Tuesday, December 30, 2008

Who stole a cookie from the cookie jar?



This morning I was putting Lucy down for her nap when Sophie yelled up the stairs to me,


"Mommy, I'm still hungry for a little more food. "


Mind you she just finished eating breakfast about fifteen minutes earlier. I chose not to respond to her as I was in the rocking chair nursing Lucy to sleep. After laying Lucy down for her nap, putting another load of laundry in the machines, and getting dressed, I came downstairs yelling "What are you up to Sophie?", to which I heard no response. When I came into the kitchen I saw a small chair pushed up next to the counter where a large plate of peanut butter kiss cookies were located. I then looked down to see our Sophie munching away on one of the above mentioned cookies.


So I asked her in a stern but sweet tone, "What are you doing?"


Sophie: No response from her as her mouth was too full to talk.


So her Dad asked, "What did you do Sophie?"


Sophie: She swallowed and said enthusiastically, "I had an idea!"


At this point Drew and I are trying very hard not to laugh as we are trying to teach her that she needs to ask us before she just helps herself to something to eat. In order to keep her from digging a hole any deeper I skimmed over the obvious question and went straight for an answer.


Mommy: So I asked her, how many cookies have you eaten?


Sophie: I think just five!


We learn something new everyday!

Monday, December 29, 2008

Merry Christmas to all and to all a good night's sleep!


What a whirlwind of a week we have had! Last week at this time I was running on adrenalin, shopping, cleaning, wrapping, organizing, scheduling, cooking....Merry Christmas to all and to all a good nights sleep! This morning I slept in until 10:30, of course not without waking every four hours, feeling more tired than ever! I was only able to do this because Drew took off this week for a vacation at home! We love vacationing at home! The accommodations are great! Yesterday our entire family spent the day in our pajamas playing with all the new goodies that Santa delivered! I knew that Jack's Nintendo DS was going to be just as addicting to him as it is to Drew and I. Our conversations about the game Mario Kart sound as serious as our conversations about the worlds problems, it's ridiculous! Don't worry Grandma, we are going to set some limits soon. Megan and Sophie have been busy playing Christmas for the last few days. If you can't find something in our house right now you need to ask one of them as they have probably wrapped it in paper and placed it under the tree. As for Lucy, it was like a Where's Waldo game on Christmas morning. Lucy had fun crawling through the sea of presents and wrapping paper, it was hard to see her at times. We had so much fun visiting with family, the time went by so quickly! We are trying hard to keep the spirit alive this week as we enjoy some time as a family reflecting on the last year and looking forward to the new year.

On a different note, last weeks appointment with Lucy's metabolic doctors was frustrating for many reasons, but mainly because there is still so much uncertainty! Drew and I agreed to participate in the research study which will look at Lucy's DNA as well as ours to determine if she has the gene for SCHADD. We also had labs drawn to look at Lucy's growth hormones. These were the labs that the Endocrinologist wanted done the next time she was having blood drawn. The results for these labs won't be back for several weeks to several months! Also we added Pulmonology to our list of specialists because apparently the Cystic Fibrosis (CF) door can not be shut! Lucy and I are carriers of the CF gene, Drew passed a screening for the the CF gene but never underwent further testing as there are hundreds to thousands of possible gene mutations for CF and it was never warranted. Now we are needing to look closer at Lucy to see it she has two pairs of gene mutations for CF, you need to have two pairs in order to have the disease. Many of Lucy's symptoms resemble the symptoms of a patient with CF; however, Lucy has not had any upper respiratory issues. We are learning that not all CF cases have upper respiratory symptoms. Lucy did pass the sweat test for CF in late June, apparently that does not mean much when you look at just her symptoms. Because of our amazing Pediatrician, we were able to get her in to see a pulmonologist at DuPont on Friday of this week. Hopefully, we can "shut this door"! We were hoping to get a week off from any doctor appointments, but are happy that we got in so soon to see the pulmonologist. Despite our frustrations, we are continuing to do all that we can to treat Lucy's symptoms. The consensus from our Christmas guests was that she looked so much better than she did in October/November. Drew and I agree, but at the same time we are still so worried.

Tuesday, December 23, 2008

Reiminded

This morning I am reminded more than ever to take the time and really enjoy the holidays, you never know what can happen! A family that we met on one of our hospital stays has a very sick child who is battling so much this season, as their son has once again been admitted to the hospital. Please say a pray or send some positive thoughts to this family as they need, more than anyone I know this season, to have a "Merry" Christmas.

We are off to CHOP today as we have another appointment with Lucy's metabolic doctor. We are learning, but are still hopeful, not to put too much stock in one appointment. She will have labs drawn today. Keep us in your thoughts and prayers as labs are never easy for Lucy.

More than ever, we are excited to have family coming for the holidays! I think we all strongly feel the need to be together this season. I am looking forward to making new memories and laughing about the old! If I don't update before Christmas, know that we are busy with all that comes with the season, but are so grateful to have everyone/thing that is keeping us so busy!

Sunday, December 21, 2008

A "Sophieism"

The other morning when I was working on the computer Sophie was playing next to me on the floor dressing her Barbies. She was busy with this activity when she came out with this one...

Sophie: "Mommy, mommy, mommy,mommy..."

Me: "Yes Sophie...."

Sophie: "Mommy do you know what they make dresses with?"

Me: "What?"

Sophie: "Wands!

Me: "Wands?"

Sophie: "You know, magic wands!"

Friday, December 19, 2008

TGIF

Yeah, we made it to Friday! This week more, than any other week recently, has been the most exhausting week for us a parents. I'd like to say that I have been busy helping the elfs in the North Pole, or cleaning my house in anticipation of company coming, or even going out to lunch with girlfriends to celebrate the season, sadly I have done none of the above this week. My week started off with Lucy's nine month peds. appointment on Monday. All went as expected, she is again battling another cold so we are monitoring her closely. When I returned home from her appointment on Monday evening Jack stated to us that his ear was "really hurting!" He too has been battling a cold for sometime. So back to the pediatrician on Tuesday morning. After looking in his ears and listening to his chest, she concluded that he has an ear infection and upper respiratory infection. She asked me if I noticed that he was wheezing, sadly I did not! I have been dealing with, you know, metabolic issues. The common cold seemed manageable. I will be more attentive next time. He is doing well now that he has antibiotics and a neubulizer. While I was there I had her listen to Sophie's chest as she too has a "yucky" cough. After listening to her chest for a while our pediatrician took off her stethoscope and said that it was hard to hear Sophie's breathing because her stomach was making so much noise. For those of you who know our Sophie, you know that she is always hungry! We call her our Pooh Bear because not only is she shaped like him, she always has a "rummbly in her tummbly". She concluded that Sophie is just dealing with the residuals of a cold and needed some lunch. Wednesday is a blurr, I know that I crashed on Drew right after I put Lucy to bed. Thursday was the girls ballet recital. Watching them dance to music from the Nutcracker was a present all its own! For me there is nothing sweeter than watching my girls move as gracefully as they possible can across the dance floor. It is one of life's sweetest pleasures! After the recital we were off to Jack's school to be his show and tell. He was special person of the week, and boy did I really screw this up for him as I didn't even know he had this honor until Tuesday morning. I hope that us coming made up for forgetting to bring in a show and tell on Monday. Now it is Friday, and I have an entire weeks worth of laundry to fold, menus to plan, Christmas cards to address that I had done in October just so I wouldn't have to do them the week of Christmas, presents to shop for and wrap, and oh yeah a follow up appointment at the peds. office this afternoon for Jack. I am looking forward to this evening where I can sit with my kids and my husband and watch a holiday movie!

Thursday, December 18, 2008

The Plan

Yesterday, I received a call from the metabolism group at CHOP in regards to a meeting that they had about Lucy. Once a week the metabolism group has a meeting with all specialists who are involved in diagnosing, testing, and treating metabolic disorders. Lucy was on their agenda. We apparently need to "feel good" that they discussed Lucy's situation, because now we have so many more metabolic experts thinking about what needs to be done for her. On the one hand we do feel good about this and on the other hand not so good. It is concerning that even the experts are unsure of what to do next. We learned that there are several researchers at CHOP who are doing a research study on SCHADD, trying to isolate the gene for SCHADD. Apparently, there is no lab in our country that has this capability. There is a lab in the UK that has this capability, but we need to apply for special permission to have her blood tested in another country. This is not easy because of some law in the USA that states that basically the UK lab needs to agree to test Lucy's blood for research purposes, aka for free. We understand, now more than ever, that confirming this diagnosis needs to be done. If it is not SCHADD than we could be missing something by assuming that it is, and this something else could affect her for the rest of her life in ways we don't know yet. Whenever Drew and I weigh the pros and cons of doing another test or procedure, the former sentence rings loudly in our ears! Next Tuesday we will return to CHOP for another appointment with the metabolic doctors. We will have labs drawn for the above mentioned research study as well as for several other tests that might help point us in the right direction. Everyone involved in her care is being cautious about the amount of blood taken from Lucy as she is so very small. We are waiting for her to grow some more before we can have any more procedures done. This is the plan for now, we'll keep you posted.

Wednesday, December 17, 2008

What are we waiting for?

This week we are in the hurry up and wait mode. We are waiting to hear from Lucy's metabolic doctor on what the next steps will be. The last few weeks, including this week have been filled with doctor appointment after doctor appointment. In fact, I don't think that we have had a week since the the middle of October where we haven't had a doctor appointment or two, or three, or four... We have seen all the specialists that we need to see at least once now. We added hematology to the list last week as some of Lucy's labs are showing abnormal results with her red blood cells. We are not exactly sure if it is something we need to be concerned about, we are waiting to hear back from either the endocrinologist or hematologist on these. Lab results from the last few weeks are confirming what we have know for sometime, Lucy's liver function tests are coming back abnormal as well as several others. The liver is one of the organs that is often affected when a person has a metabolic disorder. One of the symptoms of SCHADD is hypoglycemia, in last weeks labs Lucy had an abnormally low non fasting blood sugar. We are now testing her blood sugar randomly to see if this is something that is occurring for her on a regular basis. Drew and I keep reminding ourselves that we are doing everything possible for Lucy right now. There is really nothing that we would be doing differently if we had a confirmed SCHADD diagnosis. Still, we wait...

Sunday, December 14, 2008

Just Jack


So when I started our blog I titled it All The Marletts because my intention was to blog about our family and all that is going on in our world. Well a lot of what's been going on in our world has been Lucy's medical situation, but that is just a part of our life. We have three other kids who medically are not as concerning, but are just as important in our world! Jack has on MANY occasions pointed out to me that our blog is not really about all of the Marletts, as he has not heard me write much about him! So this blog post is dedicated to just Jack!

On Thursday night after a very long day, the kids and I were driving home in the pouring rain at 7:00PM after music class. Car time is a great way for me to hear about what has been going on in their worlds as I try my best to just listen to them. I love to listen to the back and forth conversations between all of them, sometimes what they say is so funny I often have the urge to pick up the phone and call Drew right away to tell him. But I know that will stop their conversation, and two talking while driving is not safe, right uncle Dan! Well on this night Jack said something that was so informative yet hilarious that I thought I would share it with you.

The conversation went something like this:


Megan: "Mommy I dropped my glasses lens on the floor and I can't reach it!"


Me: "Oh Megan, be careful with your glasses, they are delicate! When we get home you can pick up the lens off the floor, but be careful not to step on it or drop it! The lenses are what cost so much when you buy glasses.


Jack: "Oh yeah Megan, be careful! You know why your lenses cost so much?


Megan: No response, just an annoyed look aimed Jack's way.


Jack: "Megan, glasses lenses cost so much because they are a service to make glasses and services cost people extra money because they have to hire someone to make the lens!"


Me: "Jack what are you talking about? Where did you hear about that?"


Megan: "Yeah Jack, what are you talking about?"


Sophie: "What are you taaalkiiinnggg aboooouuuttt Jaaaack?


Jack: "Don't you know Mom, I'm talking about goods and services."


Me: "Oh, where did you hear about goods and services?'


Jack: "In school, we are studying economics in Library!"


Me: "Economics in Library! Won't Obachan (my mom) be impressed!


Jack: "Oh yeah, she knows a lot about economics, she watches the news a lot!"


Jack: "Just ask me anything you need to know, OK Mom , I have library books about it!"


Out of the mouths of babes! Do you think it's too soon for the Wall Street Journal?










Saturday, December 13, 2008

A Nutritionist who eats chocolate!

Yesterday, we had our first appointment with the GI nutritionist at CHOP. I'm just going to come out and say it, we loved her! It was so nice to have someone so normal, a nutritionist who eats chocolate, in the CHOP medical system discuss something so abnormal with us! This nutritionist has a child who also needed supplemental nutrition as a baby, so she has personal experience as well as professional. It has been very difficult going to see so many specialists who are just as baffled as we are, if not more with Lucy's medical situation! It is not easy hearing that what your baby has is so rare that even a facility such as CHOP has seen but a handful of these types a cases ever! Lucy is truly a one in a million! We are learning that this is going to be long road and we need to prepare for the trip. Lucy's underlying issues are still unknown, but we need to continue to treat the symptoms. Basically, we need to help her to grow and gain weight! We discussed Lucy's growth chart and feeding regimen with the nutritionist who also stated that Lucy's growth chart was "pretty ugly and one of the worst she has seen!" When we began entral feeding in November, Drew and I were not very familiar with the process. Now, a month later we have several tricks up our sleeves that seem to be working for Lucy. Our new nutritionist was impressed with our knowledge of breastfeeding and our dedication to proving as much breast milk as possible! We know that Lucy is able to tolerate her feeds better when it is mostly breast milk. We are blessed to have donor milk given to Lucy by a very good friend. Between her milk and mine, Lucy has been receiving 100% of her feeds with breast milk. This is a huge accomplishment when you consider the quantity of food she is given daily! We do, however, need to find a formula that Lucy can tolerate so that we can use it to boost the caloric content of the breast milk. After looking at Lucy's progress over the last month, the nutritionist determined that we need to bump up Lucy's calories per kilogram ratio. She is not growing as fast as she would like her to be growing. At the same time, she could not tell us what her expectations are for Lucy since it is really up to Lucy's body to tell us what she can do. I know that doesn't make much sense considering Lucy's track record, but that is what we were told. Increasing her calories can be done several ways. One is too fortify the breast milk with formula so that it increases the calories per ounce. Two is to increase the rate of her feeds at night so that she is receiving more volume per hour. And three is to bolus her throughout the day so that she receives those extra calories. We are going to try doing this in the order I just listed, mainly because it seems the most logical for us. We know that increasing the rate has proven to give us a very queasy baby. Bolus feeding, adding extra ounces after every feed, is difficult for many reasons. One, it requires that I carry her equipment where ever I go. Two, this option is time consuming and difficult to plug her in throughout the day. Three, add to this the fact that we have three other children who need my attention at all hours of the day, and I think that this option could put me over the top! That being said, we will do what we have to! But for those of you who are saying prayers, please say a pray that option number one works! So we are in the process of making these changes, hopefully we do not have the same explosive diaper issue that we had a few weeks ago. You know I'll keep you posted :).

Thursday, December 11, 2008

What is it?

Today we had our "big" appointment with the CHOP endocrinologist who specializes in metabolic diseases. I would just like to state for the record that his big ego was no where to be found. He was very professional with an appropriate level of compassion for what Lucy, Drew, and I have been through recently. He too was not sent any of Lucy's information prior to our coming, despite our metabolic doctor telling us that she would send him Lucy's file. Fear not, today I was armed with pages and pages of documentation! After explaining why we were sent to him, it did not take long for him to see that Lucy is struggling to grow. He told us that her growth chart was "the worst he has seen!" Yikes, that was not what we wanted hear, despite the fact that we know it is not great. After looking at Lucy's chart and listening to us describe what we have experienced with her, he did not feel that she has an obvious endocrin issue. The word obvious has been used as an adjective a lot recently. We know that what Lucy has is not obvious or it would have been diagnosed by now! He felt that looking at Lucy's hormone levels could rule out all growth hormone issues if results were normal. He agreed that Lucy needs to be seen for further evaluation. This is where things get confusing to us as parents. How much further do we need to go? Lucy has some labs that are showing evidence of a metabolic disease know as short-chain 3 hydroxyacyl-CoA dehydrogenase deficiency(SCHADD). This is an extremely rare disorder in which the body is unable to break down fats for energy. This disorder is classified as an inborn error of metabolism, meaning genetic, in a category of metabolic diseases know as fatty acid oxidation disorders (FODS). Symptoms for these types of disorders include failure to thrive, extreme sleepiness(lethargy), behavior changes, irritable mood, poor appetite, poor feeders, low blood sugar(hypoglycemia), poor muscle tone(hypotonia), seizures, and developmental delays. Unfortunately, there is not one test that can confirm this diagnosis. In order to come to a diagnosis we need to pursue further testing. We were given this huge piece of the puzzle about a month ago when Lucy was admitted for complications due to fasting. Fasting is detrimental to people with FODS because it can result in metabolic crisis. This may be what Lucy experienced when she was admitted on multiple occasions to the hospital. Symptoms for this disease vary from person to person as it is an autosomal recessive disease, which means both Drew and I are carriers of the gene for SCHADD, that affects the mitochondria. Mitochondria are responsible for creating a majority of the energy needed for the body to sustain life and support growth. Each persons DNA is different and the mitochondria in every person react differently as a result of your individual DNA. Mitochondria are responsible for creating a majority of the energy needed for the body to sustain life and support growth. I need to warn you that any information that is available about this disease is very minimal as this is so rare! We have been told that there is no cure for this disease but with proper medical care and dietary treatments it can be managed. However, Lucy's metabolic doctor is concerned that Lucy's extreme growth issues and cognitive development do not fit the profile of a person with SCHADD. The endocrinologist told us that there is very little published data on this disorder as it has only been discovered in the last ten to twenty years; therefore, it is difficult to say worst and best case scenarios. Lucy could be making strides for new symptoms related to this disease. Leave it to one of our children to have something so rare. OK, so now you know what we know! Drew and I are relieved that we have some direction, at the same time we can't be sure that this is the right direction! Oh, if you could only hear my sigh... We are continuing to follow up with many of Lucy's specialists to treat her symptoms and rule out any further diagnosis. I am emotionally drained tonight writing this summary as it has been a roller coaster of a month, fall, year... I'm sure many of you will have questions, I know we do and we have been researching this for a while. E-mail us with you thoughts and questions as it may help us. Thank you for all your thoughts and prayers as we continue on with life!

Monday, December 8, 2008

A long overdue update


Sorry that it has been over a week since I last posted anything, we have been a little busy here you know with Christmas coming and all. Last week, my mom came to help us "catch up" on everything from laundry to work hours for Drew. Although she was not able to help us catch up on sleep, she made our waking hours easier on our tired bodies. I commented before in a previous post on how a baby just wants their mom when they are not feeling well, I have felt that want recently with our current situation. There was something about having my mom here that made me feel more "normal". I'm not sure who she helped the most the kids, me, or Drew! Thanks Mom, we really appreciate you and all that you have done for us!
Last Friday, we had an appointment with the GI specialist and opthalmologist at CHOP. I'll start by explaining her opthalmology appointment. It was the best appointment that we have had with any specialist thus far, mainly because everything looked normal. Normal is not a word that is often used to describe Lucy. Basically, her eyes looked great and he did not see any abnormalities with her optic nerve or her retinas, which would indicate a problem with her neurological development. She has a mild esotropia, cross eye, which he attributed to the distance between her eyes and should correct when she grows. As for her GI appointment lets just say CHOP has a reputation for its giant ego, and we met their giant ego in GI. Unfortunately for us and for the doctor, Lucy's medical records were not sent to him so Drew and I basically began explaining all about Lucy's condition from day one to the present. This is not an easy thing to do despite her very young age. He interjected at times with comments about how this is not a GI issue and then concluded with how we need to see their GI nutritionist and follow up with him in a month. He ordered more labs for Lucy including another metabolic panel, we believe that this makes for the fifth metabolic panel done on Lucy. He order some other labs which he wanted to compare with some of her other labs done prior to the start of enteral feeding. We are following our metabolic doctor's orders to see all of these specialists, but at the same time we feel that we are unfamiliar with the very large medical system at CHOP and wish that there could be an easier way for all of Lucy's specialists to communicate with one another. I am currently in the process of organizing all of Lucy's medical records so that we can be even more proactive with her medical care. We are blessed with the medical resources that we have available to us, but at times we feel frustrated with the enormity of our situation. This week we have several appointments scheduled. On Thursday, Lucy will see the metabolic endocrinologist, this appointment is very important to us as we are waiting to get more information on Lucy's abnormal metabolic labs from this doctor. We are hoping that he will be able to give us some answers to Lucy's growth issues as well as other symptoms. Her metabolic doctor is anxious for this doctor's opinion as well. We again are putting all of our proverbial eggs in one basket. On Friday, we have an appointment with the CHOP GI nutritionist. They are "squeezing" us in because their next available appointment was not until January 23rd. We are hoping to get a second opinion in regards to Lucy's NG tube feedings. Hopefully this appointment will be easier than our first nutrition appointment as we are more knowledgeable now with the process of tube feeding, the learning curve was steep! Lastly, Lucy has her nine month well check next Monday. In spite of all her medical issues she of course is experiencing all of the typical baby issues that a baby of her age should be experiencing teething etc...
Lucy has been making great strides in her physical development since the introduction of enteral feeding. Overall, her energy level has increased. We have noticed that she is a much happier baby when she is awake. Before supplemental nutrition Lucy was an excessively sleepy baby. We had a very difficult time keeping her awake for longer than an hour and a half. She was moody and really only wanted to be held by Mommy and sometimes Daddy. She is still a sleepy baby, but when she is awake she has more energy than she did before and is happy to play and interact with others. This is something that we have been waiting to see all her life. She is doing what most babies do when they are eight months old! She is beginning to babble and say da da. Why do they always say da da first? You would think that after giving birth, waking every night since even before the day she was born, changing God only knows how many more diapers than da da, and spending more than 90% of her life with ma ma, she could at least give me the honor of saying ma ma first! Non the less, it's cute how she says da da for everything even for ma ma. Lucy continues to surprise us everyday! On Thursday, she learned to pull herself up to standing in her crib. She was so proud of herself! Since discovering her new ability she has been practicing a lot! Recently, when you go to lay her down she stands up, only problem she does not know how to get down by herself. This is adding a new step to her bedtime routine, stand up and cry until mommy comes to put me back down again. We repeat this several times until she is too tired to do it again. I am hoping that standing will loose its novelty soon, but I too am proud of your accomplishments Lucy. Keep going girl!

Friday, November 28, 2008

All in a Night

It's been over two weeks since we were introduced to Lucy's new feeding system , I thought I would give an update on how things are going. The calculations for figuring out how much to put in the IV bag are getting easier now that we have learned what the best rate is for Lucy to receive her feeds. We have learned that the "Joey"pump has a 10% error in its run time, that explains her discomfort and vomiting last week when we were ramping up to the maximum rate. It's never good when you go to pick your baby up and she looks as though she is going to throw up all over you. So sorry Lucy that it took Mommy and Daddy a few days to figure out the system, we now know that anything above 45ml/hr is too much for her! As long as I am on the subject of bodily fluids, we are dealing with the exact opposite issue Lucy had before, diarrhea. For a baby who only went two to three times a month to now three to four times a day it has been a shock, not only to her but to us as well. Lucy is waking in the night with blow out diapers, the kind where you need to wash the baby, all her clothes, and the bedding not just once a night but several times in the night! Oh, I miss sleeping! When I spoke with the nutritionist and her metabolic doctor about this they were hesitant to switch Lucy's formula because they really like to give it several weeks to see if things don't improve. As her parents, we feel that this is related to her formula, as she is having these diapers only when the tube is running and not during the day when she is just nursing. Our pediatrician feels as though Lucy may be having malabsorption issues, perhaps it's the rate at which the food is going into her. What ever the issue, I know that she does better with just breast milk, so I am trying my best to build up my supply so that I can put more in her tube at night. This issue has created quite a backup in our laundry room! I would just like to say how thankful I am for Oxi Clean, that stuff works wonders! We have tried bigger diapers but they only make it worse as she has the skinniest legs and they just leave a gap for more fluids to escape. I have joked with Drew saying that I think we should wrap Lucy in plastic wrap after we diaper her, maybe it would contain the mess. For those of you who are new to my sense of humor, we would never really try this; but think it, I can't help it. As for our night time routine, we are getting better. We have a system down now that appears to be working, although it is constantly up for evaluation. Lucy is still waking in the night out of habit or because of a dirty diaper. I am waking every three to four hours to pump so that I can keep up my milk supply for her feedings. She seems to know when I am doing this because she is waking around the same time. I will nurse her back to sleep or change her if need be, then I go back to sleep for a few hours. We are setting the alarm clock for sometime in the middle of the night so that either Drew or I wake to add the formula to her bag when the breast milk runs out. We can not mix the two milks because breast milk can only stay at room temperature for four hours. Lucy's pump has an alarm bell that sounds when there is a problem with the feeds or the food runs out. The other night while setting the pump, I accidentally set it to go off after receiving so many mls of food. As a result the alarm kept going off every hour! We tried to fix the problem all night but with no success. We learned the next night while setting the pump what I had done wrong the night before. With that fixed, we thought that we would get a better night sleep the next night, wrong. For various reasons the tube kept clogging and the alarm kept sounding. On top of that Drew's pager for work kept going off due to low battery! Tonight we had to place another tube as Lucy pulled it out again. This is all in a night at our house!

Thursday, November 27, 2008

Happy Thanksgiving

They're alnost all looking!

If only she could!


Happy Thanksgiving from our house to yours!
P.S. She pulled her tube just before dinner, we think she was making room for more.

Tuesday, November 25, 2008

Giving Thanks


We have so much to be thankful for! We just wanted to say thank you to everyone who has helped our family by praying, wishing us well, watching our children and loving them like your own, organizing a meal schedule, making us meals, calling to lend a helping hand and listening ear, lending me a shoulder to cry on, visiting us in the hospital, flying great distances so that you could be here for all of us, offering to run errands, attempting to make me laugh when I have felt more like crying, and offers of love and support at times when we have needed them the most! We are blessed in so many ways, the spirit of the season is so strong we are overwhelmed by it! We are extremely grateful for everything that has been done for our family!

Monday, November 24, 2008

It's Just Viral

I took Lucy in to see our pediatrician today because she has been running a fever for several days. Being the mother of four I do not panic when the kids get a fever, because kids do get fevers. But with Lucy I have had to adjust my thinking some. Believe it our not this is the first time that Lucy has been sick with a fever. She has a number of other medical issues but fevers are not one of them. In my mind, I was thinking that it was better to be safe than sorry. I didn't want to end up at DuPont this week because I overlooked something as simple as a fever, so I paid the co-pay to hear these words spoken to me by our pediatrician "it's just viral." That was the best thing she could have said to me today, not that I want my baby to be sick but that a virus is something that all kids get and will go away with time. It was a normal pediatricians appointment, you know the kind when you go in and feel like you just waisted her time and yours with something as simple as a virus. I was happy to have such a "normal" appointment today, not one where I left more worried than when I came. Of course we will continue to monitor her and hope that she recovers from this virus soon! I am also happy to report that Lucy is putting on some ounces! Drew has been plotting her growth much the same way he plots his data at work. He showed me her progress from the last few weeks, and she is definitely gaining, the scale is showing this as well! The ladies in our pediatrician's office noticed that Lucy's eyes were different, less sunken into her face. I noticed this several days after starting the tube feedings, but was happy to see that others can tell as well. It is encouraging to see her growing after all the effort and worry that has been given to her growth! Thanks for all your thoughts and prayers, they are making a difference!
Just thought I'd also update you all and let you know that Drew and I were able to catch a very cold breath of fresh air as we took in the peace and serenity of Longwood gardens. All of the Christmas lights were lit for the occasion. What a beautiful place for a party! We were able to get Lucy to sleep by 7:30 and we left the other kids to be put to bed by their grandparents. We received a call at 10:20 saying that Lucy was awake and crying. We got home by 10:45 and I was able to put her back to sleep with a little nursing and comfort. It was so nice to have those few hours! Hope we can do it again sometime soon.

Sunday, November 23, 2008

Kids Say the Darnedest things


Megan said to me recently while looking directly into my eyes, "Mommy, you have maps in your eyes."
"Oh really," I said, "where are the maps going to?"
"Nowhere!"

I think I need a nap!

Saturday, November 22, 2008

Guilt and Hope

I have said this statement a lot recently, "As a mother two feelings prevail, guilt and hope!" I know that all of my fellow mom friends can relate to what I just stated. Tonight Drew and I have the opportunity to go to a party at Longwood Gardens. We love Longwood Gardens and have always wanted to attended a party there. We are blessed with help this weekend. My in-laws came to visit the kids and us too. I know that for many of you, it makes you feel better when you can actually see Lucy and how remarkable she truly is. We know and understand that so well! It just so happens we need a babysitter tonight, what perfect timing! That being said, Lucy has a fever today. Isn't it always the case with kids, whenever you have something planned that is purely just for fun and something you have been looking forward to, they go and get sick on you. Of course in Lucy's situation, any illness could land us back in the hospital so we are very nervous to leave her tonight. I know that my in-laws could handle any situation; however, when your baby is sick she just wants you to be there to comfort her and so comes that feeling of guilt. Oh, I am hoping that she will fall asleep at 7:00PM and stay asleep until at least 10:00pm so that we can get out and enjoy the party for a few hours, oh I'd even take one hour! We just need a night out! So prevails those feelings of guilt and hope!

Wednesday, November 19, 2008

It's Not That Simple


Thank you for all your thoughts and prayers today! We wish that we could tell you that the metabolic doctors have found the reason for all of Lucy's issues, but unfortunately it is not that simple. Some of Lucy's labs are showing signs of a possible metabolic link, although they are hesitant to diagnose it as such. We have learned that whatever Lucy has it is NOT easy to diagnose, if it were we would have found it by now! So now what? Lucy had more lab work done today. As parents we are tormented by the fact that our little one has been poked and punctured so many times! Add to the torment is the knowledge that Lucy is a very difficult baby to draw blood from as well as get any urine samples. Because of her hospitalization last week, she had poor vein access today and it took their IV specialist four attempts before taking her blood from her scalp. They needed me to give them permission to make the fourth attempt today as they are only allowed to try three times before giving up. This decision was perhaps the most difficult for me to make thus far, as she was obviously in pain and we needed these labs today. It was very difficult to watch, comfort, and hold Lucy through this! Our hope in doing all of this is that we are able to find some answers to her medical mystery. It is getting increasingly difficult to say yes to more tests and procedures. We are Lucy's voice in all of this and we can hear her loud and clear, we just need to express her needs to everyone else involved in her care. We are blessed to have the support of so many friends, family, neighbors, our pediatrician, and people whom we don't even know but are praying for our little girl. With all of this support we will get through this, we have to!

Tuesday, November 18, 2008

Perspective


Our lives have changed so much! Since the birth of our first baby, nothing has been the same! We have evolved as individuals, as a couple, as the parents that we have become today, and as a family. It has been an adventure. That being said, we are anxious and terrified of what will be next for Lucy. Drew and I are trying to live in the moment, but those of you with children know that you are always planning ahead! And for those who know me well, know that planning ahead is what my life is all about. Lucy's situation has given us a new perspective on life that we were aware of but never really had to face. We love all of our children and want for them the best life possible, no matter what that life is we want them to have the best of it! We love all of our children, and since Lucy's birth have been reminded even more of how great our love is for each of them. Suddenly, what was important before has become even more important now! Please keep us all in your thoughts and prayers as we continue on this adventure called "life". We are going back to CHOP tomorrow for an appointment with Lucy's metabolic doctors. We were informed last week Tuesday that they need to see us as soon as possible.

The Inevitable

Was anyone taking any bets on how long it would take Lucy to pull out her tube? Well the answer is 5 days! Sunday night Drew and I were trying our best to do our usual "pick up and organize before Monday routine" though you wouldn't know it by looking around. We were walking around doing the motions but not really doing much at all when we decided to leave the mess and go to bed. We too have a very orchestrated way of going to bed. We go to bed usually three hours after Lucy goes to sleep. This allows us some down time from the kids and some time to do all that a person needs to do without three children in toe and one in your arms. But mainly by the time we finish cleaning up, two hours have passed since Lucy fell asleep and it is almost inhumane to go to sleep and wake up an hour later to feed the baby. Sometimes I do just fall asleep after I put her to bed, but then I miss spending time with my husband. In order to keep up my milk supply I switched from nursing Lucy every three hours at night to pumping every three hours at night. This way she is still able to receive the tremendous benefits of breast milk through her GI Joey. Sunday night I finished pumping at 12:40am when I heard her waking. She is waking in the night out of habit and the only way I know how to get her back to sleep peacefully is to nurse her. I mentioned in our previous post that she gags when she nurses when the feeding tube is running, so I paused the tube to allow her to nurse back to sleep comfortably. I was able to lay her back down at 1:00am and I immediately followed. At 2:15 we woke to her screaming. When I picked her up out of crib she was soaking wet from the neck down, but her legs were dry. Because of the high volume of liquid that is being pumped into her she has been wetting through her diapers. Lucy has always disliked a wet diaper, who can blame her, so I went to change her. Keep in mind that she has four layers of warmth to take off in order to access the diaper! This is when I noticed that her entire crib sheet was wet and I kept feeling something dripping on my arm. "Oh sh**, she pulled her tube!" I yelled, and Drew came running in. This was the moment that I think was inevitable, we both broke down and cried! We are so stressed and tired that the thought of having to place a new tube was just too much for either of us to handle! After weighing the guilt, the worry, the fatigue, and the stress we decided to wait until the morning when we were more rested to place a new tube. We went back to bed and set the alarm for three hours later so that Lucy would not miss a feeding. Remember I told you that the the GI doctors were hoping that I would get more sleep now that she has a tube, bull **** (feel free to fill in any profanity you feel is appropriate)! I know that we will have to get used to this new routine, but for now it is overwhelming all of the time! We have never been in a situation like the one that we are facing right now. Knowing that there is something wrong with your child and you can't make it go away!

In the morning, we were able to place a new tube without to much trouble. I tried my best to make it as quick and painless as possible both for Lucy and for Drew and I. For those of you who know my husband, he is very weak in the knees when it comes to blood and watching someone in pain. As a mother, I have done things I never thought I would be able to handle. It's the "mama gene" that allows us mothers to stand strong at or child's side and watch as they are obviously scared and in pain. For this I am grateful to be the mother, I couldn't imagine not being there!

Sunday, November 16, 2008

Bedtime

Every parent has a been time routine. When you have four children, your bedtime routine is as rehearsed as a major orchestral production. Drew and I each have our individual roles at night and we do them in sync as we are working towards the goal of getting everybody sound to sleep. Things are different now! As a breast feeding mom I have been blessed with the ability to put a baby to sleep while nursing. It is such a peaceful way to end the day. It is not easy for us to do this now. Lucy now has to be hooked up to a feeding machine. The pump for her machine is called a "Joey" so we have nick named her feeding tube GI(Gastrointestinal) Joey. We need to begin feeding at 7:00pm so that it can run continuously for twelve hours. I have noticed that when Lucy is nursing and GI Joey is running, she is gaging from the feedings. She is used to nursing before bed so we are going to see if we can make some adjustments to the continuous feeds, perhaps pause them so that she can nurse to sleep and then turn Joey back on. They were strict about turning off the machine while breast feeding when we were in the hospital, but not sure why? So we'll add that question to our list. We also need to weigh Lucy before and after every feed so that we can get an accurate measure of how much breast milk she has consumed. I can no longer nurse her to sleep then lay her down in her crib. She needs to be weighed after her feed and hooked up to Joey. To begin tube feeding, we have to go through quite a procedure. First, calculate the amount of food needed for her night feed, currently around eighteen ounces. This calculation is still changing as we are slowly increasing the flow rate on her feeds. After this we add the food to her IV bag. We are using a combination of breast milk and formula for her feeds, the formula can stay at room temperature for twelve hours but the breast milk can only stay at room temperature for four hours, so we are beginning with breast milk and then adding the formula sometime in the middle of the night. Last night I heard a very silent "oh sh**" on the baby monitor. When Drew was adding the formula, he didn't remember that there is a cap on the top of her bag as he began pouring. Good thing it was the formula and not the breast milk as every ounce of breast milk is worth its weight in gold! After getting the food ready and Joey primed, we need to check GI Joey for placement. We first flush the tube with 5ml of warm water, then we listen with a stethoscope on her belly as we push air through the tube you should her a whoosh of air in the stomach, then we pull back on the syringe and check for contents of her stomach, and as an added measure of protection you can check the pH of the contents. Checking for placement is so important, as you want to be sure the tube is in the stomach and not the lungs. Now we are able to begin her feed. We need to attach GI Joey with tape to her back so as to prevent her from getting tangled in the tube. I thought I was worried about dangers in the crib before, now I have ten feet of tubing to worry about. This is the exact opposite of the peaceful way I am used to putting her to bed. I have been feeding Lucy around the clock every three to four hours since about three months of age. The GI doctors thought that a plus to the night feeds would be that I would get more sleep. I have found this to be the exact opposite, I am waking every hour just to check on her. Hopefully, my fears will calm as time goes on. The learning curve is steep, and believe me we can only get better at this new routine. This bedtime procedure is for just one of our children, we sill have three others who need their teeth brushed, hair dried, stories read, and to be tucked into bed. We have noticed an overall mood change in Lucy, she appears to be less moody and has given us more smiles this weekend than we have seen in a while! I feel like we are "playing doctor" as everyone here wants to help with the process. Fischer price makes a decent stethoscope, you can really hear with it!

Saturday, November 15, 2008

Home Sweet Home

Yesterday I started a crusade to get us home! When you walk around the unit you see and hear about so many sick children, you can't help but think how much worse things could be. There are so many illnesses this time of year, I knew that it was better for us to get Lucy home than to stay at the hospital. Lucy was acting more like herself in the morning, after sleeping better, not great but better, than the nights before. That being said, we needed to convince her doctors that we were capable of monitoring Lucy's nutritional needs at home, as well as learning how to place her NG tube, and checking for proper placement. We are still ramping up her calories slowly but the fear of re feeding syndrome has diminished some after monitoring Lucy's progress these last few days. She appears to be tolerating the feeds. The other big hurdle we had to face was getting all of the necessary medical equipment and training needed for Lucy to come home. A hospital social worker was assigned to us to help assist in this process. I had no idea how complicated this would be. Long story short, we were able to get everything Lucy needed from the feeding pump, to the correct tapes for her face, to our training on how to place the tube. We hit a bump in the road when it came to the scale that we need for her at home. As you can imagine this is a critical piece of equipment in our lives. She needs to be weighted before and after every feed to determine how much she has eaten. Knowing this is necessary so that we can calculate her nutritional needs and determine how many additional calories she requires via tube feeding. Our case worker is working on getting this for us through our insurance company. Because of our unique situation, you can only imagine our insurance nightmares. So far we have been able to appeal any denials, but if they deny the scale that is another$1500.00 out of our pocket. Not that we wouldn't pay for what we need, but if we can get insurance to cover this that would be great! We were able to find a scale through a really cool birth center and they were willing to rent it to us on a monthly basis, another blessing in our life, until we find out whether or not we can get this covered through insurance. Yeah, this was at 3:30pm and they closed at 4:00pm. The owner of the center agreed to stay open for us so that Drew could drive the 26 miles there in Friday afternoon traffic so that we could get the scale and then be discharged!
We left the hospital at 6:15pm and surprised the kids when we picked them up at our friends house at 7:00! Our home coming was better than any present we have ever given them! Our lives have changed so much in the last few days, we are now going to have to establish a "new normal". I know that we will feel better when we can absorb the newest information and establish new routines, this will take some time. Your thoughts, prayers, well wishes, support, and understanding has been so important to us, I really can't write in words what my heart feels. We are so happy to be home, even though it is pouring rain!

Thursday, November 13, 2008

A Moody Day

Today was a rainy day which didn't help my mood. I always think of my dad when I describe the weather and how it affects my mood, he is the same way. Now that being said, he lives in Wisconsin where it is winter more than 1/2 of the year, now you can better imagine his moods. I guess I inherited this from you Dad, I love you though.
Lucy is sleeping! She is so behind on sleep! For those who don't know, she is an excessively sleepy baby and sleeps on average 17 hours a day: two long naps, a cat nap, and 12-13 hours at night, but not with out waking every three to four hours to feed. This appears to be another symptom related to what is going on with her little body. She has barely slept a total of two hours all day. My hope is that tonight she will catch up a bit as we are no longer on the D10 IV and her vitals are not as "vital" to take any more. She is also done having her glucose levels checked every four hours. It is difficult to sleep through your heal getting pricked. We are quickly becoming educated on the NG tube feeds. After much debate, Lucy will be receiving continuous feeds throughout the night. According to calculations done by her nutritionist and doctors she is going to require a large amount of calories to "catch up", 135cal/kg. We are told that this is necessary for Lucy to thrive. That being said, it is not possible to introduce such a high calorie load at once. They are concerned that if we put this high amount of calories into Lucy all at once she may experience what is known as re feeding syndrome. This is where the body's delicate balance of electrolytes and such go through shock from receiving too many calories at once when you are not used to having so many. It can be fatal if not detected early. In order to know whether or not Lucy is experiencing this, they need to do blood work daily. So that being said, we are introducing Lucy to the tube feedings slowly, and incremental increasing the calories until we get up to the desired amount. This is taking time, and again we wait.
I have to say that writing this blog has been therapy for me, as Drew and I are struggling with the reality of our situation. Your support, prayers, thoughts, well wishes, and phone calls are what we look forward to when we send these messages. For that we thank you, it matters and you are helping! It helps especially on rainy days like today where I am missing our other children so much it hurts! Thank you Jill for the visit tonight, it meant a lot. Thanks also to our friends the Lanahans and the Puffenbergers for taking care of and loving our kids like your own.
My sister quickly decided to made the long journey up from Florida yesterday so that she could help out with the kids. For the kids, this has made this hospitalization more bearable. Thanks EB, we love you! She brought the kids over to the hospital tonight so that we could all have dinner together as a family, she even brought cake. Cake makes even days like today a little "sweeter". It was so nice to eat together as a family! I loved hearing about school and dance class, and talking about the little things that matter to them so much, and hearing Sophie's voice. Her slow, deep, methodical way of speaking always makes me smile, even when I hear "potty talk" come out of her mouth. I'll post a video soon so that you can all hear what I am describing.
Here's hoping for a little sunshine tomorrow outdoors and in!

Wednesday, November 12, 2008

Summary of Our Day


Has anyone else noticed a reoccurring theme in our lives, it's called hurry up and wait! That should be the title of this post. It has been a very trying day! Last night Lucy did well after receiving a 10% dextrose solution of IV fluids. This is a higher concentration than normally given. What I thought would be an overnight stay has turned into a several night stay. We learned yesterday that Lucy has difficultly fasting for long periods of time. She experiences episodes of hypotonia, generalized weakness, becomes more distant, and hypoglycemic. Lucy is not quite "back to baseline"but that is because she is extremely exhausted! As I posted earlier, we learned suddenly this morning after much confusion that Lucy would be getting her NG tube today. I was happy to hear that we were moving on this and at the same time was caught totally off guard! Yesterday we were talking about doing this on Dec. 8th during the time of her scheduled endoscopy/sigmoidoscopy these procedures have currently been placed on hold as well as the gastric emptying scan. Lucy is not "medically stable" to be receiving these procedures at this time. The information from the UGI was enough to convince the GI doctor that Lucy's anatomy appears to be fine and that placing the tube should be done today. After lengthy conversations about how to accurately quantify the amount of breast milk Lucy receives in a feed, and what Lucy's total amount of calories needs to be in the day, the GI doctor, nutritionist and Drew and I came to a conclusion on how to feed Lucy with the tube. I will not go into detail on that as it will only confuse me more tonight. So that took all morning, in the afternoon the tube was placed at 3:00, and we just started feeding her at 10:00 tonight! Now we wait and watch. She is sleeping now and aside from coughing every now and then she appears to be doing well. She will be monitored throughout the night.

Update

We have been given orders to place Lucy's NG tube today. This sudden change in plans has my head spinning! This means that we will be here another night as we are going to be trained on how to place the tube, how to tube feed Lucy, and observe how well Lucy tolerates the feeds. I was really hoping that we would be able to go home sometime later today as we are functioning on little to no sleep. I know that this is needed, I just....

Tuesday, November 11, 2008

Admitted

I'm not sure where to even begin this post...
Lucy was admitted to DuPont tonight after a very long day of appointments and tests. She was having symptoms similar to what we had experienced with her before in September only not as severe. She was admitted with the hopes of "getting her back to baseline." It appears that Lucy is having difficulties with fasting and fatigue. Labs have been done and IV's are running. They are going to monitor her throughout the night and in the morning her GI doctor and pediatrician will see her. I'll update more later.

Saturday, November 8, 2008

Saturday

We woke up this morning to the rain falling. Sometimes you just need a rainy morning to slow you down. Today was the first day in a long time that we spent the entire day at home. Well, I should say that most of us spent the entire day at home. Megan went to her friend Lia's sixth birthday party by herself. That was a first for us, letting her go to a birthday party by herself. I should mention that Lia is the daughter of one of our dearest friends and the kids play together a lot! So, it was easy to let her go today. Jack played with his best buddy Paul, Lia's older brother, all afternoon which made his day! Paul and Jack have been best friends since we moved to Delaware. Paul said to Jack once,"Jack, you and I are like peas and carrots." They are always so happy when they are together! Sophie hung out with the boys for a while and then took a great afternoon nap along with Lucy. Lucy needed a full day at home just to catch up on some much needed nap time. Afternoons like today are what we call a gift. We actually had some time to catch up on our household responsibilities. After a week like we had you can only imagine how far behind we got on everything from the mail to the laundry. We even had time to cook a nice dinner, not something out of the freezer from Costco. Ahh...don't you just love weekends!

Friday, November 7, 2008

G.I.



Thank you to all who have commented on our new blog. You can subscribe to our blog so that you will automatically receive e-mail updates when we write a new post. You can also leave comments on each post, not sure if you need to register your e-mail address first. If you feel more comfortable, you can continue to e-mail us at our AOL address. Either way we love to hear from you! I don't think that we could have started this at a better time. It has been an absolutely exhausting week! Today we had our fourth doctors appointment of the week, gastroenterology. It proved to be extremely informative. We learned today that they are going to look more closely at Lucy's anatomy. They are interested in examining her upper GI area to see if she has any abnormalities in her anatomy, as well as looking at how Lucy's body swallows, and how her stomach empties. She will have an upper GI(UGI) procedure on Tuesday, November 11th and a gastric emptying scan possibly on Friday of the same week. Both procedures are not possible to do on the same day because the UGI requires barium, and she can not have any traces of barium in her stomach for the gastric emptying scan. These procedures are day procedures. Both tests require Lucy to fast for four hours prior to the test. Does anyone else see the irony in that? The UGI takes about an hour if she cooperates, but the gastric emptying scan can take up to four hours. In addition to those two procedures Lucy will also need an UGI endoscopy and a sigmoidoscopy. Both of these procedures involve using an endoscope to look at the inside of Lucy's organs. These two procedures require anaesthesia and will be preformed at the same time. We will know more about when she will have the later two procedures after we get the results back from the former two procedures. While Lucy is under anaesthesia they feel that this will be the opportune time to place the nasal gastric (NG) tube into her. She will hopefully feel little to no discomfort. They will be able to place the tube and secure it firmly to her face with tape. Their hope is that she will not notice the tube right away, not sure that's realistic but we'll see. The later procedures will require a stay at the hospital. At this time they will train Drew and I on how to tube feed Lucy as well as how to place the tube should she pull it out. All of this is overwhelming to us so I'm sure it is to you as well! We feel some relief in knowing that we are doing more than just waiting, but wish we could make this easier on Lucy. We have come to the conclusion that these procedures are necessary and will hopefully provide us with some much needed information. Please keep us in your thoughts and prayers as we are preparing for another long week of doctor's appointments. Keep Jack, Megan, and Sophie in your thoughts and prayers as well as they are feeling the stress of the situation. Jack asked us today when we picked them up from our friends house, "Did they figure it out yet Mom?"

Thursday, November 6, 2008

Appointments







Here’s anonther update on our little Lucy…

On Tuesday, November 4th, Election Day, we took Lucy see the metabolic specialist at Children’s Hospital of Philadelphia (CHOP). Drew and I were really hoping that we would get some answers to some of Lucy’s health problems. As many of you know Lucy was diagnosed with failure to thrive (FTT) at around ten weeks of age. She has essentially not gained any weight since she was eight weeks old. Her weight fluctuates between ten and eleven pounds. It all depends on when she last ate or how long it has been since her last bowel movement. The diagnosis of FTT is not a disease in itself, but rather a symptom of a much bigger problem. Because Lucy has so successfully demonstrated the ability to not grow, she has now been given the title of severe failure to thrive. As parents, it is such a horrible way to hear your child described, but even worse when you add the word severe in front of it. Lucy has numerous other symptoms that are concerning to us, as well as her doctors. When we spoke with the specialists on Tuesday they seemed very concerned about Lucy’s growth patterns, feeding problems, low tone, irregular bowel movements, seizure like episodes, and some of her lab work. However, they did not feel that Lucy has an obvious metabolic disease. They gave us several reasons why they felt it was not metabolic. Lucy’s birth weight, 8lbs. 10oz., automatically disqualifies her for many metabolic diseases. Lucy’s cognitive and physical development does not fit the profile of a child with a metabolic disease. She is slightly delayed in her physical development; however that can be explained by her FTT diagnosis. Cognitively Lucy is right on track for a baby of her age, almost eight months old. She is progressing in her development and showing no signs of regression. Lastly, Lucy’s head circumference has continued to grow at a normal rate. Because of this, other metabolic diseases can be ruled out. Of course we were thrilled to hear that they did not feel she has an obvious metabolic disease, however, we feel that if it is not metabolic than what could it be? They ordered more metabolic lab work that apparently Lucy has not had yet. We can’t believe that there could possibly be labs that Lucy has not already had. Of course it will be several weeks before we get the results back from those labs. Again our patience is coming back to haunt us! So where to next, we are going to start “filling in the holes” a phrase our pediatrician used. The consensus is that Lucy needs to be seen by a G.I. specialist, an endocrinologist, cardiology, ophthalmology, and nutrition, and follow up with neurology, and metabolic. Yikes, did you count all that? All told it comes to seven specialists! Our number one priority is to see the G.I. doctor ASAP. This is where we feel all of your thoughts, prayers, and wishes for luck have come into play. By some miracle of scheduling, we are able to get in with the G.I. doctor at DuPont tomorrow! We have been told in the past that it could take four to six months to get in, and we got in tomorrow! This appointment is so important to us because we need to find out if Lucy’s growth problems are related to her G.I. system. We mentioned before that Lucy is going to need a nasal gastric tube (NG tube) put in so that we can add additional calories to her diet. We have been waiting to do this until we got an appointment with G.I. They will be the ones placing the tube. We will then see the nutritionist next Tuesday to discuss what we can do for Lucy nutritionally. Yesterday, Lucy had an appointment with cardiology, and we are happy to report that her heart is healthy. The reason they wanted to look at her heart was because babies with cardiac issues often have feeding difficulties and growth issues similar to Lucy’s, but the main difference is cardiac babies act hungry where as Lucy does not. Lucy also had a follow up appointment on Monday with neurology. They were hoping, as well, that the metabolic team would have some more insight. So that’s four specialists out of seven that we will see or have seen this week. Central scheduling at CHOP is working at arranging several more appointments for us. We will update you when we know more about these.
It has been a roller coaster week for us, full of ups and downs. We are grateful to all who have helped us by praying, thinking, wishing us well, watching the other three children, and just supporting us with your kind words of encouragement. It’s the little things in our life that matter the most and we are so appreciative for them! Please continue to keep us in your thoughts and prayers as we continue on. It has been especially difficult for Lucy, not only has she undergone so many tests and examinations, but she is cognitively aware of the hospital environment and all that goes with it! She may be small and adorable, but watch out she has a large and terrifying cry. We know that what lies ahead is not going to be easy for her.
We hope that our new family blog is a good way of keeping you informed of our current family situations. Our hope is that we will blog about less concerning matters in the future. Bear with us as we are new to the blogging community. We’ll figure this blogging stuff out probably before they figure out what’s going on with Lucy.

All the Marletts
Nicole, Drew, Jack, Megan, Sophie, and Lucy too

Our First Post

So here's our attempt at going global. We thought that it might be a good idea to start a blog about our family and all that is going on in our world as a way of keeping all of those who know and love us informed. We are hoping to use this blog as a way of spreading the word and keeping a journal of our family life.