Day 21 - Saturday February 28, 1998
Trips to the NICU now become like watching the grass grow. Summer is extremely stable. Her sensors are rarely beeping. Maybe they went off once during the Friday night visit for Dad. On Saturday they are just as quiet. Mom goes early and spends most of the day with Summer. Dad drives up late in the afternoon. All is quiet - we hope and pray it stays this way.
Day 22 - Sunday March 1, 1998
All is still quiet. Mom helps nurse change Summer’s bedding. We watch Summer sleep most of the day. Her respirator is down to 10 bpm. Summer is breathing at about 40 bpm This means she is actually taking 30 breaths per minute on her own. The respirator only helps when she needs it or gets lazy. It the endo treacea tube falls out they will not replace it. They will observe Summer to see if she can handle the breathing on her own. Mom and Dad are not hoping for her to be completely off the respirator any time soon. We will be patient and let her put a little more muscle and fat on first. Feedings have been increased to 4 cc’s every two hours. She will have to get to 18 cc’s every two hours before they can remove the IV’s completely. We found out today that the pulse rate in Summer’s left leg doesn’t match the pulse rate in Summer’s right leg. An ultra sound revealed less blood flow to Summer’s left leg. They could be a number of reasons for this to occur. But the skin tone and healing of her left leg leads the doctors to believe the condition is not serious and may correct it self. She is scheduled for a follow-up in six months. Also, the doc orders that only her right leg be used for blood samples.
Day 23 - Monday March 2, 1998
What a surprise! When we called the nurse this morning we found out they had removed Summer from the respirator in the early morning hours. She was doing great! Although the endo-tracea tube was removed from her mouth Summer would still be on the CPAP. This device is placed over her nose and keeps a very small positive pressure entering her lungs. If her saturation goes down they can increase the percentage of oxygen entering the CPAP. The device is there to make sure the air sacs in her lungs to not collapse. Summer likes being able to open her mouth without the tube stuck in it. Mom visited Summer for most of the day. Dad went over in the evening and started fixating on the monitors. Dad noticed that Summer’s vital signs seemed more spurius then normal. The nurse told him not to fixate on the monitors. To look at Summer and begin to recognize what she could tell him herself. What was her skin color, her breathing rate, was she moving or crying. Speaking of crying, Dad was able to hear Summer’s very little cry for the very first time. But Dad’s real concern is whether Summer has enough blood and if she will require a transfusion soon. The answer is yes. But there is a careful balance with transfusions. You don’t want to get the baby dependent on transfusions. But to perform tests you have to pull a lot of blood. They are monitoring her blood very regularly so they know exactly when they will have to give her more. Dad recognizes the spurious nature of her vital signs, jumping from a heart rate of 225 down to 100 when typically it beats steady between 160 and 180. The last time this occurred she was very low on blood and required a transfusion. Dad was definitely stress on Monday. Also, the sign that was posted to restrict blood removal from Summer’s left leg was removed and it was obvious that blood was being drawn from her right heel. Dad was starting to really freak out. What’s going on? Earlier in the day the doc had removed the restriction on the blood being removed from Summer’s left leg so the note was removed. Apparently everything is all right. Dad makes a note to follow up on this. Dad’s stress level is growing. The monitors are still erratic and Summer looks pale. A technician comes in to perform another heel stick on Summer. Dad doesn’t watch. He can’t stand to see one more drop of blood come out of Summer when she looks so pale. The procedure is over and the technician heads away to perform the blood test. Within minutes the technician is back to take more blood. What? It seems that Summer’s blood clotted too quickly and the test was not performed. They would need to do another heel stick. That’s enough. Dad headed for the door. He trusts these folks and there is nothing he can do but get in the way and raise everyone else’s stress level as well as his own.
Day 24 - Tuesday March 4, 1998
They are steadily increasing Summer’s feedings. As they increase the premie formula they will decrease the amount of fluid going into her body via IV. Mom spent most of the day with Summer. Helping change diapers and give feedings. A blood transfusion was ordered during the day. Mom spent the day and waited for Dad to arrive after work. When he got there mom gave him the run down on Summer’s condition. She was doing well after the transfusion. Her oxygen saturation was high but that was due to the long day of handling and procedures she had been through. Dad was relieve that the transfusion had been done but still nervous about the increase in oxygen Summer was requiring. The last time Summer’s oxygen requirements had gone up she had collapsed air sacs in her lungs. Dad was nervous again. Mom seemed fine, the nurses seemed fine, the doctor seemed fine. Why, when everyone else thinks Summer is doing well, is Dad freaking out. Doctor B comes over and tells Dad to stop looking at the monitor. Summer was fine. All night long Dad is struggling to determine an explanation to the increase in oxygen on his own. He would have to study this problem and find a solution and tell the medical staff right away. Something was wrong with Summer. Enough! Dad can’t possibly figure any of this out. He is getting too close. His small amount of knowledge and complete inability to take control of the situation is what is making him crazy. Dad wants to jump into the NICU and begin to micro-manage the medical staff. How disastrous for everyone, most of all Summer. Dad would have to trust the staff completely. Give up his own selfish desires and let the staff do their job. Most of all he would have to stop watching the monitors. He would not go to the NICU on Wednesday. He would allow himself some time to chill out. Mom would go and check on things.
Day 25 - Wednesday March 5, 1998
All of Summer’s vitals have returned to normal. She is down on her oxygen and up on her feedings. Mom spent a lot of time with Summer today. She was able to clean Summer’s mouth now that the endo-tracea tube was out and heard Summer cry. Summer’s weight is fluctuating several ounces above her birth weight. Any day now we are expecting a surge in weight gain. We still want her to look like a fat little pig. Mom got to hold Summer as the nurse changed the bedding. They have started Summer on Zantec to help her cope with increased feeding by eliminating reflux back into her esophagus after her belly is full. This stuff seems to be working well. Her feeding are increasing regularly. She is being weaned from the steroids every three days and should be totally off of them within nine days. Dad kept his word and did not visit the NICU today. His stress level was coming down.
Day 26 - Thursday March 5, 1998
Another day in the bank. Summer is up to 10cc feedings every 2 hours with no residuals in her stomach. She is digesting everything. The feedings are advanced to 11cc by night fall. Her IV settings are turned down appropriately. If all goes well by the end of the weekend she will be off the IV’s altogether. She is still using the CPAP but her oxygen settings remain extremely low. She has always done very well on room air. Mom brings Summer an stuffed animal that plays music. We will have to buy a small tape recorder to begin playing tunes for Summer in her isolete.
Day 27 - Friday March 6, 1998
In the morning Mom heads to the NICU for the incubator change over. She is able to hold Summer for a long time during the transition. She is really taking an active roll in the care giving during the times she as there. The nurses are bringing her right into the fold. Summer is doing well on her feedings. They are increasing them almost every 2 hours. They are trying to get her to that magical 15cc’s. Dad lets work get in the way of visiting Summer for the first time. He feels really guilty about it. Particularly since it is Summer’s birthday. She is four weeks old today. What a milestone. Never thought we would be here so soon. Happy Birthday Summer!
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