Henry's Story

This blog has been created to give our family and friends updates on the status of our newborn, Henry Joseph. Henry was born on April 30, 2007. He was scheduled to arrive on August 11, making him a 25 weeker (born 570 grams). Basically, if all goes well, Henry will remain in neonatal intensive care unit (NICU) for what would have been the rest of his gestation in the womb (15 weeks).

WHY SUCH AN EARLY ARRIVAL?
Well, Kate began having vision problems on Sunday, 4/22. On Monday, 4/23, she called her doctor's office. After several hours, a nurse returned her call. When Kate explained that she was having vision problems, the nurse said, "Well, then you should call an eye doctor." Kate said that if hormones or something related to the pregnancy were causing the blurry vision, then visiting an eye doctor would not help. The nurse said, "Is the baby moving normally?" Kate explained that she had not felt the baby move during the pregnancy (something that she mentioned to her doctor at the previous visit, but he seemed unconcerned about it). Kate did get to see the doctor the next day (Tuesday, 4/24). At that visit, the nurse took Kate's blood pressure and said it was 120/80. The doctor listened to the baby's heart beat, and it sounded fine. So, he said told her to drink lots of water and come back the following Monday. During that week, Kate's blurry vision continued a few times. She took her blood pressure at two grocery stores, and it was rather high (in the 150s over 100s range). She was also rather swollen that week. Kate and Jeff bought a hand pump blood pressure device, and Kate's blood pressure continued to be high. They also used an automatic blood pressure reader that also showed that her blood pressure was high.

On Monday, 4/30, Kate and Jeff again went to the doctor's office. Again, when the nurse took Kate's blood pressure, she claimed it was 120/80. Kate was concerned because the nurse talked while taking the reading, and Jeff noticed that the nurse released the air gauge on the blood pressure device rather quickly. When the doctor came into the office, he asked how Kate was doing. She said she still had the blurry vision on occasion and was swollen. Jeff said that the nurse's reading of the blood pressure was dramatically different from the other four devices that Kate and Jeff had used to measure her blood pressure. The doctor then looked at the urine lab results and became concerned. He told them to take Kate to the triage unit at the women's center at Northwest Hospital. He said that Kate could have pre-eclampsia (meaning pre-seizure). Pre-eclampsia usually doesn't appear until week 30 or so, if at all. And, bed rest is used to hopefully bring down the blood pressure. The only cure for pre-eclampsia is delivery.

Kate and Jeff went to the triage unit where they confirmed that Kate's blood pressure was very high. A doctor was brought in to do a sonogram. Kate's doctor also came over to the triage unit. The two doctors conferred with each other and decided that Kate needed to be taken to another hospital where they had a Level 3 nursery, in case the baby had to be delivered right away.

Kate was taken by helicopter to University Medical Center. It was hoped that she'd stay there awhile before delivery became necessary. After two more sonograms, the doctors at UMC decided that a c-section was needed right away. They noticed some dips in the baby's heart beat. Kate was rushed into surgery. She was given a spinal anesthetic. A sheet was placed right below her chest so that she couldn't see what was going on. Jeff was brought into the surgery room to sit near Kate. And, at 6:45PM, they heard Henry Joseph's first cry. Henry was rushed out of the room. Jeff went along with him to NICU. It took a little while to sew Kate back up. She was then taken to recovery. After a few hours, Kate was eventually taken to the NICU to see Henry for the first time.

Henry was placed on a high frequency oscillator. This is a machine that provides oxygen to the baby. It does all of the breathing for him. In addition to tubes down the throat, the machine makes the baby shake, so babies tend not to like it very much. Imagine going from a dark, relatively quiet, calm environment (womb) to one that is noisy and bumpy (warming table in NICU).

THE FIRST WEEK
The first week is a bit of a blur. Kate was released from the hospital on Friday, 5/4. Leaving the hospital without Henry wasn't easy. Henry stayed on the high frequency oscillator. The doctors detected a PDA on the second day (PDA stands for Patent Ductus Arteriosis). A PDA is a small blood vessel in the lungs that is supposed to close after birth. Henry's PDA didn't close, so they had to give him some medication to make it close. It did, which was good, because he otherwise would have had surgery to close it.

His blood sugar levels weren't steady that week (they continue to be unstable). And, he was under phototheraphy for a good part of the week, because of a high bilirubins in his blood stream. He had a few blood transfusions that week as well. The nurses and doctors had problems getting into his veins, but they were able to get a PIC line into him (necessary for giving him nutrients and fluids). They were unable to get an arterial line in him, which meant that they have to prick his foot every few hours to do blood tests. Finally, he had edema (swelling due to excessive fluid retention) for about seven days. He went from 570 grams to 900 grams at one point, but it was all fluid retention.

On Sunday, 5/6, Henry was moved from the high frequency oscillator to a more conventional ventilator (Servo Ventilator 300). This ventilator is different because it doesn't do all of the breathing for the baby. The nurses set how many breaths per minute will be assisted by the machine.

THE SECOND WEEK
Monday, 5/7 was a great day. Both Kate and Jeff got a chance to change Henry's diaper. They are really, really small diapers...and they are rather big on Henry. The nurses tried giving Henry 1ml of breast milk, but he wasn't ready for it.

Tuesday, 5/8 was a strange day. Henry had had a rough night. He had lost a lot of his excessive fluid (which was good) and looked like a different baby. But it was a lot to lose at once.

Wednesday, 5/9 was a really rough day. They were again unsuccessful getting an arterial line in him. Henry's lungs were not doing well. They had to up his oxygen levels to 100%. Basically, on these machine, you consider how much oxygen is being provided (those of us not on ventilators breath air with 21% oxygen...the goal). But you also look at the baby's saturations levels (how well they are breathing a given % of oxygen). It was determined that Henry had chronic lung disease. So that he could breath, they had to give him steroids. There is a potential negative side effect of steroids, some neural damage. But the study showing this was based on long term steroid use in preemies.

Henry had a good Thursday, 5/10.

On Friday, 5/11, the nurses tried giving Henry breast milk again. The breast milk is given in a tube to the stomach as babies do not developed sucking and swallowing reactions until around 34 weeks of gestation. 1ml was given. And he did really well with it. And they continued to up the ml every fourth feeding.

On Saturday, 5/12, they moved Henry from the conventional ventilator to the CPAP (continuous positive airway pressure) machine. This meant that they removed the tubes going down his throat and that he was breathing on his own (but the machine provides the oxygen...at levels above the 21% we breath). He continued to eat well.

On Sunday, 5/13 (Mother's Day), Kate got to hold Henry in her arms for the first time. That was exciting. Henry continued to do well on CPAP and continued to eat well (up to 3ml of breast milk every 3 hours). The one bad thing was that something went wrong with his PIC line, so it had to be removed.

THE THIRD WEEK
On Monday, 5/14, they had problems putting in another PIC line. They finally got one in later in the day. Henry did have a "brady." His heart rate dipped, and the nurse had to touch his feet to remind him that he needed to breath. He was moved from his table bed to an isolette in the afternoon, which is nice because it is much less noisy in the isolette. In the evening, Jeff got a chance to hold him skin-to-skin (also called kangaroo care). Henry looked like he was enjoying it. But he didn't enjoy the move from Jeff's arms back to the isolette. He got very worked up. He gets worked up quite a bit when he gets touched too much (e.g., when the nurses have to take his blood). He shows his discontent in several ways: (a) he furrows his brow, (b) he wiggles his arms and tries to pull out his feeding tubes or tries to take his oxygen mask off, and/or (c) he gives a silent cry. The nurses say he's feisty. Now, feisty can be a good thing (because the kid is clearly a fighter). But taking his oxygen mask off and pull out his feeding tube (both of which have happened several times) are hardly good things. Also, when he moves around too much, he burns calories (and he unfortunately doesn't have weight right now to spare).

On Tuesday, 5/15, Kate came down with stomach flu, and for obvious reasons, couldn't go to the NICU to see Henry. She has stayed away from the NICU since Tuesday because she needs to make sure that she isn't contagious. Henry continued to do well on Tuesday.

On Wednesday, 5/16, Henry was doing well in the morning but not so well in the evening. The nurses felt that, although his saturation levels looked good, he looked like he was struggling with his breathing. Also, a combination of things suggested that he may have an infection (not uncommon in preemies). He had a few bradys throughout the night. Jeff decided to stay home, just in case he too had flu germs (he hasn't had symptoms, but we didn't want to take a chance).

On Thursday, 5/17, Henry was doing OK. His oxygen levels were brought down to the 30s. And, the doctors decided to give him seven days of antibiotics to fight whatever infection might be present or on the horizon. At this point, he only weighs 610 grams. Kate's family continued to visit Henry throughout the day. Kate and Jeff plan to resume NICU visitation tomorrow.