Meanwhile Back at Home

This is what was going on back at home while we were in the hospital. I can’t even figure out how to describe how amazing the 4 grandparents have been trough this whole thing.

The kids LOVE hanging out with them. In addition to keeping up with 4 crazy kids at home with all their activity and activities, they brought the kids up to the hospital and back several times, cleaned our house, fixed things, took the kids swimming, spruced things up, and so much more. The kids have had the time of their lives with them!

Mom, Dad, Susan, Scott, we CANNOT thank you enough!   

I don’t have a picture of my dad holding her but I love how this picture that we already posted captures his concern, love and optimism all at once. 

Helping us facilitate Facetime while we were still in the hospital.

Home!!

We were fully expecting to be in the step down unit until Monday at the earliest but after one day in the step down with eating and even nursing going well, they let us come home last night! It was so great to have all IVs taken out, and all monitors, wires, and feeding tubes disconnected!

They sent us home with three special medicines – a blood thinner, a drug to help pull fluids through the right channels, and heart slowing drug (if her heart beats a little slower, it gives the hypoplastic right ventricle just a little more time to fill so that it can pump more volume and hopefully grow more).

Other than the extra medications we need to give her, last night was similar to the first night at home with each of our newborns – lots of baby cries and restlessness trying to figure out the sleeping easting schedule. Doing that one eye kinda half way open squinted face kinda thing while weighing out with each other the pros and cons of feed vs. binky vs, pick up and soothe vs let cry. But this time it was different - a little easier to recognize the wonder of a night like that. Marveling at the miracle of life and feeling grateful for the joy of having her here.

There are so many unknowns in terms of what happens now. The main hope at this point is that the muscle in her right ventricle will relax allowing the ventricle to grow and more fully develop. We will be monitoring that closely over the next few months. We will go to our local pediatrician this week and back to CHLA the week after to see how that ventricle is doing. If her ventricle does not grow, we will likely be back for another procedure in a few months. If the ventricle does grow, it could be a while before she would need any other procedure.

  

Last Night

I guess I don’t really need to say anything about this picture that Kristi took last night after some good food.

 

Yesterday afternoon Shelby graduated to the step down unit (From the CTICU to the CVA (Cardiovascular Acute Unit)). As we rolled out into the hallway and passed many now familiar faces with doctors and nurses people literally started cheering. It was pretty cool to see the joy in the faces of all these people that have done so much to help Shelby. Cheering her on.

Yesterday I came home to swap with Susan and Scott so they could spend some time with Kristi and Shelby and so I could spend some time with the kids. It was a blast (and exhausting) hanging out with those 4. At bedtime after prayer I shared with the kids more about the miracles that are happening because of their prayers and prayers family and friends and even some people who have made some comments on the blog from different parts of the world - their faces lit up with beautiful excitement. As McKay's eyes light up he says "Dad you need to do a post on there for everyone and say - OUR FAITH WORKS!"

I showed them the pictures of the valve opening and blood rushing through and they couldn’t hold back their giggles of delight.

I suggested to them that we have another prayer just to thank Heavenly Father again for these miracles. They all jumped on the idea and I asked who would like to say the prayer. McKay says "I have an idea - how about we all say it and we hold hands and squeeze each other when we are done so the next person goes" everyone agreed so we held hands in a loose circle with some leaning over on the ground/bed and McKay says "let's all kneel up straight because it shows more respect." So we did. And there we were kneeling upright in a circle taking turns thanking God for these miracles. It was a special moment.

The past couple days

First of all, here she is right now admiring her mother. This little girl has been through a LOT in the last couple days. Lots of emotions, and this place is swirling with miracles.

Ok now here is some of the back story getting to this point. Tuesday night (the night before the second cath procedure) was crazy. Finding that balance between allowing the ductus to close just enough for the stent without totally closing and without staying too big can be pretty tricky! Especially when you have a feisty baby girl who wants to eat but can’t! If the oxygen saturation in her blood drops too low it is a clear indication that the hole is closing. SO the goal for Tuesday night was to be in the 75-85% range up until close to 7AM (and ideally the levels dropping around that time indicating that the ductus is closing and ready for the stent). Then at 7AM - another echocardiogram to make sure the ductus is a good size before going into the cath lab.

We watched the numbers on the screen somewhat anxiously for several hours and things seemed pretty good (there was an occasional drop but always a rebound). At around 9:15, we ran outside to get something to eat (no food allowed in the CTICU) and when we got back at around 10, Dr. Ing (the one performing the catheter procedure) and other doctors were with Shelby because her O2 saturation had dropped hitting into the mid to high 60s and they were worried the ductus was closing. They started the PGE again and put some oxygen in her nose and she responded immediately and the levels came up to the low 80s again. Figuring the rapid rise was from the oxygen and not the PGE, they turned the PGE back off and the levels were right on so it seemed that the ductus was still quite open. Dr. Ing instructed the nurses to use a little more oxygen if needed and that if the levels drop even with increased oxygen to call his cell phone and he’d decide how to proceed. We felt much more comfortable knowing the oxygen in the nose was keeping things stable and that Dr. Ing was just a phone call away.

The red light on her toe in this picture is what measures the oxygen saturation levels.

From about 1am until 3am Shelby was HUNGRY. She was going crazy and the nurses and Kristi and I were taking turns trying to sooth her. We learned that it can get pretty tricky soothing a baby who is hooked up to all kinds of wires while worrying about oxygen levels! Particularly when you have the solution right there in your boobs but you can’t give it! We even tried this awesome high tech swing thing - which worked for about 3 minutes. The nurses were phenomenal – talking so sweetly to the baby and being so patient. Her O2 stats were fluctuating and making us anxious but luckily they always returned to the right levels.

At one point there was a nurse from next door helping while our nurse was on a break and he insisted that we go to bed to try to get some sleep and took her. As he calmed her down we could hear him through the curtain quietly singing to her. It was pretty sweet and made us feel so grateful for these awesome people that dedicate their life profession to helping others.

We figured we could both sleep here on this tiny bed if we put our heads on opposite ends and it worked pretty well but around 4am this feisty little girl got MAD again and even managed to kick one of her IV lines out of her umbilical vein so the nurses had to put another IV into the tiny veins in her hand!

Through all of this, even with the anxiety and worry and sleep deprivation, we felt this underlying peace and assurance that our prayers were being answered.

Here they are putting the IV into her hand.

New IV in and ready to go.

At 7am the saturation started to drop once again- this time according to plan. Perfect! They came in and did an echocardiogram and sure enough the ductus was right where it needed to be between 2.5mm and 3.5mm (Dr. Ing was looking for 3mm). Relief. Again a wave of peace came over us with a deep assurance that this was a clear answer to the tremendous amount of faith and prayers being said by so many.

Here they are checking the size of the ductus.

After the ultrasound they whisked her down the hall to the cath lab and we left our baby in the Doctors’ very capable hands.

After a little breakfast and a couple hours of slightly impatient waiting, they called the nurse to tell us to come to the consult room for the results. So we headed over. And waited. And waited. We sat there long enough to worry about what they would say and then Dr. Ing came in smiling and just started talking about the stent in there like it was no big deal and we were like “it’s in?!” and he’s like “yeah, it’s in, actually two of them.” (the ductus was longer than normal so they put two for additional length)! He said things went really well and that by the time they got in the ductus was about 1.8mm in diameter on one side and about 4mm on the other which was fine because he was able to get a 3.8mm stent pushed through there and secured on one side and felt confident that it will hold strong while the rest closed down around it. We got to talk for a while about next steps and asked a lot of questions but the whole time flowing inside us through the conversation was a deep sense of gratitude. As Shelby’s little 5 year old cousin Braden put it “our prayers were answered!”

Dr. Ing explained that as long as things go well with the right heart flow and that the muscle in the ductus grows tight around the stents, we may be able to take her home in the next week or so!!!! Going into this, we were expecting her to have a minimum of 3 open heart surgeries – and there are likely to still be surgeries down the road but it is a TOTAL MIRACLE that they were able to do everything by cath through the veins and arteries! Blows us away every time we think of it! Opening a valve and putting stents in through the veins?! Seriously!?

When we got back to the room she was still out from the anesthesia. And continued to be out for a long time. She started to react to touch some but she was not breathing very well – relying on a ventilator to keep her breathing. She would take breaths when we would touch her but then she would get all comfy and relax and just “ride the machine” as they call it. So they had to secure the tube in her mouth for the next several hours. They continued to try to wean her off of the ventilator and she would breathe for a while but kept having spouts of apnea and kept riding the ventilator. Finally by early morning today she woke up and was uncomfortable with the tube down her throat among other things so she was upset – totally awake, breathing, and crying (one of the few times where a mad baby is a huge blessing). And this is the part that breaks your heart a little - that breathing tube goes through the vocal cords and it is not comfortable so she was clearly making a waling cry but it was totally silent. It was an interesting mix of emotion to see her alert and awake and breathing and crying but silent.

I know we may be bias but we think she is pretty cute even when all taped up

She got more and more consistent with taking her own breaths through the morning and they were able to take the breathing tube out by about 11:30! Little by little, she will shed all the cords and IVs and wires connected to her over the next few days.

And we will finish this update with this picture – her first feed!! We have been saving Kristi’s milk and just now for the first time, Shelby ate! First through a bottle but nursing is just around the corner! And viola! - boob solution!

Feeling grateful

Noah has been doing such a great job at keeping this updated and I want to jump in and add a bit. The procedure today couldn't have gone better!!  We had a long night with with some speed bumps but for a quick update...she went in this morning and they were able to put the stent in place. She got back at 10:30 this morning and now we are still waiting for her to come completely out of the anesthesia at 6:30 but she is breathing on her own, her stats look great, she is peaceful and we couldn't be more thrilled with the cath results! This could potentially postpone any open heart surgery for a long time. We are feeling pretty grateful over here in our corner room of the CTICU and know that your love and prayers are making miracles happen.

Cath it is

Dr. Ing stopped by last night to let us know that after consulting with Dr. Starnes and other doctors, and given the great experience in the cath lab yesterday, they think another cath to place the stent is the way to go. They kept her off PGE yesterday for a while after the operation to try to get a better gage on timing and they are estimating 19 hours. So she will need to be off PGE for about 19 hours prior to going in so that the ductus will be just the right size for the stent.

We just got word that they will turn off the PGE at 12:30 so doing a little math it looks like the procedure will be tomorrow at around 7:30am. Ok now one of the fellows just came by and confirmed 7:30 tomorrow morning and I’m kind of proud of our math skills.

Dr. Pruitz (who has been our doctor for all the fetal echocardiograms) came by this morning and was extremely helpful in answering all our questions as always. He emphasized how great it is that her coronaries are well developed – not just because it allows for the possibility of a two ventricle heart down the road but also because her heart will generally be much more stable with well developed coronaries. We feel so grateful for the miracle of our bodies and for the development of this sweet girl’s heart.

First procedure done

Shelby's back in the CTICU with us and doing great! The GREAT news is that there were no problems with her coronary connections and they were able to get into her heart smoothly and balloon open her pulmonary valve. They found that there was actually a tiny hole where a tiny bit of blood was getting through which was perfect because it allowed them to poke through and expand the existing hole without having to “burn” a hole with heat. They showed us the pictures below and it was so great to see that blood flow through an open valve! This is the valve before and after the balloon (note the tiny string of blood coming through the first one and the plethora of blood coming through the second).

  

After getting into the pulmonary valve they could see that the ductus arteriosis hadn't closed enough for the stent – and if they put the stent in a loose place, there is nothing to hold it and it can float away and they had to pull out. So blood is now flowing through the pulmonary valve and flowing well but with such a small right vertical there will not be enough blood to go by that alone. The hope is that this ventricle grows over time but there is no way to make that happen right away. Now we need to decide whether to go back in by cath and try again with the stent or to do a shunt by open chest surgery. Doctors (the cath doctors, surgeons, and echo cardiologists together) are assessing the situation now and will be talking with us again tonight or tomorrow morning with the options for the next step. We feel that things went perfectly and that there is a reason having two procedures will be better for her in the long run.

Below is a simple depiction of what Shelby’s heart looks like (the doctors use these in explaining things to us and it is super helpful). Notice that the right ventricle (on the bottom left side of the paper) is small with muscle buildup (this is called hypoplastic right heart) and the pulmonary valve is blocked (for some reason I am like parentheses master right now and I kind of like it (parentheses and hashtags rule because they basically let you share a little side note out the side of your mouth) so I’m going to keep going with it).

The valve is now open! Now on to the next piece (the stent is the little criss-cross tube thing you see at the top of the pulmonary valve. The shunt would be put just on the other side of the aortic valve).

Again, we want to thank you all for the amazing support, love and prayers. People’s kindness just blows us away.