So, today is day #5... I'm starting to feel the emotions now of not having our baby home with us. I have butterflies every morning getting ready and the drive to Children's to see him, following the turns and curves of the never ending hallways, the elevator ride to the 4th floor, the long hallway back to the NICU, the wash station, and then the final walk towards his bed to see my bundle of joy wrapper smug as a bug....
and then at night I have to peel away my fingertips one by one sobbing my heart out because he isn't coming home with me. It's been a rough few days for me.
Little guy was asleep when we got there that's what he does best!! They were able to wean off his oxygen. Decreasing his IV fluids as they increase his feedings. He is still unable to control his body temperature but that will just take time. His IV went bad so they took that out so we can start to get him dressed in nice fuzzy warm sleepers!
BIG BROTHER Eli came to visit. He is so precious with Ethan. My heart melts everytime they are together. So the attn span that Eli has is about 3 minutes! We were introduced to the 'siblings clubhouae'. It's a wonderful place to take siblings where they have volunteers that will play with the kiddo's. They may go twice a day for an hour and half at a time. They have a puppet show, they can paint or color, lots of toys, and games. Needless to say I'm so thankful they have that for Eli so everyone is happy in the end!
I did have a slightly minor problem with a nurse today. So his orders for feedings are pretty straight forward. If he breastfeeds for 10 minutes then no need to supplement, if not then her gets the remainder either bottlefed or down his NG. So little guy will not take a bottle we have tried 10 different ones. But I have gotten him to latch successfully, just wears him out so easily. This is going to be what keeps us there the longest. No plans for discharge at all at this point. The issues with the bottles are probably due to the shape of his mouth and to learn the right sucking technique... Which I know he can do because he nurses well when he is awake.
Wednesday, August 22, 2012
Tuesday, August 21, 2012
Admitted to Children's Hospital
Sunday, Ethan should have come home with us, but instead he got transferred to children's main campus 2 days postpartum. Shortly after my last update the neonatologist came into my room and said there were some issues on that mornings chest xray. It picked up an unusually dilated section of the small intestine. They did an abdominal X-ray which confirmed the possible bowel obstruction. She aid there was nothing more she could offer but little man would need to be transferred to children's main campus right away. They scooped little man away in this little spaceship.
By 11:30, we got to see him. They had done additional lab work, abdominal X-rays, and u/s kidneys. He was having multiple stools and pee was starting to pickup. His oxygen levels were better, they wanted to wean this down, he was on 30% and .6 liter air flow. His og was still to suction. Now we just wait and see how he does through the night.
On Monday, he looked absolutely beautiful. His oxygen levels were in the low 90's, now on just air liter flow of 0.3. They og was to gravity and not putting much of anything out. We got there just in time for care rounds where the neonatologist, nurse practitioner, and nurse all talk about what has happened, test results, and plan for the day. His labs all look good except his hgb was 22, normal 12-26. Means his blood is a little thick. X-rays are coming back better, this am showed the dilation of the bowel gone. So they switched his og to ng, so I could start breast feeding and I'd that didn't go well they would just give him breast milk through his ng. Wean down his air flow, they only need his sats to be >80%, seems insane I know!!! But with his heart conditions this would be normal due to the mixing of venous and arterial blood blow. He has been maintaining in the low 90's. He certainly tires very easily, even with a simple diaper change. He will start breathing 60 times a minute. Normal for a small kiddo is about 40ish. This again goes hand and hand with his heart condition.
So how did his day go, well auntie Megan got some wonderful bonding time. He was awake for nearly 2 hours with her! I got some really cute pictures once I find the time to upload them. Attempted nursing but he just gets completely exhausted by the time we untangle all the lines and get him situated... He is asleep!
We met tons of people at least 20, not exaggerating. But each and every one of them have been extremely helpful. I'm so thankful to live so close to a children's hospital known across the world. He is the greatest hands and we continue to take things day by day.
We have a busy day, big brother is coming up to see Ethan. He asks about him every single day. I'm excited to get to spend the time with both of my boys. I can't wait for Ethan to be home!!!
I cannot thank each and every one of you enough for all of your prayers and support! Ethan is already a fighter and will continue to strive!
By 11:30, we got to see him. They had done additional lab work, abdominal X-rays, and u/s kidneys. He was having multiple stools and pee was starting to pickup. His oxygen levels were better, they wanted to wean this down, he was on 30% and .6 liter air flow. His og was still to suction. Now we just wait and see how he does through the night.
On Monday, he looked absolutely beautiful. His oxygen levels were in the low 90's, now on just air liter flow of 0.3. They og was to gravity and not putting much of anything out. We got there just in time for care rounds where the neonatologist, nurse practitioner, and nurse all talk about what has happened, test results, and plan for the day. His labs all look good except his hgb was 22, normal 12-26. Means his blood is a little thick. X-rays are coming back better, this am showed the dilation of the bowel gone. So they switched his og to ng, so I could start breast feeding and I'd that didn't go well they would just give him breast milk through his ng. Wean down his air flow, they only need his sats to be >80%, seems insane I know!!! But with his heart conditions this would be normal due to the mixing of venous and arterial blood blow. He has been maintaining in the low 90's. He certainly tires very easily, even with a simple diaper change. He will start breathing 60 times a minute. Normal for a small kiddo is about 40ish. This again goes hand and hand with his heart condition.
So how did his day go, well auntie Megan got some wonderful bonding time. He was awake for nearly 2 hours with her! I got some really cute pictures once I find the time to upload them. Attempted nursing but he just gets completely exhausted by the time we untangle all the lines and get him situated... He is asleep!
We met tons of people at least 20, not exaggerating. But each and every one of them have been extremely helpful. I'm so thankful to live so close to a children's hospital known across the world. He is the greatest hands and we continue to take things day by day.
We have a busy day, big brother is coming up to see Ethan. He asks about him every single day. I'm excited to get to spend the time with both of my boys. I can't wait for Ethan to be home!!!
I cannot thank each and every one of you enough for all of your prayers and support! Ethan is already a fighter and will continue to strive!
Sunday, August 19, 2012
Updates from day after delivery
Thank you all for praying and thinking of us. I will be posting updates or changes here. I have had an overhwleming amount of phone calls and messages. Each one of them mean the world to me, but I need to be with Ethan and cannot take our phones with us into the NICU. So I figured what a better place than here. If you are new to my blog, please read my 1st entry. It will explain everything...
On 8.17.12 started our family's journey along Ethan. He remains so strong. He is in the NICU at Riverside and will not be going home with us as we are d/c'd later today. His little heart & lungs are requiring additional oxygen. They have been able to wean this down to 50%. He is not taking well to bottles but he will briefly latch on and off my breast. His mouth is very tiny and we have some difficulty with this also. He is dehydrated so they decided to place a feeding tube into his nose that will be directly in his stomach to increase nutrition and hydration.So between me, bottles, and bolus feeds we hope he is headed in the right direction from that standpoint.
They did a repeat echocardiogram (ultrasound of his heart). We had one done on him while I was pregnant which confirmed the Complete Balanced AVSD (described in an earlier post). The ventricular defect is much larger and pulmonary hypertension (high blood pressure in the lungs). They are going to see how he does through the night (so far well). They make rounds with the team of nurses and doctors at the bedside in the am, so we will know more of a plan at that point. Mainly if he needs to be at the Childrens main campus where his Cardiologist will be.
Matthew and I are trying to be as strong as we can. He has been my rock throughout this whole journey. He has been by my side since day 1. I love him more today than I bet have.
Eli got the opportunity to meet his little brother. I have been anxious to see my not so little boy. He was so nervous, but by the time he left he was kissing and patting his back. It was precious. I will never forget his smile from ear to ear, his little nervous giggles, and the sparkle in his eyes. He wasn't looking at all the tubes, bells, and whistles. He didn't see his features of Ds....
Eli saw his baby brother Ethan who he loves so much already! As Eli was talking about his beautiful light brown hair, eyes, nose, mouth, counting his 10 fingers and 10 toes. I looked through Eli's eyes and for the 1st time I saw my son, Ethan Matthew not a diagnosis...
On 8.17.12 started our family's journey along Ethan. He remains so strong. He is in the NICU at Riverside and will not be going home with us as we are d/c'd later today. His little heart & lungs are requiring additional oxygen. They have been able to wean this down to 50%. He is not taking well to bottles but he will briefly latch on and off my breast. His mouth is very tiny and we have some difficulty with this also. He is dehydrated so they decided to place a feeding tube into his nose that will be directly in his stomach to increase nutrition and hydration.So between me, bottles, and bolus feeds we hope he is headed in the right direction from that standpoint.
They did a repeat echocardiogram (ultrasound of his heart). We had one done on him while I was pregnant which confirmed the Complete Balanced AVSD (described in an earlier post). The ventricular defect is much larger and pulmonary hypertension (high blood pressure in the lungs). They are going to see how he does through the night (so far well). They make rounds with the team of nurses and doctors at the bedside in the am, so we will know more of a plan at that point. Mainly if he needs to be at the Childrens main campus where his Cardiologist will be.
Matthew and I are trying to be as strong as we can. He has been my rock throughout this whole journey. He has been by my side since day 1. I love him more today than I bet have.
Eli got the opportunity to meet his little brother. I have been anxious to see my not so little boy. He was so nervous, but by the time he left he was kissing and patting his back. It was precious. I will never forget his smile from ear to ear, his little nervous giggles, and the sparkle in his eyes. He wasn't looking at all the tubes, bells, and whistles. He didn't see his features of Ds....
Eli saw his baby brother Ethan who he loves so much already! As Eli was talking about his beautiful light brown hair, eyes, nose, mouth, counting his 10 fingers and 10 toes. I looked through Eli's eyes and for the 1st time I saw my son, Ethan Matthew not a diagnosis...
Saturday, August 18, 2012
Ethan is here!!!!!
Thank you for all your love, prayers, and support.
Friday, August 17, 2012
IT's BABY TIME!!!
I'm 38wk 4 days. I went to my dr appt today and Im 4cm and they couldn't feel the sac. The dr looked with the speculum and saw a sac of fluid which was leaking. I've been leaking fluid! Really?!?! She assured me I had plenty of fluid at my last appt. Not having regular contractions, so pitocin has been started. Waiting to get some regular contractions going so i can get the epidural! I was a wreck when they told me it was time (like I had not known this day was coming!!) I'm doing a lot better and have a wonderful nurse. Once little man is here I will send updates as we are settled. Thank you all for your continued support and prayers. I love you all!
Friday, August 10, 2012
Almost 38 weeks!
OMG!!!!
I cannot believe I'm this close to finally holding my beautiful baby boy!!! I've had an overwhelming sense of relaxation over the last 24hrs. Well maybe not physically lol! I've been getting some fairly intense contractions but nothing to set me into labor. Went to the dr again today which was a much more pleasant visit. I'm 3 cm, almost 100% thinned! WOW!! She also mentioned if I have not had him by the 20th they would want to do an induction. I've been tossing the idea around but I'm completely comfortable with this now!! I still hope to go into labor naturally. This is the week to be pulling all those strings lol! I plan on working through Wednesday.
On another note. I met a very nice lady from the Baby Center Down Syndrome preganancy board. She lives in Columbus. Her daughter Madison was born back in May with T21 and the same heart defect as Ethan. Her surgery was today and the last update was her survey was done and they were able to fix the repair. She is doing very well, waiting for her to wake up. Please say a few prayers for baby Madison and her family.
I cannot believe I'm this close to finally holding my beautiful baby boy!!! I've had an overwhelming sense of relaxation over the last 24hrs. Well maybe not physically lol! I've been getting some fairly intense contractions but nothing to set me into labor. Went to the dr again today which was a much more pleasant visit. I'm 3 cm, almost 100% thinned! WOW!! She also mentioned if I have not had him by the 20th they would want to do an induction. I've been tossing the idea around but I'm completely comfortable with this now!! I still hope to go into labor naturally. This is the week to be pulling all those strings lol! I plan on working through Wednesday.
On another note. I met a very nice lady from the Baby Center Down Syndrome preganancy board. She lives in Columbus. Her daughter Madison was born back in May with T21 and the same heart defect as Ethan. Her surgery was today and the last update was her survey was done and they were able to fix the repair. She is doing very well, waiting for her to wake up. Please say a few prayers for baby Madison and her family.
36 Weeks
36 weeks and 4 days to be exact :)
This week has been filled with emotions... My last OB appointment with Dr. Barnhart was on Monday. We had our last anatomy scan today, but we started our weekly "high risk" clinic visits at Riverside. The place was pretty creepy to be honest. I even asked if we were in the right place, the idea of a "community clinic" was not very inviting. Not predjudice by any means, but out of 10 other mothers we were the only ones who did not have an interpreter. I had to remind myself we were in the big city, an hour from home. Then our name was called to go back. Even the nurse checking us in didn't speak very good english. I had our records in hand, which she did even bother to look at. She kept asking us why we were there. She was not very personable. I could feel myself losing control of my emotions. When she left to see if there was room clean. Matt said, alright this place is a joke...... That was it, enough said and I completely lost it. Tears were like a waterfall streaming down my face. The nurse took us to a room, she didn't make eye contact which was the best thing at that moment I suppose, told me to undress and shut the door. I could not get a hold of myself. Here we were in a completely different place, I was way out of my comfort zone, I had not idea what to expect, or who was going to see me. So after sitting there for quite some time, a nurse came in and introduced herself- she was over the high risk pregnancy department. She was reassuring and explained the process to us. I was more upset of not knowing what to expect ahead of time. Then a 4th year resident came in. I cannot remember her name for the life of me, but thankfully she will be there the next 2 weeks and I will continue to see her. She was so nice and made me feel 100% at ease. She knew about Ethan prior to coming in to see us, so there was no need to re-explain anything. So things are still the same I'm 2cm and 75%. I will continue weekly appts and plan for an induction the week of August 20th.
Next we went on to meet Dawn to have our last anatomy scan done. She is always so happy and such a wonderful person to talk with. He was being a little stubborn, but then again if I couldn't spread out I would be also lol! Thankfully everything has checked out normal besides the things we already know (complete AVSD and Trisomy 21). He weighs 7 lbs!!!!! He is in the 98th percentile. Crazy I could potentially be pregnant for another 3 weeks!?!?!? He has gained 2.5 lbs in the last 4 weeks. Dr. Matt said these u/s are within 10% of actual weight, so pretty anxious to see how much longer he wants to cook in there!
When we were all finished Dr. Matt asked if we had taken a tour of L&D or the NICU. We had not and the high risk clinic attempted to get this set up for us, but they were full. He said then he would give us a personal tour. It was extremely thoughtful of him. It gave us a chance to ask more questions. L&D was just like most other units. Once we got to the NICU, I was a little caught off guard because we were not anticipating him to have to stay there. Dr. Matt said he could not tell us how long he would have to stay, but due to his heart defect he would go there for some extra monitoring shortly after delivery. I was relieved to see the unit was completely staffed by the Nationwide Children's Hospital nurses. They basically rent out that department within Riverside. I had no idea what to expect, but the unit was actually inviting with tons of pictures.
This week has been filled with emotions... My last OB appointment with Dr. Barnhart was on Monday. We had our last anatomy scan today, but we started our weekly "high risk" clinic visits at Riverside. The place was pretty creepy to be honest. I even asked if we were in the right place, the idea of a "community clinic" was not very inviting. Not predjudice by any means, but out of 10 other mothers we were the only ones who did not have an interpreter. I had to remind myself we were in the big city, an hour from home. Then our name was called to go back. Even the nurse checking us in didn't speak very good english. I had our records in hand, which she did even bother to look at. She kept asking us why we were there. She was not very personable. I could feel myself losing control of my emotions. When she left to see if there was room clean. Matt said, alright this place is a joke...... That was it, enough said and I completely lost it. Tears were like a waterfall streaming down my face. The nurse took us to a room, she didn't make eye contact which was the best thing at that moment I suppose, told me to undress and shut the door. I could not get a hold of myself. Here we were in a completely different place, I was way out of my comfort zone, I had not idea what to expect, or who was going to see me. So after sitting there for quite some time, a nurse came in and introduced herself- she was over the high risk pregnancy department. She was reassuring and explained the process to us. I was more upset of not knowing what to expect ahead of time. Then a 4th year resident came in. I cannot remember her name for the life of me, but thankfully she will be there the next 2 weeks and I will continue to see her. She was so nice and made me feel 100% at ease. She knew about Ethan prior to coming in to see us, so there was no need to re-explain anything. So things are still the same I'm 2cm and 75%. I will continue weekly appts and plan for an induction the week of August 20th.
Next we went on to meet Dawn to have our last anatomy scan done. She is always so happy and such a wonderful person to talk with. He was being a little stubborn, but then again if I couldn't spread out I would be also lol! Thankfully everything has checked out normal besides the things we already know (complete AVSD and Trisomy 21). He weighs 7 lbs!!!!! He is in the 98th percentile. Crazy I could potentially be pregnant for another 3 weeks!?!?!? He has gained 2.5 lbs in the last 4 weeks. Dr. Matt said these u/s are within 10% of actual weight, so pretty anxious to see how much longer he wants to cook in there!
When we were all finished Dr. Matt asked if we had taken a tour of L&D or the NICU. We had not and the high risk clinic attempted to get this set up for us, but they were full. He said then he would give us a personal tour. It was extremely thoughtful of him. It gave us a chance to ask more questions. L&D was just like most other units. Once we got to the NICU, I was a little caught off guard because we were not anticipating him to have to stay there. Dr. Matt said he could not tell us how long he would have to stay, but due to his heart defect he would go there for some extra monitoring shortly after delivery. I was relieved to see the unit was completely staffed by the Nationwide Children's Hospital nurses. They basically rent out that department within Riverside. I had no idea what to expect, but the unit was actually inviting with tons of pictures.
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