Pregnancy Journey

Throughout the pregnancy with Baer, Mallory was followed extremely closely with weekly ultrasounds to monitor his development. It was apparent early on that Baer was going to need specialized care based on what the scans were showing, we just didn’t quite know the extent of it yet.

Parental genetic testing and an amniocentesis was performed at the week 18 anatomy scan due to fluid build up seen in his chest, what appeared to be cysts near his bladder, and inability to get a clear image of his heart. A million possibilities were explored and discussed and our minds were flooded with fear. Hydrops, a slew of chromosomal and genetic were most prominent in these discussions. Our primary fear was losing our baby that we already loved so much. By a miracle, all the test results came back perfectly normal - no chromosomal or genetic disorders. Over the following weeks the fluid build up gradually dissipated and the fetal cysts disappeared completely!

Many more mysteries appeared and disappeared through the pregnancy. There were weeks when amniotic fluid was plentiful and other weeks where it was dangerously low. Baer’s heart continued to be an issue where it showed a narrowed aortic arch and several VSD’s so we added biweekly fetal cardiologist appointments to the weekly maternal fetal appointments. His feet showed to be clubbed, so we knew an orthopedic doctor would be in our future as well. Towards the end, it was noted by our teams that his kidneys were “small and bright”.

Meanwhile, he continued to grow fast and strong! He was in the 98th percentile for weight and belly size, and height and lengths were right on average. He was also following his dad’s family history of a large head. Because of his good growth, his on going puzzle of complex medical issues, and Mallory’s placenta previa, a plan was made for a scheduled C-Section on June 7th when Baer would be 37 weeks.

Baer was born the afternoon of June 7th weighing 8 pounds and 6 ounces and was 19 inches long at St.David’s North Medical Center. It was apparent that he was not getting enough oxygen and discovered that he had a collapsed lung on top of his known complexities, so within minutes of his birth he was rushed away to the NICU where his new medical team jumped into action.

NICU Warrior part 1

Baer was immediately admitted to the NICU at St. David’s North Medical Center. Keith followed the tiny incubator while Mallory was sewn up and in recovery to make sure our baby boy was not alone.

Fast action was taken to place a chest tube and hook him up to a ventilator. An EKG was also performed with other imaging to track his known medical complexities. One of the VSD’s had already closed and even though his aortic arch was still narrowed, his heart was beating strong. One might even argue too strong, as his blood pressure was very high. His testes were undescended, but this was not concerning at the moment as he was still considered preterm. A quick inspection was performed and confirmed his feet were positionally clubbed. There was also a strange scar on his abdomen. His initial blood work showed electrolyte imbalances, high BUN, and high creatinine. Because there would be a need for ongoing blood work and close monitoring Baer also had a UAC/UVC placed.

Now came a crash course into parenting in the NICU. We weren’t able to hold our baby because of the UAC/UVC, but we were allowed to help with diaper changes, which we looked forward to each time! Similarly because he was on a ventilator and then a nasal cannula in addition to the UAC/UVC, breast feeding was out of the question. But, with wildly imbalanced electrolytes, breast milk was the best so the pump became Mallory’s best friend. Most importantly, we learned to listen to every single detail and take notes at every check in and morning and nightly rounds with the neonatologists.

We learned quickly what the changing electrolytes, high blood pressure, and creeping creatinine meant that Baer’s “small and bright” kidneys just weren’t functioning. Baer’s doctors at St.David’s started the initial conversation with Dell Children’s Nephrology department and then introduced us to the future need for dialysis and eventual transplant.

After five days of highs, like getting off the ventilator and onto a cannula, and lows, like aggressively spiking potassium, the very difficult call was made that he was going to need more on going specialized care and the transport team was called to take Baer to Dell Children’s Hospital.

We became fast friends with our nurses and doctors and are eternally grateful for their guidance and help during the unknown of the first 5 days of Baer’s life. (Looking at you Lana, Gabby, Annmarie, and Dr.Su among many others!)

NICU Warrior part 2

On June 12th Baer took his first car ride in the back of an ambulance strapped down in a plastic box. Nothing can prepare you for watching your under a week old baby be put in a plastic box and taken away by a group of strangers in an ambulance. We watched our baby be taken away from the only place we had ever known him and all the sudden were alone in a hospital ward for tiny babies without one.

We loved our nurses and doctors so much and were nervous about meeting our new care team. I kid you not - within 3 minutes of setting foot in the NICU of Dell Children’s Hospital we felt so at ease (well as at ease as possible). The amazing transport team leapt into action started getting our Baer into his new room and making us feel comfortable. The first night was a complete blur of new faces, exams, regurgitating all the medical jargon about Baer’s case that we had learned so far, and taking in the new information and assessments.

The first full day we spend at Dell we met with several people who dramatically have changed our lives. Dr. Riley of the Nephrology team and Dr. Wang of the Urology team. Two badass women who care for our Baer almost as much as we do. It was that first day we heard the term “Prune Belly Syndrome”. It was like a whoosh of relief to finally have all the puzzle pieces fit together and see the picture that had formed. The combination of conditions - non existent or minimal abdominal muscles, undescended testes with abnormal urinary tract, enlarged bladder with dilation of the ureters, chronic kidney disease, even the clubbed feet! Together, these all made sense.

Once the relief of understanding subsided, the fear creeped back in. These were all very scary conditions individually, how were we supposed to coach our child through this medically complex life? Our doctors and nurses all took the time to sit with us and answer questions whenever they came up and even draw diagrams and give us mini chemistry and biology lessons so we could fully understand what each diagnosis meant, how it would impact him immediately and how it would present and change in the future. With each medicine administered we eagerly asked questions and watched so we would know what to do when we were on our own. When we went home at night we were researching things like “peritoneal dialysis vs. hemodialysis” and catheter ports. In an odd way, we were fascinated by constantly learning and being amazed by both the human body and medical advances.

The next few weeks we settled into a new normal. Waking up and getting to the hospital early so we could be there well before morning rounds so we could know his morning labs first and think of all our questions before the team came by. Spending all day in our cozy room 27 where we alternated cuddling him once his UVC/UAC was out, pumping, trying to feed him the bottle, and meeting with different doctors. Waiting till the 7PM shift change so we could meet our night nurse and find our what doctor was on that night, then stay to make sure they and Baer were all settled in together. Finally we would get home late enough to eat some kind of fast food in bed, then Mallory would wake up every 3 hours to pump over night so we would have more milk to bring back to the hospital to do it all over again the next day.

NICU Warrior part 3

While we were definitely in full swing of routine, there were many highs and lows that were a part of Baer’s NICU stay. This section is to highlight some of the more dramatic aspects of the stay.

On June 21st Baer underwent his first surgery at 2 weeks old. This surgery was to do a ureter valve ablation and to see the full scope of the urological issues he was facing. The valve ablation did help relieve some of the hydronephrosis (back up of urine back into the kidneys that were already working so hard!). The surgery itself went fast and smooth and before we knew it he was rolled back to his room with us. They did tell us about a hiccup that came up, the anesthesiology team had a very difficult time getting his veins for the medication. And by very hard time, they had to stick him nearly a dozen times. Poor Baer looked like a little pin cushion and you could see the needle pricks and light bruising around them. His blood pressure did get very high during the struggle to get his veins, but it was back down to his “normal”, so there weren’t any lasting concerns.

The first night of recovery went well and the next morning he came off the ventilator and onto the high flow nasal cannula. Baer was moving in the right direction! Keith had to be at work, so Mallory spent all day at his side. It was a bit of an emotionally draining day, so when Keith arrived to say his good night to Baer so they could head home they decided to stay a little longer than normal. While holding him, Keith noticed some odd movements and got the attention of our night nurse. This triggered one of the longest nights of our lives. She was immediately concerned and called the on-call doctor that night to come and observe. At that point the movements had stopped, but it did solidify that we were going to stay later to make sure everything was ok. Dr. Michael asked us to film the movements if they happened again. Almost as soon as he got down the hall, it happened again, so Mallory filmed what we learned was a series of seizures while Keith held Baer. A rapid succession of things then took place. The Neuro team was called and the transport team jumped in to provide more specialized monitoring. After Keith almost passed out from stress (and was subsequently jokingly threatened by Baer’s doctor to relax or he would be admitted) the team pulled some strings so that Mallory and Keith could stay the night in one of the Ronald McDonald rooms. That night was busy with a flood of tests and various imaging studies. The next day he was still having mini seizures and Baer was put on a loading dose and subsequent dosages of Phenobarbital which meant the next couple of weeks our little man was extra sleepy. Good news ultimately came from the imagine and studies that the cause of the seizures were from a trauma caused by high blood pressure during surgery. This meant that it would still need to be closely monitored, but that there were no signs of long term damage or an on going seizure disorder.