PRELUDE:
As we struggle with the ups and downs of our new sons life, I am starting this journal to provide other parents with a real families struggle through the choices of life or death. While I am starting this journal on Day 6 of the journey, I will attempt to re-trace our life up to this point to show what factors were influencing our emotions and decisions. I have changed the names of our friends and doctors to protect their privacy.

Jonah was born on 2/26/97 at 6:45pm weighing 7lbs 9ozs/19" with dark hard and hazel gray eyes. Within 36 hours of delivery, we were told the news that shattered our lives and the lives of our friends and family. Jonah had a congenital heart defect that was life threatening and if left untreated, fatal within hours or days.

SOCIOECONOMIC FACTORS:
My husband, Ken, and I met in 1985 while at the U of Iowa. We have known each other for over 12 years and while we have had our bumps, big and small, we have managed to realize that we are better together than apart. We both have Masters degrees and professional managerial careers grossing what would be considered as upper middle-class income. While our annual income sounds impressive, we have substantial debts from college and middle-class lifestyle, often living pay check to pay check. My husband comes from a white, lower middle class, Midwestern, farming community raised in a stable family of five. I am from a white, upper middle class, east coast suburban community raised through multiple divorces with five in my immediate family as well.

My husband's family consists of two sisters with husbands and three children each of young ages. They both live in the same small Midwestern town and are 3.5 hours from our home. Both Ken's parents are deceased which has strongly increased the bonds between Ken and I to his sister's families. We are all extremely close and think of each others children as our own. My family is much less connected which I contribute to the multiple divorces among both my parents and the young age at which they started their family, while still in their teens. While I have a brother and sister who have leant their support during our struggles, we are not as close as Ken's family.

Ken and I have one son, Andy, who was 22 months at the time of Jonah's birth. Andy was a happy baby and a typical toddler except for repeated ear infections and allergy to cow's milk. We worry constantly about the impact of my sadness and absence on his psyche. Andy has been a wonderful gift from god and can't imagine our life without him. When trying to decide what to do with Jonah, we asked ourselves this: If you knew the day Andy was born that you would only have two years with him, would you still have had him - the answer is a most definite YES." I than ask myself, should I not have the same conviction about Jonah. I still do not have that answer and we are leaving that in God's, the doctor's, and Jonah's hand to decide.

PREGANANCY & DELIVERY
I found out I was pregnant by three weeks. Prior to that I had been taking Bayer PM aspirin to help me sleep as we were told my company was leaving town and I would have to look for a new job in the future. I do wonder if that aspirin had an impact on Jonah's heart development but will never know for sure. I was very sick with headaches for the first three months but no real complications. I did have an occasional glass of wine but that was not until into my fifth month. My back did ache while sleeping and some blood sugar reactions, but no defined prenatal problems. I did have an ultrasound at 19 weeks but all indications were positive for normal growth. I do not know if a more detailed look at the heart would have shown the problem, but I would not have impacted his condition today.

My water broke at 7:00am and by 11:00am I was on pitocin and epidurals for delivery within twelve hours of waters breaking. I pushed for less than fifteen minutes and he came out with very little effort. His apgar score was 7 and 8 due to the blue color of his skin. I do not know if this was an early sign of his condition. He did not cry much and seemed to sleep a lot. I did attempt to feed him on three occasions but he did not appear hungry.

We took him to my recovery room and spent several hours amazing at how perfect he looked. On Day 2 our family doctor examined him a 6:00pm and found him in good condition. He was circumcised at 6:15pm and brought back to my arms by 6:30pm. That evening there was a nurse change that left me without a lead nurse from 7:00pm to 11:00pm. The nurse I did have was not responsive and did not seem interested in assisting me in my feeding problems. I had bundled him up at 7:30pm and wheeled him to the nursery and explained that I was not able to get him to eat, I was told to go back and wake him up for feeding and change his diaper [note: this should not have happened]. I did change Jonah into a sleeper and did notice his feet blue - I assumed this was due to the ink from the foot printing. He did not wake up so I tried to feed him more. By 9:30pm I noticed his breathe and chest efforts were erratic but did not want to call for support as I was treated to poorly before. I wrapped him back in his blankets and put him in the nursery at 10:30pm. No one in the nursery even acknowledged his presence and I was extremely worried about leaving him there that night. I returned to my room crying uncontrollably and called my husband for guidance. As we were talking the nurse from the previous night came in and indicated that she was my nurse for the evening. I told her of my concerns and she assured me she would take good care of Jonah. Thank god she was there because she was the one who noticed his distress in the middle of the night. In retrospect, I clearly knew something was wrong but did not know what to look for or what to do.

DAY 3 - I was roused from my bed at 6:00am by a Neonatologist from Riley Hospital and told that Jonah was very sick and needed to be transferred to NICU. They did not know if it was a heart problem or infection and told me to give him a kiss goodbye. The Dr. N had been brought up during the night and had been working on him for several hours prior to my being notified. I called my husband and told him to get here quick. While I knew it was serious, I now know it was a very close call to death. We waited for a few hours and were finally taken to NICU at my birthing hospital. The shock of seeing him on a respirator and all the tubes into his body was overwhelming. They were preparing to transfer him to Riley Children's Hospital and wanted me to see him before he left. I was than asked by the hospital chaplain if I wanted him baptized - that is when it hit. My god, this little dream my die. We baptized him and off he went to Riley by ambulance, that is the point at which my new life began and my old one died forever. To say the least crying was the only thing I could do. Still feeling the pains of delivery and trying to get discharged were added problems to my reactions.

DAY 4-5: These days were a blur of phone calls to family and friends of our sad news. They were also days of changing medical status of Jonah. Jonah was diagnosed with Hypoplastic Left Heart Syndrome, a fatal congenital heart defect until recent medical advances. I could not get a grip on what was happening to us and wanted so much for my life to be back. I had almost forgotten about my other son and was thankful my Dad and Ken's sisters had come to help with his care. It was very hard for all of us to see such a healthy looking baby so sick and hanging onto life. He has in the NICU where most babies were premature and he looked so good in comparison and it fooled us into thinking is would all go away. I woke up in the middle of the night and for a moment it was not happening, than like a tidal wave it all hit me: either my son dies or he is sick for a very long time. It created a terrible anxiety attack of which I hope to never have again. I could not get a grip, stop crying, or function without serious shaking. It took my husband almost an hour to calm me down and we called my family doctor for anxiety medication in the morning. I was prescribed Xanax in small doses and that has helped keep me more stable with emotion.

DAY 6 - STARTED JOURNAL AS OUTLINED ABOVE.

DAY 7 - Jonah is one week old. We scanned the Internet today and got more conflicting information on his condition and treatment options. Some say 64% have no major development difficulties but do not define what that means. The surgery itself, called Norwood, has good results compared to 0% survival for no treatment. I started the day with optimism that we had more time to decided and Ken actually said we will do anything to give Jonah a chance. But by 3:00pm, I felt much more hopeless. I don't know why it changed just that it did. I made calls to get funeral arrangements made so that should anything happen, at least we won't have to deal with that part of the process. I sit here and want it over, a time to morn and them begin trying for a new baby. I'm 35 and can not wait too long to have another child. A week ago, Andy was the center of my world and never imagined that Jonah could move my world so much in such a short time. I try to hold Andy and talk to him as I did before but it is as if there is no feeling there. I feel like I am neglecting him but he just can not fill the whole in my heart.

The phone is ringing off the wall. I need to talk about what is happening but I am not sure people understand how on one day I want to do everything to keep him with us and the next I am too tired to keep going. Ken and I are closer than we have ever been before. I worry about him because he keeps it all looked inside but he has been talking to me more than at any other time in his life. They say divorce is high among families that pursue surgery or transplant options due to the roller-coaster nature of the treatment. I do not see this as a problem now because Andy loves Daddy so much that neither of us would do that to him, even if we were not getting along as we should. Back to the phone calls, people have good intentions. I need the calls but timing is bad. Friends and family say "I'll be there in a minute, etc." and it is all appreciated but I wish one person was a magician and could make this all go away.

I am doing all the right things and seeking counselor help with my grieving but it is not easy. All the organizations that have pamphlets that say they are there to listen, have never called back. Of the four groups I have tried, they either do not want a post-partum mom with a sick child or they do not respond to calls for help in listening. I feel manic at times, real up, real sad, then real mad.

DAY 8 - TO TIRED TO WRITE

DAY 9 - I went to the funeral home today to complete arrangements using my head and heart equally. I got prices and picked out the service for my husband to review. We intend to donate any organs possible, but most likely they will not be able to use them as if he dies, it will be under oxygen deprivation and not usable. We could donate his body to science, but Ken's sisters have a very hard time with not burying him next to their parents. I can see their point and we may alter our arrangements for cremation.

At the hospital, upon my arrival to the NICU, they were conducting the third echo to determine heart stability. I could clearly see the let heart not moving and the value closed. What we saw as well was the improvement of the right heart and value compensating for the damage. The cardiology team made rounds shortly thereafter and concurred that his right heart appeared to have improved to 75-85% of capacity which is where he needs to be to become a Norwood candidate. It was such good news I kept waiting for the "but" to keep my hopes down. I had read a lot about Norwood and transplant over the past 24 hours that I understand the risks/odds for each procedure. The success of which is usually determined by the individuals anatomy and the hospitals preference in procedure, based on previous success factors. I tried not to get too excited about the news so much that I became sick to my stomach from nerves. I called Ken with the news, but like me he had a hard time being positive. We are so afraid to be happy about this that we both seem on autopilot.

I worry about Ken. He has gone back to work but with little success at effectiveness and only added pressure to his life. I wish he would go to ½ days but he seems to resist the free time blues. Ken has yet to hold Jonah but spends time holding his hands. I just can't help but feel that he is afraid to get close for fear of losing him. However, he is spoiling Andy terribly and I am on the other end of the scale of almost ignoring him. Two weeks ago, Andy was the light of my life and it is as if the light went out and a flame larger than I could ever imagine is burning for Jonah. I get no comfort from being with Andy and often find he pulls away from me in response.

DAY 10 - We continue to get good news on Jonah's progress but I can't let myself believe it. The stats say that 70-80% make it home and so far ¾ have gone home in the last few days. It makes me feel like Jonah is on the statistical fence and bound to fall on the wrong side. I am thinking more of God and that he has a purpose to Jonah's name and the story in the bible. I am not sure what the story means yet but I do believe there is a purpose to what is happening to us. I think the experience with Mom's long-term illness as prepared me for the process of dying but never for the giving up of a child. I was out with my sister tonight and for a few minutes forgot about the situation. I wonder if I am dealing with this too well and have not cried in 24-hours. I went to a therapist today hoping to get new techniques for dealing with this situation. I left the session with the knowledge that I am doing all that I can and can go back as needed. My goal was to avoid breakdown but it seems I am not upset enough to need "real" help. I miss Jonah as a baby and want to dress him up and parade him around. I am afraid of his surgery but know that it is the only option he has to life.

DAY 11- NO ENTRY

DAY 12 - I did not write yesterday as we have so many guests here it is hard to get time to think. That can be good and bad but it just is. Jonah was taken off the respirator and as they cut away the tape from his face and I saw his face for the first time since "it happened", I began to cry terribly. I was crying out of fear of what was going to happen and because he was so beautiful and I just wanted to make it all better. He did well but it scared me to be to happy about holding him. They also removed all of his drugs to see how he would do prior to surgery. He did well but the NICU world is too stimulating with all the alarms. They wanted me to stop stimulating him too much with touch but it was not my touching him that was bothering him, it was all the alarms going off constantly.

I continue to have problems bonding with Andy. I try to hold and cuddle him but it feels fake. I am writing while at church because it seems like the only private time I get. There was a baptism of a little baby at the service and I started to cry and the sight of the beautiful little baby boy. In addition, a member lost their 3 year old son to leukemia and I can imagine their pain, realizing that it could be me they were mentioning in their prayers. I will hate myself if I let Jonah suffer but I believe God will tell us it we should let him go. When the respirator was removed, Jonah tried to cry. His throat is so sore from the tube that no noise was created but he sure got red in the face. I hope today will be better than yesterday as I get so irritable and mad. I am depressed and mad at the same time. I have been given XANAX to help control these swings but I do not want to get dependent on a drug.

DAY 13 - We arrived at the hospital assuming to have another day to watching Jonah get stronger. Upon arrival we were told that they were pushing up surgery to today. We packed Jonah up, wheeled him to surgery and I felt as if I got so little time with him. I got a change to kiss him and told him " be a good boy peanut and mommy loves you:. As they wheeled him away, I cried as it was the only option.

We are now waiting for surgery to be completed. Updates are every hour and the first indicates that all is proceeding as planned. The only non-normal activity is they left the IV line in his umbilical cord even thought it was over 7 days old and can become infected. Update #2- all was going according to plan and the doctor said we were on cruise control. Jonah's body temp was taken to 16 c/ which is approx 60 f to shut off heart and lung function. Again, some good news but I am afraid to be hopeful. Update #3- the doctor has finished the procedure and he is back on his own functions of lungs and heart beating - great news. I can't help but cry but do it in private in the bathroom as too many people are watching me to see if I am "okay". The team did tell us to expect to see a very sick baby with many tubes and lines into his body. He also said that we will be on a monster roller-coaster for a few weeks and prepare ourselves accordingly. Update #4- surgery is over and he is stable being moved to recovery room. We are waiting to see him and have sent all but Ken and I home so that we can be alone with Jonah. While I found support in having friends and family, we also need personal time as parents to be with our child.

Again, I want to be glad about Jonah's condition but I am fearful to "jenix" the situation. I feel the "nesting" need to make arrangements to his coming home but am afraid to make the hopeful calls. I had an easier time making funeral arrangements than I am imaging his coming home and my going back to work. Ken and I do agree that whatever happens, it will happened for the right reason. Either God wants him with us or he wants him in heaven. He is such a beautiful baby but I am not sure I will ever have enough strength to get as attached to him as I did to Andy.

I saw Jonah in recovery. He reminds me of a frog waiting to be dissected in biology class in seventh grade. His stats are good but he is completely limp from sedation. We saw this nurses from NICU and told him it looks good so far. I feel some relief that Jonah has made it this far and I have the urge to dress him up and show him off. Please God, let him not suffer no matter what the outcome. Mommy loves Jonah.

DAY 14 - 12 hours after surgery - he has been fairly stable but occasionally his BP will go over 100 for no apparent reason. This is the same thing he did pre-op and while not sedated. I remember that I myself did this a few weeks prior to delivery so made it is maternal hormone related. We were warned of RSV risks in the unit by another parent and got assurances from the team that they are very careful about transmission. PICU is very different than NICU. You have your own room and nurse. It is much calmer and you can decorate it to be more like a home and not a hospital. There is also a sleep waiting room but too many people use it as a family reunion area and make too much noise until very late hours. The guests are also slobs and never pick up after themselves.

I met two more Norwood families. While they have different complications, they feel much the same in their struggles. While I have been taking notes on their child's condition for my own records, I am deleting them from this journal as their pain is private and shall remain that way. I do know that infection and clotting seem to be a common themes with complications both in the lines that are internally run and the clotting from blood passing through artificial materials. Other common themes are heart monitors at home and local hospitals having no idea how to help these babies if they are in distress. I am determined to help write a CARE BULLETIN for Jonah should he need care and Riley is not readily available for consultation. In addition, it appears you do have some drugs to administer at home but they are orally given once a day at most. Other than that, once they are home they act like other babies but need to be fed every three hours regardless of hunger. Of the two babies that returned, the mothers knew right away there were problems by watching their skin color and breathing stress. I fell I will be able to spot this as well as I am watching him like a hawk and hope to know him very well if he gets to come home.

DAY 15 - Jonah continues to hold his own. He is stabilized in most ways except for a few gases. I am getting to know the "numbers" very well and use it as a way of assessing his condition without always relying on the doctors to tell me. As well, it helps me feel comfortable when new nurses are assigned as I can assess his condition even if they are not as familiar with him when first on duty. I am determined to gather information on what is meant by "quality of life". I know this procedure has been done hundreds of times and all the medical articles talk about the QL, but no where does it describe any potential outcomes of lifestyle specifics. This is important information needed in order to determine the course of action for any child and ours.

DAY 16- Jonah had a slight seizure last night. They say that is normal for the heart surgery but it woke me up to reality again that he may not be with us long. His swelling is down and all his numbers look good. I was having a fairly positive day yesterday and today I am down again. Dr. P clarified the mortality rates here at Riley as 75-80% make it to first month being the acute concern. While that makes sense, I guess I had fooled myself into thinking that if he made it through surgery, that was the toughest part. I am having very nervous energy where I shop until I drop. This is not good and it will catch up with our checkbook soon. Jonah looked at me today and he looked so awake but did not focus well due to sedation. When he looked at me it was as if he was saying, Mommy make this stop - I was dying inside. I asked myself if I was doing the right thing and I guess only time will tell.

As I sit here in the lobby, I hear another baby cry and it makes me want to pick him up and rock him to sleep. When will I ever get that chance - maybe never. Sometime I think I am getting numb to this whole situation but I just keep going because that is all you can do.

DAY 17 - They may close Jonah's sternum today. I think there is increased risk of infection the longer he is left open. I had a bad temper attack yesterday. It seems that people are comforting is you cry but if you get mad, no one wants to talk to you. I got mad because everyone was going back to their normal life and my life was gone forever. While I am still here, I will never be the same and neither will my relationship with my older son. I am seeing my family doctor for the first time since "it happened". I feel like he is afraid to see me because he may fear I will blame someone for what has happened. There is no blame, only life as it now exists.

Jonah went for his chest closure. The least complicated portion of his treatment. It started at 7:15pm and at 9:30pm we were calmly waiting for his results when Dr.S came in with clear evidence of tears in her eyes. The floor was about to fall for the second time. Surgery wasn't going well and the prognosis is not good. Jonah had developed a blood clot in his shunt and Dr. B is messaging his heart manually. It took 1 ½ hours to pull the operating team back together on a later Friday night to re-attempt to stabilize him. We waited until 11:30pm to see Dr. B who said the Ecmo machine may be an alternative to getting him stronger to try again later. So while all looks bad, he was stable. Within thirty minutes we are called to Dr. B's consultation again. It seems no Norwood baby who has arrested, has ever survived on the Ecmo machine. In addition, any Ecmo that had a PH of less than 7.15 has had major brain damage, Jonah had 6.9 at one point during the manual heart message. Clearly Jonah is beyond repair and the decision has been made for us. We are now waiting for him to be brought back to us to rock him for a few minutes, hours, or may be a day until God takes him. We believe the only good from this is that the clot was found in the shunt during surgery. Dr. B thinks this may answer so of the mortality rates once the babies go home in the first year. There are currently three Norwoods in Riley and all are getting more de-clotting agents immediately. We take some solace in knowing Jonah may have saved the lives of other babies with this discovery and that Jonah will not suffer any longer. This way Mommy will get to hold him until he goes to visit God and Grandma & Grandpa Smith. He looked at me for almost an hour earlier today and I just felt that he was saying I've had enough and Mommy make it stop hurting. We did try to help him so we won't have to feel guilty that we did nothing but at least when it came time to make the tough decision, we have done it. The best way to love Jonah is to know when to let him go. Jonah has brought Ken and I to be more understanding and appreciate each other more as well as the moments we get together. I thank God for the time I was given even thought it hurts deeply to say it. As we wait here to hold him I am not sure what to feel - sad of course but also relieved that God has decided his course and not made him suffer. We wait for Jonah.

2:10am - Dr. B has just come into the room where we are waiting for Jonah and said Jonah's heart has started to beat on its own - this is a miracle. No one has ever done that before but he wants to leave him on his heart drugs for a few days to see what can happen. Also, he said Jonah opened his eyes to stimulation so we won't hold him but will need to watch him closely to see if we can find brain damage. We are all so tired and can not believe the course of events this evening.

DAY 18 - I've had 3 hours sleep and so far Jonah is still holding. We have seen signs of eye response and crying reflex. I still have not looked in this eyes to see if there are signs of hope. I saw him open his eyes and he was more alert in his movements and all his limbs responded. Dr. E can not believe how good he looks considering last nights event. I asked if this was the roller-coaster he was talking about and he said this was more than what he meant. Now we sit and wait to see if we can get him stable for a few days to try and close again. Jonah is now being called the miracle baby because none has ever had HPHL, Norwood, arrested, and revived on their own. I am so tired I can not think. His numbers are fairly stable and things are looking better.

I was planning on staying at the hospital but all the sudden felt the urge to get away. I do not feel like eating or thinking. I feel depressed and tired of the stress. Jonah was awake for a few hours but with little movement. He may be tired, brain damaged, or too sedated - only time will tell. Pupils are responding to light stimulation so that is good. We sit and wait.

Day 19 - Jonah had a good might and continues to have good numbers. He does appear to have some fluid build up due to a leak in the chest tube but of no major concern. Tube leaks are of infection concern and it will be watched closely. Dr. S has been of great comfort in this. She is always checking on Jonah and worries about him as much as I do. The only difference is she knows what is medical condition is and I can only guess based on how Jonah looks. I did meet one of the Norwood Mom's today. We share similar feelings of tiredness, ups/downs, and frustration. She looked at Jonah and said their eyes always look that way on morphine so that is a relief. We agreed that our babies condition change constantly and any decision you make one day can change tomorrow as the baby responds in their own way. She too has had trouble bonding with her other child. It is as if you want to see your other child and as soon as you do you get this uncontrollable panic to get back to your sick child.

Day 20 - It has not been a good day for me. I am not positive nor optimistic for Jonah's outcome. He looks so weak and tired. The nurses tell me this is where he should be at this point but it has been three days without a roller coaster and its almost like I don't know how to react without any problems. I want to hold him so badly and make him feel comforted but I can not do anything until his sternum is closed. They might do that in a day or two and maybe that will get is going down some road, good or bad. The waiting and uncertainty is unbearable. I have decided to get involved with the Cheer Guild for Riley and that may help funnel some of my anxiety and pain to helping others.

DAY 21 - I am actually doing a normal life thing today by getting an oil change. This is such a big step for me that it scares me to think about going back into the normal mainstream of life. I buy clothes for Jonah and leave the tags attached so that I do not over estimate his coming home. I have another ritual of tossing in coins every time I pass the fountain in the Riley lobby. Andy now sleeps with us in bed all might. I feel like it is the only close time I get with him anymore. It may be against my better judgment but all the rules seem stupid when you consider the other problems in life. I am afraid to find out what to do about work. It seems there is no point to planning because Jonah always changes my schedule. I could quit but than Jonah would probably leave us and I would be in bad shape looking for a job while grieving, let alone the financial aspects.

Jonah is 3 weeks old today. We still do not have a closing date as we are waiting for him to rest. There is hesitation to try anything until we have waited for a while. I am concerned that he has had no nutrition and he can not get stronger without food. Dr. S did get with me and indicated that lack of nutrition is not a big problem yet and rest is the only thing he needs until closing his sternum.

Day 22 - Jonah is scheduled to re-re-close tomorrow. His numbers are much stronger and they may give him nutrition. Dr. E made some comments of caution about conversations with other Norwood families. I am not sure what he meant so I feel uncomfortable offering my help or support unless the "team" approves of our talking. I understand the issue of privacy but with no information other than occasional medical team comments like "things look good" - what the hell does that mean? Has the medical community become so paranoid of lawsuits that they will not allow us to get some comfort from similar parents? NEO Fight still did not call back with any response but had the local social worker talk to me. I had talked with her enough and there must be more people out there.

DAY 23 - We are scheduled to close today. The time has changed a few times but it really does not matter when it happens. Jonah has blotching on his skin but I am not sure what it is. I hope it is not an infection as he needs to be strong. He did have a dirty diaper from the CHA nutrition being provided by IV. I am already feeling a little better knowing we are going to try something as the daily waiting is unbearable.

Jonah is closed and it went well. I do not know if I should be happy or sad. I am relieved it went well but too scared to be excited. Everyone wants us to call with updates but I just can not do it all the time. Others are so positive and they have no idea that he is still in critical condition and I want to say, "yes he has improved, but don't you understand that I can still loose him any minute and I actually have lost him as a baby just by dealing with the illness!!!" I guess the next course of action is to wean meds, remove respirator, and feed him. Who knows how long this will take 2 - 4 weeks without complications but I doubt we will get that lucky.

Day 24 - Jonah has been alert and reactive all night. He seems to have his days and nights confused. We are weaning drugs and things are progressing slowly. He is hemodynamically stable but needs continuous tweaking. The waiting room continues to be a problem area with people being noisy and not cleaning up after themselves.

Day 25 - Jonah has been much more awake and when gags all his numbers fall which leads to more sedation. Its hard to believe we will get passed this points and I can almost imagine taking him home at times. I hope its not a false hope but I need help him get better. I want to show my appreciation to his nurses and medical teams as they have been so good about treating me like a human being. I will get little goody bags as part of an Easter present.

Day 26 - My expectations that Jonah would be of respiration in a few days was over aggressive. It may take a few weeks depending on how things progress. Jonah did not react well to the "sacatal" sedative and we have stopped its usage. He is off most of his heart medicine and it is the respirator that will be the hardest to wean. He needs food and I will push it more soon. There are 3 new HLHS babies arrived in the last few days. One died in a few days, one has had the surgery and stable, and one is waiting to be reviewed. I may meet them later.

Day 27 - Jonah will be a month old tomorrow so I am having a party for his birthday. It is amazing how much the team appreciated my little token on thanks and it makes you realize how much people take them and their skills for granted. These are the people saving your child's life and being nice is the least you can do. Jonah is doing very well and is being reduced off more morphine. He is learning to calm himself after getting made and they are reducing how often he gets versat. He is getting petolyte today to prepare his stomach for food. I met the new Norwood candidate family today. Like us they are not getting enough information so I made copies of all the articles I have collected of HLHS. I am not sure the hospital wants me to provide the copies but we as parents have a right to know the information in order to make decisions for our children.

Day 28 - Today is Jonah's one month birthday. I got him a Pooh cake and we dress him in his Pooh clothes. We is alert and keeping himself calm. The Doctor teams are getting together a plan to address Jonah's problem with weaning off the respirator. At night he tends to push his CO2 numbers up and then need more respirator support. Jonah will also start getting Nutrigimen formula today. I hope as he gets stronger, the support problem will reduce. Only time will really tell. One doctor made the comment that Jonah was very "bad" looking the other day and others were saying he looked good - what does this mean. I guess it means nothing - he is either alive or not.

WEEK 5 - As the days progress into months, I have decided to record my thoughts and experiences weekly as I have found the same feelings existing on a daily basis. I am mad at times, sad at times, and just going with the flow the rest of the time. We have moved Jonah to NICU to begin a more aggressive program of weaning and recovery. We are removing drugs daily, giving feedings every two hours, and have started removing surgical equipment. So far he is handling the stress well on his own and is sedated very little. He is learning to clam himself and seems to recognize my face as a calming effect. I bought a stimulation mobile and responds by looking at it regularly. He is sleeping a lot as he is not disturbed as much as in post-operative areas. While he still gets blood, it is less regularly given. The goal is now to get him off the vent but not too quickly. He did get a central-line and so far no complications. His white count is up and cultures should indicate if an infection is present. It still seems coming home is several weeks away. It almost feels normal spending much of my day at the hospital and we are getting used to the jumbled nature of our new life. The one thing I feel we have learned so far is to enjoy every minute I get with Jonah be it in the hospital or someday at home. It does not do much good to judge quality time in normal ways but we have come to enjoy even sitting there watching him sKenp or participating in the treatment procedures themselves, such as bathing and weighing. While I feel more stable, I still can not concentrate on many things such as reading or simply paying household bills.

I don't know what to do about work. We can not afford the income loss even with drastic expense reductions including keeping Andy at home. I do not think that would be good for him as he enjoys the daycare/school routine. I have thought about part-time work but the cost for Jonah's care in-home may not be offset. I have yet to see the medical bills but we anticipate the total around $3000 per day and $59,000 for the surgery with a total outlook of $250,000. Our HMO plan says we only pay the $500 deductible but until I see the payments actually processed I will remain skeptical. While borrowing from my dad is an option, I do not know when we could pay it back.

Medically speaking Jonah is critical but stable. We tried to extubate but he was not strong enough to stand the extra work needed to breathe on his own. We will try again in a week or two. He has had spells of "white" stool which may be a bladder problem to be watched. He is getting more drugs in his food and less in IV so that may account for the variances. Assuming no complications, we are still 3-4 weeks away from coming home. We are looking at home care options and all seem to be do-able but do not know what to do until we get closer. The nurses have ideas and we are looking at all options. He is up to 8lbs and throwing up more frequently. He is looking better in his skin tenacity and color. His white blood cell count has decreased since the central line was pulled.

The measurements used to monitor Jonah's progress post operative:

Monitors: