Life at Home, week 1

What a week!

I can’t believe we have only been home 7 days. In many ways, it is already unfathomable that we spent 52 days in the hospital. It seems like a distant, horrible nightmare. It feels like we have always been home, and it feels like Daniel is a normal baby.

Except for the feeding tube. Except for the risk of heart failure and imminent death. Except for the turning blue when he cries. Except for the weighing each morning, the three medications twice per day and the checking of oxygen saturations.

When I thought of home in the hospital, I was thinking of a place that no longer really exists. The home in my mind was the home with two heart healthy children. The home of play dates with friends, going to the store at the drop of a hat, having plenty of babysitters available at a moment’s notice.

The new normal adds our precious heart warrior Daniel to the mix. It would be a huge setback if he gets even a minor cold, so he is completely sequestered in our home. He is being fed via g-tube, so he has a kangaroo Joey pump. His feeds are over two hours, and then he has a break. Only Brian and I know how to work the Joey pump, and we are the only ones who understand the rigid feeding schedule he is on. No more playdates, no more going to the store, no more babysitters for Daniel. We have a completely transformed world.

I am not complaining. I am so thankful for every single second. It was so surreal coming home last week and realizing that the place I envisioned is a memory.

The new reality is wonderful and filled with blessings, but it has taken some major adjusting. We are still working out the kinks in our routine. Trying to manage Daniel’s medicines, feeding schedule, and appointments is challenging. Add the fact that I am pumping breastmilk every four hours and trying to spend time with and meet the needs of two toddlers…the day fills up really quickly.

Thank you so much to everyone who has provided food and money for us. I can’t tell you enough how much we appreciate it. It is an incredible blessing that we have not had to worry about preparing meals during this time of adjustment. We love and appreciate all of you who have been such wonderful friends.

My day usually begins at 6 a.m. or earlier when I wake up to pump. By the time I grab the pump parts and get set up, this process takes 30 full minutes. Daniel usually starts getting fussy around 6:45 a.m. I usually stop his feeds around then and hold him.

The really busy time is between 7 and 8 a.m. David and Hannah usually wake up around then, so I have to change their clothes, feed them breakfast, and I have to get Daniel’s medicines ready, weigh him, and take his oxygen saturations. If I am completely honest, we have not even come close to figuring this out. Brian and I are usually scrambling.

(This picture sums up how the first few days went. I was stressed to the max and exhausted. Daniel was crying all the time. I think he had sensory overload going from living in the hospital to living at home. He was extremely gassy. A fussy baby is normal; crying is what babies do. But Daniel has a serious heart condition. He could have serious problems if he cries too hard or too often. It was a really tough adjustment. Now he is doing much better, but those first few days were hell.)

The highest mortality rate for HLHS children is now–between the Norwood operation and the Glenn operation. The only way blood is getting to Daniel’s lungs is through a shunt the surgeons put in during his Norwood. If something were to malfunction (kink in the tube, blood clot, etc) with the Sano shunt, Daniel could die quickly. Also, Daniel’s oxygen-rich and oxygen-poor blood are still mixing, so his organs are not getting the oxygen-rich blood they need. His bowels and intestines could get sick, along with all his other organs. The hope is that weighing him every day and checking his oxygen saturations will find any problems he has quickly before they get out of hand.

Right now, he is taking aspirin once per day. I have to crush up a fourth of a tablet and dissolve it in water. He is also taking Lasix and spironolactone, which are two different diuretics. He is also on Zantac. At 8 a.m., I draw up all his medications in syringes, and I give them to him through his g-tube.

Here is Daniel hooked up to his Joey pump. His feeds begin at 9 a.m., 12 p.m., 3 p.m., and 6 p.m. He is fed over the course of two hours with a one hour break in between. In between each feed, we have to rinse out the bag and the tubing, warm new milk, and prime the pump for the next feed. At night he is fed continuously from 9 p.m. to 7 a.m. Even though he is fed continuously, we have to wake up every three hours to rinse the bag, warm new milk, and prime the pump. He also has to be propped up at a 45 degree angle while eating to reduce the risk of reflux. All babies have some reflux, but if Daniel has it, he could aspirate into his lungs because of his paralyzed vocal cord. If Daniel aspirates into his lungs, he could get pneumonia, which would be a huge setback.

(Here is one way Daniel manages to safely sleep at a 45 degree angle while receiving his feeds.)

Part of the inter-stage time (between the Norwood and Glenn) is going to tons of appointments. On Monday, mom and I had to go to Houston with Daniel to meet with the surgical teams. They checked his incisions, checked his weight and oxygen saturations, and checked his g-tube. Daniel also got a chest x-ray, which showed his lungs are looking really good. The reason Daniel is on diuretics is because fluid can accumulate in and around his lungs. The hope is that the Lasix and spironolactone will make him pee out the fluid before it can accumulate. So far, that is exactly what the medications are doing, which is really good news. If fluid accumulates, it will make Daniel breathe harder and faster, and it could mean going back into the hospital.

It is always difficult traveling with a newborn. Imagine driving three hours one way with a baby with a serious heart defect. We aren’t supposed to allow Daniel to cry very hard, so every time he gets upset we have to stop and calm him down. Also try to imagine the insane schedule we are on for Daniel with his medications and feeding pump. Can you imagine how insane it is trying to travel to Houston and back with that schedule? Thank God we shouldn’t have to go back to Houston for a few more weeks. Considering the feeding pump, frequent stops, and traffic, I probably lost several years of life from stress alone.

Tuesday we had an appointment at Scott & White with Daniel’s cardiologist, Dr. Pliska. Daniel had to have an EKG, which Daniel hated. Then he had to have another echocardiogram. Daniel got a great report! His heart function looks good. His right ventricle is doing its job, and his lungs sound really clear. His Sano shunt looks clear and big, which should buy him plenty of time before the next operation.

We have to meet weekly with Daniel’s cardiologist until he get his next operation. In a few weeks, we have to go back to Houston for a heart Cath procedure. The heart Cath procedure allows the surgeons to measure pressures in Daniel’s lungs and heart, among other things. They will be able to get a very clear idea of Daniel’s heart function, and they will get an idea of when to schedule the next open heart surgery.

Last week we also met with Daniel’s primary care physician, Dr. Nickerson. She is wonderful! She ordered consultations with a nutritionist so we can understand how much to feed Daniel in order to allow him to gain weight. It is really complicated figuring out how much to feed him. We can’t feed him too much volume because that could really over-work his body. Remember, he only has one working ventricle, and he doesn’t get adequate blood flow to his body. He is also getting heavily diuresed with Lasix and spironolactone, so he has to get enough volume to gain weight and not get dehydrated, while not getting too much that would make his heart work too hard and get his bowels sick. The great news with feeding is I am producing plenty of breastmilk, which is the absolute best thing for him. Hopefully he is getting plenty of antibodies in my milk that will help him fight off sickness. I am so thankful my body is responding well to the breast pump.

In addition to weekly cardiologist appointments, we have to go weekly to Dr. Nickerson’s office to weigh him on her scale. She wants to keep a close eye on his weight. It is absolutely essential Daniel gains weight before his Glenn operation. So far, he is gaining weight each day, which is a really good thing.

Apart from all the appointments, the feeding schedule, and the medications, this week has been all about trying to figure out how to be a family of five. David and Hannah are really wonderful with Daniel. I was worried that they would pull out his g-tube, but so far they have been really respectful of the feeding tube and the pole. They are really gentle with him and love rubbing his head.

David is the one who is really interested in Daniel. He is such a dutiful older brother. He is aware of his medications and feeding schedule. Yesterday, he went over to my parents’ house, but before he left he said, “Mom, be sure you listen really carefully for Daniel so that he doesn’t have to cry very long.” I was so amused that David felt the need to remind me how to care for Daniel. He tries to engage Hannah with Daniel, but he plays referee and tells her how to touch him, “Hannah, rub his head. He likes that, but you have to be gentle!” Daniel has a fierce protector in David.

Hannah is less interested in Daniel. When she sees me holding him, she comes up and says, “Awww, Daniel. Cute!” and then continues to play with her baby dolls. Hannah has named all of her baby dolls, “Daniel.” For the 52 days Daniel was in the hospital, Hannah didn’t get to meet him, and her baby brother Daniel was only a vague shadow in her mind. She knew she had a baby bother, and she saw pictures, but she was confused. She called every baby she met “Daniel” and she calls her baby dolls “Daniel.” She is just starting to get used to the idea of being a big sister.

Thank God for grandparents and for great-aunts. My parents and aunt Pam have been absolute life savers. Above when I used “we” when talking about going to Daniel’s appointments, I was referencing my mom. Brian works, and my mom goes to appointments with me, while my dad watches David and Hannah. I am so thankful the kids have each other, and I don’t know what we would do without our family.

David is really obsessed with Legos right now. He loves making space ships that he says are from Star Wars. He pretends his Lego men are Luke Skywalker, Darth Vader, and Han Solo. Hannah is really turning into a girly girl. She loves dressing up in ridiculous, frilly dresses, playing with her Care Bears and baby dolls, and watching cartoons.

I have so much guilt that I can’t be with the kids very much. Even when I am at home and not at appointments with Daniel, I am inside with him while they are playing outside with Big Daddy. For 52 days, they had to adjust to life without their parents around. We are so happy to be together again, but as I mentioned at the start of this post, it isn’t the same as it was. When I stress out that they don’t have a bed time routine because of our topsy turvy life, when I worry that they aren’t taking naps or eating as healthy as they should or that they are watching too much TV, I keep telling myself, “They are loved and they are alive.” Nothing else is important. (A future blog post will be about the impact having a child with special needs has on the whole family.)

I love Daniel so much. He is my hero. He has had to go through unfathomable pain and suffering. I am so thankful he can be at home now.

I was worried I would be scared all the time at home, away from the reassurance of constant monitors. But I am not. Yes, scary things happen. Yes, it is stressful. But I have had to give Daniel over to God. I know this is something we should do with everything in our lives, but it wasn’t until Daniel that I realized what it meant. Every single moment with Daniel is a precious gift. If Daniel dies tomorrow, I will be thankful for the moments we did have, for every snuggle, every kiss, and every diaper. Only God knows His plan for Daniel’s life. I will do everything in my power to fight for him, but I know that the future of Daniel’s earthly life is uncertain. What a joy that his spiritual future is 100% certain! God has given us a miracle– Daniel’s birth and recovery, the surgeries and healing, the many blessings every step of the way, and the peace that passes all understanding.

Not only has Daniel’s heart been transformed in the Norwood operation (and through the subsequent Glenn and Fontan procedures) but my heart has been transformed as well. I am a changed woman. I have learned what it means to rely on God, to have every happiness and hope come from Him alone when all else seems to be failing, to love Him more than just believe in Him. I am so thankful for every single moment since D-Day on March 31st. To God be all the glory. Amen.