Ryan & Porshia Horine
Please scroll down to get updates daily!
A message from Ryan & Porshia Horine below.
As a friend of the family and a client of Porshia’s (Remi’s mother) I’m happy and honored to be able to set up this gofundme page for a wonderful family I have been Blessed to know. A family that selflessly and graciously does for others is in need and deserving of their kind deeds returned. With the family’s full knowledge and their blessing I set up this page for Remi Belle Horine in an effort to help with daunting and ever growing medical expenses. Sweet little Remi came into this world much earlier than expected and this little Angel of God and Blessing to her parents will need many months in the hospital before she can venture home. The birth happened while the couple vacationed in Florida for Porshia’s birthday and one last get a way before the two became three. Well Remi had other plans. Born at just under 24 weeks will be a challenge for all involved, but this couple has a strong and unwavering faith in God and know He’s with them every step of the way.
Please keep this special little Angel, this little miracle girl in your prayers and help out the family in any way you are able. Thank you! Below is a more detailed account from Ryan, Remi’s father, with progress reports and updates.
Porshia and I flew to Orlando Saturday to celebrate her 30th birthday and enjoy one last moon before the baby came. Sunday night Porshia’s water ruptured and we headed to Winnie Palmer Hospital for Women & Babies. We checked into triage and they admitted us on the spot. Porshia was placed on bed rest and the goal was to try and get little Remi and Porshia to 35 weeks until giving birth (We were at 24 weeks 2 days when we checked in). Tuesday night Porshia was having contractions and little Remi’s heart beat began dropping during the contractions. Porshia and Remi had to go into emergency c section surgery at 715pm on Tuesday. Both came out stable and doing well. Remi had what’s called velamentous cord insertion (google it). The surgeon said if she had gotten any bigger she would have ripped her cord and died. So it was a blessing she delivered now. Remi was 1 pound 6 oz. 12 inches long
As of now Porshia and Remi are both doing great. Porshia is already up and walking around. Pumping great, and just a super woman!!! (Honesty don’t know how she’s doing it!) Although, it has been hard to get continuous rest here in the hospital with lots of people coming in the room at all hours. They will be discharging us from the hospital tomorrow. We have filled out an application to Ronald McDonald House and were approved. We have been place on a wait list for a room and have to call when we are discharged to see if there is any availability.
Remi Belle update:
1) I am so overwhelmed by the love and comments on here, people reaching out, and all the prayers! Thank you to all!
2) Remi has developed Pulmonary Interstitial Emphysema and is also low on fluids. Not urinating as much as the doctors would like. They are going to change her to a high frequency jet and oscillatory ventilation, and they are also increasing her Fluids.
3) Porshia is being discharged today. We got approved for the Ronald McDonald House here and can check in after we leave the hospital.
4) before finding out all this news we decided to start read Jeremiah to little Remi. Here is the scripture for today. It seemed very fitting:
Jeremiah 1 New International Version (NIV)
Remi Belle update 9/29
The changes that were made yesterday really seem to help little Remi. The doctors said she had a good night with solid vitals. They took x-rays and her lungs this morning already look better. The plan of action now is to continue to let her lungs heal and then in a few weeks take her into surgery to have a feeding tube put in. Overall positive news today. So thankful for the Lords answers to prays.
Remi Belle update 9/30:
Remi is still on the same ventilator setting and doing well since being switched over to the jet ventilator. X-ray’s this morning show continued healing in her lungs. They are planning on putting a PICC line in her today which from my understanding is a very long IV which is more permanent than her current set up. Overall positive news. We are just praying for continued healing and for her body to mature so that they place a feeding tube into her stomach.
Remi Belle update 10/1/18:
Porshia got to hold Remi for the first time last night! (Video below) Changing her diaper and lifting her so the nurses could changes the linens. Came in this morning for rounds and the doctors say she is doing excellent. She has gained some weight, her lungs continue to improve, and they got the Picc line in with no problems yesterday. She is doing so well that they are going to switch her back to the original ventilator.
Remi Belle Update 10/2/18:
Life as a NICU parent is extremely hard. Full of ups and down's. One Nurse described it as the cha-cha. two steps forward and one step back, but as long as you keep dancing you are good. Last night was a difficult night. Remi's Oxygen saturation levels kept dropping and you could clearly see she was uncomfortable. The staff here is great though and kept adjusting her settings until she was at the right levels. During rounds this morning the doctors told us that she is not urinating as much as she should. They are going to put her on medicine to help with that. Overall, Remi seems to continue to do great, and the doctors seem overall positive. I continue to pray for the Lord to touch and heal little Remi, and also to guide Porshia and I in this difficult time.
Post by Porshia:
We are so in love with our little Remi Belle❤️ follow us on Facebook to see updates!
Thank you all for the prayers, love and generosity!! God is answering prayers by the minute, and daily!
Jerimmah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Amen Amen
Remi Belle update 10/3/18...
Remi has responded well to the steroids they gave her to help her start urinating again. The doctors are going to reduce the amount she is given and continue to monitor her out put. They are also very pleased with her breathing and oxygen levels. Yesterday, they also did a scan of her brain to look for any bleeding. On the left side of her brain the only saw slight bleeding and on the right they saw a little more than the left. The doctors said with this type of bleeding she still has a 80-90% chance of being totally normal with no complications. He also told us that premature babies have the ability to continue growing and repairing brain cells. They will scan her again next week to see if any of the bleeding has changed. Porshia and I have an overwhelming sense of peace given to us yesterday by the Lord. We know that he is the Great physician, and through him all things are possible. We have really been able to put our faith in him, and we believe we will see great things from this little girl. Who by the way has just stolen my heart!!!!
Remi Belle update 10/4/18...
Not much change from yesterday. Remi is still having good urine output. Her last dose of medicine for that will come this afternoon. In about a week the doctors want to change the ventilator she’s on to a conventional ventilator, and if she does well on that for two weeks they will most likely take her in for surgery to have her feeding tube placed! Overall, she had a good day yesterday, and we continue to pray for God’s healing hand over her. Just trying to remember this will be a marathon not sprint!
Remi Belle Update 10/5/18:
Yesterday they stopped giving Remi steroids that helped her urine output. The steroids have side effects and they would like to keep her off of them as much as possible. As a result her urine output did go down over night. One of the Doctors firmly believes it’s the amount of fluids she is on and not a Kidney issue. He did say that she would probably need to go on and off the steroids every once in a while just because tiny babies don’t have very strong adrenals. Remi’s hemoglobin’s are also low, and she is not able to reproduce enough so they are going to give her a blood transfusion today. They did more X-ray’s today and the Dr. said it looked good. Overall, not too much has changed and the only thing they will really be doing to her today is giving her more blood. We continue to daily pray over and read the living words of God to Remi. Porshia and I are both excited for the day that we can finally hold her which may come within the next two weeks or so!!!
Remi Belle update 10/6/18
Both Porshia and I are feeling tired today, but Remi is still doing well! She’s been stable all night and morning. Her only issue at the moment is her urine output. They are putting her on steroids again, and also pulling blood to test and see if she has any infections that could be causing the low output.
Remi Belle update 10/7/18
Remi went back on the steroids yesterday to help with her urine output, and this morning she has already peed through her sheets twice!!! Praise the Lord!!!! All of her blood cultures came back negative for any infection, and since the blood transfusion her vitals have been super stable! The only issue she is facing now is the steroids are causing her high blood pressure. So they are reducing the amount of steroids by half and trying to find a balance between urine output and blood pressure.
Remi Belle Update 10/8/18:
Remi has been doing excellent. Today she is back up to her birth weight of 630 grams!!! She lost weight after birth which is normal, but she is finally coming back up! Since moving to the lower dose of steroids yesterday her blood pressure has lowered, but she continues to have good urine output. The Doctors are not going to make too many changes today and continue to monitor how she is doing. As long as she continues to do well they will move her over to a conventional ventilator maybe as soon as tomorrow. Once she is on the conventional vent and stable they will consult with the surgeons about putting GI tube in for feeding! Tomorrow they will be doing another scan of her brain to see how the bleeding had changed over the course of a week. Overall great news for Little Remi today. We will be praying that the bleeding in her brain has gotten better, that she can move over to the conventional vent, and that she will be stable enough to go into surgery for her feeding tube!
Remi Update 10/9/18
We have some great news today! They are switching Remi over to the conventional ventilator today. This means as long as Remi is stable and liking the new set up we will get to HOLD HER TONIGHT!!!!! ….Other news with Remi, her urine output did drop overnight. She is still on the half dose of steroids, and her blood pressure is doing much better. The Doctor examined her this morning and said she looks and feels good, and her Kidney functions are good. They are going to give her more fluids and see if that help to regulate her…. During round the Doctors also reviewed her brain scan, they said that it was about the same as last week with maybe slightly more bleeding. The Doctor today said she has no concerns with the scan today and they will continue to monitor the bleeding…. We also got a chance to talk to the surgeons today. They said that they would really like to wait till she is 1500 grams before doing any type of surgery on her (she is currently 625 grams). The doctors are wanting it sooner so that they can have a feeding tube placed. The Doctors said they will continue to talk with the surgeons until both can agree upon a suitable weight and time period. Overall, we are just so excited to hold our little girl for the first time! We continue to pray that the Lord heals her little body, and that he is with the Doctors and Surgeons in all the decisions that are made
Ryan: My beautiful girls!!! First kangaroo!!!!
Remi Update 10/10/18
Last night was a beautiful night getting to hold little Remi Kangaroo style! I finally googled some of the benefits of Kangaroo and it’s truly amazing what happens…Remi continues to have urine output issues even while on steroids now. The Doctors are going to bring in a Kidney doctor to look at her before changing any of her fluids and meds again. She is also “riding” the new ventilator. Meaning she is letting it do all the work and not really breathing on her own. The Docs are going to brainstorm alternative vent options for her. Praying that the Lord touches her and allows her to regulate her Urine output, also praying that we can continue to kangaroo her with whatever they change to the vent.
Remi Update 10/11/18
Remi has had some positive steps forward over the past 24 hours, and seems to really enjoy Kangaroo time! She started to have some good urine output yesterday and today. After the Doctors consulted with the Kidney specialist he believes blood flow may not be consistent in her kidneys, or may have dropped at one point. Her Kidneys have grown though which is a very positive sign. They are going to keep her on the steroids for now, up her fluids, and monitor her a lot! Our prayer for today is that she would remain stable with her urine output, and that she would continue to grow and heal!
Thank you father God for blessing Porshia and I with this beautiful little masterpiece!!!!
Remi update 10/12/18
Remi’s kidneys continue to heal and look better every day. She continues to have good output. The doctors are going to keep pumping her with extra fluids to make sure they are replacing everything she is peeing out now... She is getting a lot of secretions now, and with her esophagus issues they have no where to go. They are going to stop doing oral care which cause more secretions....they have also adjusted her vent settings and Remi is taking more breaths on her own and not relying on the vent as much...Praising God for all of this good news today! Knowing in the good times and bad he is in control!
Remi update 10/14/18
Remi was doing good yesterday, but began not acting like her self last night. Becoming very touchy when the nurse would go in her bed. We are currently not allowed to kangaroo her because of her touchy-ness. They ran a full work up of everything drawing blood, taking blood gases, etc. Being proactive the doctors began her on a general antibiotic Incase of infection. After drawing blood they saw her hemoglobin was low. So they are now giving her a blood transfusions. Hopefully that will help Remi with her touchy-ness.
Remi Update 10/15/18
After going almost 48 hours without pee the flood gates have opened! Remi is back on track with her urine output. Lots of discussion this morning in rounds about the amount of fluids she’s on and what she needs. When she stops urinating they start reducing her potassium and other nutrients so that she doesn’t have an excess build up, but then when she has so much output they have to catch back up with her. Praying that she can start regulating more so that we don’t have as wild of swings. The doctors are also going to change some of her vent setting today and see how much she can really breathe on her own. They want to start moving her to less and less invasive breathing, but due to Remi’s esophageal atresia the next step down from the vent she is on is not really an option. So the doctors are going to brainstorm alternatives, or Remi would have to make a bigger breathing step than the usually make. As scary as all of this can be sometimes it’s amazing the amount of progress little Remi has made in just 3 weeks. I know that the Lord continues to be in this situation at all times, and there is no doubt in my mind that the Lord will heal little Remi!!! Pretty soon Porshia and I will look back on this and say “remember the good old days when we spent the winter in Florida and just got to sit and hold Remi all the time!”
Remi Belle Update 10/16/18
HAPPY 3 WEEK BIRTHDAY!!!! Remi continues to have lots and lots of urine output. The doctors are monitoring everything that comes out, and are replacing almost all of it so that she doesn’t become dehydrated. They are going to start slowly taking her off the steroids, and see how she reacts to that. As well as reduce that amount of assisted breaths she gets on the ventilator. They will slowly reduce the amount of assistance she gets training her to breathe more on her own so that we can eventually take the breathing tube completely out!
Remi update 10/17/18
Not too many changes from yesterday to today. The doctors are still monitoring her output and fluids very closely. Remi did very well with the lower vent setting yesterday, and they are going to lower them again today. We are praising Jesus for bringing us this far, and continuing to pray for healing and continued forward progress!
Remi Update 10/18/18
Remi continues to do well and remains very stable. The doctors continue to monitor closely her fluids and Urine output, as well as her breathing. Today they are going to just leave her at a steady state from yesterday’s changes, and then they will check her again tomorrow. As long as she continues to do well today they plan to move her onto the next breathing step tomorrow. Which would be taking the breathing tube out of her throat and placing a line up to her nose. Her weight increase last night up to 700 grams. Needing her to get up to 1500 grams before she can have surgery to have a feeding tube placed… We know we are on a long journey, but we have complete faith in God that he will 100% heal Little Remi Belle. What an amazing testimony he is building through this little one, and although its hard and even sucks at times it’s a true blessing and honor for Porshia and I to be a part of this Journey.
Remi Update 10/19/18-
The doctors said that Remi is in time out today! Haha. Remi has had good output most of the week, but then stopped urinating again yesterday. Although she did pick up her urine output in the night. The doctors are very confused as to why she keeps going through these stages of stopping and starting. All her numbers and labs are great, and there is really no reason at this point to why she stops having output. As a result of her not peeing yesterday she had a lot of excess fluids in her (about 100grams) which makes her very touchy and causes her to de-stat a lot. Today, they are going to leave everything the same, and just continue to watch what she does. They are going to have a few test done on her Kidney’s to makes sure they are still working properly. A growing concern is the steroids that she is on. Long term it is not good for her, and they would like to start taking her off of them as soon as possible. Praying that the doctors would find out what’s causing this to happen, and that the Lord would heal her kidney’s. Also, praying for no long term side effect from the steroids she on, and that she would gain weight. There is really not too much the doctors can do until she gets bigger, so that is priority number 1 right now.
Everyone is doing good today! We even got our first family selfie!!!!
Remi Update 10/22/18:
Remi was in her first time out last Friday, but then she began urinating again Friday afternoon. So by Friday evening they took her out of time out and we were able to Kangaroo her again! She did really well Friday night and all day Saturday... Sunday Remi started to become a little more touchy. They did full lab work on her this morning (pre scheduled) and during rounds the doctors reviewed all her numbers. The doctor said all of her numbers look good, and visually she looks good, and is still very active. The doctor said her “touchiness” is just her being feisty….They are ordering an X-ray just to make sure her breathing tube is in the exact spot they want it. That being off just a couple of Millimeters can really upset her. They are going to start slowly taking her off the steroids this week, and tomorrow morning they will be doing another ultra sound of her brain to see if the bleeding has subsided or not…Please pray that Remi can come off the steroids and continue to have good urine output, also pray that her brain ultra sound comes back tomorrow with improvement!
Remi had a pretty rough night last night. Normally the nurses and doctors like to leave her alone as much as possible and really only go in her bed every 6 hours. Last night someone was in her bed doing something to her from about 7pm till 11pm… Because she was still acting touchy the doctors wanted to get blood from her to test her for any infections (it came back with no infection). Normally she bleeds a lot, but last night it took two different nurses and four different sticks to get enough blood for testing… While that was going on Porshia and I noticed that her PICC line (her main IV that goes up her arm and into her chest) looked a little puffy in her arm. We said something to the nurses and they did X-ray’s and the line had moved. They did a procedure to put it back in place, but over night the PICC line stopped working…. Today they are going to be placing a new PICC line in a different location. Other than that no other changes today. Porshia and I are emotionally and physically exhausted. Prayers for a smooth PICC line procedure today, and prayers that the Lord would continue to give Porshia and I strength.
Remi update 10/24/18
Remi had a lot better day yesterday than the past two days. She had very high urine output. The doctors believe she is finally letting go of the extra fluids they pumped her with last week to get her to start urinating again… They were able to get her new PICC line in with no problems yesterday. All her lab results today (she’s been getting labs every other day) came back with good numbers… They will be doing a follow up brain scan later today or tomorrow, otherwise no real changes…. Overall, Remi just looked more comfortable and peaceful yesterday. Praying for continued rest, healing, and good brain scans. With all that was going on we have not been able to hold her for the past two days so we are excited to start kangarooing again today!!! Thank you Jesus, Family, friends, and even complete strangers for coming along side us and supporting all three of us in this crazy season of life!
Remi update 10/25/18
Very short rounds today with the doctors. Remi is still doing great. She is up to 840 grams!!! She got her last dose of steroids this morning after being weaned off of them. They will do Labs on Saturday and check her levels after being off the steroids for 48hrs. They did the brain scan this morning. The doctors took a quick look, and didn’t see any concerns. The results still need to be read by a radiologist, and they will give us a full report after that is done. Overall, not too much will change from yesterday. We continue to pray that the Lord would bring healing, comfort, and growth to Remi!
Remi update 10/26/18-
Remi gained another 40 grams yesterday. Up to 880 grams now. They’ve been able to dial in her nutrition so that she is getting the most/healthiest calories for her size, and we should see her really start to bulk up! The brain scans were read in detail and the bleeding in her brain is subsiding in a positive way, and is not moving into other areas of her brain. She has been so great the past couple days. I know we will have more ups and downs, But Praising God for all the work he is doing not only through the doctors and nurses but in the things that we don’t even see going on behind the scenes.
We broke two pounds today!!! 920 grams to be exact. #bulkseason
Remi update 10/29/18
Remi is up to 940 grams now! She had a really good weekend and is still doing great! They made some pretty major changes to her vent today preparing for extubation of her breathing tube. Basically they changed the vent setting to no longer breath for her, unless she doesn’t take a breath for 3 seconds. If she does well on these settings the will pull the tube and just give her oxygen through her nose. Very exciting times! Praying the Lord would give her the strength and ability to breath on her own!
Remi Update 10/30/18
Remi had a pretty rough day yesterday. She didn’t take well to the ventilator changes that were made yesterday, although she was on them for about 12 hours. The doctors decided to change her tube for a slightly bigger once since she has grown a lot, and they changed her vent back to the settings that she was on yesterday. After all those changes last night she was very touchy and visibly uncomfortable. Last night they also started seeing yellowish secretions in her tube, along with secretions in her eyes. They took samples of everything and sent them off to be tested for infections. They also immediately started her on antibiotics. As of now first results look like there is not infection, but they will continue to let the cultures cure and see if anything grows in the next 12-36 hours. Although it is hard to see her take steps back, and be visibly uncomfortable Porshia and I know that the Lord is with her and that he continues to heal her body! Praising Jesus for this miracle girl and her great testimony he continues to build!
Remi update 10/31/18
Remi had a much better day yesterday than the day before after going back to her original vent settings. None of the cultures have come back with any type of infection. They will continue to let them grow, but at this point it’s looking pretty good. They are not planning on changing too much on her today. Letting her rest and recover. She is still growing strong, about 20 grams a day on average. Thankful for all the Lord has done and continues to do for Remi.
Trick or treat!!!!
Our growing girl!! Little Remi Belle ❤️ our hearts are exploding with love!! Thank you Lord for our babygirl!!
Remi Update 11/2/18
First update of November! Crazy to think Remi spent the whole month of October in the hospital, but this Tuesday will be 6 weeks since her birth! Feels like we are time limbo down here….The cultures that they were testing for infections did come back as staph infection, but the antibiotics they gave her in the beginning seem to be all that she has needed for now. The yellow secretions in her tube have already turned back to a clear/white coloring. They did order some eye drops to make sure the staph in the eye gets completely cleared up. Otherwise, she has been doing really well since going back on her old vent settings earlier this week. She is taking bulking season serious and weighed in at 1010 gram last night!!! Thankful that the infection she got wasn’t anything more serious, and that she seemed to handle it well! Praising God for all the work he is doing in Remi’s life!
Remi update 11/4/18
The rare weekend update. Remi could use some prayers tonight. Her right lung has collapsed, she has an infection (confirmed by blood count. still waiting for the culture to grow to know what it is exactly), and she is very lethargic (which is not normal for Remi)...the doctors have started her on antibiotics. Please pray for Remi’s healing.
Remi Update 11/5/18
So Remi’s blood count yesterday was super crazy, but the lab grown cultures have yet to grow anything which is confusing the doctors (I say it sounds like the Lord working!). The doctors do believe though that because of her lung being collapsed and the blood count from yesterday that her staph infection from last week has developed into pneumonia. They are putting her on two antibiotics to kill any sort of infection. One will last for 48hrs, the other she will be on for 7 days. Because of all this there are no plans to remove her breathing tube anytime soon. She does continue to gain weight. She is up to 1075 grams. Remi’s short term plan is to Rest, recover from her infections, and prepare for her surgery at 1500 grams! …We are continuing to pray for Remi’s healing from infections, we pray that she has no long term side effects from anything, but specifically today from having to be intubated for such a long period of time.
Remi update 11/6/18-
Remi seems to be doing better today! She is still touchy and a little agitated, but it’s good to see her moving around more and fighting back. She definitely is less lethargic than she was a few days ago. They did another X-ray last night and her lungs seems to have opened up! Thank you Jesus! …Although, she still has fluid in her lungs it seems as though she is starting to get better. They also did an echo of her heart yesterday and her PDA (Patent ductus arteriosus, basically a hole in her heart which is common for preemies) has closed up!!! ...Thankful for all the Lord continues to do in Remi’s life, may all the glory and praise go to him!
Remi update 11/7/18…
Remi is really starting to feel better now! During hands on the past couple times she has done really well and not needed any extra support. We were able to kangaroo her last night for the first time since Saturday, and she did amazing! They have been able to wean her off some oxygen. Earlier in the week she got as high as needing 60% oxygen, but this morning she is back down to 28% (as a reference point we breath 21% oxygen in the air)!!! She also continues to gain weight. She is now at 1180 grams. There is some growing concerns about her length. She hasn’t really grown at all in length since being born. They are going to change up some of her nutrition. Changing the amount of calcium and proteins could help her grow in length, but this is an area the doctors are more guessing at then knowing as proven facts that these changes will help her length. Overall, She is doing great, and we thank the Lord for healing her from her infections. We continue to pray that he would keep his healing hands on her, and that he would help her to start growing in length as well as continue to gain weight.
Remi update 11/8/18
Remi continues to do great and improve! Her blood culture did finally start growing staph yesterday similar to what was in her lungs and eye last week. Since it took so long for the culture to grow it’s possible it got contaminated. They took another sample from her last night to test again. As of this morning it hasn’t grown anything… Either way the treatment would be antibiotics which she is on, and she seems to be getting better already so there is really no concerns. She does need to be infection free to go in for her surgery which is coming up. Last night she weighed in at 1240 grams! Continuing to pray for Remi’s healing and recovery! We are also now praying for Remi’s new roommate, a 22 week baby who is absolutely tiny… Breaks my heart, and Porshia and I are lifting up the baby and family to God.
Remi update 11/9/18.
Remi is still doing great! She is down to 26% on her oxygen, and weighed in at 1250 grams last night. Since her original blood culture did end up growing infection in the blood stream the infectious disease doctors recommended taking fluids from Remi’s Spin to see if any infection made it into her brain. They got the fluids last night with no issues and the cultures haven’t grown anything (although it could take up to 3 or 4 days for something to grow). With the way she is improving and acting the doctors don’t think the infection did get to her brain, but this is just more of a precautionary step to know for sure. As of now it’s looking like Remi will be hitting her goal weight within the next 8-10 days. We just pray that she is able to rest and relax until then, and doesn’t have any more set back before the surgery.
Re-taping the tube means we get to see more of little Remi Belle’s cute wittle face! ❤️
Remi Belle Update 11/12/2018...
Remi is still doing great! It seems like she is able to string more and more good days in a row which is really awesome. Porshia and I got to give her a sponge bath over the weekend which was a little nerve racking, but also a lot of fun. Remi seemed to really enjoy it and was alert and just watching us. We also helped measure her length to get a more accurate number. Her length is up to 36cm, from 31, and she weighed in at 1340 grams! After the first culture grew infection they took a second culture as well as a culture from her spine last week. Those two cultures continue to not grow any infections. Praising God for all that he continues to do for Remi!!! Looking forward to her surgery at 1500 grams!
Remi Update 11/13/18
Thank you Clayton for sharing Remi’s story! The amount of support not only prayers and comments, but also financial support from complete strangers absolutely has blown Porshia and I away. We are beyond grateful and there is truly no way to express our gratitude. It truly reminds me of the early church in Acts when it talks about the body of Christ supporting those in need. From the bottom of our heart we want to say thank you! ...Remi had her first eye exam this morning! Her blood cells look immature, and there is some cloudiness in between her retina and eye also due to immaturity, but they didn’t see any eye diseases! The immaturity in the eye is to be expected with Remi’s age and nothing of concern at this point. The eye doctor will come back next week and see how she is progressing…. Last night Remi weighed in at 1389 grams, and as of this morning she is on 25% oxygen! Praising God for all that he is doing in Remi’s life. Praying that his healing hand would remain on her, and that he continues to guide and direct all the doctors and nurses.
Remi Update 11/14/18
Remi had a little bit of a rough night last night. Her PICC line has moved again. So she will need to get it replace for a second time. She seems a little more touchy today as well. They are going to make some adjustments to her Vent today, and then as long a she is doing well tomorrow they will go and replace the PICC line. She did weigh in at 1419 grams last night! Once she has her surgery and is settled the PICC line will no longer be needed. So hopefully its only 2 to 3 more weeks of dealing with the PICC. Otherwise she is doing great, we have been kangarooing every night, and she’s growing fast! We continue to praise God for this little miracle, and try to patiently await for her surgery!
Remi update 11/16/18
Remi has had an interesting 24 hours. Her weight went from 1450 to 1440 last night. They did try to get a new PICC line in her last night, but were unable to get it all the way in. They will have a different specialist try a new location today for the PICC line. Pray it goes smoothly and with ease today…Also, last night around 1130 Remi decided she was done with her breathing tube and pulled it out!!! Since it was out the Doctors tried her on the CPAP machine, she lasted for about 3 hours pretty well, but started to have CO2 build up in her lungs. This means she probably wasn’t taking deep enough breathes or wasn’t taking enough breaths. So they put the breathing tube back in. One of our nurses came in and said it looked Like Remi was smiling about what she had done! She is going to be a little pistol… The surgeons did come in early to look at Remi, and said they would do a full evaluation on her Sunday. If that evaluation goes well her surgery could be early next week! …We just praise God for this little girl and her feisty spirit! We also pray that her new PICC line goes in well, and that she can have surgery as soon as possible!
Remi update 11/19/18
Surgery is a GO! The surgeons are planning on taking her back to place her G-tube tomorrow, Tuesday, around lunch time… Remi has done great over the weekend. She did end up needing a blood transfusion over the weekend, but other than looking really pale she didn’t show any other symptoms of having low hemoglobin. Porshia and I got to give her another bath on Saturday. That is always fun, and Remi seem to really like it as well. As of last night Remi weighed in at 1570 grams and grew another two centimeters and is now 38CM long… We Pray that the Lords hand of protection and healing would continue to be on Remi, we pray that she would be able to rest leading up to her surgery, and we pray that the lord is with the surgeons tomorrow as they operate on Remi.
Remi update 11/20/18
Remi made it through surgery today with no complications! Praising the Lord! She may even be able to get her first milk on thanksgiving day!!!! ...the surgeon did a gap study on the esophagus and stomach. Unfortunately the gap was a lot larger than we hoped. Remi will most likely need an esophagus replacement in the future, but that will be a ways down the road. So thankful for our little girl and that she is able to finally feed! Giving all the glory to God!
Remi Belle Update 11/21/2018...
Remi is still recovering from her surgery, but doing well. They are keeping her on pain meds today and the anesthesia yesterday she is not herself yet, but all her vitals look good along with her respiration numbers. The surgeons did stop by and we talked to them about her esophagus gap. They said on full term babies with gaps of this size they would wait to do a surgery when the baby is between 8-12 months old. Obviously this leaves us with many questions, but we are starting to explore the possibility of having Remi transferred back to Indiana what that would look like, when, and how much that would all cost… We are so thankful the surgery went well and that Remi is doing well! Trying to stay focused on one day at a time. Praying the Lord continues to heal Little Remi, and that he would bring clarity to the next steps we should take in order to provide the best quality of life for our whole family.
This year we are thankful for, wet diapers, open baby eyes, a button nose, squeaky air leaks, dinging medical equipment, high sats, dsats, TPN, picc lines, g tubes, milk, warming beds, a great medical team, all the family and friends who have been there to love and support us, and for God to bless us as a family of three! (Martin Ryan Horine)
Remi update 11/26/18
Wow, Remi has made some great progress over the past week! She got her G-tube put in last Tuesday and surgery went as expected with no complications. Since then she has recovered nicely, and started getting breast milk put through her G-tube late on Wednesday! Since she has never had anything in her stomach they are feeding her slow and continuously through the G-tube. This will continue until she hits her full feeding amount which we may get to full feeds by the midpoint of this week. Once she is on full feeds they will start giving her the full amount all at one time, and then start feeding her every 3 hours instead of continuously. She has had no issues taking the milk, and she even started pooping for the first time over the weekend! …Respiration has also come along nicely in the last week. They put her vent on an Auto mode meaning she has to take all of her breaths on her own, unless she doesn’t breathe for a set period of time then the vent will kick back in. They first put her on a 3 second delay, and now they have increased that delay to 5 seconds. They are thinking about trying to take her breathing tube out on Wednesday and seeing how she does without it… Overall Remi has just done amazing since her surgery. Items to be praying about: she has another eye exam on Tuesday, her breathing tube coming out and staying out, getting to full feeds and being able to remove her PICC line, and that God would continue to stretch her esophagus and stomach closer together.
Some of the many ways our little Remi Belle likes to sleep ❤️
Remi Update 11/27/18
Remi had her eye exam this morning results for ROP came back as grade 1 (scale 1-5 5 being the worst) zone one. This was that same as last week which is positive news! She has also reached full feeds so they are going to take her PICC line out today! And they are going to try and extubate her breathing tube and move her onto a bubble CPAP machine today! Such a big day for this little girl. Praying that the Lord would give her strength today and that he would keep his healing hand on her body.
Remi update 11/28/18
Remi has now been on the Bubble CPAP machine since Yesterday around noon. They checked her CO2 levels and everything about two hours after the change and she looked great (actually she looked better then when she was on the vent). The Doctors are very pleased with how she is doing in all aspects respiration, good stools, and feeding well. They are going to start compressing her continuous feed into shorter times so that she can go to a bolus feed. The Doctors also said they want to get our consent to publish documents about Remi because they have never seen a baby the size of Remi with her esophageal atresia! Over all we are so thankful for the progress Remi has been making! The Doctors did say there is still potential for her to reject the CPAP machine with in the first 72-96 hours, so we are not totally out of the woods yet, but we give all the Praise to God for healing her and helping guide everyone who is involved in giving Remi care.
Remi Update 11/30/18
Remi is still doing great! She is still on the CPAP and doing well with her breathing. She’s up to 1719 grams. Which her weight gain has started to level off. They are going to change the amount of Fat’s and proteins she is getting to see if they can help her gain weight better. She did have a little bit of eye secretions the other day, and for the past 12 hours her poops have become more runny. They are going to run blood test to make sure she is not getting sick, and if she’s not sick changing her fats and proteins may also help with her poop consistency. Overall, she is doing great though! We continue to pray God’s healing hand would rest on her little body.
Remi update 12/3/18
Remi is still doing good. She is still breathing away on the CPAP machine. The area around her Gtube has developed an infection, but they are starting her on antibiotics and that should kill the infection… My heart is very heavy today though. We found out that our neighbors who have the 22 week baby that infection has spread to her whole body, and they are going to have to take her off support today. Out of respect and privacy I am not going to share the families name, but the Lord knows who they are please pray for them. I can’t possibly imagine how they are feeling, and I just ask the Lord to be in this situation.
Lord, I pray your spirit would fall on Winnie Palmer Hospital today like it never has before! We pray for miracles today!
Our 22 weeker friend has gone home to heaven. Praying for this family to have peace and comfort.
Remi Update 12/4/18
Remi is 10 weeks old today! I cannot believe it… It feels like just yesterday, but then it also feels like years ago, LOL. She is still doing great. Her Gtube infection is looking a lot better now that she is on antibiotics. The doctors are going to compress her feeds from 1.5 hours to 1 hour. They are also going to lower the amount of pressure she is receiving from the CPAP machine. The doctor today said she looks like she doesn’t need much pressure and they will start to slowly ween her off the pressure until she is just breathing oxygen only. They are also discussing moving Remi from POD 1 which is the most intensive care POD to POD3 which is less intensive care! So exciting and so great to see her doing so well with everything. We continue to pray for Remi, and that her Gtube is able to heal completely and with no infections. We also continue to pray for the family of the 22 weeker and there loss. We Pray that the Lord would continue to bring them comfort and healing.
Remi update 12/6/18
She’s still doing great. The doctors reduced the pressure she’s breathing down to six, from 9 when she first started on the CPAP. they want to try and wean her off all the pressure by early next so she’s just breathing oxygen... The have also reduced her feeds down to an hour today. Last time they reduced it to an hour the had to increase the time again because she didn’t tolerate it well!...So thankful for all the prays and support! Pray for continued healing and strength for little Remi.
Remi Update 12/9/18
Remi is off bubble CPAP today and is just breathing regular low flow oxygen! The nurse said the setting she is currently on are settings that she could be discharged at!!! So crazy!!! Just in awe of this little girl and how the Lord continues to heal her!
Remi Update 12/10/18
Remi is still doing great on the low flow oxygen, and is just being an overall rock star. Lots a of thing need to happen before Remi will actually be home, but discharge planning has begun!!! A Christmas miracle maybe brewing! We pray that the Lord continues to keep his hand a healing on Remi, and that he continues to keep his favor on us in this situation.
Remi Update 12/11/18
Remi had another eye exam today. Her ROP has progressed to stage 2 and still remains in zone 1. They are going to have a retina expert come look at her, and will most likely start giving her medicine for the ROP which will be injections into her eye. If that doesn’t work they would end up needing to do laser therapy…. Remi is still on low flow oxygen, but she’s had a couple episodes in the past 24 hours where her oxygen saturation level have dropped pretty low. The doctors aren’t terribly concerned about it yet. They said it could be positional, or secretions building up, or a number of other things causing this to happen. They said they would keep a close eye on here, and if she needs to go back on the bubble CPAP that’s what they will do, but for now they will leave her where she is an just monitor her…I was holding her last night during one of her episodes, and it pretty scary to see her drop that low. We just pray that the Lord would breathe for her and would help for these episodes to stop. We also pray for her eyes that the doctors would be able to stop the ROP from progressing and that she wouldn’t have any long term side effects.
Remi Update 12/12/18
Remi had a pretty rough day yesterday. She had a few more apneic episodes, and they started to become longer in duration. They ended doing an X-Ray and found that her right lung was starting to close up. So the doctors ended up putting her back on bubble CPAP, and restarting her Caffeine. They also tested for any bacterial and viral infections. All the test came back negative for any infection. Last night she looked pretty pathetic and just lethargic, But over night the nurses said she did a lot better and didn’t have any apneic episodes… For now the Plan is to let Remi rest and recover. She does have another eye exam tomorrow by a retina expert where she may be getting shots…. So thankful for the medical staff and for the Lord healing little Remi. We are just praying the Lord continues to give Remi strength and that he would place his healing hand on her body.
Remi Update 12/13/18
Remi is doing much better now that she is back on the Bubble CPAP. She is starting to get her energy back and becoming feisty again! She’s up to 1960 grams, 31% oxygen, and 8 peep (pressure). Remi also had the retina specialist come in and look at her eyes today. He said she’s not at the point where he would want to do injections into her eyes. They will continue to monitor her weekly, and there is still the possibility that she will not need any medical intervention. Remi is just so strong it truly amazes me. Praising God for all the things he has done for her, praying for continued healing, and praying specifically for her eyes to get better.
Remi Belle 12/14/18 ❤️
Our little princess is still doing good! She is happy to be back on the Bubble CPAP, and is breathing well again. Her weight, oxygen and peep all stayed the same today, no changes. The doctors are allowing her to rest up! We thank God for all he has provided this far. Praying for her eyes to be healed, and to not need treatments, also for her lungs to continue to strengthen! Thank you all for praying with us!
Remi Update 12/18/18
Remi is doing great. She weighs 2170 grams, still on bubble CPAP with 30% oxygen, and a peep of 6. She had another eye exam today and still has stage 2 ROP, but it has moved from zone 1 to zone 2. Which means it is starting to move away from the pupal and towards the outer eye which is good news!
Remi Update 12/19/18
So Remi had an eye exam yesterday morning, and we thought everything went well. But the eye doctor consulted with the retina doctor, and the retina doctor decided to come in last night to do his own exam. After the retina doctor did his exam he agreed that the ROP was moving away from the center of the eye which is good, but he said it has just begun to develop into stage 3. Since the location has change she will not need shots in her eyes, but due to it going to stage 3 Remi will need to have laser therapy done to correct the ROP. The only down side to the laser therapy is that she will lose some peripheral vision, but otherwise she will still be able to see normally. Remi is going in for the surgery tomorrow (Thursday) at 1:30. The plan is to leave her on bubble CPAP during surgery, and just sedate her. If anything were happen they could possibly intubate her, and knock her out during the procedure… Praying for a smooth procedure tomorrow. So thankful the ROP moved and she didn’t need injections in her eyes! Praise the Lord!
Please remember to pray for me as I go in for laser eye therapy today! ....(this is my modeling headshot )
Thank you all for praying for our little Remi Belle! She had some apneic episodes during the procedure and gave the OR team a run! When our Nurse and RT went to receive Remi there was a nurse sitting bedside poking Remi so that she would stay alert to breathe! Our team laughed, for they had not seen that before. Remi is so strong, and we are so proud of our girl and all she has been through. She is resting and breathing well on a setting the doctor called the “Remi special”. Grateful for this medical team and the many blessings The Lord has provided. ❤️
Quick Remi Update! She’s back on bubble CPAP today and doing great!
Remi is ready for Santa to come tonight!
12/22/18 Remi Belle update ❤️ Ryan and have had a virus since yesterday, and are praying it goes away soon! We will have to wait to see Remi until we are feeling better. On another note our darling little girl has had a good day. Yesterday infectious disease came in to see her gtube site because it has been red still. They started her on antibiotics and ran a culture which came back positive for staph. We believe it is part of the infection from before and the redness has already gone down! Her oxygen support was lowered again and she continues to gain healthy weight! We are praying Remi does not get what we have and that we may heal quickly!
We finally feel better and get to see our little girl again!!! Wearing the masks just to be on the safe side. Remi is doing great. She weighed in 2350 grams last night. She’s on a peep of 7, and 24% oxygen!
Full hearts today! ❤️ Remi Belle got some long missed tummy time, first time lounging in her pillow and mama and daddy got to come in after being sick for three days! Grateful for all God has done!
Age: 95 days : 13 weeks 4 days : 3 months 4 days : 38 weeks corrected
Weight: 2350g / 5lbs 3oz
Happy New Year!! ❤️ Remi is doing great! She is 14 weeks old, 38 weeks and 4 days corrected, she is at 24% oxygen, peep of 5, 43.5cm (17.12 inches) tall and weighs 2,460g (5lbs 4oz)!!! Remi decided, new year/new bed! She slept in her first crib last night, has a mirror, a soother with music and lights and links all in her cute crib! We are excited to see what God has in His plan for our little girl!
Remi Belle Update 1/2/19 ❤️ Our little Remi is doing good today! Tried her on highflow instead of Bubble CPAP, and she is not ready. Back to Bubble CPAP and she is much happier! ❤️ Look at that litttle face! grateful for God’s provision and guiding.
1/4/19 Remi Belle update ❤️ today daddy’s little princess is 101 days old!!! She is doing very well, and is awake more and continues to grow and strengthen. We love watching The Lord do His work! Praying for her gtube site as she continues an antibiotic for infection and for her follow up eye exam.
1/9 Remi Belle update ❤️. Remi is coasting smoothly and hit 6lbs!! Since stopping her caffeine Saturday, she is breathing well. She went up from +5 to +6 on her Bubble CPAP and stays at 24-25% oxygen! Her gtube site is still red, and she continues antibiotics. The gtube sutures were removed this morning, and we are praying that this helps with the irritation. (They usually fall out and Remi’s hadn’t).
Today is my due date! ❤️
WE ARE GOING HOME!!!!
Weather permitting Remi and Porshia will be on a medical transport to riley children's hospital in Indianapolis tomorrow morning. This has been a very long road not only for Remi to be stable enough to be transported, but to get all the ducks in a row to have this happen. We just want to say thank you from the bottom of our hearts to everyone who has been involved in this whole process. We also what to thank the following people/groups:
1. The entire team at Winnie Palmer! From the Doctors, to the surgeons, to the nurses, to the RT’s, to the reception teams, to the security teams! Everyone at Winnie has been absolutely amazing and we are so thankful for the care and support you have shown our family. It is sad to leave such an amazing team! Thank you!
2. My work, IMMI, has been absolutely amazing! Talk about a company that truly lives out its core values. Truly amazed at all the support you have shown us, and allowing me to work remote for 3+ months so I can be with my family. This season could have been so much more difficult for us, but IMMI was able to alleviate so much stress from my shoulders. Thank you!
3. ALL OF YOU! Family, friends, social media community you all gave so much from monetary donations, to kind words, to gifts for Remi and us, to praying for our family! Wow, really, Wow! Words of thankfulness and gratitude do not exist for how we feel about the community that has supported us! Thank you!
4. And obviously number 1 thanks goes to God! We just heard the other day that Remi is one of the youngest ever with a long gap esophageal atresia to survive. And I know It’s only because of God’s hand that she is with us today.
For Remi her next big steps will be in Indianapolis with her new team at Riley. I would suspect that her next big mile stones will be getting to breathe on Room air, and eventually having her atresia fixed.
Please continue to keep us in your prayers, and specifically tomorrow please pray for a smooth and safe transportation!
Remi Belle transport update 1/16 ❤️. Ryan and Blaize are driving our car and belongings back home this morning! (14hrs) Blaize flew in early this morning to help With the drive!! We thank you so much! Myself and Remi stayed at the hospital for weather clearance to fly home! We got the clearance and then the plane broke! I am staying at the hospital tonight with Remi. By lunch time tomorrow we hope to know if one of the two planes are available, if we have weather clearance and be heading home. We are praying for God’s timing and protection for this transport.
Remi Belle update 1/18 ❤️ today Remi took her first flight!! Earning VIP sky miles! She did great and slept the whole flight and continues to rest now! We are so grateful for everyone working so hard to make this happen!! We are safe and sound and in Indiana. What a day!
Remi Belle Update 1/19 ❤️. Praise The Lord!!! We are home and together again! Yesterday was a full day and Remi Belle handled it like a pro! Today she got switched to high flow from the bubble CPAP! We are praying that she transitions well and stays on the high flow. Also for the transition to a new hospital and team, that we may be blessed in this new space. We are turning Remi into a snow bunny!! ❄️❤️
Remi Belle update 1/23/19 ❤️ 41 & 5 corrected : 120 days old : 3155g : 6lbs 15oz! she LOVES her daddy!
Remi Belle is doing great. They are doing dilations on her esophagus and she has an eye exam today. Praying for her esophagus to grow exceptionally well, fast and strong! As well as for her lungs to strengthen so she may come off of oxygen!
Remi Belle update 1/24/19 ❤️ 41 & 6 corrected : 121 days : 7lbs! : still loves her mamaroo, paci, blowing bubbles and cuddling!
Remi is having a follow up eye exam tomorrow at 8am with the ROP specialist. The eye doctor yesterday saw something of slight concern. Please join us in prayer for God, the great physician, to heal Remi Belle’s eyes and for no further surgeries.
Remi Belle update 1/25/19:
Remi decided that she wants to see what the windy city looks like for her four month birthday!
…After two follow up eye exams this week by two different doctors it has been recommended that we go see a neonatal retina eye specialist in Chicago for Remi’s eyes. They Eye specialist will look at her, and decide if she needs another eye surgery. We are still working through all the details of transport and logistics, but the staff is moving quickly and she could be up in Chicago as soon as tonight. We are so thankful for the timing of all these events. If we were still in Orlando her next follow up wasn’t scheduled for another 4 week, at which point it could have been too late and Remi could have suffered permanent vision loss. Praising God for allowing the doctors to catch this in time, and praying that he continues to have his hand of protection over Remi’s life and health as well as helps keep Porshia and I energized.
Remi Belle update 1/28/19 ❤️. Today Remi had her eye exam consult with the eye specialist in Illinois. He believes she needs the surgery as her retina is detaching already, however he says she is at a good stage for the procedure. They will do a vitrectomy on Remi tomorrow. We are trusting God has brought her here for him to do this procedure and that he will be the hands of the medical team performing the surgery. She will be intubated and have general anesthesia. We are praying that the procedure will go wonderfully, with no complications and healing will be fast. ❤️
Remi had a good night, Weaning her vent settings, extubate today, eating full feeds, eye patches will come off at 2pm. Follow up eye exam sometime today. praying she did not hemorrhage!
Remi’s eyes look good from the front exam today! They will do a full exam Friday or early next week. (Praying for Friday!). Please pray for Remi Belle and the extubation today. There has been what feels like chaos in the unit today. We are praying that it stay far from Remi with the protection and peace of The Lord. For her to have a calm and smooth extubation and transition back onto high flow.
Praise God!!! Remi is back on high flow!!! Thank you all for praying. She is doing very well right now. ❤️
Remi Belle update 1/31 ❤️. Remi had a great night, and is opening her eyes more today. They are very red and she doesn’t seem bothered by it. The results of her eye exam tomorrow will determine if we need to stay for more follow ups or not. We are praying she is healing wonderfully and that we may go home (back to Riley) this weekend!
Remi Belle update 2/2/19❤️ Little Remi Belle has been doing very well lately. Her eyes look good and as soon as a bed opens up at Riley, prayerfully Monday, we will be headed back to Indy! She has gone down on her respiratory support to 22% & 2.5Liters, that’s great! She continues strong at those settings. We are praying for resolve of her ROP issues and gtube redness!
Remi Belle update 2/4/19❤️. Remi is still waiting for a bed to come available at Riley. Praying for a bed tomorrow! Her eyes are healing well, gtube site is less red again, and she is breathing 21% (room air) and 2.5 liters! She is so strong! She weighs 3510g (7.7lbs), length 48cm (18.9inches), 132days old/ 18 weeks tomorrow! Woo!! Praising God for all he has brought her through, and asking for his continued blessings for our little Remi Belle ❤️
Remi Belle update 2/5/19 ❤️. Remi is having a good day! She is in the ambulance and en route to Riley!
Remi Belle update 2/6/19 ❤️. Remi Belle had a long day yesterday. She made it safely back to Riley in Indiana around 6:30pm. She has been sleeping and resting all night and morning. One of her favorite things to do is sleep on her paci!
Remi Belle Update 2/7/19 ❤️ our sweetie is having a good transition back to Indy! She is on 23% oxygen and 2Liters today. She does still have redness around her gtube that we are praying resolves. They continue to stretch her esophagus twice daily and we pray for God to help in this stretching so it may happen quick and easy! ❤️I
Remi Belle update 2/12/19 ❤️. Today we are grateful for Remi’s great strides as she was born 20 weeks ago at 24 & 4, 1lb 6ox, 12 inches. Today she is 44 weeks and 4 days old corrected, 8lbs 2oz, 19.2 inches and has come so very far! We thank God for his many blessings! Praying that He helps stretch her esophagus and prepare her for her procedure ❤️
Remi Belle Update 2/15/19 ❤️. Remi is down to 0.25L on her oxygen! She is doing well with that and has smiles again! She has been more alert and her self the last few days, and we are so grateful for it! We go into this weekend praising God for all he has provided for our little Remi Belle!
[45weeks corrected : 3850g]
Remi Belle Update 2/19/19 ❤️. Remi Belle is still doing very well! She has been loved on by all four grandparents this weekend and has had some good tummy time too! She has moved to bolus feeding to stretch her stomach more in preparation for surgery and is tolerating it well. The little hunny is growing and strong! She is also on 1/8L of oxygen! We continue to pray for her lungs, eyes, heart, esophagus, gtube site and overall well being! We thank God for all of her progress!
Remi Belle update 2/20/19 ❤️ Eye exam today showed her scaring is the same, this can take weeks to clear up. She will have weekly exams until this happens. The surgeons are trying to do the gap study this afternoon if radiology has time. Tomorrow Remi will be tried on room air! We are praying for continued blessings and divine healing.
[148 days : 3995g]
Hi! I am Remi Belle! I was born at 24 weeks and 4 days, Sept 25th 2018, while my parents were on vacation in Florida. I was just over 15 weeks early, was unstable, weighed 1lb 6oz and was 12in long. For the first two months of my life I was intubated (both the oscillator and jet ventilator) and TPN & lipids for nutrition. Since birth I had a velamentos cord insertion, esophageal atresia, brain bleeding, an extra digit, a few abnormal vertebrae, small- injured kidneys that made me unable to have urine output for days at a time and then too much output for days, PDA (opening between two major heart blood vessels, mine resolved itself), PFO (a whole in my heart, which also resolved itself), pneumonia, MSSA staph infection, UVC (umbilical vein catheter), multiple PICC lines, IV’s, five blood transfusions, hydrocortisone a number of times, epi drip, apneic episodes, 2 different g-tubes, g-tube irritation, ROP and a narrow lower-left pulmonary vein. The velamentos cord insertion is an unprotected umbilical cord. Had I stayed in the womb or been vaginally birthed, I would have ruptured my cord and bleed out before the Doctors could get to me. My EA is a “long-gap Esophageal Atresia - no fistula”. Meaning, my esophagus is not connected to my stomach. So I was not able to get milk until I got my g-tube, November 20, 2018. I have a suction tube that gets the saliva/ secretions from my esophagus pouch. I have had two eye surgeries for the ROP. One was laser treatment (12/20/18) and the other a vitrectomy (1/29/19), both have been successful. I came off of all respiratory support for the first time Feb 21, 2019, and am tolerating well. Currently, I am having weekly eye exams and the surgeons are working on stretching my esophagus so that they may connect it to my stomach! This might take a few months and once done, I will learn how to eat orally! The doctor’s will be monitoring my lower left pulmonary vein that is narrow to see that it grows in proportion with my whole body. They are checking that my spinal cord is not tethered and I am having hearing tests done to see that my hearing is good, and I don’t have excess fluid.
I have had four ambulance rides, one private medical plane ride and lived in three different NICU’s, in three different states.
I love my paci, looking around, kicking around, smiling, music, cuddles with mama and daddy, tummy time and my mamaroo swing!
[5months : 153 days : 46&3 corrected]
[4160g : 9lb 2oz : 52.25cm : 2.5in]
We are grateful for your support and praying through the last five months! Thank you! Warmly, Ryan, Porshia & Remi ❤️
Remi Belle Update 2/26/19 ❤️. Remi’s spinal cord ultrasound showed that her cord is NOT tethered! Praise God! She is doing good... and likes Christmas music! Tomorrow she has her follow up eye exam and we are praying for improvement so that she may go longer in between her exams!
Remi Belle Update 2/27/19 ❤️. Remi’s eye exam today went well. Praise The Lord!! She will now begin bi-weekly exams, and we pray for great vision! We also are praying tonight for her hearing diagnostic tomorrow. We pray that she has no excess fluid and no hearing issues. ❤️
Remi Belle Update 2/28/19 ❤️. Today’s hearing diagnostic had conflicting results and therefore is inconclusive. We will do the test again in a few weeks and we pray for an accurate reading! Otherwise we are celebrating good health, growth and progress! We are so grateful for our little Remi Belle.
Remi Belle Update 3/5/19 ❤️. A then and now for you! We are so amazed and grateful for The Lord’s favor on our little Remi Belle.
Tomorrow Remi will go into the OR for her next gap study. They are going to sedate her, possibly intubated her. We are praying for guidance and blessing over the medical team, for The Lord’s hand of protection on Remi Belle, a swift recovery and to find great growth! ❤️
Remi Belle did great during the procedure! It was very quick (once they were ready for her). After the procedure Mama touched her and started talking and Little Remi Belle gave us the biggest smile!! She is back in her room recovering and is getting a little touch of oxygen for now. She gets to eat again at 10!!
Her gap is now just over 2 vertebrae apart. It was 4 vertebrae apart on Jan 21! They will continue dilations twice daily and do this study again in two- three weeks. Praying for easy stretching! Thank you everyone who prayed for our little hunny!❤️
Remi Belle Update 3/19/19 ❤️ Miss Remi Belle has been doing very well, and is growing, growing, growing! Her next gap study is Thursday, March 28 and we are praying for great results that show she may be repaired!
Remi Belle Update 3/25/19 ❤️
Little Remi Belle is SIX MONTHS OLD! 11lbs 1oz, 22 inches, 181 days old, 50 weeks corrected, 25 weeks old (tomorrow)! We are so blessed to have this little one in our lives.
She has her biweekly eye exam tomorrow, and gap study Thursday. We are praying for big news Thursday!
Remi Belle Update 3/26/19 ❤️ Pray for Miss Remi Belle’s eyes! The scarring is getting better, however it is moving. Our eye doctor is questioning why that’s happening. The retina specialist will be in Friday to take a look. Praying that her eyes heal completely and she may have great vision!