Saturday Night Party

Zachary had several good days and then this weekend had a lot of episodes of apnea and bradycardia. The doctors are investigating whether it is an infection or just that his lungs were tired out from being on the nasal cannula and he needs a bit more support. As a preemie, his lungs are still developing and we are told it is normal for him to have issues breathing for another 5-6 weeks. Because he is still pink and feisty and not acting like a sick baby, they suspect the latter and so put Zachary back on the bubble CPAP so that he gets a bit more help with his breathing. As a precaution they are also running tests on his blood to see if he might have an infection. After they changed his breathing system this morning Zach had a good day with no major episodes while we were visiting him.

It is disheartening to see him take a step back with this respiratory support but we know that this is just par for the course during his hospitalization. At least he is still off the ventilator (knock on wood)! We are really hoping that the CPAP does the trick and that he is not harboring an infection. After a little time has passed the doctors will try again with the cannula and see if he is strong enough at that point.

Zachary's new threads

On a happier note, we dressed Zachary in his first outfit last night. His nurse laughingly referred to it as his "Saturday night party." Aaron's siblings David and Amanda were in town for the weekend and got to witness this milestone of cuteness. We were amazed that clothes this small even exist, thank you to the Crespos for sending this micro-preemie outfit!

As part of the "party," Zachary's nurse also gave him an extra q-tip to suck on last night. Even though he gets all of his feedings of Nadia's breast milk through a feeding tube into his tummy, we give him "oral care" with q-tips of breast milk during his feedings so he can taste it and hopefully become used to it. He really seems to like his oral care and sucks away on the q-tip. It is adorable.

Louie's Struggle

Our social worker at the hospital shared this with us and we thought you might appreciate it as well. These are a series of articles by the San Francisco Chronicle about the parents of a preemie baby named Louie. This article is over 10 years old but it speaks very well to the struggles of the NICU.

While Louie had many more challenges than we hope Zachary will endure, this provides a window into the experience of preemie parents. We have reason to hope and expect that Zachary's prognosis is much brighter, partly due to the advances in medicine in the past 10 years and his progress so far, and partly due to the fact that the baby in the story had almost every possible complication for premature babies.

It is a series of four articles, the first is here:
Louie's Struggle- Part One
Part Two- A Lonely Vigil
Part Three- A Lesson from Louie (can't locate this online)
Part Four- There's No Place Like Home
One Year Later: Gaining Ground

A Good Week

Zachary has had a good week. It is hard to put things in perspective but one of the nurses who had been gone a week was amazed at the change.

A week ago he was still in isolation and recovering from his surgery, getting pain meds and other meds through IV.  Now he is back in the regular area and totally off meds except for caffeine. In fact all his IVs have been removed, including the PICC line.

Sleeping Zachary with a nasal cannula

A little over one week ago he was only getting 2 mls per feeding, and now he is getting 16. He is still having Bradys (dramatic heart rate slowing) and destats in his oxygenation level but the doctors tell us that will be the case for a while longer. And finally, he is now on a high flow nasal cannula! He is making his own breaths with a little support.  The cannula is going to be in for a while but we get to see more of his cute little face.

We are feeling much less stressed because he is currently doing so well. At the back of our minds we know that the rollercoaster ride will continue but for now we are enjoying the calm.

Nadia has also started going to the weekly lunch sessions offered by the hospital. These include talks with the lactation consultant, social worker, nutritionist and other parents. These have been helpful and we have started building relationships with other parents of preemies.  It helps to talk to others in this situation. We also attended a class on how to read preemie body language.

Zachary was finally able to meet his Grandpa Winters a few days ago. It was very sweet to see Zachy holding on tightly to Steve's finger.

800 Grams

Zachary had a tough night after his surgery with lots of heart rate and blood pressure issues. It was crazy with doctors coming in and out, three nurses in the room, and various orders for medicines. It was very stressful for us to watch.

However, since then he has been steadily improving. This morning he was stable enough to be taken off the ventilator. He is now back to the CPAP, also known as his Darth Zachary look. This machine supports his breathing by maintaining a little pressure to keep his lungs slightly open when he exhales. The major differences between the CPAP and the ventilator are that he no longer has a breathing tube in his throat and that he initiates all of his breaths. It is so cool to hear him make noises again!

Nadia was also able to hold Zach yesterday and today, the first time in a week.

Another big milestone for Zachary today is that he now weighs 800 grams, or around 1.75 pounds. We hope he will continue to steadily gain weight.

Preemie Rollercoaster

When we first toured the NICU, the staff kept telling us that preemies take one step forward, two steps back, one step forward, four steps back, etc. Zachary started the week very strong with several solid steps forward and on Wednesday he was breathing regularly with very low level of support, increasing his feedings and making cute baby noises. He even had another Kangaroo session with Aaron.

During the past several days, however, Zachary has had to deal with one challenge after another. First, Nadia got sick with a terrible all body unidentifiable rash and couldn't visit him in the NICU. We eventually found out it was an extreme allergic reaction to the antibiotics she received during labor and delivery. Since it is definitely not contagious, after three days of separation, Nadia was able to visit Zach and comfort him with a familiar voice.

Zachary's breathing has steadily worsened over the past few days and other vital signs have weakened - especially concerning is his decreasing kidney function. He had to have another blood transfusion. He was reconnected to the ventilator. His pediatrics team completed a robust series of tests Friday morning and found an issue with blood flow between his heart and lungs. When babies are in the womb, oxygen gets to their bloodstream and then their organs through the placenta and so there is a gap between the arteries that connect the heart to the lungs (called a PDA). This gap usually closes after birth when babies start to breathe so that blood flows to the lungs to get oxygen and then into the bloodstream to the various organs. When Zach first arrived to the NICU, doctors looked at images of his heart and saw that the PDA was very small and looked to be on its way to closing completely. Given the struggles he's had in the past several days, they did another scan and found that the gap has grown much larger and it looks like his organs are not getting enough oxygen, which is probably why his vital signs have weakened and his kidneys are not performing as well as they were.

And that brings us to today. The only viable treatment option for his situation is surgery. They are cutting a small incision in the side of his chest and are going to close that PDA permanently (called a PDA ligation). This surgery tends to be very successful in doing what it intends to do, and the primary risks are associated with accidentally damaging nearby organs or nerves as the surgeons have to work within a tiny space inside his small chest.

Zachary is in surgery now. They tell us that this procedure is very common in preemies but it is still incredibly difficult and nerve-wracking for us to watch him go through this. We will keep you all updated but if you see this, please keep Zachary in your thoughts today and in the next several days as he deals with recovery.

Update as of 2 pm. The surgery went smoothly and Zachary is recovering in isolation from the other babies. We are all keeping a close watch on him and he is getting pain medicine. The next 48 hours are critical though it should take up to a week to stabilize and recover. Thank you all for your support and friendship.

Aaron & Nadia

Mommy & Daddy Kangaroo

Tiny foot and Aaron's hand

Zachary’s condition has been up and down the past few days but overall the doctors think he is improving. On Sunday he had a “PICC” IV installed, a wire the width of a thread that goes from his foot into his heart chambers.  The staff assures us he cannot feel this. This is to replace an external IV that has to be changed often. This will help him to receive nourishment and medication and will stay in for some time. This procedure took a few hours and we were kicked out of NICU while the doctors worked on him. Then they tried to move him into a different type of breathing apparatus as well and the poor baby couldn’t handle it. He had long periods of stopped breathing and his heart rate was all over the place. Once they moved him back to the previous breathing system, called a SiPAP, he became more stable.  We think it was just too much poking and prodding for one day for Zach. It was really hard to sit with him and hear all the beeping angry machines when he would have an episode. 

Daddy Kangaroo

Monday was better, and Aaron was finally able to hold his baby boy in the “kangaroo hold”. Zachary started crying when the nurses lifted him out of his bed but he quieted down almost immediately once Aaron started holding him. It was really sweet to see how Zachy snuggled into his daddy and went to sleep.

Yesterday, also, was Zachary’s big brain ultrasound.  We were so relieved to find out that the doctors found no bleeding in his brain.

His biggest issue continues to be his apnea. However, yesterday on SiPAP he had fewer episodes of stopping breathing and we hope those will continue to lessen. Once he is stable the doctors will try again with the next level of breathing apparatus.

We are slowly beginning to become familiar with the sounds and bustle of the neonatal intensive care unit. All the medical terminology can be overwhelming but the doctors and nurses are very patient with us and encourage us to comfort Zach when he is upset, learn how to change his tiny diaper, and generally be involved in his care.

Mama Kangaroo

 It is amazing to see how touch comforts him. He was flailing around on Sunday, in obvious distress, and Nadia put her hands inside the incubator and firmly held one covering his hands and one covering his feet. He stopped crying and quieted down within a minute.

We’ve been getting spoiled with dinners, flowers, and messages from all of you. We hope you will continue to be patient with us as we may take some time to respond to your messages. While we are in the NICU, we can't take calls and we have been spending most of our days there.

We are so grateful to have such an amazing community of support and love. Thank you for keeping Zachary in your thoughts.

Making Progress

In the past few days, Zach has been fairly stable. His blood transfusion went smoothly. His blood acidity and sugar level are now normal.  The biggest issue is that he is not breathing on his own on a regular basis. He gets tired or forgets to breathe. The doctors tell us that this is very normal for his age, and that the remaining magnesium in his system (this was given to Nadia help protect the baby prior to delivery) could be sedating him and preventing him from making the effort. He had a tube down his throat helping to provide air and oxygen when he didn't breathe. Today the doctors felt confident enough in him to try removing the tube and replacing it with a headpiece that still supports his breathing, but is less invasive and is a good step towards having him breathe entirely on his own. With the new headpiece he looks a bit like a Star Wars character. We've been calling this his "Darth Zachary" look.

Kangaroo Hold

Yesterday Nadia was able to hold Zachary for the first time. This is called a "kangaroo" hold where the baby is naked except for his diaper and held against Mom's skin. The kangaroo hold helps to promote mom and infant bonding, stimulate milk production, and has been shown to help regulate the baby's heart rate and breathing and calm him. Aaron was sad because he didn't go in yesterday and missed it. He had a slightly swollen throat and so decided to stay away in case he was getting sick. Any hint of infection is very serious for preemies and could easily be life threatening. After getting more sleep, Aaron felt well again today and was able to see Nadia hold him, our first time sitting together as a family.



We hope that  Aaron can try it tomorrow. Each time we get to hold Zach for 30-45 minutes, and it feels incredible. He is a tiny guy but when we touch his finger he tries to hold on tight and he nestles in to hear his mom's heartbeat.