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!