Omg floridasian, I'm so sorry. I can't even begin to imagine what you're going thru. I'm praying for you and Kyle so much. He's gonna pull thru this. Just know that you did absolutely everything you could. We're all here for you.
After the BFP...TTC #1 "Graduates"
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JCM
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Oh Floridiasian I am so sorry. I've been crying ever since I came on to read your update. I am praying for you and your son. Stay strong and rest when you can. Please check in and let us know how you and Kyle are doing. Your husband is also in my prayers. I can't even begin to imagine going through this. So devastating. Sending big hugs and positive thoughts your way.
ERosePW
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Floridasian, I just wanted to pop in and say how terribly sorry I am that this happened. Please know that I'm thinking about you and praying for you and little Kyle and the rest of your family. I'm so sorry for the loss of your sweet girl Paige. I know there is nothing anyone can say to soothe your pain right now, but I wanted to let you know I'm here and I'm thinking about you.
froggyfrog
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Floridasian, I'm so incredibly sorry to hear. I couldn't imagine how difficult this is for you and your husband. I'm praying for both of you, and praying for your sweet little kyle. I'm sure your little Paige will be her brothers guardian angel and he will pull through to be a happy healthy little boy!
savvysaver
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Floridasian, I am so sorry. I was so worried when you hadn't posted in a few days. I am so sorry you lost your sweet baby Paige. I am praying for Kyle that he stays strong and continues to do well. Also prayers and hugs for you. Please update us when possible and we will continue to pray.
floridasian
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Kyle is currently hooked up to 4 machines and on 6 meds through his IV, plus his feeding tube and a bunch of other monitoring lines and two jaundice lights. They weren't sure if those constant movements he had yesterday were seizures or not because he's too small to be tested for it so they also put him on an anti-seizure medication today in addition to the pain medication. He's a lot calmer today. The culture came back positive from a few days ago so he does have an infection so he'll be an antibiotics for the next few weeks. His labs this morning came back good so at least that's one encouraging sign.
Highlights of the day was after I fed him the tiny amount of breast milk with the swab the nurse gave him a small pacifier dipped in breast milk and put it in his mouth. He immediately started sucking on it! We thought he was spit it out right away but he just kept sucking away! He still had it in his mouth when we left an hour and half later.
That's all I have for now. Will go back to see him in a little bit.
Please continue for pray for my little Kyle. Doctors kept saying he's "critically ill" and it just breaks my heart!
Highlights of the day was after I fed him the tiny amount of breast milk with the swab the nurse gave him a small pacifier dipped in breast milk and put it in his mouth. He immediately started sucking on it! We thought he was spit it out right away but he just kept sucking away! He still had it in his mouth when we left an hour and half later.
That's all I have for now. Will go back to see him in a little bit.
Please continue for pray for my little Kyle. Doctors kept saying he's "critically ill" and it just breaks my heart!
ERosePW
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I'm so glad you checked in with an update on Kyle! I've been thinking about you ALL day. Continued prayers. I'm so happy he kept sucking on the pacifier! Those types of responses are definitely a step in the right direction. 
floridasian
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Thanks everyone for your kind words and encouragements. It really meas a lot to me. I consider all of you my friends and your support definitely helps in me get through this.
I started keeping a journal on Kyle's progress and I'll just copy and paste it here for the update.
I had to quit my job this week. I was just not physically, emotionally, or mentally capable of working right now since I would be out for at least three months. My boss was understanding and said he would welcome me back if I decided to go back to work in the future. I cannot make any decisions for the future right now. Between going to the hospital three times a day (even though we’re super lucky that it’s less than 15 minutes away), pumping every three hours (four at night), getting enough rest for myself so I can heal, there’s literally no time left for anything else. The good news is that my incision is healing very well. Every time the nurses and doctors checked my incision they were always amazed how well it was healing. I can now walk around and stand up *almost* straight up with no pain. The other good news is that I have plenty of milk! Who would have thought these tiny 32A chests can produce that much milk! I am also grateful that my in-laws came and help with cooking, household chores and taking care of me.
The next two days were still rough for Kyle. He continued to have seizure-like movements and was put on anti-seizure meds although his movements were not as drastic. We still didn’t know if those were seizures because they weren’t able to perform any type of testing on him. The only way to tell for sure was to conduct an EEG test which required those little tape things attached to his head and with the oscillator he was on all they would pick up are the oscillating movements. So they were not saying that he for sure was having seizures but he was being treated as if he did and it seemed to have helped.
June 10th – Kyle was one week old today! We were told that he had a rough night. He was still having seizure-like activities. He did have an infection as the blood culture they took a few days ago did grow and they were able to identify the type of infection so they were able to give him the specific antibiotics to treat it. They had concerns that there might be fluid built-up in his brain because his head seemed to have gotten bigger. They also did another head ultrasound and confirmed that he had a Grade IV brain bleed on the left and the suspected Grade III brain bleed on the right looked like it was actually a Grade IV as well. This was devastating news of course. I kept googling success stories of babies having Grade IV brain bleeds that resolved on their own and went on to become normal children. There were a few but most did have some form of disability. However one thing was for sure – with babies you never know what they are capable of so you can never say with 100% certainly what is going to happen. We’ll just have to wait and see. We are going to be hospital three times a day to see him. When we went there in the evening we saw the nurse moving him to his back (they move him from left, right, and back every six hours) and we were told that she had moved him earlier and he didn’t seem to like it and he started desatting to the low 80’s. She had to turn up his oxygen level and we were watching him to make sure his stats were up but by the time we left it was still hovering at around 84-86 (they would like it be around 89-96 – below 88 means he’s desatting and above 97 means he probably doesn’t need that much oxygen and the setting can be turned down a bit). His heart rate was also through the roof – it was in the mid 190’s in the morning and was still in the low to mid 180’s in the evening. We were told that it might have been caused by anemia so he received two blood transfusions today in addition to a platelet transfusion earlier today. This made the total number of blood transfusions to three to date.
June 11th – we were told that Kyle had a pretty good night last night. When we got there in the morning he was on 45% oxygen and he was holding steady at around 94-97%. Heart rate was down to high 170’s. He looked pretty comfortable today with no seizure-like movements, just regular baby movements. They are still watching his brain closely for any fluid buildup. Today Kyle was supposed to have a PICC line put in (instead of getting IV through a line in his belly button that needed to be replaced every 1-2 days) but for some reason they weren’t able to do it so they’ll try again tomorrow. He also started getting 1ML of breast milk every three hours today. Nurse Beth took his footprints today both on a card and on his hospital birth certificate. She also gave us a baby journal and put his used items in there.
We met with Kyle's doctor today and went over his second head ultrasound. Yes it’s been confirmed that he has Grade IV brain bleeds on both sides which means he’s most likely going to have some type of disability and delays. However it’s not something that is going to cause immediate death. Obviously it’s still too early to tell what exactly is going to happen to him developmentally-wise so we are not giving up on him, especially when all of his other stats are stabilizing. He’s telling us he wants to continue to fight and we will fight with him. Beth thinks he’s pretty much plateaued on this oxygen level which means he’ll probably be on the ventilator for some time. By the time we left tonight, he was on about 42% oxygen and his heart rate was down to the low 170’s. He’s also on one LED jaundice light instead of two fluorescent lights.
DH called a few funeral homes today for Paige. I just don’t think I can do it myself. Since we don’t really have strong ties to the town we live in and we don’t know if we’ll be living here for the rest of our lives it probably makes more sense to have her body cremated so we can take her ashes with us wherever we go.
I started keeping a journal on Kyle's progress and I'll just copy and paste it here for the update.
I had to quit my job this week. I was just not physically, emotionally, or mentally capable of working right now since I would be out for at least three months. My boss was understanding and said he would welcome me back if I decided to go back to work in the future. I cannot make any decisions for the future right now. Between going to the hospital three times a day (even though we’re super lucky that it’s less than 15 minutes away), pumping every three hours (four at night), getting enough rest for myself so I can heal, there’s literally no time left for anything else. The good news is that my incision is healing very well. Every time the nurses and doctors checked my incision they were always amazed how well it was healing. I can now walk around and stand up *almost* straight up with no pain. The other good news is that I have plenty of milk! Who would have thought these tiny 32A chests can produce that much milk! I am also grateful that my in-laws came and help with cooking, household chores and taking care of me.
The next two days were still rough for Kyle. He continued to have seizure-like movements and was put on anti-seizure meds although his movements were not as drastic. We still didn’t know if those were seizures because they weren’t able to perform any type of testing on him. The only way to tell for sure was to conduct an EEG test which required those little tape things attached to his head and with the oscillator he was on all they would pick up are the oscillating movements. So they were not saying that he for sure was having seizures but he was being treated as if he did and it seemed to have helped.
June 10th – Kyle was one week old today! We were told that he had a rough night. He was still having seizure-like activities. He did have an infection as the blood culture they took a few days ago did grow and they were able to identify the type of infection so they were able to give him the specific antibiotics to treat it. They had concerns that there might be fluid built-up in his brain because his head seemed to have gotten bigger. They also did another head ultrasound and confirmed that he had a Grade IV brain bleed on the left and the suspected Grade III brain bleed on the right looked like it was actually a Grade IV as well. This was devastating news of course. I kept googling success stories of babies having Grade IV brain bleeds that resolved on their own and went on to become normal children. There were a few but most did have some form of disability. However one thing was for sure – with babies you never know what they are capable of so you can never say with 100% certainly what is going to happen. We’ll just have to wait and see. We are going to be hospital three times a day to see him. When we went there in the evening we saw the nurse moving him to his back (they move him from left, right, and back every six hours) and we were told that she had moved him earlier and he didn’t seem to like it and he started desatting to the low 80’s. She had to turn up his oxygen level and we were watching him to make sure his stats were up but by the time we left it was still hovering at around 84-86 (they would like it be around 89-96 – below 88 means he’s desatting and above 97 means he probably doesn’t need that much oxygen and the setting can be turned down a bit). His heart rate was also through the roof – it was in the mid 190’s in the morning and was still in the low to mid 180’s in the evening. We were told that it might have been caused by anemia so he received two blood transfusions today in addition to a platelet transfusion earlier today. This made the total number of blood transfusions to three to date.
June 11th – we were told that Kyle had a pretty good night last night. When we got there in the morning he was on 45% oxygen and he was holding steady at around 94-97%. Heart rate was down to high 170’s. He looked pretty comfortable today with no seizure-like movements, just regular baby movements. They are still watching his brain closely for any fluid buildup. Today Kyle was supposed to have a PICC line put in (instead of getting IV through a line in his belly button that needed to be replaced every 1-2 days) but for some reason they weren’t able to do it so they’ll try again tomorrow. He also started getting 1ML of breast milk every three hours today. Nurse Beth took his footprints today both on a card and on his hospital birth certificate. She also gave us a baby journal and put his used items in there.
We met with Kyle's doctor today and went over his second head ultrasound. Yes it’s been confirmed that he has Grade IV brain bleeds on both sides which means he’s most likely going to have some type of disability and delays. However it’s not something that is going to cause immediate death. Obviously it’s still too early to tell what exactly is going to happen to him developmentally-wise so we are not giving up on him, especially when all of his other stats are stabilizing. He’s telling us he wants to continue to fight and we will fight with him. Beth thinks he’s pretty much plateaued on this oxygen level which means he’ll probably be on the ventilator for some time. By the time we left tonight, he was on about 42% oxygen and his heart rate was down to the low 170’s. He’s also on one LED jaundice light instead of two fluorescent lights.
DH called a few funeral homes today for Paige. I just don’t think I can do it myself. Since we don’t really have strong ties to the town we live in and we don’t know if we’ll be living here for the rest of our lives it probably makes more sense to have her body cremated so we can take her ashes with us wherever we go.
savvysaver
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Still praying for Kyle, you and your DH. Kyle definitely sounds like a fighter.
I hope Kyle can get the PICC line soon, it is better than an IV. Great job on all the pumping, I know it is a lot of work pumping every 3 hours but I am glad you are getting a lot of milk! Thanks for the update.
I hope Kyle can get the PICC line soon, it is better than an IV. Great job on all the pumping, I know it is a lot of work pumping every 3 hours but I am glad you are getting a lot of milk! Thanks for the update.
floridasian
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Moni - DH actually preferred traveling back and forth so he could do some work from home (he's been taking time off with me since May 20th). And my in-laws are still here helping out as well and making us dinner every night (much appreciated!)
Here's a picture of Kyle from yesterday. He's off the ventilator now and on CPAP. So far he's trying hard to adjust. With the CPAP he's still getting oxygen but he's breathing 100% on his own while the ventilator was doing all the breathing for him.
Here's a picture of Kyle from yesterday. He's off the ventilator now and on CPAP. So far he's trying hard to adjust. With the CPAP he's still getting oxygen but he's breathing 100% on his own while the ventilator was doing all the breathing for him.
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savvysaver
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Way to go Kyle! That is great he is off the vent and on the CPAP. What a strong little fighter. Thanks for sharing such a sweet picture, my girls had the same little swaddles in the NICU.
misaacs117
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Floridasian
I have to send you my love, strength, and lots of prayers! I can't imagine what your going through. Stay strong and I'll be praying for Kyle!
I have to send you my love, strength, and lots of prayers! I can't imagine what your going through. Stay strong and I'll be praying for Kyle!
floridasian
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Well, Kyle only lasted one whole day on the CPAP before he had to be put back on the ventilator. He was doing so well on it but it really tired him out and his stats kept dropping so they decided to put him back on the ventilator right away.
He actually lost a little bit of weight since he was born. He was 920 grams when he was born and as of the last weigh in on Saturday he was down to 900 grams. Supposedly it's pretty common for newborns to lose a some weight, and even more so for preemies so I'm not too concerned.
Haven't heard from you in a while, Michelle? How are you doing?
By the way I started a blog to detail Kyle's progress for family and friends. It probably has way too much information than you'd like to know but if you're interested in reading the nitty gritty of the details please feel free to check it out here: https://micropreemiemom15.blogspot.com/
He actually lost a little bit of weight since he was born. He was 920 grams when he was born and as of the last weigh in on Saturday he was down to 900 grams. Supposedly it's pretty common for newborns to lose a some weight, and even more so for preemies so I'm not too concerned.
Haven't heard from you in a while, Michelle? How are you doing?
By the way I started a blog to detail Kyle's progress for family and friends. It probably has way too much information than you'd like to know but if you're interested in reading the nitty gritty of the details please feel free to check it out here: https://micropreemiemom15.blogspot.com/
savvysaver
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I am sorry Kyle is back on the vent but it is important to keep those stats looking good. Both of my twin preemies dropped quite a bit in weight the first few days, I don't remember how much though, I would have to look back at my notes. I know you mentioned that Kyle was taking 1ml of breast milk, does he also get TPN through his PICC? Thanks for sharing your blog, I will definitely follow along.
misaacs117
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Floridasian
I am doing well! We decided to stop with the IUIs and no movement on IVF at this time. Just doesn't seem finacially possible right now. However, we are still trying on our own even though our percent of success is maybe like 2% if any. The good news is my digital opk said I DID Ovulate which doesn't happen without medication. I am thinking of about maybe trying clomid again since I never tried it while taking metformin for the PCOS. Or doing another injectable cycle since I still have medication left. Just thinking about the options.
I am still keeping Kyle in my prayers! Hope he keeps getting stronger and healthier!
I am doing well! We decided to stop with the IUIs and no movement on IVF at this time. Just doesn't seem finacially possible right now. However, we are still trying on our own even though our percent of success is maybe like 2% if any. The good news is my digital opk said I DID Ovulate which doesn't happen without medication. I am thinking of about maybe trying clomid again since I never tried it while taking metformin for the PCOS. Or doing another injectable cycle since I still have medication left. Just thinking about the options.
I am still keeping Kyle in my prayers! Hope he keeps getting stronger and healthier!
beaglemom
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Good luck Michelle. Try to squirrel away as much as possible for a future IVF. If you are lucky you will get prego on your own & have a nice start up fund for the baby! I would def use the meds before they expire. Anything is possible. I def know the stress of the money part. We just financed ours.
savvysaver
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Hi Michelle!
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