Claire's Journal -- Thirteenth Month


April 10

  Dad - not wanting to let go.Mom heard Claire stirring around 1am and noticed she was trying to get all her fingers in her mouth, so mom quickly fixed her a bottle. She drank 2 1/2 oz, very slowly as mom squirted it in her mouth. She became tired towards the end of the meal, and mom put her on her chest to sleep and she went right to sleep. On her stomach, her O2 levels have been very good... upper 90's, so when she sleeps or is at rest, she is on her tummy. In the morning, she woke up hungry... hands in mouth again. She needs her meds before eating, and they were already measured by the nurse for mom. However, they weren't measured correctly. Claire was getting Pepcid for her tummy, incase of mucus buildup or upset stomach. Mom asked them to take the meds back and bring the bottles and she would measure them herself, as she had been doing, but was thankful that the nurses wanted to help. As mom was giving her meds, Claires pediatrian came by to check up on her. He said her lungs were Bringing smiles to the Hospice Nurse.   She said not many patients do that.still quite gunky (must be a new medical term) and same prognosis, not good... just keep her comfortable and let her decide what she wants to do. Claire had an ounce of formula with pedialyte mixed (3:1) and was tired. Mom let her sleep on her chest and soon noticed she had a fever. Her temp was at 101.5 (under arm, so that is 102.5). The nurse quickly brought Tylenol(she was taking it by suppository) and mom let her sleep it off on the bed, on her tummy. She seems to respond very well to the Tylenol. Mom let her sleep for a while while she showered and woke her to get her 1pm antibiotic. She was hungry again, so mom fixed her 3-4 oz. She drank all but 1/3oz by 2:30pm. She drank the formula... she didn't have it squirt into her mouth! Grandma fed her the last oz or 2, and Claire fell asleep on her chest I'm supposed to be what?  Sick you say?in the rocking chair. Claire's aunt spent the morning on the phone updating family far away. Mom asked what the morning 'Press Release' was for Claire, and her aunt said, 'Claire's mom doesn't move around much or leave the room, and Claire isn't better, just holding her own.' Mom sometimes has to ask how she and Claire are doing... heheheh. At 5pm, her temp was 100.2, one degree is added when taken under the arm to equal an oral temp, so her temp was officially 101.2. At 7pm,she was 101.8 (102.8). The nurse needs to call the dr and see if she can have more Tylenol so soon. He said to just give her Ibuprofin, so they did.
Tomorrow is Easter, and this year, mom wasn't looking forward to it. It seems Claire is only getting worse, fevers frequently and no plans for xrays as her situation is grim. Just continuing to treat the fever and hope she keeps responding to the fever. The hospice nurse said sometimes the fevers get where they don't respond anymore... she had a term for it, like 'terminal fever', but mom isn't sure that is right. Mom was a bit scared, as Claire was already on Tylenol and Ibuprophen to treat the fevers, and they were taking a while to come down. Mom and dad fear the worst.
Mom stayed up late with Claire, and in the wee morning hours, they had a long talk. Mom told Claire that if it was her time to go, she could go, and mom would find strength somewhere to go on. Mom also told her that she had so many babies to help, and so many mom's to give hope to... she had so many stories left to write and her work didn't appear to be done... but if she needed to go, mom would try to understand. Claire just stared at her in the darkness. Mom was tearful as she was saying goodbye to her little precious baby and praying God would take good care of her.
Claire was bright eyed and mom was up late with the nurse, Claire and the fevers, so they had a little party and took pictures.
April 9 Claire was up for most of the night. She has become a night owl. Her oxygen levels have been good when she lays on her tummy... mom was experimenting with putting Claire on her tummy, back and sides to see which position her O2 levels are the best when they were in the hospital and she was hooked up to the monitors. She discovered that her levels were best, even perfect, when she was on her stomach. Problem is that she cannot eat on her stomach, so she struggles while eating. She wasn't eating, but her temp went up.
In the wee hours of the morning, Mom took her temp and it was 102.9 (under her arm, so about 103.9 normal)... mom asked the hospice nurse for a Tylenol. She was able to get a suppository, which is good for Claire (well, she probably didn't think so.. you know... suppository and all) as she wouldn't gag on the sugary medicine. The suppository also works much faster to get the fever down. The nurse came in and gave Claire the suppository, and saw the exhaustion on mom's face. She offered to take Claire out into the lobby and proceeded to transfer her oxygen from the concentrator (oxygen machine) to the tank. Mom was hesitating, but knew it would be good to catch up on her rest. The nurses proceeded to wheel Claire out to the lobby reminding mom that she needed to rest. Afterall, it was about 3am. Mom layed down, knowing Claire was in good hands, and not far away, but thought, 'my baby has a fever, almost 104 - can't sleep now!'... she wandered out to the lobby where a few nurses were caring for Claire... the were 'sponging' her with a wet washcloth to bring down the fever... they took her temp and she was already down to 101, so mom felt well enough to go to bed.Claire had very labored breathing all day. She was visted by her pediatician who got caught up with her. Mom asked about what to do if her breathing gets so bad that she is uncomfortable. She also wanted to know what he thought about her recovering... but he quickly brought her back to Kansas and explained that it would be so very difficult for her to recover, and she should just begin to plan for the worse. Well, 'begin' is probably not the best word, as mom has been planning for the worst for well over a year and a half now. Grandma came up and brought Grandpa and Claire's Aunt. They all came over in the evening and everyone sat around with Claire, laughing and making fun of everyone who wasn't there. They ordered pizza and ate, then left after the FSU vs Miami baseball game was over, around 10:30 or so. .
Notice Claire was admitted to the ER on Monday night with a partially collapsed right lung.

We found out this morning that she has gotten worse the lung looks really bad, completely infected and 'shriveled', and that her other lung, left lung, shows signs of pneumonia.

She is a fighter, and we are keeping her as comfortable as possible allowing her the opportunity to thrive.

She was admitted into Hopsice today, taking antibiotics, has oxygen and laboring somewhat in her breaths.

Thank you everyone for your support. We are praying and spending every second with our little peanut, looking for one more miracle from her.
April 8  

Claire coughed all night and didn't sleep well at all. In the morning, she didn't look well at all, she looked tired. Claire seemed to be doing well, certainly no worse, and the drs made rounds at the hospital. The pediatricians assigned to Claire that morning came in around 10am. Evidently, they spoke to the Hospice Family Coordinator before coming in to see Claire and mentioned that she would be moved over there soon. They didn't seem to address Claire herself, or mention looking at the chest xrays that were taken at 5am (and again at 7am) that morning. Mom asked about the xrays, and as what seemed to her to be an afterthought for them, they said they would have the resident talk to the radiologist - AFTER their rounds, in about an hour and let her know. Now mom had been living for these xrays, tho she assumes that Claire is only getting better, cause that is what Claire does, but thought it was odd that the peds hadn't even mentioned them, much less looked at them. Mom wasn't too pleased. Mom took a shower, and when she got out, was met by the resident who said that the entire right lung was now affected and essentially not useful to Claire. Also, there was a pneumonia in the left lung. Mom was upset to say the least. Mom asked, 'What Next"? and the resident said to just continue with what mom was doing. Mom said, 'but it isn't working', and the resident just shrugged as if she didn't think there was anything else to do for Claire. Mom was pretty upset and asked her to go talk to the PICU pediatrician who was seeing Claire there... she loves him and really has a lot of respect for him. Once the resident left, mom broke down and cried. She called Claire's dad and tried to keep it together long enough to tell him that Claire's entire right lung has filled with infection and is mostly useless, and her left lung is 'going'. He suggested calling Claire's ped and mom agreed that would be a good idea. After a short while, mom recieved a call from the ped office saying that Claire's ped would defer to the PICU dr that mom liked and he called him personally to ask him to review the xrays and talk to mom. Mom waited, she would like to say 'patiently' but probably not so much. Meanwhile, she asked if they could give Claire Zithromax. It is the antibiotic she took the last two times she had pneumonia and it really knocked it out. She prefaced her request with,'I know it is probably too little too late, but what could it hurt, and we would feel like we did everything we could'... eventually the dr came in and spoke to Claire's mom and dad. He explained Claire's situation. He said that the lung is like a bunch of small airpockets which are fed air through little 'lines'. In Claire's case, the little lines are plugged up with secretions. When she came in, part of the pockets in her lung was 'shriveled', as air wasn't getting to them. Now, 80-90% of the right lung was 'shriveled'. Adding to that, the left lung had fluid in it. He said that the prognosis wasn't good and odds were against her, but he has seen kids do incredible things and she could recover. Mom has never had a dr say that about Claire, ever. He did remind mom that her lungs were pretty bad, and she was a 'delicate baby', and it wasn't too hopeful. He explained intubating Claire to blow up the air sacks, but said that once the tube was taken out, there was no assurance that the lungs wouldn't 'shrivel' back, or that she wouldn't become dependant on the tube... not to mention having a tube put down the little Peanut's throat. That is something Claire's parents never wanted for her. Claire's dad asked if there were anything else they could do therapudically, and the dr said they could use the 'bag' to push some air into Claire's lungs. It ended up not being as bad as it sounds, as mom and dad wanted to learn more about it. He said it was more like a gentle puff of air, and they decided to try with the stipulation that if she was in ANY discomfort, cried or looked distressed, they wouldn't continue to do it. The hospice nurse looked nervous over this decision. She felt that it would appear to be more life-saving (as that is what the equiptment is used for) than for therapy. Mom and dad insisted that they needed to try whatever they could, that wasn't invasive... and this fit the bill. The dr left and came back with the respiratory 'guy' (mom knew him well, as he has been in every 4 hours to tap on Claire's back with a little tool to help loosed the secretions). The dr put the 'mask' over Claire's face, and she squirmed a little, but didn't cry. Then he squeezed the 'bag' as Claire breathed in, and she didn't seem to mind. Mom thought it could be a good thing. She watched Claire breathe and the dr would say when the puffs would be given, then mom tried. Claire didn't cry or look distressed. After getting Claire 'untied' from the IV (tho they left the IV itself in for meds later) and the monitors, Claire's uncle and mom loaded her up with her oxygen on in mom's car and mom drove her over to the hospice house. They, as before, were all ready for mom and Claire and very welcoming with many hugs and well wishes for Mom and Claire. They got settled in and had family and friends come to visit to see if there was anything they needed. Friends asked to keep Claire's brother and sister for the weekend, but may only keep them for the night, so dad could stay overnight with mom and Baby Claire.
Still not eating well... maybe 4oz today as mom squirts in the fluids.
Mom had received a bottle of holy oil from a teacher at the kids' school when the teacher heard that mom was expecting a baby that may not live. Mom called dad to ask him to bring the oil from home with him when he came to the hospital.
Mom had used the oil even before Claire was born, and every time she went to the hospital, mom used it before going. She hadn't used it this time, and felt that it might help Claire. When dad arrived with the holy oil, mom made a sign of the cross on Claire and said a simple prayer to ask for help for her and strength for mom.

April 7   Second full day in PICU.
Claire was going to the 'floor'... that's hospital talk for getting out of ICU and going to a regular pediatrics room. By about 3pm, they were moved and getting settled in to the new digs. Mom was happy because for the first time in days, she is able to take a shower... and she didn't have to walk out of the NICU and down the hall to the waiting area to use the restroom.
They were visited by the pediatrician that was assigned to Claire. They mentioned taking xrays in the morning and seeing if there were any changes, but said little else other than introductions. Claire started coughing a bit more, and the respiratory 'guy' said it was good, she needed to cough to loosen up the gunk in her lungs. Mom agreed.
Claire isn't eating too well... mom is squirting her food in her every once in a while... she may have had 5oz today of milkshake.
April 6   First full day in PICU.
Mom was visited by the PICU dr who explained to her what was going on in Claire's lungs. The passageway that blew air into the little airsacks in her lungs were filling with secretions. As the secretions blocked the passage of air, the airsacks would collapse. When people think of a collapsed lung, they think of a lung that has air 'next' to it, outside the lung, and as the air pocket fills up with air, it actually pushes on the lung, collapsing it... that isn't what Claire has, and if the secretions and be coughed up or moved around, the air pockets in her lungs will fill back up with air, making it easier for her to breathe. Currently, she is having a hard time breathing, and it is using up much of her energy.
She has been eating well, and this evening drank 12 oz of shake, that makes only about 14 oz for the day tho.
April 5   Claire was up pretty much all night. She was sleeping in 15-20 minute increments, so that meant that mom was sleeping in 10-minute increments throughout most of the night. Claire would wake up with a cough followed by a painful cry. Mom thinks she has a sore throat, and kept giving her nose drops to keep it moist.
Mom woke her to give her her meds and tried to get her to drink some Pedialyte/juice... she had about 1 1/2 oz and went back to sleep. As mom took her shower, she put Claire in the room with her so the steam would help keep her moist too. It seemed to help. Mom had the humidifier on, but it didn't seem to be working too well... probably time for a new one.
Mom and dad are taking half days... dad taking the first half to watch Claire, give her a bath and try to get her to eat/drink more.
Mom called Hospice to see if the nurse could come see Claire this morning. Mom isn't crazy about taking Claire to the dr office if it is just a little cold, as mom suspects... but if Hospice thinks she has pneumonia or something, then they will go. The Hospice nurse said she may be able to 'order' her some meds, but didn't get specific, without her going to the dr office. Guess we will see what happens.
Mom isn't crazy about spending Easter away from family... so she's really hoping Claire will get better really soon.

Mom recieved a call from the ped office and they said Claire should go get chest xrays and bloodwork. It was 4:30pm and the lab closed at 5:30pm and the radiology place closed at 6pm (mom called on her way to see where to go first as she knew she would be cutting it close). It was across town and during rush hour traffic. She and Claire made it through the labwork with minutes to spare, only to find out there was a one-hour wait until Claire got her xrays. Kind of a hurry up and wait. When the xrays were done, mom got a call from the on-call nurse while waiting after the xrays were done (it was 7pm and the drs office was closed). She said that she would need to talk with the dr, and had several questions about why Claire needed the xrays, etc. Mom gave her her cell number and the nurse called back after mom got home. She said the xrays showed a 'parially collapes lung that was condensed'.. the translation of condensed is evidently there's fluid in the lung. Mom was scared, and asked what next. The nurse said they needed to get to ER. Mom was hesitant, and the nurse said the alternative was to give Claire an antibiotic... she called one in so mom could have the option. Mom called hospice and after the hospice triage nurse spoke with the on-call nurse, it was determined that mom needed to get to ER. The hospice nurse said she would call ahead to let them know Claire would be coming and would need O2 asap. Upon arrival at the hospital, mom walked in (hurried) and filled out the paperwork. She started tearing up and handed the form to the security guy... he looked it over and asked mom how old the baby was... she held up one finger... she couldn't talk. He said they would be with mom soon, and she could go have a seat. To mom, this meant it would be 20 minutes to an hour. Mom picked a quiet corner and set Baby Claire down on a chair next to her, took her hand and started to sob quietly. She felt her baby was dying and no one knew, and she just had to wait her turn to be seen along with everyone else. Within minutes, a man came up, he was a hospital worker, he asked mom what the problem was... she told him her baby had a partially collapsed lung and pneumonia (it was written on the form she filled out), and started sobbing more. He asked for the baby's name, mom told him, and he said someone would be with her soon. He was right. Within only a few more minutes, another man, an RN, came up and said to mom, 'Claire...?' Mom said, 'yes', and he grabbed her carseat and mom followed... he walked very quickly and took Claire right on back and started by checking her O2 levels... mom watched patiently, and thankfully. She was at 80%... a woman came in and started Claire on oxygen while they checked her over and asked many questions. Claire and mom were sent to the trauma area and the dr met with them soon after to find out more... he was a very compassionate and young. Mom liked him and he really listened to her. They waited there for a while until a room was ready, got an IV started then antibiotics. Afterwards, they were sent to PICU (Pediatric Intensive Care Unit). Claire had been there once before when she was only about 5-6 months old, and she was having seizures. They passed women by the elevator who were carrying packs of cigarettes as if they just came from outside smoking. Mom was pretty upset seeing that, as her little peanut was on O2 and never did anything wrong, and these women chose to smoke and ruin their lungs... just not fair. But it is their choice and mom shouldn't judge anyone, especially grown women.
Respiratory folks came in to add humidity to the O2, and to tap on Claire's back and side to loosen secretions. She was started on an antibiotic in the trauma area before she got to PICU area.
The xrays came back and the PICU dr attending to Claire said she thought the xrays weren't as bad as mom had been told... mom was pretty happy and was ready to leave, when later she came back and said they weren't great afterall.
April 4   Rumor has it that Claire didn't sleep much during the night.
Mom called the next morning to see how she was, remember, her aunts and uncles (and cousins) were watching Claire and her brother and sister.
She found out that Claire was fussing much of the night, and finally went to sleep after her morning meds... of course, there were a few conflicting stories, but one thing is consistent, they all said they would watch the kids again!
Claire got home and was very lethargic. She would cough, and then cry. Appears to have a sore throat. Mom felt a bit helpless, but knew she needed Claire to eat, eat, eat, so she started working on that. Unfortunately, she picked prunes for the shake, and after a few hours, decided bananas would go over much better with Claire. She had about 3oz before bedtime around 9pm. can I put my thumb in my mouth now?  I'm so glad to be rid of that baby hat.
Around 11:30pm Claire woke up. She coughed, a very productive cough, and then she cried. Dad came in to see if he could help, and picked her up to take her out of the room so mom could get a couple more hours in, she knew it would likely be a long night. Within minutes he walked back in and said, 'She passed out'... Mom freaked, but dad really meant she went back to sleep (whew!).... mom was a little on edge. Dad put her back to in the swing and in about 10-15 minutes, she was up again... crying. Mom held her and dad fixed her a bottle of banana shake. She drank a few oz before going back to sleep. This time, mom put her in her carseat, and put it at the foot of Mom's bed... so she could keep a better eye on her, and not have to get out of bed to get her.
April 3  

Dad put Claire to bed around 12:30am, and she was up again at 4am. Mom fixed her a bottle and gave her an oz or two before she went back to sleep, around 4:30am. Mom went right back to sleep too after a few more Vitamin Cs. They all slept until about 7:30am.
Today was a big day for mom and dad!
Today is the day that Mom's brothers and their families are taking Claire and her brother and sister for the night! As one of Claire's birthday presents, Mom's brothers and sisters (and family friends) got together and they each picked a month to come to visit and take the kids from Saturday am to Sunday pm... giving mom and dad a break once a month for an entire year.
When you have a baby who is not 'typical', you do worry about the future, and even more, mom worries that if something happened to her, who would (be able to) care for Claire. This will allow mom to feel more at ease about Claire's future.
The gift is the greatest thing mom could hope for, but at the same time, a very difficult thing, as it requires mom to give up control of Claire's care. Needless to say, there was good documentation to accompany Claire as well as a brief training session on the 'Care and Feeding of Baby Claire' with a workshop to follow. Once Certificates of Completion for the 1-hour course were handed out, mom was able to 'let go'... somewhat.
Needless to say, it took a while for mom and dad to feel comfortable leaving... Claire was getting a little cold. Once they finally left, much of the day was gone, so they opted to get a small project out of the way by running a few errands. Afterwards, they went out to an early dinner, caught happy hour, and were back home by 7:30pm.
Mom had so many projects she wanted to work on, but thought she should first work on getting caught up on her sleep. Dad wanted to watch the final four college basketball games, mom wasn't interested, so she went to sleep while dad watched the games... mom wasn't bothered at all by the tv. Mom was asleep by 9pm.
Mom and dad called a few times, but was assured everything was fine... but she kept calling anyway. Mom and dad feel so loved having such a terrific support system... the love of family and friends... that is what life is ALL about!

April 2   Claire was up again at 2:30am with a loud cry... same thing, runny nose and couldn't breathe well, so mom cleaned her up and put her on her chest, Claire fell asleep again.
She was up around 7am with a cry. Mom fixed some pedialyte/juice, she decided to avoid formula today with all the congestion. Claire drank it all and wanted to play, and her big brother wanted to hold her before school, so she sat in his lap. When he left, she went to her swing, but still seemed hungry, so mom fixed a shake, with pedialyte instead of formula, and 1/2 jar of bananas and barley cereal. She drank a few oz and got really tired, so mom put her back in her swing and she fell asleep.
Mom answered emails and went to work for the morning. Dad watched Claire and tried feeding her; she ate a little.
When mom got home, Claire was awake. Mom picked her up and tried to feed her, but she was so congested, it made it difficult, so mom gave her some decongestant and held her against mom's chest. Claire's eyes were a little red and watery. Claire fell right to sleep. Mom thinks she is overtired and will keep her head high and lower her consumption of milk for today... and keep her nose cleaned out. Mom put Claire down with her head up high and Claire didn't EVEN wake up. The little peanut is so tired. The congestion must have kept her awake for much of the night (we know mom was awake much of the night) and without much sleep, a peanut can get sick.
She has an occupational therapy appt today that mom is going to try to make. She hasn't had any seizures today, so mom is confident (fingers crossed, knock on wood....) that she has her medicine levels at a good amount.
Claire rested briefly, then started crying around 1pm. Mom fed her more shake, she had about 4oz for the morning, and felt that she was hot. Sure enough 102 temp(rectally, so that means 101 orally). Mom tried to give her Advil, but she gagged, so mom did what she could to get some down and put Claire back in her swing, hoping she will take a nap... a long nap, she really needs the rest to fight this off.
Mom cancelled OT.
Temp went down almost instantly. She is quite congested today, so mom will have her sleeping in her swing or carseat tonight to keep her little head 'flowing'.
In the evening, mom had a sore throat and feeling very much under-the-weather. She requested a nap. Dad said no problem and when he got home in the evening, mom went to sleep around 7pm. The nap turned into an all-nighter, as she was in a very very deep sleep, dad said.
Dad took care of the kids for the evening.
April 1   Claire slept pretty well in between mom and dad. In the morning, mom took the kids in to school and dad stayed home to watch Claire for a bit. He cancelled a golf outing so mom could go to mass and reception for school volunteers with Claire's big brother. It was a nice little outing for mom. She came home and dad said Claire had eaten very little, but no seizures.
Mom watched Claire for the rest of the afternoon and noticed a seizure at 1:30pm. Not something mom wants to learn about from daycare, and so mom wanted to monitor her during the day at home. She will likely call the dr office once they open from lunch to see if there should be any increases to the meds.
Claire drank about 3-4 oz of shake with mom. When she drinks, sometimes she coughs and typically that is when she goes into her seizure. Fortunately, she has come out of them each time. Mom just wants them to stop, but in Claire's lifetime, they probably won't.... but with meds, hopefully they can at least be controlled.
At 1:30pm, she had a seizure... she'd gone all morning without one. The dr office didn't open until 2pm, so mom had to sit and wait and hope she wasn't starting a string of them. At 2pm, mom called the dr office and they said a nurse would call back. At 2:30, Claire had another one, and mom called again... she reminded them that Claire was 'having' seizures, but the nurse was in with a patient, so they again, said she would call mom back.
Mom finally got a call back, and the nurse said the dr was out of town and if they ordered levels (blood test to see what Claire's meds levels were), there was no one there who could read it and increase the dosage. The alternative was to go to the emergency room at the hospital.
Mom heard ER and didn't want to go, not realizing the nurse meant to just go and not get admitted... just go to get the levels and have the dr increase the prescription, and then leave. Mom can have poor hearing at times.. usually based on previous experience. She thought if Claire had a seizure in front of the dr, he would admit her immediately. So mom called her Hospice nurse.
The nurse said that she could have someone come to Claire's home and draw the blood... she would just get a(nother) doctor's order for the labwork. Mom was so relieved, until the nurse called back and said she didn't have anyone who would come and draw Claire's blood... basically, she is just so tiny, and if you recall, they don't deal with too many babies (and everyone is thankful for that).
Eventually, the nurse called the dr office for mom so mom wasn't a 'go-between' and they each knew what could be done based on hospice care and insurance. They determined the ER was best to get the levels done, and hospice reserved a room, in case the hospital dr insisted she be admitted... and mom left for ER.
At around 5pm, mom arrived and within minutes, who walks in but the Hospice nurse. She was able to expedite things and ask even more questions and add input for geez... do I have to wear this hat... I look like a baby and I not... I'm ONE... can we take this thing off?!Claire when the drs and nurses were asking questions. Mom told her how very very much she appreciated her coming and waiting with them. After the bloodwork, it took a long time to get the results... they were released after 3 hours. It was so nice for mom to have someone there to chat with to help pass the time, and someone to help entertain Claire. Mom knows they are truly blessed to have their 'very own' nurse... and she is so proud to tell everyone -- they have their own guardian angle, right here in town!
The hospice nurse noticed that the blood was taken from Claire's heel, and knew she could do it. She told mom, with drs orders and one of the little gadgets (not the technical term), she could come to the home and take the blood for Claire's levels. That made mom happy, and perhaps made the nurse feel like the trip was worthwhile. :o)
As the dr came in with the results, he told us that Claire's level was '4' and normal was 4-10. So she was low... and he would increase the dosage.
He pulled open his book, did calculations out loud about how much she gets now, converted to actual amounts based on how much is in the meds (vs how much inert material) and then times 2 because she gets it twice a day... mom's head was spinning... then he proceeded to see what she needed for her weight, then redid the calculations backwards and came up with increasing the dosage with nearly doubling it. Mom thought that was an awful lot, since all the other times in was increased by a very small percentage. The dr agreed with her and decided to increase it based on the small percentages from the past, and signed off to let them go home. Mom was a bit happier. As they drove away from the hospital, Claire had another seizure. Looking at the time, it was after 8pm, and past time for Claire to have gotten her meds. When they got home, mom gave her the newest dosage and after drinking a few oz, Claire went right to sleep.
She was up again at 11:30pm, runny nose and congestion. It kept her up, so mom gave her some decongestant and another oz of shake, and they both fell asleep.
March 31
10lbs, 4-1/2oz

Mom what is this?  a duck... a rabbit...  I think he's confused...  maybe a rabbit-wannabe?Mom woke Claire to get ready for her dr appt. She was so very tired and didn't want to get up. So mom gave her her meds and got her bath ready.
Just before bath, Claire decided she was ready to eat, so she drank about 2-3 oz of shake, took her bath and was whisked off to her dr appt.
Once they walked in, they were taken back to the exam room. Claire was weighed; she is up nearly 10oz from 9lbs 11oz to 10lbs and 4-1/2oz. The nurse measured her length and she grew a whole inch.
Last month, when Claire got her RSV shot, mom looked up the meds and wanted to see if she should be aware of any side-affects, problems whatever and so today, when the dr mentioned giving Claire her MMR shots, mom recalled that the RSV info stated that MMR shouldn't be given until 9 months after the RSV shot, since RSV kinda cancels out MMR. Mom mentioned it to the pediatrician, as best as she could remember... it seemed like quite a while ago. The ped was terrific... he took the time (and he had little of it this morning) and he called the dr who gave Claire the shot... they knew nothing of this... and instead of leaving it at that, he continued his quest to get solid answers to mom's questions and he continued on... he considered out loud, 'it wouldn't hurt anything if she got it'... and mom said, 'oh yeah... tell that to Baby Claire', (it wouldn't exactly tickle) and he looked over his glasses and smiled. He finally got the answers they were seeking and decided to postpone the shots until fall, when the 9 months are over.
Mom is so happy to have such a wonderful dr who actually listened to her and gave her and Claire so much time out of his busy schedule. He is sending the 'waiting period' info to the dr who gave Claire the shot, so he can pass the info along to other patients. The RSV shot season is over, but there is always next year. Evidently, very few children even receive these shots, but they are the ones Claire especially likes to look out for.
Her dr 'upped' her dosage of her seizure medicine, esp since she had one while she sat with Mom in the exam room.
One of her fingernails is curving upward, so he looked at it closely and said there was little that could be done for it, and she may outgrow it (hopeful isn't he :o)... he also said, 'this is a very small problem' and mom smiled at him and said, 'don't I know it!'. And mom thought it could be infected, so she wanted to be certain... as that could lead to a big problem. He's so wonderful and understanding. Claire slept through most of the appointment, and cleverly got out of her shots today. Mom hopes that won't haunt them later, but if a shot doesn't 'take' there is no use in getting it.
Claire hung out on the couch while mom got some work done and got ready for a meeting at work.
Today, mom tried a 'normal' bottle nipple again, hoping to get Claire off the haberman. Tho she loves the haberman, Claire is getting stonger and her suck reflex is better than before. The occupational therapist suggested mom keep Claire on the haberman, since she is doing well, but Claire is very forward thinking and wants to learn new things so she can be treated like a typical baby (mom's not telling her anything different). Also, when she goes to a cup one day, mom wants her to drink and not just bite down and hope something comes out of it. Mom had tried this same nipple (a regular nipple, mom made a cross cut at the end of, for shakes), but before Claire just kept biting down in hopes that some food would squirt into her mouth. Mom had used the haberman valve with the regular/cut nipple, but it was awkward... and really didn't get her sucking the food out. Today, mom tried the newer nipple (cross cut by mom) without the haberman valve and Claire did really well. She was pretty hungry when mom tried, perhaps a key, and she had about 10oz from the new bottle throughout the day after her first 4oz from the torn haberman in the morning before her dr appt. It will be easier for others to prepare her bottles using this new nipple too... which is actually just a typical silicone baby bottle nipple. Mom is always excited when Claire is open to new things! :o) Claire still eats often by spoon, usually bananas, as they are her favorite and she doesn't like to spill a drop!
Dad came home and the Physical Therapist showed up as mom was leaving. After the PT, Claire was visited by hospice and they had a nice visit wher and her daddy.
In the evening, she had more seizures. Dad was up with her until 12:30am, then mom took over and Claire drank a few oz of shake and fell asleep.

March 30   Claire had a typical Claire day (mom loves to think that Claire's days are typical)... when she got home from daycare, a hospice volunteer was there to watch the kids while mom and dad went on a 'date'. As they got ready to go, Claire got her meds including a decongestant. Soon after, Claire had a seizure. Mom and dad had worry on their face, but the volunteer said not to worry, that she would keep a very good eye on her while they were gone. She is a wonderful woman and mom has every confidence in her!
Mom thought Claire would just need her meds increased and with the dr appt tomorrow and the weigh in, he would probably just increase the dosage on the spot based on her increased weight.
When they got home, the kids were asleep in bed and Claire had fallen asleep in her boppy. Mom moved her to her bassinet and she stayed awake.
March 29   This is me... smiling... sort of...Claire was covered in sweat this morning. Mom thinks she could have been like that much of the night. She had on only a one-sie outfit (short sleeve, one piece), a pair of socks and a blanket covering her little legs only. Mom doesn't get it... why is she so hot... must be burning a lot of calories when she sleeps? Maybe a high metabolism? Mom slept with long sleeves and under a comforter. Tonight they will put on the ceiling fan, perhaps the air doesn't circulate as well in the bassinet?
Mom woke Claire for school. She didn't have a fever last night, so mom thought she would take her in, if even just for part of the day. Claire's caregiver was told about the fever and asked to keep a close eye on her temp all day. Typically, children don't get fevers until the evening, and mom will have Claire then. Claire drank about 3oz of shake and then whisked off to school with some pedialyte/juice to drink this morning.
Fun day at daycare and then home to play with the siblings... they ran around outside after school enjoying the weather and expecting rain, while Claire kicked back and let mom feed her on the porch and watched the other children. Bath, more dinner and bed as usual...
March 28   Claire has been doing so well for a while now, so I guess she has to give mom and dad a reality check. She was up around 2:30am, and had a fever. It was about 101.7 and mom gave her Tylenol and a decongestant and some pedialyte/juice. The temp went up to about 102.3 during the next 1/2 hour, then started coming down almost as fast as it went up. By 3:30, it was coming down, so mom slept with Claire on her chest for about 1/2 hour and put her in her swing about 4am. Claire didn't seem to ever go to sleep, and mom slept with one eye open, watching her. Oddly enough, in the morning, mom noticed that Red Dog, who was tucked behind the swing, was now hanging down in front of Claire and she was batting away at him. She also lost a sock, which seems like it would be hard to do, unless she was kicking her feet's my funny face for grandma!!
Mom was up with her at 8am, she drank some shake and felt cool... by 10am, she had a low fever of 100.1, and mom opted to keep her home from church. The fever went away fairly quickly with Motrin and she finished off about 10oz of food. At first, mom gave her 4oz of prunes and bananas and some pedialyte mixed in for smoothness. Then another 4oz of bananas, barley cereal, and pedialyte... then a couple more oz and by 1:30pm, she was ready for another nap, so mom put her back in her swing after some decongestant, and Claire fell asleep for her afternoon nap... and mom got a well-deserved, hot shower.
Mom and dad will be stuffing in the food and fluids into Claire today, and making sure she gets lots of rest.
Claire stayed indoors today, except on meal she had outside while mom watched the kids play. She rested well throughout the day
In the evening, she felt warm, but mom took her temp and she was fine.
She fell asleep around 9pm in her boppy, so mom went to move her to her bed. She woke up and was bright eyed, as if she was foolin mom.
She got her bath, but cried through the whole thing, very unlike Claire. Usually baths are her best time and mom typically gets smiles. Dad yelled to mom to see if she was pinching the baby... of course, she wasn't.
Claire drank more banans/pedilayt/barley in the afternoon. Mom didn't want her to get more congested, and thought there would be plenty of calories in that. She had about 10oz in the afternoon.
When Claire got her bottle, she settled down, drank about an oz and became very disinterested. So mom held her for a bit, then put her to bed while she was awake. After about 5 minutes, mom checked on her, and she was still awake. The dilemma: should she pick her up? Mom decided to move her a bit, and Claire let out a pitiful cry. Mom held her for a while to calm her down, then put her back down. After 5 more minutes, Claire fell asleep.
March 27  

Claire woke up at 1am, crying. Mom fixed her a bottle and she gulped it down. Still wide-awake, Claire appeared to be still a bit hungry, so mom fixed another bottle. After a total of about 9-10 oz, Claire finally seemed disinterested in the bottle, but still awake. Mom held her for a little while, then put her back in her crib, awake. Around 3am, she let out a loud(ish) cry and mom jumped and went to check on her. She appeared fine, so mom held her a bit more. Claire was still very much awake, so mom put her in her swing, and Claire soon fell asleep, quietly, and after some Mylacon for gas, and some decongestant.
When mom woke up in the morning, she heard Claire, who discovered Red Dog and was swinging at him for a bit, then fell back to sleep, but mom had to wake her for meds and breakfast. Mom gave her juice and pedialyte, since her last 20 or so oz have been mostly solids (shakes), and her little tummy was growing quite large.
Claire drank about 4oz of pedialyte/juice and became uninterested, so mom put her hearing aid on and they hung out for a little bit. Later, mom swept off the porch and put up the playpen and Claire fell asleep in it soon after she layed down.
Claire hung out on the porch for most of the day soaking in the fresh air under her mosquito netting. She dozed in and out between meals and generally just hung out.
In the evening, she had more shake and then fell asleep in her boppy pillow on the couch as the rest of the family ate dinner, around 8pm, mom put her in her bassinet for the night. She was up again at 11pm, crying, and very hungry. Mom gave her about 9oz of shake and put her back to bed. She didn't seem to be too tired, but appeased mom.

March 26   Claire slept through the night, again. Mom also got a pretty good night sleep, tho she found herself awake around 4am, wondering about the meaning of life, and thinking about all the things she needed to do... but was able to go back to sleep fairly quickly.
Mom woke Claire in the morning and got her ready for daycare, and took her in. She had a great day, eating really well, but not sleeping at all. Mom thought that was a little odd, but then thought little of it.
When Claire got home, she drank 6oz of shake with prunes, then had a nice bath and hung out on the couch for a bit. She let out a big cry; dad thought her position on the couch (sitting up between pillows) may have gotten uncomfortable. Meanwhile, mom fixed another bottle and fed Claire, which calmed her down. She drank another 4oz of shake with bananas and drifted off to sleep around 8pm.
March 25   Claire slept through the night.
Dad got her up and ready for daycare, then he took her in. She had a good day, but didn't eat too well. Mom thinks she's going through a phase, and knows when she does this, they need to work with her really hard to see that she keeps up her nutrition.
Claire fell asleep when she got home after her meds and about 2oz of shake, not much at all... her tummy looked like it was full tho. It was about 9pm when she went to sleep.
March 24  

Claire slept through the night... mom is getting giddy about that!
She has a big day planned with eating, sleeping, eating, sleeping, PT(Physical Therapy), MT(Music Therapy) and hospice visits. So mom woke her up to get her day started (see pix of Claire sleeping... mean mom waking up that sleepy baby).let sleeping babies alone... hello... do you see a sleeping baby here... !!!Claire had her meds, change out of her pjs and drank 4oz of shake and went back to sleep. She went to sleep, snuggled under a light blanket, enjoying the fresh air on the porch in her playpen.
Today, mom received an email from a T18 friend who is working for a Trisomy Foundation. She emailed mom to let her know about a "Day of Grace" charity golf tournament and auction in Naples, Florida in May to benefit Trisomy organizations. The family hosting the tournament recently lost a T18 baby, Emma Grace. The golf tourney sounds like a fun time, and everyone knows how great the weather has been in old F-L-A lately! Perhaps the family can go down and meet some other Trisomy families. Mom's friend said she was anxious to meet Baby Claire too!
Mom likes the message on the website, "Golf teaches us we all have handicaps".
Claire's PT appt went well. Therapy was out on the porch today. The therapist said that Claire was really loose, and said that she often would straighten her back, like when she was stretching, to show that the spine can straighten, and thought it was correctable (pix on left of Claire with her therapist - click to enlarge). That was good news to mom. Claire has an orthopedic appt in May, so they will find out more then.
After therapy, it was 5oz of shake, then back to sleep. Must be all the fresh air making her want to sleep her day away.

March 23  

my big brother is the BEST... I'm going to be just like him one day!!!Claire slept through the night. Mom went to get her up in the morning and she was already awake. Eyes open and counting her fingers.
She enjoyed a day at her daycare and in the evening she went to an FSU vs. Iowa State basketball game for the NIT tournament. Her team lost... but she had a great time.
She must have been overcome by the excitement of the close game, as she didn't want to drink during the game. Or maybe she was mad that she was off schedule for her bath and nighttime routine.
She came home and drank and took her bath and drank until mom put her in her bed around 11pm. Claire was asleep in minutes.
Here's a picture of Claire and her big brother snuggling on the couch. Click on pix to enlarge.

March 22  

Claire slept well, however, her big sister was up at 1am. Mom put her back to bed, but she was up again in minutes and wanted to snuggle with mom, so mom didn't get much sleep afterwards.
Everyone had a good day. Kids were getting bored with Spring Break (already) and looking forward to school and seeing friends.
Claire fell asleep around 9pm... it was a very hard sleep and when mom put her in her bassinet, she didn't flinch a bit. She was a very tired Baire.

March 21   aahhhhhh!Claire woke up around midnight. Mom didn't think she could possibly be hungry as she ate so much before she went to bed. Mom fixed her a bottle, but after about 2oz, she didn't seem too interested in it. So mom gave her some mylacon, in case all that food wasn't agreeing with her, and some decongestant, in case she was just having a hard time breathing. She fell asleep shortly afterwards on mom's chest, then mom put her back in her bassinet. She slept until morning, when mom woke her for meds and breakfast. She got all ready for church, wearing one of her new birthday outfits and slept in her sling the second half of mass.
She got home and was still sleeping, so mom put her in her playpen on the porch for a couple hours, then woke her up to eat. She drank 8oz of shake and went back to her playpen for another short nap while mom prepared more. She didn't seem to interested in food, just wanted to be a couch potato and bask in the fresh air and warm breeze.
March 20   is this good enough of a smile?  can we get back to the bath??!Claire slept through the night, waking up once with a loud cry, but went back to sleep. Mom is starting to think that Claire soothes herself with her thumb to the point that she doesn't get as hungry as easily.
Mom woke her this morning at 8am. Claire drank 5 1/2 oz of shake for mom, and then mom put her in her swing. Mom needed to get ready to take Claire's sister to a birthday party at 10:30am, so dad took over. When mom got back, Dad said that Claire drank another 5+oz of shake... then she went to sleep. Mom took Claire from her boppy and put her in her bassinet, then she and Claire's sister layed down for a nap.
When they got up a few hours later, Claire was still sleeping, so mom woke her up to play and fixed her an 8oz bottle of shake which she drank, then another 3-4 oz.
My big sister loves me... she isn't in it for her own need for attention...Claire doesn't seem to be crying much for food, but willing to eat when it is presented. She is such a good baby, and mom doesn't know what to think of it all. Maybe she just isn't so hungry that she will cry, but mom catches her just before that stage. At 5:30pm, Claire is hanging out in her boppy watching basketball. Go Wake Forest!
Mom noticed that Claire has been smiling during her bath... she loves the warm water and attention. Here's a pix of her in her bath tonight. If you click on the pix, it gets realllly large, so be sure you have a relatively quick connection to the Internet. Also, here's a pix of Claire with her big sister, who has recently taken an interest in Claire. Notice that Claire's legs are getting a little chubbier on the enlarged pix (when you click on the pix to the left).
After her bath, and a shake, Claire went to bed around 10pm with a VERY full tummy!
March 19   Claire slept through the night and mom had to wake her in the morning for school. Mom took her in on the way to work, as dad had an appt early and a sitter was coming by to watch the kids who were off today.
Claire seemed to have a nice day at daycare, her mom and dad took turns taking care of her brother and sister all day.
When she got home, she was hangin out in her swing for a bit, and got fussy, so mom fixed her a 6oz bottle of shake, she drank it pretty quickly and seemed very content. Mom put her back in her swing with the lights on, and she fell asleep around 7:30pm, so mom moved her to her bassinet for the night. A tired bear.
Mom is a little concerned about her constant sweating (mostly just when she sleeps) and wonders if she gets so hot that it is what keeps her sleeping. Sometimes it seems like she could sleep for 12 hours, and not wake up for food. That is making mom a bit nervous.
March 18   Claire slept through the night again. Still sleepy, but happy. She is eating well, but mom would still like to see her eat more. She seems to get some extra 'padding' so that makes mom happy. Grandma said mom has never had a 'fat baby', so she can't expect Claire to be a 'michelin (tires)' baby... but mom is a mom, and they always want to fatten up their children... to a degree.
Claire had a nice warm bath and a big bottle of shake. Mom layed her in her bassinet and Claire was still awake, a little, and mom patted her back for about 15 seconds, and she started dozing off.
March 17   Claire slept through the night and woke up fussing at 6:30am. Hungry. Mom fed her and then put her in her carseat so she could sit up. She fell back asleep, but after mom got some work done, she woke her back up. Claire needed to get up and get ready for her photo shoot for her one-year pictures.
The photos went well, and then Physical Therapy. Claire is still very sleepy today, but eating well, so mom tries not to be concerned.
March 16   oooh... did someone say banana milkshake?Claire was up at 1am to eat, then back to sleep after some decongestant. Mom woke her in the morning for school and she went with dad and the kids. She had a good day at daycare, tho sleeping only 40 minutes total. When she got home, dad fed her so mom could get some sewing in, and after 5 oz of banana shake, she went to sleep on mom and dad's bed around 6:30pm. Mom knew she would be up at midnight to eat, and just planned accordingly. At 10pm, when mom went to bed, she moved Claire to her bassinet, and Claire went immediately back to sleep. No bath. No snuggle time with mom. The daycare must have worn out the little peanut.
March 15   Claire is back in daycare and even tried some strawberries today. She loved em. She ate well today and had a good day.
March 14   Claire was up again at 2:30am and decided to stay awake for a while... Dad watched her for mom, trying to figure out what she needed. She was fussing the whole time and didn't want to settle down.
Mom was up to take Claire J's mom to the airport at 6am. She went back to bed when she got home, only for dad to sit up in bed and yell "It's 7am!!". Mom said, "so"... she knew dad was half asleep and thinking she missed taking Claire J's mom to the airport... then it hit him... and he said, 'oh your back aren't you(smile)'... she smiled back and said, 'yes'... and went back to sleep. Or tried to. Grandma and Grandpa were due to leave early and then there was church... and other friends of ours that mom didn't want to miss saying goodbye to, and if she went back to sleep, well, she would miss out on the whole morning... so she couldn't get back to sleep and got up to make coffee and muffins.
It was a nice day, mom and the girls (Claire and her sister) all took a nice 3 hour nap, while Claire's brother slept for maybe an hour and finished his story for school... and played some computer games.
March 13  

me on my birthday... don't I look like a baby... that's because my aunt put this hat on me... Claire slept for the rest of the night. Mom and dad got up and started getting the house and yard ready for the party.
The weather was beautiful, starting the morning in the mid 50's and the middle of the day reaching upper 70's... it was a clear day and the party was outside, so Claire took a nap on the porch before the party so she would be well rested when the guests arrived.
She had a beautiful birthday cake that was shaped like a sofa... with lots of stuffed animals on it, including a pink elephant (mom's favorite). All the children at the party loved it and some even got an animal to eat. Claire's friends, who made the cake, also brought over a pinata filled with candy. The kids spent the day running around in the back yard while the parents and kids ate. Mom's sisters made little peanut butter and jelly sandwiches (crusts cut off like tea sandwiches) for the children... and there were many Birthday Cake !balloons, pink and teal, all over the yard and porch. Mom's sisters also made lots of food and kept the dishes full, they were a terrific help to mom. And Claire J's mom did the decorations and helped keep things organized as mom was very busy before the party.
Claire was held by many people, each giving her well wishes and signing her guest book.
The last guests left at midnight and Claire went to bed soon after, her daddy put her to bed. Mom posted pictures of Claire's First Birthday Party!

March 12   Claire was up and off to school this morning as mom started getting ready for the party. She finished off some cleaning and then at noon went to pick up a friend at the airport. Her friend was another Trisomy 18 mom who she met on the Internet and was counseling mom through her ordeal of the last year and a half. Her baby's name was also 'Baby Claire' and mom refers to her as 'Claire J' and our Baby Claire as 'Claire E'...
Mom was very excited about the visit and got to the airport on time, but Claire J's mom's plane landed 15 minutes early, so she was waiting on mom. They had a wonderful time catching up. They went to the mall to pick up a gift and some lunch, then off to pick up Claire for her OT appointment at 1:30.
After the appointment, they picked up Claire's brother and sister and got home. Claire J's mom bonded with Claire before Claire's grandma came over, and mom did some cooking for the party tomorrow.
Later in the evening, another friend of mom's offered to keep the kids, so mom cancelled on the babysitter and let her keep the kids. Mom and Claire J's mom went to meet mom's family (many in town for the party tomorrow) and watch dad's band play. The went to get the kids afterwards (around 10pm) and got home and went to bed. Claire was alseep when mom picked her up, but woke up and decided to stay awake until 12:30am, when mom decided that, tho she ate a lot, she must still be very hungry... and fed her about 3 more oz of shake before Claire finally drifted off to sleep.


March 11

One Year old

12 months too!



Happy Birthday to MEEE!Claire had a wonderful birthday. Her favorite Hospice volunteer brought her a beautiful birthday cake, and a lovely dinner for her family... not to mention the balloons. The family had a wonderful celebration. Claire's uncle, aunt and cousin came over to celebrate, and so did another aunt and her son. They brought an adorable little outfit for Claire to wear (pictured/green).
Thank you everyone for the Birthday wishes that have been flowing in throughout the day! It means a lot to the whole family to have so much support from everyone!
They are truly blessed, and know it!
As an added bonus to the day, the family heard from Baby Ryan's family. Baby Ryan passed away in January - he was full T18 and missed his one-year birthday celebration by two days. His mom informed Claire's family that she just had a new baby, a little girl named Drew...on Claire's Birthday! Ryan's mom and Claire's mom are both so honored that their daughters now share the same birthday.