Jacob's Story

We weren't expecting to have our son, Jacob, on June 21st. After all, he wasn't due until September 9, and from all indications, we were having a normal pregnancy. Deb was feeling pretty good and was working at the humane society full time up until that point. In fact, we were surprised that the pregnancy was going so well.

On Sunday, June 16th, Deb mentioned that she hadn't felt Jacob move all day. This was unusual—he was normally very active in her belly, so it was a little worrisome to us. We made a doctors appointment for the next day, and the doctor used his Doppler to listen to the heartbeat. We could hear it, strong, rhythmic, reassuring. Nevertheless, he scheduled our second ultrasound for that Tuesday, just to reassure us and himself that all was well with the baby.

We went back to the hospital the next day for the ultrasound. There he was on the monitor, moving a bit, heart beating, looking good. Or so we thought. The technician said he was measuring a bit small, and she seemed pretty preoccupied while doing her measurements and listening to the blood flow through the umbilical cord. We had the uneasy feeling that she wasn't telling us something, but since they aren't supposed to make diagnoses, she couldn't tell us anything. Our doctor was off that day, but they sent the ultrasound results upstairs so he could review them the next day.

On Wednesday, Deb called first thing in the morning to see if the doctor had reviewed the ultrasound results yet. He called back mid-morning, and was a bit concerned and referred Deb to a perinatologist in Denver. Deb called the doctor in Denver, and although they normally had a 6–10 week wait for appointments, they bumped some things so we could get in there on Friday, June 21st, now 6 days since she felt him move.

We arrived at Presbyterian/St. Luke's Hospital in Denver at 11:30 am for an ultrasound with the perinatologist. They had a better machine, and they confirmed that there were some growth problems with Jacob. He wasn't getting the nutrients he needed through the umbilical cord. They moved very quickly, and within about five minutes after Deb was on the table for the sonogram, they performed an amniocentesis to screen for genetic problems. His head was one week behind in development, his limbs were two weeks behind, and his torso was four weeks behind. Needless to say, we were terrified that something was very wrong with our baby. Deb had an ultrasound at 20 weeks and everything was on track at that point, so all of the lag in growth had happened in the last eight weeks since then. Deb had done a little research online prior to the second ultrasound and had read that clotting problems can cause placenta problems, so she mentioned that she had had a pulmonary embolism two years before, and immediately their diagnosis changed—where before they had been leaning toward Down's syndrome or some other genetic disorder, now they felt that it was a clotting problem in her placenta. The doctor told us she was going to admit Deb to the hospital, and she shouldn't expect to leave without having had the baby. They were going to try to keep him in her as long as possible, but they needed to monitor the fetus and the mother very closely.

In record time, we were whisked from the ultrasound room to a hospital room on the high-risk wing of the labor and delivery ward, and from there things moved even quicker. Fetal monitors were attached to Deb's stomach. Vials of blood were drawn, and they soon determined that she had HELLP Syndrome, preeclampsia, and that her liver was in bad shape due to the HELLP Syndrome. At the same time, they noticed a couple of dips in Jacob's vital signs, and they were very concerned. The decision was made to deliver Jacob via emergency C-section that day, at 28 weeks gestation, for both his and Deb's health. The doctor told us that we were lucky to have come in that day—if we had waited until Monday, she thought that Jacob wouldn't have made it and that Deb would have had some serious health problems by that point.

The anesthesiologist came in to let us know what was going to happen. They wheeled Deb into the delivery room and Geoff was outfitted in scrubs, hair cover, gloves and shoe covers. It was amazing how fast things were going, how scared we both were, and how many emotions can run through you at a time of stress like that! They kept Geoff outside the operating room until Deb had her spinal block, then he was allowed in to sit beside her. They draped Deb's lower half so she couldn't see what was happening, and Geoff didn't want to see what was happening, so he concentrated on Deb. At 3:16 p.m., we heard Jacob crying—a more welcome sound cannot be imagined! It meant he was breathing! He had an APGAR score of 7, and five minutes later it was 8—good scores, especially considering his size! Unfortunately, because things happened so quickly and unexpectedly, we didn't have time to notify our family and friends that Jacob's birth was imminent. Even more distressing, we hadn't thought to bring a camera with us to record any of our first images of Jacob!

A nurse took Jacob to a warming table, where they decided not to intubate him since he was breathing pretty well on his own. They did some work on him, suctioning his nose and mouth and tying off his umbilical cord. They invited Geoff over to cut it, which he did with some trepidation! Jacob was 1lb, 10.5 oz, and 13.8 inches long. He looked so tiny, so fragile, and so beautiful! The nurses talked softly to Geoff, letting him know how everything was going and what would happen next. Then they bundled Jacob up warmly, and Deb was left in the delivery room while Geoff and the nurses walked slowly to the Neonatal Intensive Care Unit. There, Jacob was put on a warming table, surfactant was poured into his lungs, and any number of things was done. All Geoff could do was stare at his son, marveling over him and feeling very fortunate that we were in that hospital at that time and that they weren't in any rush while they were working with him. It meant he was stable. After about three days, the nurse invited Geoff to slip his wedding band over Jacob's arm—a size 10 1/2 ring hanging like a bangle bracelet! It's one of the more dramatic pictures, and served to show family and friends just how tiny he actually was.

Deb spent 8 days in the hospital recovering from the C-section and taking lots of medications to get her liver enzymes back to normal and her blood pressure under control. Jacob spent 75 days in the Level I and Level II NICU (Neonatal Intensive Care Unit). Mom and Dad drove out there nearly every day to spend time with him, hold him, bathe him, feed him, and let him know that his mom and dad were there.

Jacob lived in an isolette to help control and maintain his body temperature until August 11, when he graduated (on a very happy day!) to an open crib. He was on a nasal CPAP (continuous positive air pressure) for 10 days, then a nasal cannula for 19 days, and went on room air on August 2. Each of these steps was cause for celebration. He was fed through both and oral and nasal gavage until his last three weeks in the NICU. All this time, we alternated between feeling great about his progress to becoming despondent that he wasn't doing as well as we had hoped. Hydronephrosis, milk allergies, possible infections, staph aureus infection, worries about his kidney and liver function, retinopathy of prematurity (ROP)—all were hurdles he had to clear before he could even be considered for release from the hospital.

He did very well, managing to dodge most of the bullets preemies face but it was a very scary time for Mom and Dad as his condition could change from one minute to the next. At first, he was so fragile that he could not be held at all, and then only for very short periods of time and very carefully. He had so many tubes and wires and monitors hooked to him and his skin and nervous system were so fragile that it was impossible to cuddle him and actually painful for him for us to stroke or touch him in ways that you would touch a full term baby. With his condition so fragile, something as simple as changing his diaper was quite an event as it had to be done with both hands inside of an isolette with very slow, precise movements to avoid stressing him out more than we had to (preemies can have IVH (brain hemorrhages) just from getting stressed out by noise, movement, etc.; and that can cause major brain damage, seizures and even death. It was all very scary and overwhelming at times. As any preemie parent can tell you, you spend a lot of your time with your child staring at the monitor checking his vital signs. You become very adept at knowing when to ignore alarms and when there actually is something going on.

As it turned out, Deb has a kind of unusual blood mutagen (clotting problem) called Factor 5 that causes these problems in pregnancies. Jacob had IUGR (Intrauterine Growth Restriction), and Deb's placenta was very small and full of clots and there was hardly any amniotic fluid. Most women who have this problem go through several miscarriages or stillbirths before it is diagnosed, so we count ourselves blessed that it was caught when it was, and that we were in the best hospital in the Midwest for neonatology. The doctors and nurses at PS/L were absolutely fantastic, and we feel very fortunate to have had Jacob there.

Jacob came home from the hospital on Tuesday, September 3rd at 10 ½ weeks old. He weighed 4 pounds, 15 ounces on the day he came home.

We were amazed that these problems hadn't been discovered much earlier in the pregnancy. After all, the main reason we kept driving to a hospital and doctor that was out of our way was because he had been Deb's doctor when she had the pulmonary embolism. We figured it was best to have a doctor who knew Deb's past medical history. The perinatologist said most family practitioners would not know of this problem unless they had encountered it before. It was fairly rare, and the link between the blood mutagen and miscarriages was only recently documented. In fact, it is usually only after several miscarriages that it is diagnosed at all! She made sure to call our doctor that Monday to fill him in on what was happening and to educate him about what to look for.

If there is a lesson to be learned here, it is that you, as the woman carrying your baby, knows best how he should be acting in your womb, and if there is any change in his activity, you should not hesitate one second to call your doctor. Do not take "no" for an answer—see him/her immediately. If they won't see you, go to another doctor. We shudder to think what might have been if Debbie hadn't listened to her intution and called her doctor right away. Either she or Jacob would probably not be with us right now if it had been allowed to go on. So, listen to your body, listen to your intution and feelings, and don't feel like you are being a wimp if you don't feel right or are concerned about your baby. You may only have one chance to have a baby, so make it count!