Consultation for Cath

Yesterday was a big day for us!  We had to be at Levine's at 8:30am for our consultation with Dr. P.  We were able to see Dr. Maxey, the surgeon, on our way in.  We just love that man!!  We met with Curtis first. He is Dr. P's  nurse practitioner.  He went through everything with us.  Here are the highlights:

• We need to check in at Levine Children's hospital at 5:30AM. (goodness!)
• The last time Shea can have breastmilk is no later than 3:30am (which means I need to wake up at 3 and nurse him.)
• The procedure will take 3-4 hours in all.  
• We will wait on the 5th floor like we did for his BT shunt surgery.  
• We will stay overnight on the 8th floor (Progressive care)

In terms of what they will be doing in there:

• Reading Shea's oxygen numbers from inside the heart (super cool!)
• Seeing how the ASD (hole between the top two chambers) is doing.  They think it may be constricted.
• Seeing how the VSD (hole between the bottom two chambers) is doing.  We know from listening to his heart and from the echo three weeks that this is more constricted.
• Checking out the flow in the BT shunt.  3 weeks ago the echo showed that there was some constriction.

Sounds like alot of constriction in there right?  Yeah...if all three of those are constricted...then the heart can't pump blood to the body. There will be no flow.  There are some things that Dr. P could do but after talking to Dr. Maxey, they have decided not to do them.  Dr. Maxey can take care of that during our 2nd open heart surgery (the Glenn)

We have no idea when the Glenn will be.  Could be next week or next month.  Trust me, we will keep you in the loop.  As we are ready to share we will post updates and information on the Sweet Baby Shea page and here.  Thank you for your continued support and prayers.

It's been a week of milestones for Shea!  He found his toes, like for real!  Reaching for them and ever so often grabbing them.  It's hard for him to actually get them because his hamstrings are so tight.  But he is getting better at it.  Then today..he rolled!!!!!  Not the whole way, but he rolled from back to his left side!! I was so happy that not only did I get to see it, but I also captured it on camera....video too!  

Shea has also discovered his sister puppies!  Over the weekend he would do a hearty chuckle when Brayleigh barked.  The past two days he has reached out for Bella and even grabbed her fur.  Both girls are doing well and loving the praise they get for being gentle with him.  Bella loves to lick him everywhere as well.  It's super fun to watch.  I will try to get pictures next week!

Friday is finally here!

Y'all....this week was hard!!! Between Shea not eating/sleeping and me trying to make sure everything for Nourish Marketplace and my work for LulaRoe was done before the end of next week...well let's just say the stress got to me big time.

Tuesday, when our nurses were worried about Shea, my mom offered to come over. I said he was okay, "but I could definitely use you,"  Our nurse stayed until my mom arrived. Honestly because I think she was worried about me. Shea was doing okay. Enjoying himself in the pack and play. Not eating, not sleeping, but he wasn't screaming #wecallthatawin. My mom and I ate dinner, she took care of Shea while I sat at the table...not sure what I did. But then it got to me.  I went and sat down next to her and lost it...I just put my head on her shoulder and bawled. Just for a few minutes. I needed the release. The being told it was okay for me to be stressed out and it was okay to cry. (By the way I am huge crier!  Don't know why I think I have be to tough now that I am a mom)  By the time my mom went home, I was in a better place.  Okay that may be a lie, but I was not a hot teary mess.

Wednesday, the emotional exhaustion finally started becoming physical exhaustion. I had a meeting in am and seemed to do okay there...but I got home and just was a bit off. I was so tired. I could have taken a nice long nap, but I had to pump and take pictures for work and yes, I had scheduled another meet up in afternoon. I was a bit worried, as I was sheer exhausted but the drive was quick and easy. I got home, looked at our nurse and said "I think I will send Paul down at 4 so you can go" (more on why Paul was home early)  I went up pump, pretty sure I fell asleep while I pumped, crawled into bed and read my book for 10 minutes. Fell asleep for oh maybe 5 min and then a stinking telemarketer called and woke me up...aahhhhhhh!  By the time our nurse left, Paul came up, Shea screamed, Paul went and got him and brought him to me. I knew no nap was going to happen. Dinner seemed very foreign to me. My mom had offered to come take care of the adults. (Paul had worked the previous night and got maybe 3 hours of sleep. I had slept with one eye open, which I always do when he is gone...but this time I was watching and listening to Shea.)  So Momma to the rescue again...brought us some yummy delicious dinner. We vegged on the couch, she cleaned. I mean this woman is awesome!  I love her so much. I can't even describe it.

Thursday, my mom came back, but we had scheduled that last week. This is usually a day we clean, clean, clean, and/or I go to work. I have been taking photos at home trying not to expose Shea to everything out there, especially this week. And I did do some cleaning in the house. And got some work done for work. But it was hard. So physically hard. My mom, Grams to Shea,  got the kiddo to eat and sleep almost his normal amount. Amazing!!!  She and I got some things accomplished too. Not much. (Like that photo frame I need to finish still on the kitchen table!)  But enough to call today a win.

During this time, I received a call from Shea's nurse navigator thru the insurance company. Nicole and I have spoke oh maybe 4 times before. And her co-worker and I maybe 2 times.  It usually goes a little like this: "How's Shea? Any procedures coming up? How's feeding going?   You doing okay, Momma?"  I ALWAYS get through the conversation with no tears. I am usually doing great all things considered. I do let them in on all the medical stuff because it's the insurance...they know who we are seeing  and what they are doing...haha. Plus with anything abnormal we have to let them know ahead of time, so the catheterization for example. They need to know that stuff.  So today Nicole calls and starts asking the normal questions, and I start to cry!  What the heck is wrong with me?! I am almost blubbering to this woman...who I don't know!! She says all the right things to me. Reminds me that I have to take care of myself, or else I am not good to anyone else. And I keep crying.  I somehow tell her my mom is here helping me and she praises my mom for being supportive.  Praises me for having this amazing village of people. Our army to fight for Shea. To fight for our family. And I keep crying. She gives my orders, nurses orders: tonight you take a bath, with a glass of wine and that book that makes you cry and laugh (I had shared that I was reading Glennon Melton Doyle's Carry On, Warrior.)  I did giggle a little at that. Just so you know I did not take a bath, but I did go upstairs with an Angry Orchard in hand.  I drank that hard cider while pumping and continued to read that book!  (And yes I took a picture because I'm going to look back one day and laugh! Right?!)

Okay so none of this sounds super stressful right?! I mean Shea's appointment Thursday am went okay. They don't really know what's going on with him, but he isn't getting severely worse in terms of his heart or lungs so that's a good sign. If he gets worse obviously we will call pediatrician or go to the hospital. And the cath is already scheduled so nothing more we can do there unless an emergency arises between now and next Friday.

Well in the background of all this, we are getting new bedroom furniture. This is something I have wanted for a long time...like 4 and half years!  When we moved into this house I wanted a white king sized bed...oh and all the matching pieces to go with it. And yes I have expensive tastes. We always 'earmark' our tax return for it but something more important/serious comes up. (Even this year, duh!)  Well a long, long, long time ago, people used to buy bonds when babies were born. A bunch of mine have been maturing and are done this year. My parents have been keeping track of them and handing them over when it's time for me to cash them in. They were very clear that they wanted me to use this for something fun, not medical bills. This was a present that had been a long time coming. So...we are old (but still fun!) and are getting new furniture. .and I am so excited!!! But that means: 

1. We have to get rid of (sell) my bedroom furniture and get it out of the 2nd bedroom.
2. Move Paul's furniture (stuff we have been using) into the second bedroom.
3. Have master bedroom clean enough for other people to not only see it but set up our new furniture.
4. Oh...and yea we need to paint...because white furniture on white walls...who does that?!

So the order we did those tasks was: #3 kinda, then #4 (this was all Paul!  He had to do threeish coats, but it looks great.  That room is going to be awesome when all put together!), then #3 again, then #1 (thank you to our neighborhood "village" this all happened tonight! Paul and I high fived when it was done), then #2 and then #3 again.  Did you follow that?  Confusing right?! Sounds exhausting right?! And lets be honest here...I did pretty much NONE of it!  Have I mentioned my husband Paul?  From the moment I met him, to this exact moment (11:10pm on 9/15) He is my knight in shining armor!  He is by no means perfect, and we are no where near being couple of the year...but man...he is something.  (And we aren't so bad together either.) Okay so Paul did basically all of this work over the past week and half, while working a full time job (a stressful one at that!) and taking care of Shea and I.  Can I get a whoop whoop??  :)  (yes I am bringing back the 90's!)  

And why you ask did it have to be now? I mean Shea isn't doing super great, the cath is coming up and y'all know the 2nd open heart surgery is right around the corner. Well, because the furniture could come anytime now.  They said 4-6 weeks. This is the end of week 3.  We know we might be in the hospital, so we want the room ready to go as soon as possible.  Oh, and did I forget to mention they called me WEDNESDAY!!  Yea, the furniture comes tomorrow between 1-4pm.  So while I am doing a happy dance inside, I am crumbling on the outside....furniture--need to sell, get out of house in 24 hours.  Furniture--needs to be taken apart and moved into 2nd bedroom AND re-assembled, as soon as first furniture is gone.  Baby--needs to be taken care of and is in super clingy, screaming if you dont hold me stage.  AHHHHHHH!  (Does the Anger Orchard in hand while pumping and crying to a stranger make more sense now?) So again I ask for a whoop whoop for Paul!! The most amazing husband I know.  I mean he did all the hard laboring work and managed to deal with me and my sobbing fits.  Paul, my dear husband, I love you so much.  I know you work so hard for Shea and I both in the home and out.  Thank you for loving us as you do.

It's not quite Friday yet, but I am just a few minutes shy of it.  So before I leave you dear readers, friends (because let's be honest here, if you just read this entire thing...you are my friend now!)  please know that I am going to really try to take care of myself the next few days.  Recharge myself for next Friday.  I may be a little distant, focusing my attention on our little family here.  But know that I appreciate your prayers, thoughts, kind words, supportive-ness and your love.  You have got me through so much (not being able to get pregnant, IVF two times unsuccessfully and one glorious time successful!, the heartbreaking news that our unborn child had a serious heart condition, and our course all that entails labor, delivery and since then.)  I know that my village, our army for Shea, will once again save me.  Love you friends.  

Wild man update

Just a little update to keep you in the loop. We have been struggling some with feeding the past week or so. He will gain some, lose some, then gain weight again. But overall he isn't gaining as much as they would like. It's not like we can bribe him with a cookie, which at this point, I would totally consider! 

We have had lots of things happening over here. Our dear friend and neighbor will be his early childhood interventionist and will be coming over Thursday am to do her assessment. Hopefully we can have our official meeting before we head into the hospital.

Today Shea has been super tired, screaming and eating bits at a time, and then 100ml at a time. Really wanting to be held or see someone at all times. After talking to our nurse, head nurse and nurse navigator at Sanger, we are going to go see our pedatrician tomorrow morning. All heart and breathing things are in his normal range. But he is definitely  not 100% himself. Praying tonight goes well as Daddy is at work and our nurse is leaving soon.

Please continue to pray for our Wild Man!  And maybe a few prayers for me too...as all parents know, it's hard to see your child suffering and not know what to do for them.

So What is a Cath?

I truly believe people come in (and out) of our lives for specific reasons. Sometimes we never know those reasons and others we know some of the reasons. Tiffany has become a dear friend and I haven't even hugged her neck yet!!  (Hoping that next weekend that will become a reality!)  Not only is she a huge lover of LulaRoe like me, but in a past life she was a cardiac nurse. I've asked her to explain a catheterization (cath).

During a cardiac catheterization or a “cath” procedure a light anesthetic is given to the patient - sometimes referred to as twilight sedation. During this the patient will not remember the procedure but will be able to react the the nurses and doctors comforting them.

A small incision will be made in the groin area, near where the bend of the leg and abdomen meet. A very small guidewire in a catheter will be inserted and threaded along the main artery up to the heart. The doctors will then check the pumping function - commonly called the ejection fraction or EF - of the patient's heart and will look at the structure of all the valves and vessels. Usually a video of this is made for the physicians to refer to later.

Once that is complete, the patient’s wound is closed with surgical glue and they have to lay still for several hours. They will be woken from the twilight sedation and be allowed to eat. Movement will be restricted for a few days and activity limited but there are rarely complications to this procedure.

We will find out more specifics on what Shea will go through on the 21st. The last cath he had, there was no 'twilight'...that kid was totally out of it!!!  They made him very comfortable. :)  Thank you for your positive thoughts, messages, texts and phone calls. We love you dear friends and readers. Your support is just amazing.

Home Visits

On Tuesday we had a coordinator from Baby Net come out to the house to evaluate Shea in 5 areas: communication,  social skills, self help skills, fine motor and gross motor. We really only thought there was a concern with gross motor skills. To qualify services, (like physical rherapy) the child has to have a deficiency in two areas at 25% OR 40% in one area. They also take into consideration doctors recommendations and what the parents concerns are. We haven't heard back yet, but I'm thinking we will qualify based in his gross motor skills.
***update***  we received a call Wednesday afternoon that Shea qualified in two areas: gross motor and self help skills. So now we are waiting on an Early Childhood Interventionist to come out and set us with a plan. I am not sure what else besides Physical Therapy, but I will let you know as we know.

On Wednesday we had a Tefra (medicaid-like) person come to the house to check Shea out. Tefra is a pretty cool program. It falls under the medicaid umbrella, but is based only on the child's income not the parents. We really need the Tefra to help pay Shea's medical bills.  The process could take up to two more months to hear back. We are praying for a speedier process and that we will hear back sooner than Thanksgiving.

Both women who came out to the house this week were very kind and clearly love their jobs. They also know our pediatrician very well and we are once again blessed to have him on our team!

Medical Week in Review

This past week we had lots of things going on in the medical world.  So I thought I would do a quick  little oh goodness.... how about an informative summary.  :)

4 Month Check Up: Shea did pretty well with his pediatrician.  We did get some recommendations for his cradle cap (Nizoral and Dove sensitive skin wash), his rashes (steroid cream) and gas pains (have the feeds with formula, others just breast milk) See more about this later in the post. He is in the 7% for weight, 39% for length and 12% for head.  The shots came at the end.  Poor thing.  If you follow us on Sweet Baby Shea you saw the pathetic-ness of our baby.  He fought a fever for about two days.  There was a whole lot of sleeping and wanting to be held.  When awake he was cranky, but for the most part he kept eating.  

ENT: Grams, Susi, went with Shea and I to this appointment.  She sat in the chair and held Shea.  The nurse held his arms down and I held his foot and talked to him.  I was very nervous about this whole thing.  Shea, all in all, did very well.  As soon as they finished clipping him, I was able to nurse him and he did great!  It was amazing how well he latched and also how different it felt.  Since that was done, I have noticed that:  he only wants to nurse when he wants to nurse, he would rather nurse than be bottle fed by me, he nurses for quite a long time (20 minutes), and he is in severe milk coma mode!

So I am going to talk a little bit about our surgical team here.  They are completely different than our cardiologist. (though they do communicate weekly about their patients...and honestly they are friends too.  They go to medical conferences and even vacation together sometimes)   My point of contact is Katherine, she is Shea's nurse navigator with Sanger Heart Clinic.  (He has a few nurse navigators)  Katherine is like my Stephanie.  (If you don't know about Stephanie: Super Nurse)  Katherine is my life line.  Not just in the heart world...although thats her main job!  She is also a great resource of momminess.  Alright back to our topic of gas pains and having some bottles with formula added to breast milk or just breast milk.  After my weekly update of his O2 saturations, heart rate, and weight, Katherine was worried about that weight.  Shea is famous for going up and then down some and then going back up even higher than before.  So not only do they want all bottles to have added formula, but also to cut back on nursing, like let him nurse after taking a bottle.  Well....I agreed to do the bottle with added formula.  But I am still nursing once to twice a day, depending on whats happening.  Hope I don't get in trouble...but he is gaining!!!  Last night he was 13 pounds and 2 ounces!!!

Cardiologist: We love this man!  Seriously...Dr, Ohmstede is a great doctor but he is also a wonderful man  We say it every time we leave the office, but we are just so thankful for him and are so glad that he is on our team!  The past week I have been thinking that his VSD (hole in heart) was closing up, and even had a hard time finding it (I like to listen to Shea's whooshes!)  It is way more constricted according to the dr and the echo!  The echo also showed that the shunt is having less blood flow go through it.  Shea is just growing out of it.  I am glad Dr. Maxey put the bigger one in, can you imagine if he had put a smaller one in????  

  

                                                                                 Someone likes to help with the echo!

So our next steps in the heart world mean that Dr, Ohmstede already let Dr. P know that we need get in for a catherization. This blog has a little info About Dr. P

We will get a call next week to have a consult and then we will go in for a cath.  This is kinda of like a dress rehearsal for the next surgery: the Glenn. Speaking of the Glenn, I have purposefully not learned all I can about it....but Dr. Ohmstede said it was time for me to start reading up on it.  Once I learn more about it, I will write up a little blog too.  

Medicare:  So me taking extended medical leave this year to stay home with Shea, actually means that I am getting paid for a few extra months.  Which means Shea doesn't qualify for Medicare yet.  But there is this other program Tefra that is based solely on Shea's income...which is $0.  They are coming out to do a home visit next Wednesday.  Glad to get that show on the road already.

Physical Therapy/BabyNet:  South Carolina's first steps program is just amazing!  We know from our Neuro visit that Shea needs some Physical Therapy (PT)  We will have a home visit on Tuesday where she will evaluate in many different areas.  I am curious if he will qualify for other services too.  I am hoping we can meet with someone before we are back in the hospital.. but thats asking a lot since I think we will going in for the cath in the next two weeks. 

Tomorrow we are walking a Heart of Warrior 5K to support a great cause.  The founder of this organization saw my pitiful posts on facebook when we had just found out about Shea's heart condition.  She reached out to me and has just been amazing.  I have said it before and I will say it again:  We are so blessed to have the people in our lives that we do.  Our family, friends and stranger support is unbelievable!  We had a dear friend make us shirts...hopefully I remember to get someone to take our picture!!

Medical week here we come!

This morning I shared on Sweet Baby Shea that we have a big week starting. Tomorrow am we have a doctors appointment with our pediatrician. In addition to the 4 month shots (ug!) We have some concerns we need help with.  I'm hoping they are normal baby things, like the random rashes and the cradle cap. But I am concerned about his screaming in pain due to gas. Also the weight seems to be staying the same and even going down some. #allthemommyworries

Last week we met with an ENT and we got a confirmed diagnosis that Shea is tongue tied. So there are two types of fixes, one where they cut it with scissors in the office. Another option is lasering it, which is done by pediatric dentist.  I talked with the Sanger clinic in detail about which would be better for Shea. We are going the old school method...clipping occurs Monday. The hope is that his latch with nursing and his ability to eat by bottle will be much easier. Poor kid works so hard to eat, he is burning way too many calories. My biggest regret is not getting it looked at sooner, but honestly I had no idea. Two friends were listening to my frustrations and immediately voiced their concerns of Shea being tongue tied. I'm so thankful for them!

Next Friday we go to the cardiologist. I feel like we are there all the time but we love them, so I guess it's a good thing! This appointment we will be having an echo done and hopefully talking about the Glenn. My gut feeling is that Shea's VSD is either closed or close to being closed. We had already talked about having the surgery done in September to keep Shea healthy during cold/flu/RSV/virus season. I think after the echo, Dr. Ohmstede will talk with Dr. P and Dr. Maxey and we will have a cat scheduled soon.

We are still waiting to hear back from Medicaid for Shea. It's a frustrating process, but in the end will be worth it.  We are also still in a waiting pattern for getting Shea physical therapy. Hopefully in two weeks they will be able to come out and qualify him. We are grateful for the social worker who  helped us in getting a home visit!  

Tomorrow Shea will officially be 4 months old!  Can't wait for our photo session :) We are going to try to do before shots...but you never know if that's going to happen!

16 weeks old-almost

We have had an interesting past week here, so I thought I would do a "quick" update...you know I am wordy, so hence the quotation marks. :)

Last Tuesday we went to the iCAN clinic where they evaluated Shea. After her exam she noticed some things and asked the Physical Therapist to come in and evaluate Shea. The testing was pretty similar to the one we had in the hospital. It was pretty cool to see how Shea had grown in some of those areas (tracking, noticing different sounds, holding objects)  Shea is right at 3 months (in ability ) for cognition and fine motor skills. But his big delay is in gross motor skills. He is super tight in his legs. He won't attempt to stand when you hold him, and he can't stretch his legs up above him.  So basically Shea has super tight hamstrings. The PT showed us some things to do with him and how to actually teach him how to roll as well. We did tummy time and different ways to keep him entertained while there. We are being referred to Baby Net which is this amazing company that has differentered kinds of therapies and guess what yall....IT'S FREE!  One more reason why living in SC was a good decision for us. So we will be having someone come to the house for some PT not sure how often just yet. 

On Wednesday, Shea slept alot! And didn't really have many wet diapers, mostly because he was too busy sleeping to eat. Oh yeah and maybe that virus was making him sleepy too. Wednesday evening, we weighed Shea as usual. He had lost 5 oz.  That seemed like a lot to me for just two days. I texted our head nurse and nurse navigator asking if I should call the cardiologist, they both said yes. Momma did not get much sleep that night. 

Thursday am: Called the cardiologist and they wanted to see him.  I was glad because Shea just wasn't right. I mean he was smiling but I could tell his personality was off, eating was off, and my gut was screaming at me. Luckily Paul was able to come home early from work and go with us. I won't say I was a wreck...on the outside, but I definitely was thinking we were headed to the hospital. Cardiologist said it wasn't his heart or lungs, which was wonderful news but I still didn't feel relieved. He did suggest we see our pediatrician just to make sure there wasn't anything going on there. 

Thursday pm: We were able to see Dr. Cook at 6pm. I am very glad we followed up with him. Shea did had a fever and viral infection.  The poor kiddo had to give blood and he was sooooooo unhappy. That may be the longest and hardest we have heard him cry. As soon as It was over, I tried to nurse him. It went like this scream/cry, suck suck suck, scream/cry, suck suck suck. After awhile he did calm down, but it was just pitiful.  He gets so clamy and sweaty and red/purple. :( 

I stayed home from work on Friday to snuggle with Shea. He was definitely feeling much better and we got in our excersizes and more tummy time. Aunt Emma came over too! We have not seen that lady in forever and Shea pulled out all the giggles for her. By weighing time, he had gained back 2 ounces. Whew!  So we are goin back up and now are at 12 lbs and 5oz. 

Saturday was a fun day! Mommy got to buy some new pjs! #momlife. We randomly stopped by at Aunt Darcis. She had a huge box for Shea and an audiobook for mommy! (Also a beautiful vase..LOL)  Then Grams and Gramps came over. They had been gone for a week and boy did we miss them. They brought some super cute clothes for Shea!  After hanging out for awhile, Paul had to go to his volleyball tournament and my parents stayed. I was able to do some baking (I am still nervous to do that alone with Shea) and then we got hungry!   The four of us headed out to dinner. We had some super yummy seafood and Shea had a good nap!  The kid ate 150ml twice! That's two 5 ounce feedings in one day!!! The most his has taken. Our boy is growing! We are so excited to be working up to that amount :)  

Some new things for Shea: being ticklish, his new word "eh", finding his feet (this is so cute to watch..he picks up his legs and just focuses on those feet. I have found him doing it in the rock and play, on the flook and in the car seat)  We also found and installed a new mobile in his crib. He loves it!  

Our sweet baby Shea just gives us so much joy. This picture below is him hanging out in bed with daddy watching the Olympics. How sweet is he?!  

3 months old!

Whew this post is a long time coming!!  It's amazing how some days I feel like I do nothing but stare at and feed Shea. And other days I feel like a huge whirlwind of things!  I have been trying to keep the sweet baby Shea Facebook page up to date with the day to day things. But I know there are many of you not on Facebook and/or like all the details! 

I can't remember all the details....ha!

Now don't be mad...most of the stuff is just normal baby things and is pretty boring to those not related to Shea.  So let's see what were some big things of July?  

Well big news for me, I am going to be staying home with Shea this fall. It's a huge deal and I'm struggling with not going back to my first graders. But Shea will always come first and he just isn't healthy enough for daycare. In fact some won't even take him because of how sick he is. We looked at private (in our home) care, but we need someone experienced with heart kiddos and realistically we can't afford them even if I am working. My whole paycheck would just go to them. It just doesn't make sense.  So I am staying home with Shea until he is healthy enough (and we are out of RSV, flu and cold season!) for daycare.

Another huge thing in our lives was a fundraiser put together by Lancaster County Sheriff's Office.  In just a few hours, of selling hot dog plates (any donation amount) and raffle tickets, they raised over $13,000 for us and another child needing serious medical assistance. I meant to take pictures of us and of the event but totally forgot. We got there early, but by noon that place was packed. The hot dog line was intertwined with the raffle ticket line. And the to-go line was mixed in there too. It was crazy packed!  We are so thankful for all the people who helped out at the event, donated money, and bought raffle tickets.  It was more than we ever could have expected!!

Okay I guess I should put a little something in here about Shea right?! I mean this is his blog...LOL!  Our sweet baby is chunking up!!  We are so close to 12 lbs I can taste it :)  He still isn't a fan of tummy time but loves to nap on his belly. Go figure!  Our feeding is about the same, a little more at times and then sometimes just too dang tired to eat. (This is normal for heart  babies.   But as long as they keep gaining weight the doctors don't worry)  Shea continues to work on those vocal cords. We haven't heard a hearty laugh but we get some giggles sporadically and even some screams.

At our last cardiologist appointment, Dr. Ohmstede stated again that he was still thinking September for our next open heart surgery (Glenn)  not because Shea is doing worse, he is in the low 80's for oxygen saturation levels, but more because of RSV season. I have had friends and neighbors tell me stories about their heart healthy kiddos getting it...and a man it sounds just horrible!!  The shunt that is keeping Shea alive right now is a serious bacteria sponge. So if we can have the Glenn before the season starts, he will have less of a chance of catching it. And we won't be in the hospital when it's floating around.

So what's coming up for us now?  Next week we go to the iCAN clinic. This is a neurology  appointment. Shea will be evaluated in several ways and we will be able to start working on his delays. Because he wasn't on the ECMO (heart/lung) machine during the first surgery, we don't think there are many.  But he will have to be on the ECMO for sure in this next surgery. We are hoping to get on top of the delays before then.   In a month we will go back to the cardiologist and he will determine if Shea should be scheduled for his surgery. Until then we keep watching his O2 saturation levels. Of course we watch his color too. It's not fun seeing him turn blue and purple! 
I will leave you with some pictures of our amazing kiddo!

7 weeks old

It's like the 7th inning in baseball or the supposed "7 year itch" in a relationship. 7 weeks old, and Shea decides it's time to make Mommy worry.

It all started last Monday when Daddy was doing a dinner feeding and noticed that Shea's neck was stiff. Like seriously not moving at all to right. He could turn his neck and look both ways but the ear to shoulder thing wasn't happening, not even close. Our head nurse/clinical manager has texted asking how we were doing.  I, of course, had to be honest and tell her.  I also mentioned that he hadn't gained any weight since last week.  She called our pediatrician and they both agreed it was most likely nothing. Well Tuesday am I called our cardiologist  just to make sure (plus those specific directions were in our discharge paperwork)  they seemed a bit concerned and wanted us to call back Thursday am and let them know how the Wednesday weight gain went. 

By Thursday he had gained 0.02 kg in 6 days...not great. So Thursday am not only did we call but we went in for a visit. Because nothing else was super concerning (breathing, color of skin, diapers,  feedings) we were sent home to watch. Of course Friday night he had gained more weight! Whew...7 week scare was over!

(Picture: sometimes we do tummy time on mommy while we are still waking up!)

6 weeks old!

I can't believe Shea is already 6 weeks old!  This means we have been home for 3 weeks...though it seems longer:)  Shea continues to eat and grow. He has been wanting to eat about every two hours, sometimes we make it to three hours though. We are lucky enough that he sleeps for a longer time at night.  I am having to wake him up at about 2 am to do a feeding. Paul gets up about 6 to feed him. Several times this week, Shea has woke us up wanting to eat!  Shea has also surpassed 9 lbs.  Last night he was a whopping 9lbs 6oz. I can't believe he still fits in the newborn clothes. We didn't have but like 3 outfits. Thank goodness to Grams who took us shopping when we were still in the hospital. Also to my sweet friends who were pregnant with me. (Their boys are about a month older than us)  I am glad they were willing to share their newborn clothes with us for a little bit.

We had a cardiologist appointment this week. He listened to his heart and lungs and he said he sounded good. We were able to go back down to 2 doses of Lasix and no more potassium!  Shea really is happy about no more potassium. :)  Afterwards we went to dinner, mostly to wait out the traffic. There was only two other customers in the place, we were very thankful for that. Shea did great, he sat in his carrier and drank his bottle while mommy and daddy ate. Well for the most part, he was held some too.

We have been so blessed with wonderful friends. This week our fridge has been full of food, super yummy food!  Big thanks to those who have been bringing and sending food to us. :) Mommy has even been trying to  venture out of the house when help is here. She made it out on Wednesday and Thursday!  Big deal people, big deal!!!

This next week brings in more support people. Hopefully with their help I can figure out my life a little better. I need more sleep, do some chores and get together some father's day gifts.

How is Shea doing?

We get that question all the time! And we have made the mistake in saying "He is doing well."  It's not that he is doing bad...but he is doing well for his condition. He still has half a heart. He still needs medications daily (and thoughout the day)  He will still need at least two more open heart surgeries to keep him alive. Who knows what other procedures and medications will be in his future. So Shea is doing well, and we call him a Rockstar because he is doing great in this situation. But please don't think he is out of the woods. We still need all the prayers, support and love.

I've included a picture of our last echo (last week)  You can see by the labels that his right ventricle is barely there. The top left chamber is larger than it should be. So we have added another dose of Lasix and some Potassium. There is also a "flash" in his mitrovalve. At this time there is no concern, but needs to be monitored. We will be seen in a few weeks to check everything and make sure it's getting better and not worse.

As far as growth, Shea is gaining weight! He is 8 lbs and 10 ounces at the time of this post. He is increasing his feeds. The largest being 95ml (just once) and the smallest 50ml. Mostly we average 73ml every 3 hours. Our home schedule is pretty much as follows: change diaper, feed Shea and pump at same time, change diaper again and put cute clothes on, mommy cleans supplies and makes coffee, stares at Shea, changes diaper, feeds/pumps, cleans supplies stares into amazing eyes...and so on. Of course I am getting other things done too. But not really :)  I am really enjoying cuddling my little man. He definitely knows who his mommy is!

And now for a little PSA. (I say this all with love!) We are so thankful for so much support from our family and friends. We've been advised by Shea's pediatrician and cardiologist that it is best that we limit his exposure to visits. At this time we ask that you love us from afar. Please join our journey through our texts, emails, Facebook posts, blog posts, and phone calls, but not by asking to visit with Shea. While we are so very excited to share him with our family and friends, we must keep him healthy so that he can heal from this surgery and be strong enough for his next two.

Day 13: Mothers day (5/8)

Happy mothers day to all! I didn't have very high hopes for my first .others day but that's really just because I had no idea what to expect. And being in the hospital doesn't help either.

I woke up in the wee hours of the night to put my milk in the mining ridge they have on my floor at RMH. When I opened the door, all the rooms had a large tote bag filled with things outside. I grabbed it but didn't go through it. When Paul came later in the morning we did. Lots of pampering items for me in there!!  It was wonderful.

Paul came and got me to take me back to the hospital for our 8am feeding. He. Rough me some.comforts of home and a QT coffee:)  He had also picked out some wonderful Mothers day cards for me! Shea was very awake for his 8am feeding, lots of open eyes and "talking".  We decided to come back to RMH after for some brunch. And I walked back!  It was nice to do some walking but it was a big step for me 

Brunch at RMH didn't disappoint!!  Victoria's Secret was the crew, and they made us mom's feel very special. In addition to the yummy food they had for us, they also had made swag bags.  These were no joke! One of ours had a $10gift card as well as other products! They also had asked friends to come and do hair and make up. Now if you knowe, make up and I just don't happen. But hey, it was mothers day!!  I had my face and hair did! And I felt great!!  :)  I also met some other heart mommas who are staying at RMH. Made me feel connected and blessed. Both their daughters are in a worse place than Shea, grant it, they have been here longer and both have had surgery already. But it made me feel lucky to have had these 12 days with Shea being so "healthy".

Paul and I decided to let my mom have some alone time with Shea. So we sent her over to the hospital for the 11am feeding while we relaxed some. She had a great time feeding and snuggling Shea. He even ate 35 out of 45ml for her!!

We headed back (I walked again!) to the hospital for some lunch and Shea time!  We loved lots on our little boy and we tagged teamed the 2pmnfeeding. Little man passes out during his eating!   We were also able to Skype with Paul's parents. They loved seeing Shea and we were so happy that Shea was awake and giving them lots of eyes:)  What a sweet little boy.

Day 9: Bump in the road (5/4)

After our call at 12:30ish am it's amazing we got any sleep. As my friend Glennon Doyle Melton says " Jesus loves me this I know, for He gave me Lexapro" (and Perecocet)  We got to the hospital early again and went back at 7:30 on the dot.  

Our primary nurse, Lauren, was not happy.  Which made us worried. We got back there and Shea was very agitated and uncomfortable . We have not seen this side of him and it was just pitiful. He was so fidgety and crying. We felt just helpless as parents. We held his hands, kissed his forehead, and held his paci in his mouth for him. He was on 100% oxygen and 4 liters of flow...not good. And Shea's feet were so puffy.  they also had turned on the prostaglandin again. This is the med he had before the cath to keep the ductus open.

Overnight they had put him on Lasix to help empty the fluids from his system. When we changed the diaper. It was clear that it had worked. Y'all, I have changed a million diapers and never seen anything like that! When Lauren weighed it, it was 140mg, he has been averaging 40mg a diaper.

Paul and I spent most of the day in NICU by his bedside. Throughout the day Shea had an echo and xray right there in his "room".  I was able to comfort him during the echo and help with wires and positions. I think Shea liked the massage he got with the ultrasound wand.  So let's go through the results of all the tests he had:
1. Blood work: showed that his hemoglobin was great aka he has enough oxygen in his blood...WIN!
2. X-ray: clear as a whistle. No infection or fluffiness...WIN!
3. Echo: the ductus was starting to close and the pulmonary artery valve was still thin (even after procedure) and disrupt the flow of blood in the heart.

After talking with the neonatologist and the cardiologist there were two options on the table. The BT shunt (first open heart surgery we had already planned for) or trying beta blockers. The thought is that the muscle below the valve is constricted and the beta blockers would slow the heart rate down, allow the muscle to relax and the heart to fill up with blood. There is a 50/50% chance of it working and there are no risks to trying it. So after talking with both doctors we decided to go ahead and try to beta blockers. We will know in the morning after the echo if it helped.

I will admit yesterday was very hard for us. We were in the NICU for most of the day (7:30-5:30)  My parents did come up and spent an hour or so with Shea so we could go to lunch. After we fed Shea at 5pm he was super mad (we only gave him 15ml) and started getting angry colors. In normal babies you don't worry so much about that, with heart babies, you try to make them breathe. For now it seems like giving Shea a paci reminds him to breathe normally. He also likes lying on his side cuddling up to a blanket.

My parents took us out to dinner. It was the first meal I've had that wasn't at the hospital or RMH. I kept staring at my phone. I also enjoyed a glass of wine. Not going to lie there was a little buzz going on. Food was great and my parents really tried to keep my mind off my tiny little world. So thankful for my parents and Paul. They truly are my rocks right now.

We did the 8pm cares- diaper changing, temp, weighing (he lost some of the fluid weight!), Paul even got to help with ng tube feeding.   Shea was more awake during this time. And we were really happy to see our little one getting back to himself. Before we left the respiratory therapist came in and turned him down to 2 liters..less flow..yeah!!! I called during my midnight pumping session and Shea continued to do well. Beta blockers were started at 11pm and he was doing well.

Paul and I are so thankful for your understanding of us holding back. We are getting new information all the time and trying to process it. We love you for your support and constant prayers!!

Day 8: let's go for a ride (5/3)

This morning we made sure to be at the hospital early. Ronda night nurse, had said that the cath lab might call for Shea to be brought down sooner than 8:30. So she recommended that we be there before the NICU opened just in case. We were walking through the doors of NICU literally on the dot at 7:30. Suited up and headed in. So glad we did, he was already in isolate for traveling. We were able to love him through the little holes. He looked so snuggly in there!!

Ronda and Ashlie (our day nurse) let us walk with them down to the cath lab.  There we met the anesthesiologist  and his nurse. We were able to say goodbye to him and then watch him wheel back there. I didn't lose it, but I definitely teared up. The nurses talked about random things and I focused on their words. I know it's okay to cry, but I knew that if I started I wouldn't stop.

We hung out in the waiting room for the next 3 hours with my parents. I colored, talked, played on Facebook. The time went quicker than I thought it would. Through the heart momma network, I was able to help introduce Darryl to my parents. This man is a very experienced heart grandpa. My parents have had their own network of support now.  We had a little surprise as he showed up to sit with us!  It was great to meet him in person and so kind of him to show up. 

At 8:50 Shea was finished his pre-op and Dr. P started his magic. We got notification that procedure went well and Shea was doing well. They wheeled him up to NICU and took out his breathing tube before we even got back to see him. Dr. P came to see us before we went in. Technically the procedure went well. The pulse in the leg was nice and strong too!  Now we just wait and see how it goes.

Before we went back Darryl prayed with us.  That man is an experienced prayer-er!  There wasn't a dry eye among us! Then we went and saw our baby! 

Sweet baby Shea...he was coming off the anesthesia and was not liking it, he was so fidgety and couldn't get comfortable. His numbers were in 80's which is where we expected and wanted  them to be. (We were told this yesterday ) We did love on him a little bit but we couldn't pick him up and hold..which of course is all we wanted to do!!  Paul went down to call his parents and my mom came back with me. He was going down into the 70's and it was making me nervous. Some of it was Shea, but we learned most of it was the blood pressure cuff. I didn't realize it was taking his BP every 15 min automatically.

After a bit of sitting back there with him, I realized my blood pressure was getting pretty low.  Paul and I went to lunch and my parents back with Shea so he wasn't alone. Their first babysitting gig...LOL!

When Paul and I got back, my parents headed home and we sat with Shea for about an hour. His oxygen had been increased from 25% to 35% but he still was trying to come put of his anesthesia.  Ashlie encouraged us to go get a nap in and let her take care of Shea. We went back to RMH and man oh man that hour nap was glorious!  We did get a call from Ashlie that they had taken Shea off all oxygen and he was just breathing room air.

We had breakfast for dinner and it was so yummy. So very thankful for this place. It's really hard for us to decide what to eat l, especially dinner because we are so exhausted by the tens of each day.

Our dear friend Emily came by with some random grocery items we had asked for and we just hung out and talked. We were going to go to NICU but they were closed for admission. After a while the three of us were able to go over and we each got a little time with Shea before they closed for another admission. 

During the short time we were over there nurse Haley (we have had her before and love her) told us that they had to put the oxygen back on him. And it was up to 55%...yes that seemed like a lot to us too. But he had drank 20 ml from bottle. Great sign from our warrior!!  He was definitely sleeping peacefully, not all fidgety. We knew that the meds they gave him down in the cath lab were still in Shea. I mean he was so passed out his mouth was open and he was drooling!! It was really cute. Unfortunately we had to leave because another admission was coming. (Please be praying for our NICU nurses..they got 5 admissions yesterday that I know of. ..it was slammed pack)

Emily brought us back to RMH and we got ready for bed. We knew Haley would call us after rounds with the neotalogist suggestions about Sheas oxygen levels, puffiness and some other things. We got the call about 12:30am.

So they had to turn up his oxygen to 80% for about an hour. But he destat during his 11pm feeding. After talking to neotoalogist they decided not to have him feed anymore tonight. They called cardio and then turned back on the prostaglandin. He has been able to weaned down to 50% oxygen since turning that back on. It's looking like the ductus is closing and there may not be enough flow as we had hoped. They will do echo as planned in the morning and know more. The cardio team will advise on what to do next. I know Haley had talked about giving Shea Lasix to help him pee out the fluids he is retaining. His weight has increased because of it.  But they will wait to see what his heart is looking like.

Family, friends and prayer warriors. Please keep praying for our Sweet Baby Shea. This ride is a crazy one and even though the procedure went well. We knew that it not working was a real possibility. As we find out more information and are ready to share we will. 

Day 7: The New Plan, Stan. (5/2)

This morning we packed up and left the hospitality house.  We got a room at the Ronald McDonald House (RMH)  We had already toured there so we knew it would be nice..but just amazing!  Our room is amazing. It will be a wonderful home away from home for us in these coming weeks.

Sweet Baby Shea is still eating and growing and pooping!  Man he loves to poop. :)  He drank 36 our of 40 ml for me this am.  Poor little guy, I had to really wake him up and still he kept falling asleep on me. After feeding him we headed over to the RMH and got settled in. It's great to get settled in some where, unpack, and finally feel like we can breathe on this issue of housing.

On our way into the hospital we talked to our cardiologist, Dr Ohmstede.  He seemed very confident in the procedure that was presented to us. He talked to us for about 20 minutes.  He also feels confident in what Dr. P. can do and that he won't try to be a "cowboy"  What a great team we have!

Daddy gets Shea to down the 40ml like nothing at the 11am feeding. Our nurse Brandy today was awesome. We loved talking and hanging out with her. Again the small world catches up with us. She used to date a guy from Seaford, DE close to where Paul used to live...crazy!

We got a call that Dr. Maxey was able to come talk to us...so we had that conversation. Man, I love our surgeon!  For someone who works with babies and kids all day, he is super personable and can relate to adults wonderfully.( I guess my sterotypes come from Grey's Anatomy)  We talked through the pulmonary artery balloon procedure....more on this later in the post. He also thought this procedure was worth a try. He shared with us the normal oxygen levels for Shea will be 80iah. You and me live at 100 and if we went below that we would be hospitalized because there is an issue of a blockage of some sort.

So then came in Dr. P himself. We have met him informally but not with Shea being a patient of his. This man definitely loves what he does. He explained the procedure in some of the things that we still didn't understand or things we were concerned about. After a lot of talking, question answering and truths we have decided to go ahead with the pulmonary artery valve balloon procedure.

What is that exactly?  Well we have been using the picture below (drawn by the cardiologist on call last week) to talk thru it all. So we will be doing a cath through the top of the pulmonary artery (near the ductus) down into the valve.  He will inflate a balloon near the bottom to see if he can expand the artery. (Right now it's too thin and it won't allow the blood to flow correctly)  We will not know if the procedure is successful until they wean him of the medicine that he has been on the past week. (That medicine has kept his ductus open and letting the blood flow) 

It's possible that they won't be able to open the artery with the balloon. It's possible that they will be able to open it but it still won't be enough. (Then we get the first open heart surgery called a BT shunt )  It's possible the balloon works but the ductus doesn't close on its own. (Then we have another cath to close the ductus)  They may also have to go in and put a stent in the  ductus. 

Basically the variables are numerous. However this procedure won't hinder or affect his chance at getting the BT Shunt. So if this doesn't work, we will have the BT shunt. It was pretty much a lot of information. But if we do nothing our Sweet Baby Shea won't get better on his own. We have to do something. I'm too in love with him to let him go!

One of my parents this year, the same wonderful one who threw me a baby shower, started a go fund me page for Shea. So thoughtful and helpful...thank you Jennifer!!

Big thanks to Darci for visiting and bringing us dinner!! It was so wonderful to see you :)  and we know Shea loved showing off for you!

Super big thanks to my parents for bringing the dogs up to see us. Even though they weren't too thrilled it warmed our hearts.

Ginormous thanks to Sheila for taking our dogs to her house for the rest of this week!! 4 dogs is a lot and you are super brave to take this on for us.

Tomorrow at 8:30 am Shea will go down for this procedure please keep him, Dr. P, and all the staff in your prayers and thoughts.  

Day 6: Sweet Gestures from Sweet Friends (5/1)

(Just so you know, I started this blog at 10:40am!!)

It's May Day and even though we woke up to a dreary rainy day, I am full of energy and happiness!  It might have to do with how much sleep I got, or being at the Hospitality house which is like a hotel room. I don't really care..I just love that I'm feeling good!

We got to the hospital for 8am feeding which Paul did....Shea rocked it out! Took all 35 ml. Afterwards we traded and I just got to snuggle. Oh it was glorious. Kinda like what it would be like at home minus these gorgeous blue aprons and wires.

After feeding Shea we have to feed mommy. We ate at the cafeteria and I was stoked. :) They had those french toast sticks, you know the ones we had as kids.....yum!!  Then we kind just hung out in lobby. They are having a community blood drive here sponsored by the Panthers!  Lots of freebies and cool raffles. Wish I could donate but pretty sure no one wants me re-admitted to the hospital. :)

11am feeding I tried different positions and was able to get most of the 35 ml but we did have to use ng tube for last few ml.  My brother was leaving today so we let him come back with Paul to get some cuddles in. My brother has been taking care of our fur babies this week. We are so blessed that we haven't had to worry about them at all this week.

My good friends, and tutoring buddy, came by to see me and Paul today. Sweet girl wanted to see Shea but of course we couldn't, but we showed her and her parents lots of photos. They bought me lunch and brought us the most adorable cupcake flower pot!!  Tons of people stopped us on the way out of Levines asking about it!  Bobbie you could have a second job if you wanted it!:) 

At the 2pm feeding, Sheas temperature was a little too cool for us to feed him by bottle. So we ng tub fed him. Paul and I decided it was a great time to go back to the Hospitality House and rest. I put my feet up as the swollen feet/ankles have finally come. #justcallmebettyflintstone

We went back for the 5pm feeding and he took 36ml out of 40ml!  Another sweet friend brought us dinner from Bad Daddys. And I totally got a milkshake. Yummy in my tummy. This same friend was our taxi!  We got into the Ronald McDonald House!! So she took us over their to check in and then brought us back. We will officially  move in tomorrow morning. Gretchen you are a great friend and super supportive. :) 

Another sweet friend and I have known each other for only a short time. But she is so kind. She is a LulaRoe

Day 5: momma moves out (4/30)

Shea is 5 days old!!!  He celebrated with a visit from Auntie Rachel and Uncle Andy!  Andy and Paul took the first visit, they knew ours would be nice and long!  Yall I wish I had a video of Rachel being with Shea....she was so excited and happy and just...well let's face it...in love!! I mean who can blame her!

Dr Sutsko has been the neonatologist that has been doing rounds all week. We have talked to him and the resident several times. We like him, he is "old school"  Today when the resident (Amanda ) presented her report, I understood everything she was saying. Kinda scary...I mean cool, but whew...I have learned so much this week. Because of yesterday being a little tough at some feedings to bottle 30ml, I was concerned that jumping to 40 ml would be too big of a stretch. I asked Lauren (Shea's primary nurse) if Shea could tolerate 40ml. She thought he could but tolerate doesn't mean fully digest, or solely thru bottle. Just that it basically wouldn't set him back. Dr. Sutsko was on his phone immediately working out the calculations and we compromised on 35ml feedings.

11am feeding was all me!  He had no residuals!  And we tried several new positions. Shea and I both like sideline. He literally is laying on his side...he gulps down milk that way. I was starting to get a headache and knew I needed a hearty meal.

But first we stopped at the gift shop and rented a breast pump. Mine is coming this week but I can't not pump at night.  And since we are leaving the hospital today I need something!

We had lunch at Panera's and my family met us there. My mom and brother went to see Shea and my dad, Paul and I went to room. I pumped and tried to take nap. The headache was just getting worse and worse.

I didn't want to go down for 2pm feeding but Paul really encouraged me to. I'm glad he did. I love spending time with him. I need to see him...he is so sweet and I'm in love. I also was glad I went down because I got to see Paul feed him.  Paul also got a huge burp out of Shea and we realized that Shea squirms when his back is tickled...lots of laughing from our bay.  Paula and Shea are so adorable together. Just wait to you see the pictures. My heart is on fire!!

Dr. Green is the cardiologist on call this weekend. He came in to talk to us about the procedure they were talking about. He really explained it to us and also said he totally gets why we want to talk to Dr. P before agreeing. He said he thinks Dr.  P is the best he has ever worked with in the years he has done. Also he made me feel more confident in the fact that I'm asking these questions and wanting to feel sure. He said to follow my instincts and that no one was going to talk us into doing anything. We are learning how to advocate for our sons best interest. So far no one thinks we are out of line..hope it stays that way:)

Headache was pretty bad when I got back to the room so I took motrin and climbed into bed. I closed my eyes. I couldn't sleep but at least I was resting.  Paul had already packed everything up for the most part. So he and my dad got everything on Catt and down stairs. Then Paul came back and got me. I had a few sips of Coke  in hopes that caffeine would help. Headache was slightly better.

My brother drove me oh so delicately to the Hospitality House of Charlotte. It's literally across the street from the hospital, but walking that far is going to take me awhile to work up to. My brother did a great job helping me out of car, getting registered, unpacking car and getting things up stairs. Don't know how we would have done it without him.  Paul had gone back to nicu to spend time with Shea and do 5pm feeding.

My mom has me a sandwich amd some milk. Definitely started feeling better. About 5:30 I called nurse Lauren to see how Paul and Shea were doing. They were doing great of course.   He walked over to the House when he was done. My family left and Paul and I relaxed a bit. We decided to eat over at cafeteria and then go feed Shea one more time for the night.

Nurse Tiffany was our nurse again for night shift. It's such a small world in this hospital...I actually know her through Co workers and acquaintances.  After feeding him 30 out of 35 ml by bottle, I was able to snug my precious little man. We took our first selfies and I held him in different positions. Oh sweet baby love!!

Tomorrow my brother goes home, so Shea and him will be able to bond lots before he goes. We hope that he will be able to come back, but we understand working and being across the country makes it much harder. Sunday and Monday we plan on just coasting through in our schedule.

This blog is getting posted so much earlier than the others. :) I am going to try to work on photos  on Sunday and get you the next few albums soon. I know you are excited to see them!

Love to all!

Day 4: Pumping day (4/29)

I am actually starting this blog way earlier like 6:45 p.m. instead of the wee hours of the day. This morning started out a little rough. After I posted my blog I was unable to move my bed back, so I couldn't  go back to sleep. So I was awake at 7:30 when it was time to go down for 8 a.m. feeding. This momma was rough. I was tired I was cranky, I was hungry, and I could not move fast enough.

However once we got down there, our nurse Jenny said "Where do you want to sit to feed him?" My eyes shot open! What?! I was going to be able to hold my baby to feed him?! This is by far my favorite nurse! Just kidding, just kidding!! We have loved all of our nurses that we have had in NICU!  We couldn't have asked for a better group of people to help us take care of Shea!!!  But right now Jenny might be my favorite for letting us hold him. She also has him swaddled and he looked so cute.  He was just a little bundle where we didn't feel overwhelmed by all the wires and having to stress out about his umbilical line.  She got me all set up sitting in a chair and placed Shea  in my arms.  It was the most amazing thing ever. He ate all 20 ml for me  except 1.5 milliliters. Jenny was able to get him to eat the last little bit.  I was able to snuggle with him and cuddle with him even after the feeding. When I started to get super tired and feeling like I was going to nod off we got  another nurse, Calli, to put him back in his isolate.

We were heading abut but our resident Keerti wanted us to be there for rounds.   All good reports. They increased feedings to 30 ml...um that's an ounce!! They hadn't physically seen Shea yet but said they would watch his jaundiced. No one is worried because his levels were low to start with.

Back in the room I pumped and ate at the same time. Then I took a two hour nap. AMAZING!  I felt tons better.  Paul had gone down to NICU while I napped. He was able to hold Shea and even fed him at the 11am feeding. I am sorry we don't have pictures of that.  Then I ate and pumped again around 12. Hey look I can multi task!!  My parents and brother came in around this time and my mom and brother went to down to see Shea.

I chilled in bed and hung out with my dad and Shea. My dad and Paul switched places with mom and Josh.  My brother worked on our photos and is a huge reason...actually THE reason, why we were able to post pictures yesterday. He goes home on Sunday and I don't know what we will do with him!!  Thank you Josh!  My mom helped me shower. It's not so much a hard task. Mainly making sure that I don't fall. Even though, I mostly sit in the chair. I do try to stand at end for a bit.

Paul and Dad got kicked out for an admission so they didn't get to do feeding but Paul was able to help me get dressed. I was excited about wearing clean clothes!!  But guess what...it was time to pump again. So off we went!  My brother headed down to spend some one on one time with Shea and my dad went to fill my prescribition. I was also discharged during this time period. But the hospital has a wonderful policy and I was able to board here for the night. No cost to us. Down side, no meals, no nursing care and no meds....listen I am so close to my son, it just made sense to be here one more night. 

My brother came back about 3:30 because they were starting Shea's PICC line. We had talked with Jenny abut this in am and signed consent. This is an iv line that goes in his leg and is placed right above his heart. While it is procedure, it's done bedside in a servile environment. It's a longer term option for everything iv medicines and fluids than the umbilical cord iv. It took about an hour and half. Jenny called us when they were done and ready for feeding.

My parents were awesome and picked us up some Italian takeout. I got to hold and feed Shea for his dinner. Then Paul and I enjoyed a "date night" in the family waiting room!  Since NICU was still closed, I decided to try out the pumping room instead of going all the way up...but we forgot to grab the tubing...so up to the room went. When I was done pumping, Paul sat in bed with me.

He had done this earlier in the day and it felt great to have him next to me. Seriously, no one told me that moms needed "skin to skin" with dads afterwards!  Just sitting in bed watching tv, the act just made me instantly relax...I didn't even know I needed it. We said goodbye to my nurse Jessica. We had only had her today but we instantly connected with her. Then it was time to see our baby!!

New nurse tonight, and while we had our hesitations at first (honestly she is great! I think because she didn't know a thing about us, she felt like we had to go through her "tests")  By the end of the feeding session and pumping session, we felt super comfortable with us. She had come in to talk to us while I pumped and just doing that, really helped us all connect. And yall, I don't know how she did it, but she convinced Paul it was good for him to get sleep too!:)  he has been working so hard to take care of me and Shea, he has not taken the best care of himself. Aka the man needs more sleep!

Paul got to hold and feed Shea during this session. It was great. I got to watch the men that hold my heart, take pictures and take a little rest. No sleep. Just breathing a bit easier. Once I finished pumping, we came upstairs and got ready for bed. The only times we would get up during the night were to pump, clean supplies and fill up my water cup.

Oh my goodness...I am going to be able to post this blog before many of you wake up!!  So proud of myself, hahaha such a silly accomplishment, but hey being a mom means celebrating the small victories right?!:)

Day 3 let's eat! (4/28)

I know...you want pictures!!!  My brother has been super helpful in getting our pictures off our camera and on to a Google cloud for us. I promise when he gets in here today (4/29) we will have help him with getting it on to the Sweet Baby Shea Facebook page.

Since I was determined to get my breastmilk  up and going I made myself get up twice in the night to pump. It totally worked...because I was able to pump 5 syringe fulls. I was feeling good!  We never went back to sleep after the 5am one we were down in NICU for his 8am feeding. Little man had a great night. But he didn't digest the formula well or take it well by bottle. So glad milk came in so I could make Shea happy!

We were there for rounds with neotalogist and resident. The resident (Keerti) is so sweet. But she terrified me when she suggested going from 10ml to 25ml at every feeding. Dr said he was old school and said let's do 20ml instead. Paul and I were shocked but we have to trust what they say. (This would start at his 5pm feeding)

We had to leave before the 11am feeding because of something going on with another baby. We came back up to my room where I had my first bowel movement.  Yup folks I just shared that news worldwide. It's a super important part of labor and delivery. So there you go! I also showered and got off another layer of my dressing from my incision. Our heart nurse navigator came in to check with us. We had a great talk but nothing really dealing with Shea and surgeries. She was staying on top of the Dr's and making sure they knew to get back to me. As she was leaving the OB showed up. He was very impressed with my incision and said it looked great. I got a little confused about when he was discharging me. He mentioned today, friday or saturday! After talking to the nurses about when I was leaving, I think it's more likely Saturday.

Paul was going to head down to meet the cardiologist as we had heard he was looking to talk to us but he actually came up to our room. I very thankful for that. My family and I could hear the news too and we could all ask questions. We had been told that putting a Stent in the pulmonary valve may be an option to open it up more, but Dr. P said no just not possible. So a new option was a pulmonary balloon in the valve to open the valve up could be a good possibility. The cardiologist did a good job of explaining and answering all our questions. But both Paul and I  agreed that we wanted to talk to the surgeons involved before making a decision. While the procedure is less invassive and it could get us through to the Glenn. We just not sure that it's the best option for Shea. This weekend we will be learning lots and making a decision soon.

I need to be very truthful here for a minute. We keep talking about how great Shea is doing and that is correct. We are also being very hope filled and having faith that Shea will continue to be great. But I need you to know that this is because of the medicines he is on. Without them, we would be in a very serious situation. They are keeping his ductus open to keep the blood flow going and no this is not a long term solution. This can only happen for awhile and he can't go home on this medicine either. The other medicine he is on is caffeine to remind him to keeping breathing. Just like his momma he needs some every day.

Our nurse Michelle got me a hall pass!!  Literally a hall pass that allowed me to go outside! We went to Panera and got me some coffee and sat outside on this sweet little courtyard at Levine's. It was great to see the sky, feel the air, and smell different things for awhile. Although I did not enjoy the cigar some one was smoking!  It was almost time for 5 pm feeding and we wanted to be there. My family had been able to spend some time during the day with Shea so they headed home.

Y'all, Shea sucked down 14ml!  What were we worried about?! Paul took some seriously heart warming pictures of Shea and I. Shea is so focused on my face and we had some major eye contact. At one point I was clucking at him and I swear he mimicked it! I was able to pump over 20ml for his next feeding and then we got a happy surprise. Our friends came up and had dinner with us. At Panera...I know not super exciting. But I loved seeing them. And Shea was super excited to see his Aunt Emma again and meet his Uncle Shawn. The boys went back first and as far as I can tell enjoyed their time.

When we went back I got to feed Shea again!  Paul is spoiling me by letting me do the feedings, we were trying to switch back and forth. I did however get to change my first poppy diaper. It was so small.  Lol but they count it!  Shea sucked his 20 ml down in less than 5 min...even the nurse Haley was surprised!!   Then Shea decided he needed to see Aunt Emma's face.  It wasn't for long but oh friends, his fluttering eyes at her made my heart smile.

Tonight Shea was a little jaundiced. Which is super normal for every baby!  They will for sure be watching him and may do labs in am just to make sure everything is okay but the fact that he is eating, peeing and pooping means that it's probably on its way out! :)

Family, Friends, and readers...we are so thankful to have you. I am continually amazed at how much support you give us. If I don't tell you personally please know we appreciate you!!  So as 6am is here again...lol here is your morning read!

Picture for today is Paul and his little lion king...this picture is one of my faves!!

Day two of NICU

I'm going to try my very best to keep these updated...I want Shea to know his story and I definitely don't trust my memory.

So here we go!! This am Paul and I spent about 2 hours in NICU with Shea.  Shea is doing super well. (Pulse ox levels are in high 90's!) We have talked to cardiologist today but he has yet to meet with surgeon (Dr. Maxey) and another surgeon that deals only with catheterization(Dr. P) to come up with next steps. We could still have the bt shunt which is open heart surgery. But we possible could have a stent which would be done through a catheterization. The biggest problem right now is that the pulmonary valve is too thin. So they could put a stent in to help open up the pulmonary valve. Dr. P Wil be the one to really make this decision  based on Shea's echo at birth. (Lots of info I know!)  We took lots of pics this morning and will work on getting them up on the Sweet Baby Shea  Facebook page.

Paul and I took his temperature and changed his diaper.  Our day nurse, Lauren, fed him but we were able to assist and next time we will do and she will assist. He will be eating 10 ml every 3 hours.  At 11am he drank 2 ml from bottle and then the rest was fed to him through his ng tube.

I definitely pushed myself really hard this morning and paid for it in the afternoon. At 11:30 there was an admission coming, so we had to leave.  Good time for everyone to eat and for me to get some rest. I didn't nap, but was able to rest in bed, eat some food and recap with my mom, brother and dad. They have been such  a blessing these days. My mom especially has been helpful with helping take care of me and my basic needs: peeing and getting dressed. I feel like I'm 2 again with these needs.

At the 2pm feeding we checked his digestive system by pulling back on the ng tube, only 1.5 ml came back and we refed it to him. The best news here was that he digested 8.5ml from his first feeding!! Paul fed him all 10 ml in his bottle. Y'all I already knew that Paul was an amazing husband and I knew that he was going to be a killer father...but man, he is more than that.  He just loves his son and is wonderful with him. I was so impressed with the feeding! 

I went back upstairs to rest for a little and wait for our pastor to come. Our church has been praying for us for quite some time and Pastor Paul has been so supportive. He just has a great way about him. We prayed over Shea and Paul prayed over us. I have been strong only because of my faith in God, but no doubt it's still hard. I try to remember that He's got this. He knows the master plan and I have to trust it. Having Pastor Paul pray and talk with us just reassured me in all that!

I went back up to rest some and try to pump. I haven't been doing a great job at having a pumping schedule, but Shea needs it!  I was only able to pump a little bit out. But some is better than none!  My friend and photographer Lora was heading in to take pictures for us...so I made my way back down to NICU.  Our mutual friend Rebecca came too so she could help watch Loras adorable little girl! And of course see Shea.

I sent Lora and Paul back to NICU first. I didn't see any pictures, but I know they are amazing!!  I was able to go back and the three of us had some pictures including diaper changing ones and feeding ones.  This time I did the feeding! During that 5pm feeding  only 0.5ml came back in the NH tube...my kiddo is being a Rockstar at feeding!!!  We were able to get him to eat all 10 ml again by bottle. ..so exciting! 

After everyone got to see Shea and pictures were done, Paul went to dinner with his childhood friend who only lives 5 min away from the hospital. My family got me up to the room and settled. I sent them home. We all needed a break from this stressful time. While I can't physically leav, it was nice to eat dinner in peace. I did end up talking to my super dear friend/sister Emily for a long time. I escaped my world for awhile. This road is tough but definitely not lonely!  And sometimes it's nice to remember that the world is turning out there and others have struggles too.

When Paul came back we were going to go down for feeding but there was another admission. So Paul and I talked, caught up with each other. (Get out the tissues) He looked me in the eye and told me "no matter what happens with Shea, tomorrow, next week, in a month,  these last 36 hours have been amazing."  I agree. We are just totally in love with our son. We have had two great days so far but we know it won't always be like this. We know that tomorrow could be worse. That there will be some day that we are really scared and worried coming sooner than later.  We know a surgery of some sort is coming this week or next. But right now we are just enjoying every minute.

9pm we called down and admission was open...so down we went!  When we walked in Shea was all super cuddly in his body pillow as shown in his picture. We loved on him and then Paul helped me pump. Being near him really helped!! I was able to get 8ml!!

Not going to lie, it's totally weird typing that to the world, but if you have been reading the blog for a while you know that I tend to overshare. If you are new, please remember that I started this blog to document our journey to pregnancy so I could process everything. It has been such a healing/coping tool. And I have realized through my readers it has helped so many others through their process. If you know me at all, I am all about helping others. (It's killing me to ask for so much help here and not be the one helping them!)

Okay back to feeding our visit. While was washing out all the pump tools, Shea opened his eyes. This isn't the first time I've seen his eyes, but he was so awake, I stood up and got super close to his face and started talking. Man oh man, that little boy...just pure love. He and I talked for 10 min, eyes wide open!  Then it was feeding time. Tonight he was awake and hungry. But only took 5 ml. Listen first day on the feeding job...he has taken a ton of milk and kept it down...we are super proud!

Continued thanks for all the prayers, love, support, and messages. We are holding it together and so is Shea!!  So while 6am on Thursday approaches, I will go ahead and post this!  Sometime in the next few days I will post our induction/ Shea's birth story..I will need help as there were drugs involved and I need helping remembering it all in the right order. Love to all!