Journal entry by Michelle Mely

Things have been very busy the last few weeks. We are officially done with the scheduled dosing of the oral steroids!!!!! She started then back in November. We still have to do a stimulation test to make sure her body is producing the hormone and the right amount of it too. That test is scheduled for next week. We have been doing weekly OT appointments to help with her development. We might have to start PT too but I will know more next week when we go in for our NICU follow up appointment. We also have been doing weekly visits with early intervention from the school district. They have a teacher, Physical Therapist, occupational therapist, and a vision teacher that are following her. As well as a speech therapist to work with her on feedings and oral stimulation. 

We saw the ophthalmologist and the retina specialist last week and they have both said that her right eye is better but still has some of the leftover deposits. Her left eye there is still some inflammation but that had improved some and her retina was starting to lay flat on the outer edge. The retina specialist also said she wants to do another exam under anesthesia to get a better look at how things are healing. They will be taking pictures to compare with the ones from her first surgery and possibly cutting the band that’s around her left eye and steroid injections in both eyes.  

She is still vomiting 1-3 times a day. Still unsure as to why. I have an appointment scheduled with a GI doctor at the end of the month. So we will see what they have to say about it. 

Overall she is doing well she is about 13.5 lbs now and is happy and smiling. She has laughed here and there but we have yet to hear a big belly laugh. 
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Journal entry by Michelle Mely

We saw the retina specialist today. She said the right eye is continuing to improve. It my require another shot of the steroid. The medication only works for about 3-4 months. So depending on how she looks at that point they may do the injection again. As for her left eye she said it still looks angry and the retina looks similar to how it looked prior to her surgery. She thinks her left eye might require another surgery to help flaten out the retina. But that wouldn’t be for a few months since there is still so much inflammation they don’t want to mess with it now. So for now it’s a lot of waiting and watching and hoping for the best. We are trying to be optimistic but it’s been really tough lately. Everything going on with her eyes, she still isn’t taking any food from her mouth( we are working with speech therapy and occupational therapy for help on this) and she has started vomiting 1-3 times a day. I have talked to the pediatrician, NICU follow up, endocrine and someone from surgery as to why this would be and no one is too concerned as long as she is still gaining weight and keeping most of her food down. Hoping it’s just a phase and it gets better as time goes on. 

Journal entry by Michelle Mely

We saw the retina specialist last week she said that everything was healing well. She was pretty irritable last week she is starting to get better. 
Today we saw the ophthalmologist and she told us that her right eye still has the deposits and it could take months to clear. As for her left eye the stitches are starting to dissolve which I’m sure is an awful feeling. Also her retina isn’t completely flat and if it doesn’t flatten she won’t have full vision in her left eye. She is also nearsighted and will need glasses. We have a prescription and will be getting them soon. 
Since her surgery she hasn’t taken much food by her mouth. We have been doing pretty much 100% tube feedings. On top of that her reflux is the worst it has been. Hoping that all this will pass and she will start feeling better soon. 
And to end on a high note. We have been able to ween her off oxygen!!!!! We still have to monitor on her to make sure she is doing ok with the ween. The monitor and supplies will stay in our house for awhile just incase she were to end up with a cold and would need to go back on oxygen. So far she is doing really good with being off. 

Journal entry by Michelle Mely

Paige’s eye surgery went well. In the left eye they had to put a band around the eye to help hold the retina in place since it had detached from the fluid. They also put in a silicone oil bubble to help close the hole. In her right eye they did an injection of a steroid to help absorb the last of fluid and the deposits. She had to stay overnight for observation because of her being a preemie and still on oxygen. We were able to go home the next morning. But not before being able to see a friendly face. One of the doctors that was taking care of her and preparing us for discharge was one of the residents that we had while in the NICU. 

Since being home she has been doing ok. A bit more cranky and in pain which we have been managing. Her left eye is swollen and very red. The doctor warned us that she will likely be bruised which could last 3-4 weeks. We only have 1 eye drop now 4 times a day in the left eye only. A lot better than when this all first started. She had 3 different drops one once a day another 3 times a day and the last one they were doing every hour. Hopefully everyday gets a little better. I did she her smile today so I’m hoping that we are on our upward climb.

As for follow up, she need to see the retinologist in a week and opthamology in 2-3 weeks. Best case senario she will also need 2 more procedures after this. One in 3-4 months to snip and remove the band around her eye and the second in 6 months to remove the oil bubble. Both of these will be at children’s again in the OR under anesthesia. 

Journal entry by Michelle Mely

Today we had a follow up appointment with the retina specialist. If you don’t remember Paige had fluid built up under her retina a complication from her laser treatment. At her appointment today we found out that the fluid is gone and we can finally come off the oral steroid that she has been on for weeks. Unfortunately though her right eye has deposits left behind from the fluid and now requires steroid injections in the eye to help with healing. As for her left eye, where the fluid had built up it ballooned and the tissue had overlapped where it had overlapped the tissue adhered to itself. So as the fluid dissipated where the tissue was adhered it had tore a small hole near her central vision and now requires surgery to repair the hole. We are not sure exactly what it will all entail as the doctor said she won’t know until the surgery. She will most likely need glasses soon after the surgery. The surgery is scheduled for January 28. We will find out more soon. 

Journal entry by Michelle Mely

We have survived our first couple weeks at home. She has kept us very busy. She is now about 10lbs.  Feedings has been a struggle since she now has developed reflux. Her eyes are continuing to improve. We have been able to stop one of the drops and decrease one of the other ones. We are hoping that in the coming weeks we will be able to ween the oral steroid she is on. She is still on oxygen but hopefully getting closer to coming off of it. 

Journal entry by Michelle Mely

After 172 days in the NICU, Paige is finally coming home. This journey has been the most challenging thing we have ever gone through. We have had late night and early morning phone calls saying we needed to come in quick. We have been through 5 surgeries, infections, numerous blood transfusions, being in isolation, complications from procedures, and the loss of our sweet daughter Amelia. We have had 172 days of leaving the hospital and not bringing her home. We have had days that all we could do was just sit next to them. We have laughed and have many many many tears. There have been days that we had to drag ourselves out to take a break or leave for the night neither one of us wanting to leave. The staff has been nothing but amazing helping us through this journey. The NICU is never a place we wanted to be but we have met some truly incredible people along the way. We are very excited to start this new chapter in our lives and a little nervous. This little girl is the toughest most bravest person we have ever met. We are so proud of her. She has come along way since her 1lb 4.5oz days. 

Journal entry by Michelle Mely

This week Paige has made some huge strides. She is now on low flow oxygen at an amount that she could go home on. Everyday her lungs keep improving. 

On Thursday the occupational therapist worked with her on her first bottle feeding. She took 51ml out of 75ml her first time ever taking a bottle!!!!! 

On Friday I got to breastfeed her for the first time. She did such a good job. She latched right away a took 6ml from me at her 12:00 feeding and 18ml at her 6:00 feeding. 

On Saturday the retina specialist came in the morning and said said they her eyes are improving and this is not a surgical case. Yay!!!! They are continuing with the drops and steroids for the time being. We also got to give her her first bottle. She took about half of her feeding. After talking to the team they thought her was ready for “infant driven feedings”.  So when she wakes up and is hungry they will feed instead of scheduled feeding every 3 hours. With this change they thought she was ready to also be moved to a different nursery and last night they moved her to a private room on a different floor. This is such a huge step closer to confine home. We thought this day would never come. 
Today while at the hospital we talked to the team about the changes and with how she is doing what was the timeline looking like to transition into coming home. They said it could be as soon as NEXT WEEK!!!! 😍😁😮🤭 We we’re in shock. She still has some things that she needs to work on and we have some training classes that we need to do as well. This week we will be very busy getting the house ready and I will be spending a lot more time at the hospital to learn and get more familiar and comfortable with caring for our little miracle baby. We couldn’t be more excited for the coming days. We are in the home stretch!!!! 

Thank you to all of you for following our story and your loving support along the way. I guess the journey is only just beginning the real journey starts when she comes home!! 

Journal entry by Michelle Mely

Update on Paige’s eyes. 

At her eye exam yesterday the doctor said her eyes were unchanged from last week. No better and no worse. They are now doing IV steroids for a few days and then will move to oral steroids along with the drops every 2 hours. The retina specialist is going to look at her on Saturday morning and we will go from there. 

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Journal entry by Michelle Mely

This week has been busy for our little miracle. 

Last week on Tuesday she had an eye exam to check in her after her laser treatment the week prior. She had a lot of fluid behind her retina which was very concerning. They said to up the steroid drops to every hour and they will recheck her today. It the drops don’t work they will have to do injections around the eye and if it still persists and doesn’t look any better she will need surgery on the back of her eye. We are keeping our fingers crossed that the drops will take care of the problem and she won’t need another intervention. 

They have consolidated her feeding down to 30 minutes which is a normal feeding time. She seems to be tolerating it well with minimal spit up. 

She is now off CPAP!!! YAY!!!!! And now on high flow oxygen. She is currently at 5 liters and they will have to ween her down to below 2 liters to move to low flow. She is tolerating the change well. 

Michelle’s Story

Site created on June 20, 2018

This is the start of the story for Amelia and Paige Mely.

I went to my regularly scheduled ultrasound on Tuesday June 19, 2018. The ultrasound was to recheck a few things that they could not see from my 20 week anatomy scan done on May 24, 2018. During the recheck ultrasound they noticed that baby A’s feet were now down low and was making it hard to see my cervix. Because of them not being able to see my cervix they decided that a vaginal ultrasound was necessary for them to see. During that part of the exam they saw that my cervix had started to open and the fluid sac was starting to protrude out. At this time the doctor came in and talked to me about getting admitted to the hospital and wanting to monitor me for signs of labor. They said with what they were seeing that I was at high risk for preterm labor and could likely deliver the twins soon. I called Adam right away and he was able to be there within an hour. I was showing no signs of labor but during the ultrasound they could tell that I was already dilated to about 2cm. Since I was only 23 weeks and 6 days they told me that the Maple Grove Hospital doesn’t take babies under 26weeks and that I was going to need to be transferred to another hospital. We chose to come to the University of Minnesota Fairview where I was transported via ambulance. When I got there they hooked me up to fetal monitors and and had me started on an IV. At one point I felt what might have been having a contraction and a very full bladder. When I went and used the restroom I noticed some discharge and bloody mucus as well. This was all a concern for me to go into preterm labor. They had the doctor come in and perform another ultrasound to see if things had progressed. She did notice that I had dilated more and she could also see feet and a leg of baby A down in the sac that was protruding out of my cervix. We tried very hard to get through the night and into morning so I could get the second shot of steroids for lung development. But against all of our efforts I started to show more signs of going into labor. The doctors recommended that we needed to do a c-section as soon as possible to protect the health of the babies. They started the process of prepping me and getting everything ready for me to have the surgery. Once they brought me back they said that they would try once for a spinal block if they couldn’t get it they would knock me out and Adam would not be able to be there during the surgery. Thankfully, they were able to successfully administer the spinal block and Adam was able to join me and witness our 2 beautiful miracle babies being born. Baby B was born first at 12:48am on June 20 weighing 1lb 8oz. Her name is Amelia Jane Mely. Baby A was born next at 12:49am weighing 1lb 4.5oz. Her name is Paige Ann Mely. After they were born they each had their own team of doctors working on them. I was able to hear Amelia cry for a second and I heard that Paige was kicking and moving pretty good. While I was getting stitched back up they did bring Amelia around and Adam and I were able to see her for a minute before they went off to the NICU. I did not get to see Paige after she was born. Once I was done with the surgery and out of the post opt they did bring Adam and I to see the girls where we got to see Amelia again a little closer and meet Paige for the first time. We were both able to touch Paige for a little bit. As of now I am in recovery and the girls will be in the NICU most likely till their due date which is October 10th. That may change. We will do our best to keep everyone updated. Please pray for everyone at this time.

Here is the link for the Go Fund me page that was set up for our family: