At this point in our story we have made it a month. Can you pack anything more in to the birth of your child? The travel, the friends and family, the worry, the never ending questions, the prayers, the faith in God. I can remember feeling is anything going to be normal ever again...but doesn't every parent, regardless of the circumstances get the answer to that question? No, a child is a game changer...it doesn't matter how they arrive. Tomorrow I'll post on some of our coping mechanisms but for today, I want to get on with Lisa's transformation into a marsupial.
Day 29 - Saturday March 7, 1998
The IV’s are out! After they raised the feeds to 15 for several feedings the Docs decided to remove all IV’s this morning. What a fabulous milestone. There is nothing invasive sticking out of Summer’s little body. All her strength can now be focused on growing instead of coping with and trying to heal the damage done to her body by the things necessary to save her life. What a fabulous day! Dad shot plenty of video today. Anh was also back from her skiing vacation and amazed by Summer’s progress. Dad interviewed Anh and her biography appears under the Doctors and Nurses section of this web site.
Day 30 - Sunday March 8, 1998
The CPAP is out! Another great milestone! Summer is off of everything mechanical. To boost her oxygen level though she still has a nasal canula inserted into her nose. This is a thin plastic tube with the two flanges that just poke into the opening in her nose. Most of the time the tube just blows air but if she needs additional oxygen the nurses just turn it up. She still remains in the isolete hooked up to the heart, respiration, and pulse oxygen monitors. All other devices are rolled away from Summer’s area. The space around the isolete looks sparse compared to how it did other the past weeks.
Day 32 - Monday March 9, 1998
What a great day for Mom. Mom went in and was able to Kangaroo with Summer for over an hour. The nurses believe she will be able to do this every other day for a while. Summer clearly recognizes her mom’s voice. Whenever she hears it she will begin to look around. When Mom is at bed side she is helping with every aspect of Summer’s care. She is changing her diaper, feeding her, changing her bedding, and simulating her when she has spells of apnea or bradicardia, known as A&B’s. A&B’s are episodes when Summer’s breathing stops (As) or heart rate drops (Bs). In order to bring Summer out when she is having a spell, either patting her on the back, moving her arms, or tickling her feet is required. These spells are what will require Summer to come home on the monitor and require Mom and Dad to attend CPR lessons before we bring her home. The nurses keep track of her spells to determine if they are in the normal range. So far Summer is averaging about two spells a shift - 6 a day.
Day 33 - Tuesday March 10, 1998
The NICU now has 18 babies under their care. Last week they were under 10. The NICU is very busy. We are thankful that Summer is so stable. Much of the care in the NICU is being directed to other babies who are sicker than Summer. Mom went to visit Summer and stayed most of the day. When Dad got to the NICU after work it was like a scene from ER. A lot of noise, a lot of motion, and a lot of work on sick babies. Dad was freaking out, and didn’t want to get in the way, so he cut his visit with Summer short. Summer was sleeping peacefully and was extremely stable. Nothing else in the room seemed stable so Dad bailed and went home. On the way home he listened to the Sport’s Junkies and took his mind off the situation. That night we prayed for Summer and all the other sick babies in the NICU.
Day 34 - Wednesday March 11, 1998
Mom got to Kangaroo with Summer again today. Summer seems to be responding well to this activity. She stares at Mom with her big blue eyes when she is being held. Mom even played with Summer in her lap. Until she is off of decadron (Steriods) the contact will still be minimal.Mom continued to assist in caring for Summer in the normal fashion. Dad was in a meeting until 8pm so he took the evening off from visiting Summer. Things seem stable and go for Summer. Her weight is begining to show an upward trend - 840 grams today.
Day 35 - Thursday March 12, 1998
Today Summer had a special visitor. Dominic Bonuito from the Fairfax Times came to interview Mom and Dad for a story he is writing. He came to the hospital to meet us at 6:00. He sat with Mom and Dad in the waiting room, turned on a tape recorder and began taking notes as Mom and Dad (Mostly Mom) began relating Summer’s story. He was very interested in the support we have been receiving from our friends and family. He heard about us when Fairfax City Council Women, Julia Lyman, made an announcement at a City Council meeting several weeks ago. From there he found Summer’s web page, found it intriguing and contacted us over the internet. After interviewing Mom and Dad, Dr. G, the director of the Neonatal Unit came out to answer some of Dominic’s questions. Since Dad was able to sit in on the interview he heard a lot more candid side of Dr. G about Summer’s condition. Summer has progressed far better than anyone
had expected, and much faster. While she was still a long way from being able to go home, she was showing all the signs that she was going to make it. Although there was no current evidence of any brain damage, with any baby so premature the threat of CP and other learning disabilities still loom possible. After watching Dr. G give the interview there was no doubt in Dad’s mind how close Dr. G had grown to Summer. This Doc wasn’t gonna let anything happen to her. Dr. G then authorized Dominic to enter the NICU to photograph Summer. Dad lead Dominic through the drill of cleansing his hands, putting on the surgical gown, and donning a surgical mask. Then Dad lead Dominic back to the isolete where Mom and Summer were waiting. Summer was wearing a blue doll dress and had a blue bow in her hair. Dominic took many pictures of Summer and Mom and Dad looking over Summer. We will wait anxiously for the news article to appear next week.
Day 35 - Friday March 13, 1998
Friday the 13th. This was not shaping up to be a good day for Summer. Her A&B spells were up and beginning to cluster. This means instead of having a single spell and then coming out of it, she was having one spell after the other for several minutes. Her hermaticrits are in the high thirties 37 - 38. They normally wait until they drop below 35 before giving Summer a transfusion. So why are her vitals so sporatic? Once again the fear of an infection is rasied. They place Summer on an inclined cushion to see if adding her breathing in this way will reduce her spells. She keeps having them and all we can do is sit and watch and wait for Summer to tell us what is wrong. Mom and Dad are extremely nervous, particularly with the thought of infection. However, her steroid doses are so low now, and have been reduced to every other day, she is ready to come off them. So if infection strikes, we will be ready to do battle. We pray this isn’t the case. Late in the evening they begin the transfusion. Dad and Mom have a terrible nights sleep.
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