I am not looking forward to going back to the hospital soon. Our last hospital stay (the one I am about to describe) lasted six days and five nights. Upon returning home from our last stay, I realized how much of my time at home I had taken for granted with my other children. My husband and I were ecstatic to return back to our regular routine and comforts there. Home is seriously the best place to be, especially if you are a baby…or an adult with a preference for a cozy bed with WARM blankets, a closet filled with ALL your clothes, a healthy-stocked kitchen, a bathroom WITH a lock, and happy, healthy children (for the most part)! It saddens me to know that so many spend much longer times in the hospital than we did.
On January 3rd, 2014, Baby #4 had an exploratory surgery to look for the cause of his supposed duodenal atresia that was discovered during an upper gastrointestinal dye study as discussed here. During the two and one-half hour long exploratory surgery, they discovered that the cause of his duodenal atresia was an annular pancreas. An annular pancreas is a congenital condition where the pancreas is formed in a way that it wraps around the duodenum, causing it to narrow. In Baby #4’s case, the narrowing was more severe than they had initially thought; the opening in his duodenum (which transfers food to his small intestine) was only about the size of a pin point. Our surgeon was amazed that he had not had more complications than what we dealt with almost his entire first year.
When Baby #4 finally came out of surgery, he was connected to SIX different tubes…a catheter, heart monitor, IV fluids, feeding tube, nasogastric tube, and an epidural. He also was in arm restraints to prevent him from pulling out the tubes in his nose. It was a sad sight. Saddest of all was that he didn’t really move, and although he was awake, he really wasn’t cognizant of what had just happened to him. After arriving to our room, we sat by his side just looking at him, hoping to get some sort of response. For the time being, his stares were blank. He lay there quietly and slept quite well the first night.
The second day was a different story, however. Baby #4 was obviously scared. I am not sure which was agitating him more, his pain, or the incessant traffic through our room by hospital staff. He fought sleep. He cried A LOT, which is not characteristic of him at all. After trying EVERYTHING to get him to rest, my husband and I finally agreed to give him morphine, which was only a godsend in the sense that it helped him relax. Other than that, the drug’s effects were awful to see. The dose obviously made him high and he was quite inactive with it as well. As expected, his sleep that night was broken and unsound.
The third day was by far the worst. We could tell the pain was really starting to affect him, and that his surroundings were making him uneasy. EVERY TIME someone came into the room, he would cry. HE DID NOT SLEEP ALL DAY. Because of his uneasiness, neither we nor nursing staff could tell if he was upset due to his pain or because of anxiety. Therefore, it was decided to increase his epidural in attempt to control his “pain” (if it was such). Unfortunately, increasing his epidural caused his blood pressure to drop and it was subsequently decreased to the former dosage. With few other options available for pain without a doctor’s order, by the end of the day, we were left with pumping him full of morphine just to get him to relax and fall asleep. This, BY FAR, was the day heaviest with emotion for Jeff and me. Seeing our child hurting so badly, scared of those that are there to help him, and having him be mostly nonresponsive to soothing from his parents was trying to say the least.
By day four, though, things seemed to be perking up. His epidural was removed since it was no longer needed to control severe pain (pain peaks at around day three according to the hospital’s rounding anesthesiologist). With the epidural gone, we were eventually able to remove his catheter too. When Baby #4 started to get blood in his nasogastric tube (brown tube), it was also removed. The nasogastric tube essentially worked as a vacuum, sucking out stomach secretions so that his gut could rest after surgery. When blood was found in the tube, it was evident that the stomach was empty, functioning again, and did not need the help of the “vacuum” (the blood was from the “vacuum” sucking up the only thing available to it, the stomach wall). Feedings through a feeding tube (yellow tube) were initiated now, but by-passed the stomach and duodenum and emptied donated breast milk directly into his small intestine. By evening on the fourth day, the feedings through the feeding tube were successful, and we were able to bottle feed very small amounts of donated breast milk in order to test his gut’s tolerance.
He even smiled some this day…
The fifth day, we continued successfully with all bottle feedings, increasing the amount he received little by little until we were at our previous feeding schedule. When this happened, his feeding tube, along with his port for fluid, were removed.
When we were able to go home on the sixth day, Baby #4 was even able to start eating baby-like foods again! Best of all, throughout the hospital stay and once at home, we have experienced virtually NO PUKING! This was the most unbelievable thing to my husband and me since we have carried a towel or blanket with us wherever we’ve gone (for the past 10 months!) – just in case we had a profuse puking incident! NO. PUKE. AMAZING! AND, we were a little surprised by this, but since surgery, Baby #4 is no longer constipated! In fact, HE GOES #2 EVERYDAY! Not as surprising, he’s also gained about a pound during the month following his surgery!
As the days went on, Baby #4 healed quite nicely. Two weeks post-op, however, we noticed the area that we thought was swelling at the incision site to be quite prominent. Our suspicions were that Baby #4 had developed a hernia, and after taking him to our local clinic, our post-surgical hernia concerns were validated. Another surgery is imminent for Baby #4.
His surgeon also confirmed our concerns, and told us that only 2% of surgeries of this nature end up with a hernia…what a bummer. Soon enough, we will trek back to the hospital to have this repaired…
Other Health Concerns
Before we adopted Baby #4, we were really leery about adopting a child that may have many health issues. Although Baby #4’s matters have not been as severe as some, he has had several issues besides his annular pancreas and subsequent hernia, that we have managed since birth.
1. Baby #4 has a hemangioma on his nose. This actually ulcerated within the first couple of months at home. We were initially told it was a birth mark (stork bite), so when it burst and left a large scab on his face, we went in for a second opinion. Now that it has ulcerated, its growth is complete. We are hopeful that it will be less obvious, or even gone, by the time he is three.
2. In December of 2013, Baby #4 had a urinary surgery to fix a condition unassociated with Down syndrome. It was another surgery where he was put under anesthesia, but as an out-patient procedure, we were home by the evening.
3. Baby #4 was born with an ASD (atrial septal defect) that we are monitoring. An ASD is a congenital heart defect in which there is an abnormal opening in the dividing wall between the upper filling chambers of the heart (the atria). We found out about his heart condition shortly after birth. Since heart conditions are common in people with Down syndrome, babies with Trisomy 21 are routinely given a heart echo before discharge. During this echo, a small hole was discovered. Initially, doctors thought that it may close on its own, however after having two echoes since; we now know that it will also need to be repaired in the future. Having the ASD made his other surgeries somewhat complicated in terms of anesthesia. Sedating a child with an ASD and Down syndrome is quite time-consuming (for a variety of reasons), compared to that of a person with a normal heart, and complications are more likely to occur. We are thankful to have had great experiences regarding his anesthesia thus far. We are also hopeful that the repair of his ASD will be relatively easy compared to other heart procedures…
My husband and I are thankful to have been able to handle individually each of Baby #4’s new challenges. Although our clinic and hospital visits have been frequent, we feel like we have been able to prepare ourselves well for each new issue. So far, although each process has been somewhat stressful, we have not been completely overwhelmed as a family and have been able to cope successfully.
Being a mother of four children, I am continually rewarded through my kids’ trials and celebrations, and softened by their love and spirits. This year, I have been absolutely amazed by Baby #4’s resiliency and happiness throughout his first year. His desire to thrive and ability to bear through pain with a smile has been a reward like none other. There is no gift like that of life, and I am blessed to be his mother (and my others’) and help him (them) LIVE HIS (THEIRS)! I am hopeful his rough start will give him determination to succeed in the future, and inspire others (especially my older children) to overcome any obstacle that may come their way!