ROP

What is Retinopathy of Prematurity?

“Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness. ROP was first diagnosed in 1942.”

Because Adeline was born at 29 weeks of gestation at 2.9 pounds she has to get her eyes checked every 2-3 weeks for signs of ROP. This started way back when she was still in the NICU. Her most recent appointment was this past Tuesday. It is actually a really awful thing to watch her go through. We arrive for her appointment at 8:30 am where they promptly bring her to the back to put multiple drops into each eye and then have us wait usually almost an hour to make sure her eyes are dilated and numb. Then by 9:30 am the doctor comes in and places metal eye braces in her eyes to hold them opened and proceeds to look into the back of her eyes while using some metal stick to poke around at her eyes all while she is screaming. It’s really awful to have to sit through and watch, I just feel so helpless. After that is over, Adeline immediately stops crying and goes back to being happy, thankfully, while the doctor goes over what he observed. For this visit he said there is no new growth but that her left eye is definitely the stronger eye. In her right eye he has discovered that several blood clots have formed in the back of her eye. He said this is something to watch because either they will reabsorb themselves and go away or she will get more blood clots forming and it could be an early sign of other serious eye problems. Just great :/ my poor baby. So we are scheduled to return in 3 weeks and check on how things are going. I pray that these blood clots resolve themselves by then or at least there aren’t any new ones growing. All we can do is watch and wait.

Preparing for the Next One

AC and I aren’t jumping into having baby #2 just yet, but I do want to know that when we do decide that we are ready that my body will be ready as well. I was/am really still hopeful that having this baby has altered my body and fixed some of the PCOS issues…if possible. I am probably being very delusional but we have a friend who is due in December and was lactose intolerant before she was pregnant but it has completely went away ever since! Now she drinks milk like it’s going out of style, it’s amazing! I know these are very different circumstances but you never know.

Things have already been a little better with my PCOS since having a baby. My cycle, for once in my life, has actually come last month when the app that I have predicted it would and it only lasted a week. And then came again when it was supposed to this month and has just ended after 5 days! This in itself is a miracle for me. My period has always skipped June through August (which was awesome) but then when it came back it would be heavy and laResized_20170921_111703st for an entire month, sometimes two! That was unbearable. So with that said, I am really hoping these last 2 months have been a sign that something has corrected itself in me and maybe when AC and I want to go for baby #2, it’ll just happen. A girl can dream anyway.

Although, I hate to admit this but I did use an ovulation prediction kit last month around when I should have been ovulating and it was negative. But I only tested one day, so I know that’s ridiculous to just assume that, yet again, I still don’t ovulate on my own and never will. So next week I plan on correctly testing for multiple days and even using the digital tests instead of the cheapy strips and hope for the best! If not I guess I’ll be back on Clomid when the time is right. Which really isn’t that horrible as long as I don’t have to pair it with Metformin. AC is already wanting baby #2 to be honest! We are 30 and 31 years old and if we are going to have more struggles, time is ticking fast. Plus, we want a sibling close in age with Adeline but I think we will definitely still wait a few more months at least before really TTC. But if all goes well, I’ll be ready for when we do.

Metformin and Breastfeeding?!

It seems like no matter where I turn, Metformin follows me. Right after I had given birth to my 2 and a half months early premie, a lactation specialist came in to talk to me. She informed me that thanks to PCOS, once again, if my milk supply didn’t come in enough that I might want to try going back on Metformin! To my horror it apparently helps you to produce more milk. I could not believe that every turn in life seemed to include me being back on Metformin yet again. And lo and behold, once I did start having issues making enough milk on my own, I went to Doctor C and asked her if going back on Metformin was worth a last ditch effort before throwing in the towel. Dr. C said it does work for some and if I could tolerate the side effects once more, that I should see if it would work for me. I feel a little ashamed admitting this but I only went back on it for 2 days before quitting. I just could not take the level of how much it upset my stomach and juggle that with taking care of my infant daughter all alone, who had just been released from the hospital. Sorry I can’t give a more informed opinion of if it in fact would have worked for me or not. But I just wanted to post a warning to all ladies with PCOS, Metformin is never too far away! :O

Months 1, 2, & 3

Adeline’s 1st month was celebrated in the Special Care Nursery. She was still on a feeding tube through her nose and an oxygen tube taped to her face. She was also on caffeine because she had so many bradycardia (bradys) every single day. Some days it was very hard to hold her and her monitor alarm would constantly go off back to back signalling her heart-rate dropping to unsafe levels. It can be terrifying, but as the nurses told me, it’s better her doing that in your arms than alone in her isolette because she is going to do it either way. She also had to have 2 blood transfusions to see if that would stop her frequent bradys, but they were fruitless. She just needed to take her time and grow out of them.

There were many leaps in improvement my the middle of her first month. July 12th Adeline was finally able to be taken off of the oxygen tube. The doctors decided that she could breath just fine even though she continued to have daily brady events but most were self recovered. Only occasionally did a nurse need to intervene and pat her back or stimulate her to get her heart rate back up to safe levels. By July 18th she was finally off of the feeding tube as well and AC and I were finally allowed to start bottle feeding her all of the milk I was pumping. Unfortunately after the first few weeks after she was born I stopped producing enough milk so she also started getting formula every other feeding and then breast milk less and less from there. Thanks PCOS. Have any else of you experienced your milk supply dropping out like that? Towards the end of month 2 I was only producing enough milk collectively to give her about one full bottle a day and all of the rest of her feeding be a high caloric formula. On July 18th, Adeline was also moved to an open crib, no more isolette and having to reach into 2 arm holes in a plastic container to touch my baby! All of these things kind of fell into place for her at the same time, which is what the nurses said would happen.

By month 2 AC and I were becoming restless with having our baby still in the NICU even though she was doing so well being in an open crib and no tubes in her face but those pesky bradys did not let up and she would still have at least one event a day. Thankfully again, they were self recovered, which is something the nurses weren’t too worried about because even full term babies have breathing/heart episodes that you wouldn’t know about unless they were hooked up to a monitor like ours was. Adeline was then but on an ALTE watch where she needed to go 5 days consecutively without having a brady event that needed stimulation by a nurse. It was so discouraging to get to day 3 over and over again only to have her have a brady over night that needed stimming and to see her counter had started back to day zero. Finally, August 9th she had made it to the end of her 5 days and we were able to bring her home for the very 1st time since she was born on June 5th! I was so incredible happy but also terrified that she would come home only to have another brady without us knowing and lose her. The only way he survived was buy purchasing an Owlet. It is $300 but worth every single penny if you have a baby that was in the nicu with bradycardia and apnia. Thankfully they have a payment plan where you pay $50 a month for 3 months. I highly recommend this product and no I am not being paid to say so. But I would truthfully not be able to sleep at night without it on her.

Month 3 was the very first month that we got to celebrate at home! She is doing so well. She is now 6 pounds 5 oz and is finally gaining enough weight to not have to go back to the doctors every 2 weeks for a weight check. She isn’t due back now until her 4 month checkup and shots! She is such a happy and relaxed baby, it is a huge blessing. She gets feed every 3 hours, sometimes 2 and half depending on her. Occasionally, she is starting to sleep through one feeding at night, which I am grateful for so that I can get a little more sleep. She also has started sucking her thumb to help self sooth if she has dropped her pacifier. She has rolled from her back to her belly once and from her belly to her back once as well. We are so proud of her and blessed to have her home.

I just started back to work, which has been hard but my mom and AC’s mom are rotating watching her each week for this month and then starting in October we will have to put her in daycare 😦 But I’ll have that mess for another time.

 

Early Arrival

I have been trying to write this post for over 2 months now but life gets in the way. I don’t even know where to begin. My baby was due August 20th but decided that she was ready to meet the world June 5th and life has been a whirl wind ever since…

The Weekend of June 3rd

My sister and her friend came over to my house for the weekend since Saturday, June 3rd was her 28th birthday. I live 40 min from the beach and we all thought it would be fun to go there for it. So they arrived late Friday night and we all just crashed, with plans to get up early Saturday and start the birthday celebrations. Saturday we headed to the Botanical Gardens and walked all around there for several miles. Towards the end of it I was really tired as I was on my very last day of 28 weeks along in my pregnancy. After the Botanicals we got lunch and relaxed then headed off to the beach. Turns out because a section of the beach was closed, we had to hike another few miles to get to the opened section of sand. I was exhausted, all the walking was really wearing me out but I wanted to keep up with everyone so I didn’t complain too much.

Sunday morning, June 4th, as soon as I woke up, I started having some mild cramps. I ignored it because I thought it must have been because I had overdone it the day before with all of that walking around in the heat. So I ignored the slight pain and we did more walking yet again by going to the At Home store and browsing all the furniture and home goods for several hours. When we were standing in the checkout line I just couldn’t take it anymore and was almost in tears so I went out to the car to sit while they finished up. The cramps were still sporadic and felt no worse than bad cramps so I told myself in addition to overdoing it yesterday and now today, being 29 weeks pregnant and entering into my 3rd trimester, this was probably just growing pains. My uterus was most likely just making more room for my growing baby. So we head back to my house and get a pizza for dinner and watch some tv, all the while I am telling them about my cramps coming and going. My sister and her friend left at 7pm to head back home and AC and I decided to call it a night since I was starting to really not feel good. By 9pm we are sitting in bed and I am texting my best friend, asking what contractions feel like, and that I am starting to get slightly worried. She tells me at 29 weeks, not to worry it’s probably braxton hicks but to start timing the cramps if I notice that they seem to be coming at steady intervals. She also mentioned that Braxton Hicks shouldn’t hurt and just feel like a lot of pressure. I was starting to be in quite a bit of pain at that point but told myself the cramps were coming at random and I was just being paranoid. But my 10pm I started timing the cramps because the pain was having me doubled over in bed, I could barely take it. That’s when I realized these “cramps” were every 5 minutes right on the dot. At first I thought this has to be all in my head, that I am causing the pain to come at 5 min intervals (I know, I was stupid and was in deep, deep denial) but the pain became so sever I couldn’t ignore it and woke AC up and said I think we better head to the hospital. AC literally jumped out of bed immediately and we ran around the house in a panic trying to find shoes and car keys. He was very concerned the whole car ride over as I am withering in pain so frequently.

As we got to hospital, AC drove in front of the emergency section and told me to go in while he parked the car, to which I reply, “I don’t think I should be going into the emergency side.” And AC stated “If this isn’t an emergency, I don’t know what is.” Looking back, I can’t believe how much I truly thought that everything was ok and that the doctors would just send me back home telling me to rest and that I just over did it. So anyway, I go sign in and the front desk lady immediately sends someone to come get me with a wheel chair, to which I refuse to sit in of course and just walk along side it to the exam room. By then AC has joined me and the cramps are every 3 min at this point and the doctor who has hooked me up to some monitors informs me that these are in fact contractions and that I am 4 and a half cm dilated! Things start happening very fast after that, and the team of doctors and nurses are whirling around me and administering drugs to try and stop the labor and talking about wanting to transfer me to another hospital 15 min away that is better suited to handling such early babies. I’d never seen AC so pale as he stood out of the way along the back wall not knowing what to do. By the time the doctors checked me again it was about 10:45 pm and I was now 9cm dilated and they informed AC and I that there was no stopping this and it wouldn’t be safe to transfer me anymore, the baby was coming tonight!

I was quickly wheeled down to labor and delivery. It was a humongous room, much bigger than my livingroom, and in the back corner stood a team of people from CHKD, a children’s hospital, that was setting up to be prepared to whisk my baby away as soon as she popped out. I was in so much pain, it was unbearable, I started asking, can’t they just get her out? I need her out now! Someone knock me out, I can’t do this and please, please give me an epidural! AC whispered that it was probably too late for the epidural but thankfully a nurse assured me that it wasn’t and they would give it to me right then. I just remember being hunched over holding onto some kind nurse and wanting to die lol but as soon as they put that needle in my back, relief washed over me. It was the best feeling in the world to have that pain lifted. What was great was that I could still feel my legs and had no numbness whatsoever, just no more pain. Right as they were giving me the epidural I told them I felt the need to push so as soon as I received it they had me move into position to push my baby out. I had to be instructed on how to do everything, I

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had no idea what I was doing. Once I got the hang of it I pushed maybe 4 or 5 times before the doctor decided to give me an episiotomy. He said he wanted baby girl to struggle as little as possible being how tiny she was going to be. I didn’t feel anything as he cut me, and at that point I really didn’t care just as long as it was best for my baby. I pushed a couple more times and then there she was! Baby Adeline born at 1:34 am June 5th, 2 pounds 9 oz. Just a mere 3 hours after I had arrived at the hospital.

The doctor held her out to show me her and then informed AC that he couldn’t cut the cord, the doctor needed to do it. Neither of us got to hold her before she was quickly taken to the far end of the room where the CHKD team jumped into action getting her ready to transport. Thankfully before they took her away, AC and I got to reach into her isolette and hold her tiny hands for a moment and then she was gone…

 

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I think I will write about our NICU journey on another post but I’lll just say that after over 2 months of driving to the hospital everyday, our sweet girl came home August 9th! ❤