Welcome Home Ethan Matthew!

HAPPY 2 WEEKS BABY BOY!!

We finally united our family as one within our own home last evening. Thank you for all your thoughts and prayers. We certainly could not have made it this far without all of your support. The power of prayer is magical. I'm also blessed for the family and friends that this blog has  brought together. Thank you for following us on our journey. Ethan is my Tough Little Boy!

We planned to keep a small secret from Eli... that Ethan was coming home. Matt's parents picked him up and brought him home. Eli came running through the door expecting to see daddy. I had been staying the previous 2 nights at Children's so I had not seen him for awhile. We snuggled for a few and then he ran off to see his daddy! When he turned around Ethan was sitting in his car seat and Eli's had a grin from ear to ear. He was SO EXCITED, he said "I'm so happy 'Efan' is home". It was so precious. Hopefully I will get our pictures on here soon!

Today we had to go to our pediatrician's office for his checkup (no waiting around!). We switched our pediatrician to Pediatric Associates of Pickerington. They are affiliated with Children's, which was very important to me when deciding on who would be caring for Ethan. I met Dr. Julie Dunlea during a prenatal visit. She is wonderful. I feel like we have a conversation based on friendship, not a dr visit. Down Syndrome kiddo's are have their own developmental scale such as for growth charts, milestones, what testing is done at specific appointments, ect. So Ethan is 7lbs 13oz, 21in. He is in the 80th percentile for height and 90th percentile for weight. She was so pleased with his weight. It was very comforting to hear those words, "Whatever you're doing, keep doing it. Ethan looks wonderful." This is a mere 180, from nearly 12 days ago when we were rushed to Children's main campus to the NICU...

Between nurse home visits, dr visits, and Eli starting preschool 3 days a week- it's going to be a little crazy!?!? I'm sure we will get it figured out, we have done well so far :)

We might get to go home tomorrow!!!

It was amazing to hear those words come out of our doctors mouth. Ethan and I proved we were ready to start this journey as a family! Poor Eli has started to become very emotionally upset, so it's time to get our baby home!!! I knew he had a great night! That's because his mommy knows best :)so we see that he maintains everything and it looks like we will be getting our ticket out of here! Just a quick post for now. Everyone keep your fingers and toes crossed. We will know officially by noon tomorrow!

Welcome to Holland by Emily Perl Kingsley

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Almost Home!

It's at my finger tips! I can almost see it! Yep, I'm pretty sure we are almost home!!! I discussed my plan with the practitioners today about how eager I am to stay with Ethan to see how he does over night with me exclusively breastfeeding. He breastfeeds all day long just fine when I'm here. She thought it was a fantastic idea so our "SINK OR SWIM" trial started at noon. He has breastfed awesome all day with lots of pee and poop! She ordered no weight checks until tomorrow, they took out his NG, we are camped out in a room with walls and a real door that shuts! I have a bed, bathroom, and TV! They basically moved Ethan and his room to this new one. I really hope we get to stay here for the remainder of his stay. Its so nice to have a break from ventilator alarms, monitors alarms, I've beeping, babies crying... Did I mention there were 100 beds in the NICU. It's crazy when you're on the patient side of things. It is SO peaceful. I can't hear a single thing other than Ethan's little baby noises. so the plan will be to see where he is at tomorrow. I'm sure everything will be fine because he has had plenty of wet diapers. Then I do another 2 nights. Hopefully home by the weekend!!! That would be amazing.

I just don't know how much longer I can take leaving either one of my babies. I want to be here with Ethan, but home with Eli. Matt brought Eli up tonight. He helped me change a diaper for the 1st time. He was more concerned what color he pooped!?!? He is such a big helper. His little mind is so confused. I walked them outside, fighting back every tear. He wouldn't give me hugs and kisses. So I was about to shut the door and he started to cry. A very emotional cry. I asked if he was ok and he say, "NO MOMMY I JUST WANT YOU"... Yep I lost it and them he reached out to me for the biggest hug. Breaks my heart!!! But this is what I have to do for all of us.

I just want to take my baby home! So please pray for us!!!

Patience

I'm a day behind.. this was from yesterday 8-27-12. 

I'm having my moments for sure. I just feel like we are so close every night that I leave. I had a melt down tonight because we had talked in rounds today I was going to start feeding him on demand and get him off a 'schedule'. They were also supposed to stop supplementing basically see how he did over 24 hrs. If I felt he needed supplemented then we would. Well none of this was ordered.

 I had a small anxiety attack when the evening nurse came in with a bottle of milk. I was also told we aware only doing a couple pre and post breast feeding weights just to make sure he was at least eating some. the nurse too it upon herself to weigh him when I wasn't there. My whole thought is how is he going to demand feed is you're filling him up all day. He nurses fine now. It just takes awhile... A very long time actually. But he is learning and I'm willing to have as much patience with him while he learns. This is something I have kit always had, but with I have learned to adjust this with Eli. 

As long as he feeds well today I'm staying the night in a parent room on the unit, see how 24hrs go than if ok I will be there another 48... He will be in the room with me. I will so all of his care. This is the closest thing to home. This is what I have to do to get him home!!! He will still be hooked up to the monitor. He feeds so well for me during the day. As his mother I feel switching him from breast to bottle is confusing him even more. He just will not take a bottle very well and he will not take one for them at night, so since we will I will be Exclusively breastfeeding at home this is what we need to do!

Baby Steps...

What an overwhelming sense of love and support! Thank all so much for your kind words. Ethan certainly has a fan club! We need the support more than ever. I'm so glad everyone has been so understanding we are so thankful for all our family and friends!

We take 2 steps forward and maybe 1 back.. He is really learning how to coordinate to eat, but it's the night feedings continue to be an issue. He doesn't always take all the bottle. Most people would be like, so he isn't hungry. I wish it were that easy. He is very sleepy, he would sleep the entire day if no one stimulated him. This is due to his heart defect. He just gets tired so easily. So we do eye and mouth care, change his diaper to wake him, then he is too tired to eat. We try to feed him first, then he just sleeps. Its a never ending battle.

Matt stayed home today to give Eli some direct attention. Poor guy doesn't know what to think. I believe he is taking everything very well, but he doesn't know any better. "Ethan has been getting some extra rest before he comes home, so the nurses at staking extra special care of him..." This is what I told Eli last night, then of course he fires back... "Well mommy, then he needs to come home so you can take care of him, you're his nurse and I can be your big helper..." Exactly!

So I'm completely exhausted!!! I can only hope for baby steps at this point. Tomorrow us going to be a busy day. We will see all his practitioners and ancillary staff. Matt is going back to work this week, so he can take time off for when Ethan's comes home!

HAPPY 1 WEEK BIRTHDAY TO YOU ETHAN MATTHEW!

This was a picture from yesterday. Little guy decided to pull out his NG tube (feeding tube), so I snapped a picture :) It was nice to see him with no tubes and no tape all over his face. He looks just like Eli here. If this is your 1st visit, I'm going to redirect you to my 1st post...
This is our journey, my thoughts and feelings, and our new miracle.

What The Future Holds
 

If this is the 1st time reading my blog. I welcome you! it has taken me quite some time to get to this point. I feel an abundance of relief since Ethan has been born. It has been a very rough road for me emotionally, mentally, and physically the last few months. I know it will continue to be a rough road, but I have wonderful family and friends that will help us through this. I wish I had accepted what was going on more when I was pregnant. I regret my feelings of crying my eyes out for nearly 15 weeks after confirmation of his diagnosis and heart condition, every single morning in the shower and laying in bed all hours of the night- wondering why we were chosen, why we were the one's who gets to have a broken baby, how on earth will I love him like I do Eli, and not to mention all the endless worries about the future.

Ethan is officially 7 days old at 6:56pm this evening, has it really been a week? He has certainly showed us his effort this week ....went from chaos d/t a possible bowel obstruction which lead to an emergent trip to the NICU at Children's Hospital early Sunday morning, requiring 100% oxygen d/t low oxygen saturation's, unable to regulate body temperature- dropping as low at 95.0 degrees, not feeding, not peeing, or pooping..... TO...... doing a 180 on everything. The only major concern they have at the present time is the feeding, he needs to meet the intake based on his weight and since he is a BIG BOY has actually gained a few ounces instead of losing during the typical 1st week after birth.

On a positive note, he is getting the hang of breastfeeding, which is always a concern with these kiddos and their mouth structure- tongue mouth coordination, low muscle tone, ect. I had determination this was one thing we will master. I have to remind myself to have patience and be persistent. Everyday is better and better. Thankfully my supply is not an issue, so he will only receive the breast milk. I have amazing support here from the lactation team to help the both of us. I am here for at least 3-4 feedings, so we have time to work together. When I'm not here he is offered a bottle of my milk and this morning was the 1st time he took the entire amount needed, which is yet another HUGE milestone. It's amazing what I took for granted with Eli, I couldn't wait for his 1st smile, 1st coo, rolling over, sitting, crawling, walking, ect. With Ethan I have literally cried the 1st time he latched onto me and learned to suck, swallow, and breathe. It's the super tiny small things for Ethan, things that I had feared would never happening right before my eyes.

So, we were curious... What's the plan, when can little mister get out of here. The answer is, he is in control and it's up to him. Realistically he will need to eat by mouth, whether it be bottle or breastfeeding for 24 hours, nothing supplemented down his NG tube (feeding tube). Once we get to this point, he will need to maintain this stride for an additional 48 hours. So it could be some time before he gets to come home with us.... I know he is in the absolute best place right now, but I just want him home more than anything in the world. It's so difficult to want to be there with Ethan and here with Eli or vice versa.

Now his heart defect is not an issue at this present time. Once he has learned to adapt to his environment, he is doing very well from what his practitioners are telling me. He will chronically have lower oxygen levels, he has a murmur, he gets tired easily, so that's another reason keeping here longer d/t feeding. His open heart surgery will still be at the 4-6 month mark, maybe closer to 4 months depending on how he does over the next couple months.

Our family has been wonderful. If it weren't for the Babycenter group I belong to I'm not sure if I could have made it as well as I did. I woke up everyday and just put one step in front of the other. I had to. I have a family that needs me. Work that counted on me. Patients that needed me. I'm especially thankful for the wonderful group of doctors I work for and girls that I work with every single day. They were there for me when I was near rock bottom on the day I got that phone call and they have been beside me ever since. I could go on and on. This is why I felt the need to share... Our story

Links:

For Friends and Family

Congenital Heart Defect- AVSD

BLOOM One Mom's Struggle

Day #5 in NICU

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.

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!

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...

Ethan is here!!!!!

Ethan Matthew celebrated his birthday today! He was born at 6:56pm. 7lb 10oz 21in. I was at our weekly checkup and as our doctor was going over our plan for induction on Monday my water broke!!! Well its a good thing I grabbed those last minute essentials like my camera! Anyways I had a fantastic labor and delivery. My nurses were the best. Due to his significant heart defect he will be in the NICU, but we knew he would need to go there. He's having some issues with his oxygen levels/heart rate dropping when he is asleep, low blood sugars, and regulating his temperature.  But they say he is doing great. I got to snuggle him for awhile before they whisked him away. Thankfully he is just down the hall, it seems like an eternity away. We can go visit him at any time, but it's not the same as having him right beside me. Especially as I hear all the babies crying in the rooms next to me. it's too soon to tell how long he will need to stay, but just hope for a speedy recovery so we can go home!

Thank you for all your love, prayers, and support.

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!

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.

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.