Summer is in the pink. For two reasons. First, her hermaticrites came back at 31 indicating that a blood transfusion was necessary. At the time more than 13cc’s of blood had been drawn for various reasons over the past week and a half. With the added infusion of blood her skin color wasn’t as pale and her A&B spells returned to her normal amounts. Second, today Summer was wearing a pick dress that one of the other mothers in the NICU brought in for Summer to wear. She is being feed 17cc’s of formula every two hours. Instead of quickly dumping the 17cc’s of formula into Summer’s small stomach through the gavage tube Ms W (one of Summer’s primary nurses) uses a syringe and a pumping machine to inject the 17cc’s of formula over the course of an hour. This reduces the impact of 17cc’s entering Summer’s stomach at one. Therefore a full tummy is not pressing against her diaphram making it harder for her to breath. Mom and Dad are extremely happy that the transfusion solved the instability in Summer’s vitals. This is the third time low blood has caused Summer condition to seem unstable. Dad will ask the doctor today why they are waiting for her hermaticrit level to drop below 35 when Summer clearly shows signs when the levels drop into the high thirties. Lisa’s mom and sister were up from VA Beach today to see Summer. They are very happy with Summer’s progress. Grand-mom got to see Summer’s eyes open for the first time. Mom and Dad when shopping for clothes for Summer today. The best place to shop is in the doll clothes section of any toy store. We went to Toys R Us. We purchased two little cotton doll t-shirts that Summer can wear with her diaper and a little cotton jump suit. Both outfits were approved by Doctor V. Shortly after Doctor V pulled Lisa aside and asked her to promise two things. First, that he be invited to Summer’s baptism, and second, that he be invited to her wedding. If that isn’t a vote of confidence from the right source, I don’t know what is. Mom was giddy the entire night. As we drove home from the hospital her and her sister sang all of their favorite songs at the top of there lungs. Those Were the Days My Friend, Jeremiah was a Bull Frog, Rain Drops Keep Falling on My Head, and Hawaii Five-O. Dad almost wrecked the car laughing.
Day 37 - Sunday March 15, 1998
Today was a busy day for visitors to see Summer. One sister, two grandma’s, and a grand dad stopped by. Summer was dressed in her best Sunday Pink dress for the occasion. Although Summer looks cute in her dresses, Mom and dad are concerned about comfort. They bought some little cotton doll t-shirts for Summer to wear with her diaper. They think these will be much more comfortable for her. Today the Nurses are noticing an increase in the number of Apnea and Bradicardia or A&B episodes Summer is having. Apnea is when Summer forgets to breath deeply and the effects of her respiration do not help her oxygen saturation. In fact her saturation drops dramatically - sometimes into the 40% range where she turns very blue. She has to be stimulated in order to take in a deep breath of air and begin breathing normally again. A bradicardia is when her heart beat drops. This decrease in blood flow also adds to her decrease in oxygen satuation. Typically and A&B will occur together. First Summer will start very shallow breathing and then her heart rate will drop. Her oxygen saturation is quick to follow. Then all the alarms go off and a nurse runs for the isolete to begin stimulating Summer. No one really knows what causes A&B spells. But they are very common in all premature babies. Dad’s guess is that neurologically, the premie still thinks they are in the womb and there is not real reason to breath. When they get tired they stop - there is no signal from the brain indicating that not breathing is a bad thing. Sometimes they come out of it on their own - but because they lose so much oxygen saturation the fast they come back up the better. They are continuing a treatment of a stimulant to try to get Summer to remember to breath. So far the A&B spells are not to bad and considered normal.
Day 38 - Monday March 16, 1998
The A&B spells are continuing. Summer is dropping into one about 8 to 10 times a day now. This is something they are now watching very closely. Mom and Dad are asking about A&B’s everytime they call now. Overnight, Summer gained a whole lot of weight. Almost 60 grams. This is to much weight. Most of it is water weight and you can see from the Summers feet that she is bloated with water. They start an IV to administer a diuretic to reduce Summer’s water weight. If she accumlates fluid in her lungs it could be what is causing the increased episodes of A&Bs. Fluid in the lungs is bad. Also, for the first time in many weeks, the talk of infection comes back. A&Bs can also be a sign that Summer has an infection. Quickly Mom and Dad are taking a dive the roller coaster. Fluid in the lungs is bad, infection is bad, what’s causing the As and Bs. They do not let mom hold Summer today. Her condition seems bad enough not to simulation. Dr. Z is back from vacation. She can’t determine the cause yet but is pursuing every avenue. They take a lung xray that shows haziness in the lungs. This is inconclusive. Best case scenario is that Summer is just getting tired and needs to go back on CPAP. Worst case Summer has an infection. Aside from the A&Bs though, Summer shows no signs of being sick. Anh tells Dad one more thing that Dad forgets to tell Mom. Dr. Z heard a slight murmur in Summer’s heart. This could indicate that the Ductus has opened back up. Dad recognizes that he should tell Mom everything but can’t bring himself to tell her about the Ductus or the lung xray. It was hard enough. It’s hard enough just reporting that Summer’s condition seems to be deteriorating - let alone speculate about uncertainties. Monday night is a tossing and turning night.
Day 39 - Tuesday March 17, 1998
Things are getting worse today. Another round of inconclusive x-rays and a sonogram.Mom is there for the sonogram and starts seeing things on the monitor. We will have to wait for the radiologist to read the sonogram. Also, Summer’s A&B are now beginning to cluster. This means she goes from one spell to the next and its requires a lot more stimulation to bring her out of it. She is up to 18 - 20 A&Bs a day. That means they are stimlating her almost once an hour. Summer hasn’t had a good long sleep now in a few days. When dad looks in on her his first instinct is that - she looks healthy she just looks very tired. Dad thinks if you just give her a can of Mountain Dew she will be fine. Weird. Doc H has just changed her stimulation medication. He changed it to caffine. Dad was only joking but apparently caffine is a great simulation medication to prevent As & Bs. Summer is still getting no rest. They beat her up now several times an hour. And with the clustering going on Dr. H says he will probably put her back on the CPAP. Dad thinks it’s a great idea because he thinks Summer just needs some sleep. Shes been awaken every hour now for almost 3 days. Think how you would feel. Its a vicious circle. They have to wake her up to remind her to breath, but the more they wake her up the tired she becomes, and the reason she doesn’t want to breath is because she is so tired. Through out the day and night all the tests come back. No infection, no bleeding, nothing to indicate a real cause. We will see how things are in the morning. Mom and Dad are praying steadily.
Day 40 - Wednesday March 18, 1998
Dr. H put Summer back on the CPAP. The CPAP is the device placed into Summer’s nose that applies back pressure into her lungs. When she breaths out the pressure keeps Summer’s lungs from closing completely. This makes it easier for her reinflate them when she breaths back in. Another version of this device can be used in the home for adults who suffer from Apnea andsnoreing. It works the same way. I’m still not sure how the device works but Summer settled down almost immediately. Mom was a little worried that this indicated a back slide for Summer.I might be a little one - but the benefits to Summer - and the immediate improvement in her condition - Less episodes of Apnea tell us that it is exactly what Summer needs. This will allow her to concentrate on sleeping and growing and less on trying to breath. Something she shouldn’t be wasting energy on doing until she gets a little older. Mom went to the NICU today but was not able to hold Summer because they are trying to let her catch up on her sleep.
Day 41 - Thurday March 19, 1998
Today’s Farifax Times headline reads, “The Neighborhood Miracle, Fairfax City Family Feels Support of the Community” by Dominic Bonaiuto. The text of this article appears on this webpage at Article. We are amazed at what Dominic put into this article yet he agonized over the things he had to leave out. The article seems complete in our minds. Summer has improved 100% Her As & Bs have subsided. She has one or two dips a day but comes right out of them on her own. Dad went by the NICU after his Mid-Term Exam and stayed for 3 hours. Since is was quiet in the NICU Dad was able to interview Linda, Norine, and Dr. Z. Their bios are all posted under Doctor’s and Nurses. This good to see Summer getting her sleep back. The alertness in her eyes is returning.
Day 42 - Friday March 20, 1998
Today was another great day for Summer and its the first day of Spring. Also, it’s Summer’s Aunt Ariane’s birthday. Mom finally got to hold Summer again. She is tolerating her feeds well and weighed in at 1030 grams. This is about 2 lbs 4 ounces. Her A&Bs have subsided and Summer has been getting plenty of sleep. You can see the alertness in her eyes when she is awake. The CPAP - although I can’t understand how it is helping at all, is a wonderful piece of equipment. It’s all that Summer needed. We brought a copy of the news paper article in for the medical staff to read. Dad had a hard time finding copies this morning. He had to drive several places to buy a copy. When he got to work he discovered that many of his coworkers were delivered the paper at home. It was great to get another round of support at the office. When Dad talked to mom, worried that he didn’t find enough copies of the news paper, Mom told him that the neighbor had dropped of 16 copies. Hopefully that will be enough.
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