Miracle in the Neighborhood

Day 36 - Saturday March 14, 1998

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. 

One Month Old - Mom Becomes a Kangaroo

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.

Coping Mechanisms

As promised we take a break from our regularly scheduled programming to bring you this post I put together in 1998 to describe what Lisa and I were doing to cope with this life drama we were thrust into.  I don't know if this post has the answers to every question about coping...but this is what we were doing and as it turns out, we made it through.

When you find yourself in a helpless situation, such as the premature birth of a baby, mom and dad are reduced to nothing more than spectators.  As every agonizing minute tics by, the thought of counting three months worth of minutes seems endless.  An impossible task.  How will we stay sane?  How will we make it the next three months when all we want to do is bring home a fat, healthy baby girl.  Here is how Lisa and I made it through the first weeks.

1.  Milestones

Set milestones that are within the realm of reality.  We were setting these early and wouldn’t look beyond them.  Will Summer make it through the first 48 hours?, then 72 hours?  Going into her third night when we thought we had the 72 hour milestone licked the Doc informed us that she didn’t believe Summer would make it through the night.  Can’t set a milestone now.  This time we were only waiting for the results of the next blood test.  One by one though, you somehow reach the milestones.  

Other milestones that helped us occurred naturally.  The four neonatologists  each work a 24 hour shift. Every three days the rotate back through.  Three day milestones occurred naturally and were a big help. Regular lab tests were naturally occurring milestones that helped.  The Docs and Nurses would help in setting milestones by letting us know what was right around the corner and what we could hope for next.  The ductus, the respirator, the steroid treatment, the feedings, the IV tube.  One by one we saw each of them fall. Now we have a new set.  The CPAP tube, nursing, and the weeking incubator change out when we get to hold Summer for five minutes.

Thirty days have gone by.  Only sixty to go now.  For the first time we are seeing light at the end of the tunnel and that it might be possible to get through this without going crazy.  God doesn’t give people problems that are so hard they can’t handle them - without giving you the tools to help you through.  The next sections describe some of the tools God has given us.

2.  Prayer

Lisa and I pray all the time now.  We pray together - we pray alone.  We pray every hour of the day and when we are awake at night.  We pray in the shower, in the car, when we are walking down the street.  I can’t think of a better thing to do.  I am praying right now.

It was our belief in prayer that prompted me to send out a prayer chain over the internet to all of my friends and family.  I can’t count the number of churches, family, friends, and strangers that are now praying for Summer.  The strength that knowing this many people are praying for Summer gives to us is incredible.

3. Videos and Pictures

Lisa’s birthday was 10 February, three days after Summer’s birth.  On my way to buy Lisa a Tennis Bracelet I drove past a “Best Buy” (www.bestbuy.com).  Instead of purchasing the tennis bracelet I went into Best Buy and purchased a CamCorder.  I know what your thinking.  Summer’s  first words will be, “You paid too much for that CamCorder Daddy”.  But don’t worry,  The videos I have been shooting, almost, 7 hours now, are priceless - and I used MasterCard.  The video did raise my stress level however when I thought I recording over some previous shots.  I wasn’t so my blood pressure returned to normal. Showing friends and family the video is worth 10,0000 words.

We also have been shooting a Polaroid of Summer almost every day.  These are some of the pictures scanned into this web site.

These things help us because we feel like we really have a family.  We can carry pictures we can show friends and family,  we can brag about our little girl.  We are documenting her life and living it with her.  In the beginning I couldn’t help the feeling that I was trying to capture Summer’s life in the event it was cut short.  Now that prognosis is better, and we can breath more, those feelings have subsided.  We have done a good job documenting our child’s life thus far.  No one can take these memories from us now.  Knowing this helps.

4.  Friends, Family, and Strangers

What can we say?  Without the outpouring of support from so many people I don’t know what we would have done.

Some of our friends prayed for us.  Some of our friends cried for us.  Some of our friends fixed us dinner. Some of our friends talked to us, sent us flowers, wrote to us, called us, or e-mailed us.  Some of our friends talked to strangers who prayed for us.

They offered us stories that made us cry.  They offered us words of wisdom that made us strong.  They gave us books and a camera to track Summer’s progress.  They let us know they were behind us.

When this all occurred we had a choice.  Keep everything hush, hush until a more positive time, or let the cat out of the bag.  We chose to let the cat out of the bag.  It was the right decision.

Summer's Fourth Week

Sixteen years...they say time flies but it seems like only yesterday Lisa and I were in this routine of caring for our family that wasn't home yet.  Our family was still a forty minute drive away from us.  Lisa spent her days up at the NICU...what else was there to do.  And I would go to work and join her in the evenings.  After we returned home we would make one last call just before bed.  As we entered the forth week things were become fairly routine.  But that didn't mean there wasn't stress ahead, some of it our own making...

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!

Eye's Wide Open - Summer's Third Week

As you will read below, the third week of Summer's life was a big one.  A lot of the critical issues that occurred her early on have been resolved in an unbelievable fashion.  She opened her eyes, and mom and dad get to hold her for the very first time.    The true nature of the miracle we were all witnessing began to dawn on us.

Day 15 - February 21, 1998

The second culture is negative, Dad is happy they will begin steroid treatment. He discovers that 24 hours for the culture is just the first step. They actually have to wait 72 hours before they begin treatment. They want the culture to continue to develop to make absolutely sure they is no infection. Dad is a little impatient but definitely believes that insuring no infection is the best thing. Summer is ready for feedings. Mom is able to feed Summer through a tube placed in her stomach with 2 CCs of very clean premie formula. Summer is trying hard to open her eyes, particularly when she hears mom's voice.

Day 16 - Sunday February 22, 1998 

Summer opens her eyes for the nurse on morning shift. This nurse informs mom and dad that she received Summer's pray chain over the internet before she even knew she would be taking care of Summer. Later that night mom and dad get a scare. While they are at Summer's side her hear beat drops to a very low number. The Doc rushes over and determines its time for another blood transfusion. Summer is running a few CCs low. By midnight Summer is in perfect shape again. She was low on blood. A necessary condition because they draw so much blood to do tests. Still no signs of infection and she is taking regular feeding of milk now. 3 CCs every 3 hours. The Doc runs another blood culture just to be sure Summer's drop in heart rate was not infection related.

Day 17 - Monday February 23, 1998

All cultures are still showing negative. They will wait one more day on the latest culture to be sure there is no infection. Mom and Dad are becoming really impatient for the steroids. The Doc explains that Summer is doing so well they might not even have to treat her with steroids. They attempt to wean Summer of the Jet ventilator but Summer does not respond well to the conventional ventilator. An x-ray reveals that she is collapsing air sacs in her upper right lung similar to what she did in her left lung. They put her back on the Jet and increase the pressure.

Day 18 - Tuesday February 24, 1998

Her right lung has re-inflated and the second culture comes back negative. The Docs are ready to begin steroid treatment. Summer will get 6 full doses at 12 hour intervals. Her first dose is at 3:00 pm. Mom and Dad are extremely nervous about the threat of infection. Late in the evening the nurses capture a terrific shot of Summer with her eyes open. It is our favorite shot to date. We should know in a couple of days how well the steroids are working. The nurses hang up a sign on Summer’s crib reminding everyone to wash their hands thoroughly and wear gloves when handling Summer. Mom and Dad appreciate the added save guards to prevent infection. Dad begins counting the hours until the steroid treatment is over.

Day 19 - Wednesday February 25, 1998

 Steroid treatment continues. The necrotic skin beneath her right small toe falls off. The nurses save the piece of skin for Mom and Dad. It amazing but one of the nurses was so happy because she was afraid the necrotic skin would take a lot more of Summer’s toe. This would prevent her from wearing sandals. Her small toe is in great shape. There is even a nail bed present. Summer will be able to wear sandals with all the beach girls. Summer is still on the Jet ventilator although on the very lowest settings. The Docs are debating whether to take her off a respirator completely or wean her down to a convention respirator. The steroids seem to be working nicely. By Wednesday evening we are half way through the full treatment. Mom has been spending long hours at the NICU with Summer. While wearing gloves they have Mom changing Summer’s diaper and holding her feeding tube. Mom continues to pump milk in preparation for feeding.

Day 19 - Thursday February 26, 1998

Mom spends another long day at the NICU. Late in the afternoon they remove Summer from the Jet Ventilator and place her on the conventional respirator. What a difference. It is very quiet by Summer’s bed now. Almost no noise at all. The respirator is at some very low pressure settings and breathing less than 30 breaths per minute for her. Summer is breathing about 40 bpm on her own. Slowly they will wean down the respirator. She is due to finish her full dose steroids treatment tonight at 3:00 am. This will allow Mom and Dad to rest easier knowing she is on the road to coming off steroids. The nurses remove the feeding tube in her umbilical vein. There was no evidence of infection. This tube was the one through which Summer was receiving her fluids and fats. Now they will have to insert an IV at regular intervals into a vein in Summer’s arms or legs. As her formula feedings increase they will wean down the IV feedings until an IV is no longer necessary. With the IV in Summer’s arm she looks like a little bird with a broken wing. Dad bids Dr. Z a good vacation. Mom and Dad are a bit nervous that Summer’s primary Doc will be taking a vacation in the midst of all the activity but over the past three weeks have come to know the other three neo-natologists and are extremely pleased with all of the care Summer is receiving. When Doc Z returns in two weeks Summer will be ready for college. 

 Day 20 - Friday February 27, 1998

At 9:26 pm tonight Summer will be exactly three weeks old. To celebrate, and to signify her move to the new respirator, Summer gets a new house. They are moving Summer from the open platform she has been laying on to a full up incubator. These are the conventional style homes made of Lexan. They look like fish bowls with arm holes. Since she has to be picked up to be placed in the fish bowl the nurses let Mom and Dad come it to hold her. They sprint to the NICU. At 10:30 am the nurse picks Summer out of her bed wrapped in blankets and places her in her Mother’s arms. Dad is capturing it all on video. After five short minutes, Summer is placed in her Dad’s arms. She is so light - one hardly knows she is inside of the blankets. Mom spends most of the day at the NICU helping out.

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.

Prayer Responses

After we posted our prayer letter and began providing updates on Summer's status, the outpouring of support was overwhelming. I didn't want to forget our friends and family who offered their support, so I saved the emails, comments, and notes of support.  Here are the ones I collected.

Dear Jim & Lisa,

I just prayed to God that Summer Marie would be OK. I also asked the Blessed Virgin Marie to pray for Summer Marie.

I sent this to my dad---this made me cry...speak to you soon.

I am very concerned about Lisa and Summer. I hope everything turns out positive for all of you. Keep me posted.

I want to offer my deepest sympathy and prayers to you and your family. My wife is 26 weeks along right now and I know that I worry about her and our baby boy. You, your wife and Summer will definitely be in our prayers and in our thoughts. I wish the best for Summer and I know that she is in the best hands at this time. She will pull through and live to be a healthy girl. I hope that all is well with you otherwise and I know how stressful situations like this are. Our first son was born two weeks late and had to be surgically removed also. Following the surgery, my wife had post-partum hemorrhage and I almost lost her. GOD BLESS SUMMER

First I'd like to say congratulations on the birth of your new daughter. I'm so sorry to hear about the complications. My granddaughter spent the first week of her life in neonatal, but she was only five weeks early. Lisa & Summer will be added to my family's prayers until they're home and safe with you.

You have my prayers and those of my family. May God bless the mother and child.

You and Lisa have the support and prayers of Becky and I, as well as my extended CRC Family. Today's medical capabilities are truely miraculous - keep the faith. Our thoughts are with you.

Our thoughts and prayers are with you and Summer. We know you are giving her the best care and your constant attention. If there is anything I can do that can help smooth your life during this time, please don't hesitate to let me know.

Summer is in my prayers. I am so sorry to hear about the complications. Your friends, family and the doctors are also in my prayers. If there is anything at all I can do for you, please - please let me know. I would love to come visit Lisa and Summer. I look forward to babysitting for you. I know that God is watching over you. Take care of yourselves and don't lose faith.

My thoughts and good energy im sending to you, Lisa, and wee little Summer. Thank you for allowing me to share your needs. Surround yourself with white light.. im certain both mother and daughter will grow strong and thrive.

Susie and I told our covenant group on Tues nite about your situation and you have the group's prayers. This is part of Vienna Presbyterian Church. Is Lisa at home yet? I'll call later.

I'm sorry to hear about your daughter and wife and I wanted to let you know that they are both in my husband's and my prayers. I hope your daughter recovers.

Thank you for your message and my prayers are with you, your wife, and Summer Marie.

I am very sorry to hear your news. If there is anything we can do please let us know.

Know that our prayers are with you all. Thanks for including me as a caring friend.

All the best. Keep in mind at all times that God is in control. I know it's tough, but the biggest thing you, personally, have to fight is fear. God's got the stick--keep that in mind to the exclusion of all else

You will all be in our prayers! God bless.

Thank you very much for sharing this prayer request. in turn, i have sent it to city employees and others, including my mom and her friends (i think grandmothers' prayers are especially powerful!). please keep us posted.

Since I saw your message you have been in thoughts constantly! My prayers are with you all! Hang in there you're all going to make it! You made me immediately think of one verse that has helped me on more than one occasion. "Be strong and of good courage for the Lord your God is with you where ever you go." If there is anything I can do to help you out please let me know!

Our thoughts and prayers are with you all. Congratulations on one of life's biggest miracles.

How are Lisa and Summer doing? I hope everything is well.

Yes we will pray for the mother and baby. All the best!

I've just been through the web site and think this is a fascinating story reflecting the power of love and prayer and friendship. I am amazed that you've been able to put all of this together in the face of such adversity. My thoughts and prayers are with you and with your permission I will pass this on to some of my co-workers.

Hope you and Summer are doing well.....talk to you soon

I used my new color printer to print off the picture on the forth week. Came out with incredible clarity. Looks like that foot is up for a kick. This column is turning into a medical education resource. Amazing the number of things you now know that you might never have known ( and might not ever wanted to know). 

Our kids were always "one handers", with Robin always being off the weight charts on the bottom. When I hold completely normal nine pounders, they feel strange. Get the feeling you have that beat.

We are glad that things are working out. I checked Summer's web page...amazing!!

Good to hear of the progress being made by the little one. We will keep praying for her.

Glad to hear all is as well as we could really ask. I was thinking of all the stuff you guys are going through right now and I went and dug up my old photos of my daughter when she was in children's hospital. I had forgotten just how many wires and tubes were in her. As well as a breathing machine puffing for her when she wasn't even trying. Anyway, she is now my largest and strongest kid. She gets less colds than her siblings. It's really pretty amazing.

Wonderful to hear that Summer is progressing well. We'll keep in touch with your web page.

How about putting in some of the basic stats. this will help compute how far she will be able to kick a ball. Like height, weight, and update it as you find out??????

I received your message as I was switching jobs (again) regarding your daughter and just want to let you know that she is in my prayers.

Hey, I couldn't sleep so I was surfing and decided to check Summer's page. I didn't know that y'all were updating it. I read the whole thing and I'll show it to Michele tomorrow (Day 20 almost made me cry). I know what you are all going through. My sister was born at 6 and 1/2 months. They said that she had brain damage and that she would never be able walk without the help of leg braces. Amazingly she turned out fine.....and this was back in 1980. You are all in our thoughts.

Spoke with Lisa on the phone yesterday and she sounds great. We are glad to know this and that wee little Summer is also doing so well. I've seen the update including the new pictures on the web. Amazing. We'll keep praying for the Muccio team.

Anyway, just wanted to let you know I've been silently following Summer's progress on the Web and keeping her in our prayers. Looking forward the the day she can come home with you.

I have been following the progress of your little girl. I am so sorry you and Lisa are going through this. I pray that everything works out perfectly. I will try and give Lisa a call soon.

Hi---Jim---know you were real glad to hold your daughter-----I'm so very glad that things are going better for her now. Guess the prayers helped---sure like to think so anyway. Was glad to hear that Lisa can drive now, I know that pleased her ! Our prayers are still with you guyes, and even more so for little Summer.

Hi Jim, I just want to acknowledge your message and that I share your concerns.

I loved coming home today and reading about the sixth week. I loved the picture of her in her dress. Girl's have a way of stealing their dad's heart. I know the effect Samantha has on me. You all remain in our thoughts and prayers back here in PA.

I'm glad you enjoyed the story. I agonized over how much to include and what was (unfortunately) left out. I can only hope the severity of your ordeal the strength you drew from those around you balanced out. I trust Summer is continuing to grow stronger. Everyone in the office was asking about her once they read the story. I talked with our photo editor, and she said she would look at my film and make a few prints for the two of you to have. I'll be in touch once she has them done. Please let me know if you need more copies of the paper for friends or family--I should be able to rustle up a few more. Again, thank you so much for sharing your amazing story with me. I wish you all continued strength and happiness in the weeks and months to come.

I know that this is very hard on you, but as Summer grows, you will see that God has truly blessed you.

i have a little lump in my throat after reading your latest entry; what a wonderful way to start my day. my mom and her friends at st. leo's ask about summer often; i don't think they're up to using the 'net themselves. i can't wait to let my mom know how well things are going.

We are praying for Summer and for you guys too. Our 3.5 months at the hospital were some of our hardest times. It seems to drag on forever, but it will come to an end quickly--it will almost be hard for you to take her away--but it's great when they get home.

I read about your precious, sweetheart in our local newspaper and wish you all the luck in the world!

I just went to Summer's Web site, all my good energy and love is with you guys. Surround Summer with white light......... there's nothing more beautiful than a baby.

Thank you so much for letting me share in this part of your life! This has to be the most moving experiences I have had, other than the birth of my children. I feel like I was right there, I certainly wish I could be there for you during this time! You have had, and will continue to have my prayers!

We both know that she is not out of the woods yet, she still has a long way to go. Our prayers will be with her as you well know, please give Lisa a hug for me, and take care of yourself, and I'll see you later.

Our thoughts and prayers go with you as you go through this. It's wonderful that so many people around you care so much for you all. Good luck and God bless you all.

God has a reason for Summer being born 16 weeks early.It is a miracle that could bring many lives to Chirst. Also thanks for buying Girl Scout cookies from me and oneday maybe one day Summer will be a Girl Scout and sell Girl Scout cookies. P.S. I will be praying.

Michele and I just finish reading the update of Summer on her Home Page. Congrats. It sounds as though things are going as good as possible. You are all in our thoughts.

We have just looked at her pictures!! What a gorgeous baby! We've said our prayers and send them to you and Lisa. We hope that she will be a beautiful and loving child. When does she get to come home? Once again our prayers are with you and take of yourselves as well that beautiful little girl of yours. My wife and I read about you in the Times Community Newspaper this week. Your situation reminded us both of what we went through almost ten years ago. Our newborn baby girl ended up back in the Intensive Care Unit when she was eight days old. The next two months were a blur of hopsital visits, hastily grabbed meals, and little sleep. Fortunately, her team of specialists eventually figured out what was wrong and developed a terrific treament plan. She has grown into a wonderful, healthy, typical third grader. Our thoughts and prayers go with you as you go through this. It's wonderful that so many people around you care so much for you all. Good luck and God bless you all.

I know that this is very hard on you, but as Summer grows, you will see that God has truly blessed you.

Summer's First Weeks

It's amazing to me that I am finding all the files from the website back in 1998.  I've changed computers at least six times over that time period.  Just recently I saved the hard drives from all those computers onto my new 3TB drive.  With a quick search of that drive, it's all here.  At one point I thought I had a lot of data to back up...I'm using less than a 1/10 of the 3TB drive for 20 years worth of data.  Also, I have to point out, that when I was writing this blog, Chris Z, or Zeus, had set up the blog through the service we were using for our company, SimSupport.  Zeus showed me how to use the software to upload the blog content.  Pretty clunky back then...posting now is easier than sending an email.  Now onto Summer's second week of life.

Day 8 - February 14, 1998

Mom is now safely at home.  She will have to take it easy as she ventures to and from the hospital to see Summer.  Summers condition is stable.  It is Valentines Day.  One of Summer’s nurses prepares the Valentine with her foot prints.  It is very special to us.  The doctors have adjusted the jet ventilator up in pressure.  This is to insure the air sacs in her left lung do not collapse.  We have to just hope the increase in pressure does not continue to blow holes in her right lung.  The medical staff begins to monitor Summer for activity in her gut.  The numerous x-rays they have taken of her lungs have thus far indicated little to no activity in her digestive tract.  If they are to begin feeding Summer they will have to see signs of activity.

Day 9 - Sunday February 15, 1998

We are steadily getting to know the routine and meet all of the nurses who are caring for Summer on a continual basis.  The nurses inform us they are fighting over her to determine who will care for her on which day.  It is hard to determine if they are serious or doing this for our mental benefit.  Either way it does help a great deal to feel as if Summer is someone special, not just to us, but to the nurses who are providing her the continuous care she needs.  The measures they are taking seem to be working.  Her lung conditions are improving.  The pressure settings on the ventilators have dropped.  But not too much.  They still need to keep the lungs inflated.  We are traveling to the NICU around noon and staying for a few hours.  Our routine seems to be, call first thing in the morning, visit with Summer during the day, then call in the evening before we go to bed.  Mom is steadily pumping in order to prepare for the continual feedings that will soon be necessary.  Summer is still showing no signs of a digestive tract that is ready for food.

Day 10 - Monday February 16, 1998

Today is a holiday.  Dad has not started back to work yet.  We call in the morning and visit Summer during the mid day.  Summer seems to be conquering the battle with her lungs.  The chest tube is still in although there seems to be little if any air escaping her lungs.  Still no sign  of intestinal activity.

Day 11 - Tuesday February 17, 1998

Dad goes back to work, although he gets very little done.  He spends most of his time updating the people he works with.  He is amazed at the outpouring of support.  Many people have stories they relate to him.  Mom checks in with Summer during the day and Dad stops by after work.  Chest activity is back up.  The doctors have to adjust Summer’s chest tube because some more air leaks in her right lung are detected.  When is this chest problem going to end?  Still no signs of intestinal activity.  The Doc’s tell us not to worry.  Premies often shunt blood from their less vital organs in time of stress - intestines being the least vital of organs for her at this time.  They are confident feedings will begin soon nonetheless.

Day 12 - Wednesday February 18, 1998

Summer has a great day.  They notice a small amount of air in her stomach which means feeding could begin soon.  Her lungs seem stable although another change in her chest tube location  is made just to insure the are getting all of the air.  The Docs are now discussing the use of steriods to enhance her lung development.  The draw back to steriods is that they will reduce her immune system.  Steroids can only be used if Summer’s body is free from infection.  They will begin testing soon.

Day 13 - Thursday February 19, 1998

Summer has a great day.  Today they actually removed the chest tube.  Her lungs are doing well and she is back on lower repirator settings.  They take a culture from the chest tube, the artery catheter, and the endo trachea tube.  They also send a blood and urine sample to the lab for culture tests.  After 24 hours they will know if Summer is clean of infections so they can begin the steriod treatments.

Day 14 - Friday February 20, 1998

The culture that was taken from Summer’s umbilical artery shows signs of infection.  They remove the umbilical artery catheter and send another sample to the lab for a culture.  All other cultures com back negative.  They sense from Summer’s condition that no infection is present but they have to be sure before they begin giving her steriods.  We will have to wait another 24 hours in order to assess what will happen.