She's Here! - Lillian's Birth and Transfer to Seattle Children's Hospital

Once we had discovered that Lillian had Hypoplastic Left Heart Syndrome, there really wasn't much left to do about it. Yes we had follow up appointments and many meetings with doctors, but for the most part, our lives continued as normal. In the time span between learning about Lillian and her condition and her arrival I graduated from the University of Washington and started my career at Research in Motion. We spent most of our time trying our best to enjoy life with the weight of Lillian's condition over our heads, spending as much time as we could with Annabelle because of the difficulty of spending time with her after Lillian's birth.

As soon as we learned about Lillian's heart condition in early March, the plan was always that Kathryn would either have to have a C-Section or be induced. Neither of us liked the idea of a C-Section unless it was absolutely necessary for Lillian's sake, so we were pleased and surprised when during a routine weekly pregnancy check up on July 21st, the doctors informed us that Kathryn would be induced the next night. The reason for such a short notice was the doctors decided that Kathryn was extremely close to giving birth on her own, and they did not want Lillian born on the weekend when the hospital was short staffed (for some reason, people and their children seem to only get sick on the weekday). Aside from having such short notice, this was kind of a relief. We had been grappling with Lillian's condition for months now, and we were ready to meet her, fix her heart and get her started with her life. We were told to arrive at Labor and Delivery on Thursday, July 22nd at 8:00 PM, which we did.

Our view from the UWMC room

At this point, Kathryn was a little ahead of the doctors' schedule and was very near to giving birth (it probably did not help that we spent the day walking around the mall with Annabelle). Even though the point of us arriving at the hospital was to induce Kathryn, she was far enough along that they actually gave her a medicine to slow labor as they didn't want Lillian born during the night either. At this point, you should be noticing a trend with the doctors' pickiness with time of birth. The whole point of the induction was to have the birth at a set time when everything was ready, and it seemed like Lillian was doing everything possible to throw that into chaos. With labor sufficiently slowed due to the medicine, the only thing left to do was wait until morning for Lillian's birth.

Bright and early (7:47 AM) on July 23rd, the doctors turned off the labor slowing medicine and started the induction medicine. It took several hours for the old drugs to wear off and the new ones to take effect, but Kathryn was in full labor around 4 hours later. My exact Facebook post at 11:36 AM was "Here we go!", and I couldn't have been more right.

Lillian Maureen Boer was born at 11:45 AM on July 23rd, 2010 at the University of Washington Medical Center. A bright and sunny day, she was greeted into this world by pure pandemonium and chaos along with about 25 people being various doctors, cardiologists, nurses, med students and Kathryn and I, of course. She was born weighing 7 pounds, 4 ounces and being 18 and a quarter inches long. I had a couple seconds to cut the umbilical cord before she was immediately whisked away by a large group of the doctors and nurses and into another room where more equipment was available.

Having witnessed Lillian's birth followed by her being immediately removed from our presence was more than a little overwhelming and stressful. We both knew this was a critical time and were expecting this to happen, but no amount of expectation and mental preparation can really condition you for such a situation. We did have a plan beforehand where I would stay with Lillian as long as I could, so when they took her from the room I was able to stay with her. They immediately hooked her up to monitors and stabilized her, running the standard APGAR score tests while also dealing with her condition. During this time, I was able to get one picture of Lillian, the one you see above.

Lillian was promptly transferred to the NICU (Neonatal Intensive Care Unit), as she required a prostaglandin IV within an hour of birth to prevent her ductus arteriosus from closing. This was critically important as this shunt was keeping her alive, and it is normal for this to close shortly after birth (it starts closing immediately on first breath, but takes about 4 to 10 days to close completely). To give her this medicine, the medical team decided to give Lillian an umbilical PICC line. A PICC line, or peripherally inserted central catheter is an intravenous line going from a vein to the heart, typically the superior vena cava or cavoatrial junction. This enables us to give medicine directly next to the heart. Given that this is a sterile procedure, I had to leave her side in the NICU and return to Kathryn, as much as it frustrated me to leave Lillian's side.

Returning to Kathryn was nice to give her an update on how Lillian was doing, considering the room emptied with Lillian was leaving and she was left with one doctor and one nurse and no updates. Kathryn was as expected at this point, which if you know her means that even less than hour after birth, she was busy pulling out her IVs (which she really did do herself, much to the chagrin / reluctant amusement of her nurse), getting dressed and getting ready to charge out of the Hospital. Stressed and overwhelmed, she was eager to see Lillian before she was transferred to Children's.

Shortly before 2 PM, the line was in and I was able to return to Lillian. I promptly scared her by forgetting to turn off the flash on my camera in the dark NICU, but was able to see her calm and sleeping for the first time after birth. With the PICC line in and Lillian stable, it was time to transfer her to Seattle Children's Hospital.

The transport team took Lillian and set her up in a specialized transport system. Note the 3 active IV pumps on the top of the bed, one is the prostaglandin that is keeping her alive. Just before 3 PM, the transport team, consisting of a driver, a Children's NICU/CICU nurse named Patty and a respiratory tech, along with myself left Children's. This was the first time that I had sat down or had a chance to breath since Lillian was born, but I had enough of a clear mind to be able to help the driver fix his router when he asked me about how to do it. Why he asked, I don't recall, but it was such an odd request that I can't help but remember that.

Once we arrived at Children's, Lillian was taken back to the NICU. I was not allowed to accompany her for this as they wanted to get her stabilized and do an echocardiogram to confirm her condition. While I was not able to be with her this time, a nurse recalled to me at a later time that Lillian was "vigorous" and fighting the echo technician and the nurse during the procedure. Even at a couple hours old, her fighting spirit was abundantly clear, and she was apparently quite the fighter, as we arrived at Children's at 3:15 PM, and I was not able to see her until around 7 PM. The echocardiogram was as expected, but this was the first time we could see Lillian's condition outside of the womb.

In addition to verifying Lillian's anatomy, Children's staff also placed her in a sub ambient hood. Since she had HLHS, we needed to have her oxygen levels lower than a normal baby would have to prevent her from prioritizing blood to the lungs at the expense of the rest of her body. If allowed to have high saturations, Lillian's lungs would swell, making the Norwood surgery more difficult. After they had finished the ECHO and had placed her in the sub ambient hood, I was allowed to see her.

Walking into the NICU for the first time was a bit overwhelming. Lillian was completely surrounded by equipment and there was very little room for us (there is maybe 3 feet between where I'm standing and where Lillian's bed is in that picture). Kathryn arrived shortly thereafter, already walking on her own for the most part. I cannot emphasize enough how proud I was/am of her for being such a fighter and putting her own needs second to her daughter. Now around 8 PM, Kathryn and I were able to hold Lillian for the first time.

Unfortunately, due to Lillian's low oxygen requirements, we were only able to hold her for a half hour at a time, and only three times a day, even with a nasal cannula. Since Lillian was in bed, stable and sleeping and Kathryn and I were exhausted, we returned home. Leaving Lillian was extremely difficult, but the NICU rooms are too small for parents to sleep in there, so the best option for us was to return to home and get some rest. Lillian's birth was been exciting and stressful, and the chaos surrounding the following events over the rest of the day even more so.