Waiting for Surgery - Lillian's Stay in the NICU

Lillian's first twelve days of life were spent in the NICU at Children's Hospital. For a prenatal diagnosis this is fairly standard, as it gives the doctors a chance to figure out the specifics of a child's anatomy and finalize a plan that is specific for the child. The last thing they want to do is rush into surgery unprepared, so we were more than alright with allowing them the time to prepare. During this time, she had to be on a constant drip of prostaglandin. It's an interesting feeling, seeing a single IV pump that is responsible for keeping your child alive. You can see it in the picture below, middle pump on the right. The other ones were important, but that one alone kept her alive.

The first day that Lillian was in the NICU was the day she was born, July 23rd. On July 24th, our biggest concern was getting a PICC line in as her lines through her umbilical cord were not steady. I don't remember if I explained this already, but a PICC line is a type of IV that is used in some situations where you need more stable access than a normal IV or if you need to be able to draw labs as well. PICC stands for peripherally inserted central catheter, and is inserted from the entrance point and then drawn through the veins until it reaches one of the major vessels just before the heart. According to the nurses who have tried many times to insert the lines (she's been pricked around 20 times in the foot trying to get a line in, so she's not exactly fond of her feet being touched any more) she has rolly veins, so that was an issue for quite a while until they took her to Interventional Radiology, where they can insert a PICC line with the patient asleep (normally the procedure is done at the bedside with minimal pain management) and with the use of imaging technology so they can see exactly how the catheter needs to be inserted.

An arm PICC, this one didn't stay in long as surgeons do not want them in the arms.

Before they attempted to do a PICC line through the legs or arms the first time, they attempted to retry a PICC line through her umbilical cord, as that is the easiest way if it is still an option. Establishing a PICC through her umbilical cord was successful, but the nurse gave her a dose of morphine during the procedure. It appears that she might have gotten too much morphine as she spent the next five hours forgetting to breath constantly. The nurse also never put in an order for the Morphine until five hours afterwards, so we never will know exactly how much she got and if it was too much. This is the one time I have ever been upset with Children's staff, but they were able to fix the apnea by giving her a drug that counteracts morphine. This drug woks instantly, so seeing her go from not breathing to screaming her head off in less than 7 seconds was quite an experience. However, getting that PICC line in allowed us to pull an IV line from her hand and a different PICC from her arm on the 28th. On top of getting the lines pulled, she also had two pre-surgery ultrasounds on the 28th to help the surgeons get extra information.

Our plan from the beginning was to have Annabelle see Lillian as soon as possible, and she was able to do so for the first time on the 25th, although to be honest, Annabelle seemed more interested in Captain Jack Sparrow, who happened to be visiting that day.

Annabelle was thrilled to see Lillian and hold her hand, but for the most part was thoroughly upset at being unable to do whatever she wanted in the hospital room. She did visit several more times, including getting to hold Lillian before the surgery happened.

Aside from having to constantly put lines in, one of our biggest concerns while Lillian was in the NICU was managing her oxygen levels. For a person with normal anatomy, we would expect to see oxygen saturations anywhere from 95% to 100%. Since Lillian is mixing her oxygenated blood with her unoxygenated blood because of her ductus, we would not expect her to be at this level. In fact, we want her to be lower than that, ideally between 75% and 85%. This is because higher saturations in a Hypoplastic child means there's lower blood pressure in the lungs, prioritizing blood flow there at the expense of the rest of her body actually getting oxygen. So not only does her body not actually get enough oxygen with high saturations, but the increased blood flow to the lungs causes them to swell, making the small space the surgeons have to deal with even smaller. All around, not exactly ideal.

To try and accomplish the lower oxygen levels, we had to put Lillian in a sub ambient hood.

In the hood we can regulate oxygen levels, and in Lillian's hood the oxygen levels were about 15% to 16% (normal air is 21%). Because she needed to be breathing in the tent most of the time, we were only able to hold her for 30 minutes at a time, 3 times a day, with several hours (3 to 4) between each time. When we did have her out, she either needed to have a nasal cannula or have her special air blown on her to keep her from getting her saturations too high. In the end, none of these techniques were particularly successful, no matter what we did to lower her levels, she would just breath faster and get her saturations right back where she instinctively wanted them. Aside from being one more piece of evidence for the redhead pile, this exasperated a couple of other issues that she had, mainly poor circulation. We could tell that this was happening simply because of temperature changes across her body, as her core temperature is normally around 36.5 C (97.7 F), while the probe on her foot recorded around 30.2 C (86.4 F). We were able to get her circulation up by increasing her blood pressure by giving her blood transfusions, but never to be at an equal level with her core.

Since we arrived at the hospital on a Friday (7/23) , we had to wait to the next Monday (7/26) to learn anything about the plan for Lillian, as Children's only holds cardiac surgical conferences every Monday. On the 26th, she was presented at the conference along with the information they had gathered through the ECHO. About the only thing we were told from the first conference was that there was unanimous agreement that she needed surgery, and a Norwood to be specific (some HLHS children cannot have Norwoods due to other complications). One blessing about her specific case is that she doesn't have other complications. It is quite normal for HLHS to be accompanied by other defects, none of which Lillian has. She does have severe hypoplasia of her ventricle and her aorta, but she has a text book case of the condition besides that.

From the conference, we knew the date of the surgery was tentatively scheduled for August 3rd. As we approached the date of the surgery, we had to make some changes to prepare. First of all, we needed to change her to a NG feeding tube as we couldn't have her eating by mouth and spitting up, as this would postpone the surgery, even though she was only getting 5ml every hour or so. This was placed on July 30th. Also as mentioned earlier, we had to pull out her umbilical cord lines due to that falling off, and were only able to get a PICC line in her arm after failing multiple times with her foot and arm, and even then only at IR. That took quite some time to get right as they started trying on July 30th, and were only able to get it in on August 2nd.

Even though the surgery was scheduled for the 3rd, it was pushed back due to 2 heart transplants in the same night. Finally, on August 4th, it was time for the biggest day in Lillian's life, and what will likely be the longest and most complicated surgery she will ever have, even though she will only be 12 days old. We knew in advance that we would not return to the NICU after surgery, but we were very fond of the nurses who were there.