through August.  Until last week, the nasty man from the medical supply company calls back to demand that I return the pump immediately as the insurance is denying my claim.  Again he is almost screaming at me, as I am pretty much begging for some time to solve this so that I can continue to pump enough milk to feed the girls.  Anyway it got so bad I ended up with my very first stress headache.  It was so bad I couldn't see straight.  We are still in the process of figuring this mess out so pray that it works out in our favor!  So Monday night I start noticing pain in my chest and that I might have some clogs. It happens when feeding multiple babies and I can usually work them out.  Late Monday night I woke up shivering and running a fever with extreme pain everywhere, especially the right side of my chest.  It got so bad I couldn't give the girls their first bottle that morning.  For the next 2 days I ran fevers up to 104 degrees.  I was taking ibprophen, tylenol, and an antibiotic prescribed by my doctor.  Yep...for those of you who have knowledge of nursing/pumping...I had gotten a severe case of mastitis.  I had 2 minor cases before but cleared up within 24 hours with no problem and no antibiotic needed.  Not this time!  I got so sick we even took a little trip to the ER to see if IV antibiotics would help.  Thankfully they doubled the dosage of antibiotic and increased pain meds and said give it 24 more hours.  By Thursday morning I started to feed my temperature coming down, and feel more normal.  I felt like I could actually get out of bed without passing out.  And maybe I could eat some food too.  By late morning my fever was normal.  For those who don't know about mastitis, it is one of the most painful things that can happen to a nursing mom.  It is when the milk ducts clogs and then cause an infection which can spread to your blood if not treated or unclogged immediately.  Many times mastitis causes a drop in milk supply too.  The other 2 times I got mastitis I was able to clear the clogs and recover my supply within a day or two.  This time my supply has drastically dropped.  I went from making 9-14 oz each pump to now make 5-6 oz.  It can really be frustrating and discouraging to see after being able to pump so well before, and now not knowing if you can recover your supply back.  I am staying positive and will do what I can to help get back to where I was before.  Thankfully, I do have a supply built up in my freezer that will help up get through..although there is a pitfall to that as well (explain later haha).  So being down for 2 days what happened to the babies???? Ta-da! Family to the rescue! Hubby stepped up and did morning feeds and stayed with my in the morning until my parents came. My parents helped take care of the girls during the day and into the evening both days. I cannot ever thank them enough for all the help that they have given to us.  Without them I would be lost for sure!  They do so much for us and I will always continue to thank them and let them know how grateful we are for their help and support!  We also had help from our other grandparents in the evening to watch the girls and from their uncle who watched Alyx and Luci by himself for an hour! He was and should be proud! That is a big undertaking for anyone!
     So on top of the all of this we have been dealing with the dreaded reflux with the girls.  We have tried a couple different meds with no success among other interventions that we are trying from home.  We finally have a GI appointment but while we are waiting to go, it was suggested by others that I try to remove dairy from my diet to see if that makes a difference.  So for the past week and a half I have stayed away from all dairy.  We have been feeding the girls purely dairy free milk to see if this will help with their massive spit ups.  We have definitely seen a reduction in spits so I will keep it up for now.  This is not easy when ice cream is a daily food group for you!! But for my babies I will do with a smile on my face.  Now... this has been a problem the last few days because of the mastitis. With my supply down I am not producing enough to feed the girls so we are having to use the frozen supply...which has MILK in it!!! So frustrating.
    Anywho hopefully now life will get back on track.  Exciting weekend planned..first zoo trip, first birthday party outing, and visiting sissy at the hospital.  I will update on the girls soon as well!

10 Signs You Have Spent Time At A NICU

1. The secretaries know you by your voice.

I call up to the nicu on the parent line a few times each day and night to check on Dot. One night I called and the Secretary, whom I really enjoy having a nighttime conversation with says to me "How you doin' Mrs. Mitchell, I recognized your voice before you even said the room number. I told you I would learn your voice eventually." Oh Lord I need my discharge papers...STAT!

2. You have celebrated multiple holidays within the 4 walls and florescent lighting of a hospital.

So we have now seen Valentine's day, Easter, Mother's day, Memorial day, and are getting ready to see Father's day and 4th of July. 

3. You know terms like Apnea, NBP, CPAP, KCAL, input/output, desat, leads, CBC, etc.

Letters of the alphabet combine to form what seems like nonsense but is really common nicu lingo and I no longer need my nicu dictionary to understand them (and yes I have one that they gave us).

4. Eating out/running through a drive through used to be like YEAH no cooking and now you just long for a home cooked meal at your HOME!

I used to love Friday and Saturday nights cause it meant no cooking...now that's pretty much an every night occurance that we visit the nicu. After so many times fast food really begins to suck.

5. The top Wi-Fi network on your phone is the hospital network.

Yes I want to sign in... Yes I will accept your terms of agreement...

6. The wires and tubes become no big deal.

We used to be so nervous we would pull or misplace a tube or wire, but now I think I might just be able to have a jumpstart if I ever decided to go to nursing school. You know you're good when someone asks you how long you have worked there..ummm.

7. Your child has "earned" some cool baby equipment.

We now have a mobile, a light up fish toy, a CD player, a swing, and a mamaroo. We are living the good life...ha ha!

8. You have seen too many neighbors come and go and your child is the "queen bee" of her area.

So our nicu is divided into gardens. We are in Spring garden. There are 12 rooms. Our family has been in 5 of them. I think we should get an award! But really she is the social butterfly of the garden saying hello to everyone from her swing as they pass by her door. We will see a new nametag with a new baby and then after a little while, no more baby just a "clean" sign on the door cause the baby went home. And then by the next day, at the latest...new nametag and new baby. The names I can remember- Hannah (our nicu buddy), Greyson, Asher, Clark, Jordan, Faith, Hope, Remington, Emma, Ethan, and more I could add if I could remember.

9. Your child has reached the top weight on the weight conversion chart.

We started on one end and now we are to the other. She has gained almost 8 pounds since birth while in the nicu. Makes you realize how far my little fighter has come!

10. You are bringing up the next size in clothing cause she outgrew the last size.

We started with preemie when she was a couple months old (she wasn't even big enough for clothes until that point). Then she went to newborn, and just this week I brought up 0-3 months for my chunky monkey.

The pictures below are Alyx, Luci, and myself from day 1 until the present. It's amazing to see the progress of my babies in photos!

               
 

School's Out For Summer!

What a busy week! Wrapping up the last week of school and the girls have kept me busy! Here is an update on each of the girls as we had 4 month check ups for Alyx and Luci on Wednesday. Alyx is now 9 lbs 2 oz. She is 22 in. long. Luci weighs 9 lbs 3 oz. and is 22.75 in. long. Both girls did not gain enough weight this month so their pediatrician wants us to add some solids in their diet. So...oatmeal it is. Girls did okay and were hilarious to watch eat their first meal by spoon. Their doctor thinks the solids will add extra calories and help with their spitting up so much  of their bottle during feedings. On a great note the girls are meeting and surpassing all their age milestones for a 4 month old. They can roll over from front to back and back to front! They are grasping things and even holding into them. They also started to notice and giggle with each other and us! They will coo at us and almost coo at us like they are having a real conversation. It is so neat to see! I have been trying to teach them to say "mama" but we are not quite there yet. 😉

Dorothy has been doing wonderful as well. She is completely off cpap and they are lowering her high flow levels too. Her oxygen levels are now in the 30% range instead of 40%. Her weight is up to 8 lbs 7 oz. She also is cooing and will talk to you. She has also started learning to drink by bottle. This will be a long process for her learning to drink from a bottle, but she will get there. She is doing really well these days! We have also discovered she loves oldies! Especially the beach boys! We listen to it every night. We are ready for her to be home more than ever, and maybe our prayers will be granted this month!

3 WHAT?!?!

I don't know if I have shared the story of,how our 3 girls came to be 3 girls. Other than the science of how it happened of course! Being our first babies everyone was so excited to find out the sex of our babies. So we were told we would possibly be able to see at 16 weeks. So in we go at 16 weeks excited to find out! Dinner was planned with our family for the big reveal. The ultrasound tech looked at baby a and b (Alyx and Luci) and said it looked like a boy and showed us what she thought was boy parts. Then she looked at baby c (Dot) and said definitely looking like a girl. Now even though it was still early we went ahead and revealed 2 boys 1 girl! Yeah! Hubby was relieved having 3 girls scared the daylights out of him, and everyone who knows him, family and friends, told him 3 girls it would be. 4 weeks later the all important 20 week ultrasound (see previous post) this ultrasound tech informed us baby a and b were not boys but girls! Must have been the cord in the last ultrasound. We were shocked to say the least. And baby c, having no fluid, was now unknown. They weren't able to see anything with any fluid. So now we were having at least 2 girls possibly 3. Hubby is now in shock and trying to picture how he is going to raise girls when the prospect scares him. It was really so cute, worrying about boys chasing after his girls before they were even born.  Now to break the news to everyone that it is now 2 maybe 3 girls.  After the initial shock and realizing he would be an amazing dad to our 2 or 3 girls, he was so excited. We immediately bought matching dresses and cute little bows to celebrate! 2 weeks before the girls were born they confirmed yes it would be all 3 girls. I was afraid not having a boy would disappoint Mark. But when I looked in his eyes there was only love for  his 3 baby girls. And the love in his eyes has grown each and everyday. And he is an amazing dad who has taken on fatherhood to his 3 baby girls with tender loving care. We are the 4 luckiest GIRLS that totally outnumber daddy now!