Boy!
-We are going to have a house full of boys! Richard has 2 son's from his first marriage - Everhett (9) and Jarod (8). Jenny has 1 son from her first marriage - Noah (an angel in Heaven). Together we have Daniel (21 months) and baby #3 (due to arrive September 1).
-The doctor's appointment went well. We saw the OB/GYN first - he said that Jenny was doing wonderful, her blood pressure was great and the baby had a very strong heartbeat. Jenny will be doing a 24 hour urine collection and going in on Tuesday to have blood drawn. The doctors (OB and the high risk OB) want to get a baseline reading on all of Jenny's levels so they will have something to compare to throughout the pregnancy. She will see Dr. Beyer (OB) again on May 6.
-The ultrasound not only revealed that we were having a boy but also showed us that we have a healthy boy. Jenny is currently 18 weeks (almost 19), the baby is measuring 19 weeks (almost 20). This is wonderful news to us as Daniel was always (and still is) behind in growth. We saw the high risk OB after the ultrasound and she said that Jenny looked wonderful and the baby looked wonderful and told Jenny to contine doing things as she has been doing.
-The plan is for Jenny to be followed by the OB/GYN with consults with the high risk OB as needed. When she goes in on the 22nd she will be given the supplies to test for protein at home (she developed pre-eclampsia) in the first 2 pregnancies. She will do the gluecose tolerance test around 24 weeks to check for gestational diabetes and will probably be given a round of steriod shots (just in case). The plan is for her to get a round of steriod shots every 4 weeks starting at 24 weeks and ending at 36 weeks.
-We are 10 weeks away from making it to our first gaol of 29 weeks. Please continue to keep us in your prayers, especially Jenny and the baby.
-We will find out tomorrow at 3 p.m.
-Please pray that Jen's appointment goes well and no matter what the gender that the baby is healthy and growing.
-I thought I would do a quick catch up while I waited on Daniel to wake up from his nap. I know we promised a few blogs about what has been going on and we will get to those.
-We have spent the last 2 weeks recovering from our trip to California and recovering fom sickness. I think we are s-l-o-w-l-y getting back into the routine of life.
-We've been "gone" from the blogging world for a couple of months, no real excuses, just laziness. We (or Mom) will spend the next few days catching all of you up on what has been happening in our lives.
A few highlights to look forward to:
-Daniel's growth and development
-Daniel's first big snow (in March)
-Daniel's first plane ride
-Daniel's first time to Grandpa and Grandma's house
-Daniel meeting his big brothers
-We found out on New Year's day that our family would be growing. We had our first ultrasound today (1/29). The baby is measuring 9 weeks, 3 days and the estimated due date is September 1, 2008. We are excited (and nervous) as we complete our family.
-We kicked off the Christmas season today by attending the Pleasant View Christmas parade, visiting Santa and putting the tree up. Daniel loved the parade and loved Santa.
--My mom called this morning and asked me to help find Mary a new kitten. Mary wanted another little boy. Mary wanted another Henry. I said I would help her as I have a friend who has some kittens. I called my friend and also decided to call our vet so I could have some options when choosing the perfect cat for Mary.
--I talked to a wonderful lady named Denise and she told me about a kitten that she had rescued...Miracle. Miracle weighed .6 pounds when she found him and has been through a lot in his short little life. (He is 11 weeks old.) We packed up the care and headed to Denise's house to meet Miracle. Miracle was perfect. We brought Miracle to our house where he will stay until mom and dad come to visit on Friday.
--We hope that Miracle will make Mary happy.
--Daniel has an appointment scheduled for a repeat sweat chloride test on Tuesday, November 27 at 8 a.m.
--Please pray that this test will give the doctors the answers they need to treat Daniel.
--We spent the morning at Vanderbilt Children's Hospital (VCH). Daniel had 2 scheduled appointments. The first appointment was with a nutritionist to discuss Daniel's diet and what/if anything needs to be changed. The second appointment was a sweat chloride test to check for cystic fibrosis.
--The appointment with the nutritionist went well, a lot of our questions were answered and concerns addressed. Daniel was weighed and measured. Daniel weighed in at 16 pounds, 7 ounces and was roughly 27 inches long. (It is hard to get an accurate measurement on a wiggly 16 month old.) Daniel gained 1 ounce since his last appointment (October 18), his height stayed teh same. The nutritionist was concerned about Daniel's growth (or lack there of) as Daniel has been on a high calorie diet the past 4 weeks. Daniel consumes about 1, 360 calories a day. The average calorie requirement dor a 1 to 3 year old is 1300 (that's on the high end). The nutritionist was very pleased with the variety and well-balanced meals and snacks that Daniel eats. (We are good parents :) ) There is a concern that Daniel is getting the higher end of the recommended calories but is still growing s-l-o-w-l-y. The nutritionist said that many kids, especially preemies born so tiny (Daniel was a 2 pounder.) requires more calories to grow. She recommended that we increase Daniel's calorie intake to 1500 per day. We will do this by cooking food in oils and using butter, mayo and gravies as much as possible. We will also start mixing Duocal in some of Daniel's food. Duocal is an unflavored powder that can be mixed in liquids, puddings, yogurts, etc., 1 tablespoon adds 42 calories. The goal is to use 3 - 4 tablespoons throughout the day. Daniel will also drink Vital Jr., a high calorie milk drink in place of milk. The goal is to have Daniel drink 3 to 4 - 8 oz. cans a day. We will start keeping a detailed food journal (for 3 days) and send it via e-mail the the nutritionist, the nutritionist will break down the calorie, vitamins, etc. to determine if there are any changes that need to be made. Daniel will return to the nutritionist in 4 weeks, the goal weight for our return visit is 17 pounds, 4 ounces.
--The sweat chloride test went much better then we were expecting. We were fearful of what would have to be done to make Daniel sweat. A technique call iontophoresis is used to produce sweat. This technique requires the application of a painless electrical current that allows the penetration of a medication into the skin which maximizes sweat stimulation. The respiratory specialist placed 2 small square type thingys that were attached to a machine thingy to each of Daniel's forearms. These were left on for about 5 minutes, the square thingys and the machine thingy was providing the electrical current. The specialist then placed gauze on each of Daniel's forearms, wrapped each arm in a thick plastic and then wrapped 2 mini heating pads around each arm. We put Daniel's fleeced lined jacket on, zipped it up, put Daniel into his stroller and wrapped Richard's jacket around him. We were told to wait 30 minutes so we headed to the food court and got a cup of coffee and prayed for sweat. We returned to the doctor's office after 30 minutes, Daniel was unwrapped, the sweat-filled gauze removed and placed in a tube and we were finished. We were told to call the doctor around 3 p.m. to get the results.
--We headed home and tried to keep busy until 3 p.m. We called the Pediatrician's office around 3:30 p.m. and were told that a nurse would call us back with the results. We waited....The Pediatrician called around 6:30. I knew when it was the doctor that called and not the nurse that something had to be wrong. The normal sweat chloride level is 10 to 35, a level greater then 60 indicates cystic fibrosis, levels between 35 and 60 are considered abnormal. Daniel's sweat chloride level was 59. This was concerning to the Pediatrician due to other symptoms Daniel has as well. The Pediatrician consulted with the Pulmonologist and GI and they were concerned as well. Daniel is right now "diagnoised" with borderline CF (cystic fibrosis), he will have a repeat sweat test ASAP before the doctors determine a plan of care.
--Please keep Daniel in your prayers. We had prepared ourselves for the worst but we had not prepared ourselves for the unkown.
--Height-----27 and a 1/2 inches
--Daniel is growing!
--We got a little behind on updating and we apologize for that. We have been spending the majority of our time focusing on getting Daniel to eat as much as he can (or will).
--When we last posted we were headed to Vanderbilt Children's Hospital (what a wonderful place). We were hoping that we would be told that we were over-reacting and that the vomiting and diarrhea were common. We were actually told that the vomiting and diarrhea were not common and that had we continued to give Daniel the Peptamen he would have ended up passing blood. The doctor's gave Daniel Vital Jr. while in the ER and he tolerated it well (no vomiting and no diarrhea). We were sent home with a case of Vital and told to replace the Peptamen Junior with the Vital. We were told that if he did not tolerate the Vital that Daniel would be put into the hospital and we would really have to consider tube feeding.
--We called Daniel's GI doctor on Monday per our discharge orders. Dr. Arthur wanted to know how Daniel was reacting to the Vital. We told her (actually her nurse) that Daniel was not vomiting or having diarrhea. We told her he was drinking 3 cans a day. We also told her that Daniel's tummy was becoming bloated after drinking the Vital and he was refusing to eat and acting like his tummy was hurting. This was a concern to the nurse and she told us that she wanted to talk to the doctor and she would call us back. The doctor ordered a KUB (stomach x-ray). We packed up and headed to Vanderbilt for the 2nd time in 2 days. The stomach x-ray was normal, there were no significant signs of bloating.
--Dr. Aruthur contacted us on Wednesday and told us to continue with the Vital. She said that she had diagnoised Daniel with Failure to Thrive (FTT) and she was going to order a gastric emptying scan.
--The plan is to give Daniel Vital Jr. in place of formula and increase his calorie intake as much as possible. We will take him in for frequent weight checks to see if the high-calorie diet is causing him to gain properly. He will see a Nutrionist to help us in creating a hig calorie diet and he will be tested for Cystic Fibrosis. We are praying that Daniel will start showing a steady growth and we can avoid tube feeding. We also pray that the gastric emptying scan and Cystic Fibrosis test both show negative results and Daniel is healthy and just a "slow grower".
--We will keep you updated in the coming weeks as Daniel undergoes the test and we have weight checks. Please pray that Daniel starts growing steadily, that we (dad and mom) don't get discourage and loose our faith in God and that the doctors and specialist treat Daniel in the proper way.
--Daniel woke up with a nasty diahera diaper today. It smelled like rotten milk. Gross!
--We decided to go ahead and give Daniel a can of Peptamen, thinking that the diahera was a "normal" adjustment.
--Daniel drank 8 oz. of Peptamen and ate 4 oz. of cereal with fruit, a 1/2 of a banana and 1/2 of a mini bagel with cream cheese.
--Daniel had another diahera diaper immediately after drinking the Peptamen. It was worse then nasty - clear, slimy and mucousy. We cleaned Daniel up and decided that it might be better to go to the hospital.
--Daniel started his new "diet" today.
Morning Drink
-8 oz. Peptamen Junior
*vomited
Breakfast
-2 oz. oatmeal
-4 oz. applesauce
-½ mini bagel w/cream cheese
Morning Snack
-8 oz. Peptamen Junior
-8 Teddy Grahams
*vomited
Lunch
-3 oz. chicken and carrot ravioli
-4 oz. diced peaches
Afternoon Snack
-8 oz. Peptamen Junior
*vomited and diahera
Supper
-¼ c. roast with gravy
-¼ c. mashed potatoes
-¼ c. cooked apples
Bedtime Drink
-8 oz. Peptamen Junior
*diahera
--Daniel's digestive system doesn't seem to tolerating the Peptamen Junior. We will continue to try the Peptamen tomorrow and give Daniel's tummy a little more time to adjust to the change. We are keeping our fingers crossed that the vomiting and diahera stop.
--Daniel's Pediatrician called this afternoon to discuss his allergy test result.
--Daniel is allergic to soy and milk and has a resistance to eggs, beef and wheat. What does this mean? We need to avoid feeding Daniel soy and milk products and limit eggs, beef and wheat. Daniel is being refered to a Nutrionist so that we can have help in creating a healthy, high calorie menu that is soy and milk free and limiting in eggs, beef and wheat. Daniel's Pediatrician agreed that Peptamen Junior was the best thing for us to try. She was hesitant about even considering a feeding tube. (refer to the previous post "GI Appointment"). Dr. Amis (Pediatrician) also wants to schedule a sweat test to test for Cystic Fibrosis.
--We felt a lot better after talking to Dr. Amis.
--We were not prepared for all the information we recieved at Daniel's GI appointment.
--Dr. Authur is very concerned about Daniel's growth (his current weight is 16 lbs., 10 oz. and his current height is 26 1/2 in.). She said that Daniel should at least be in the 30th percentile on the growth chart. Daniel is in the 3rd percentile. She asked us to consider placing a mickey button and feeding Daniel thru a G tube for 3 to 6 months. We are hesitant to take this step right now. The plan (for now) is to give Daniel Peptamin Junior (a lot like Ensure). The goal is for Daniel to drink 4 - 8 oz. cans a day. He will also continue to eat regular foods and we will try to increase the amount of food he eats. Daniel will be on this "diet" for a month and be weighed. If Daniel shows a gain we will continue with the "diet" until January. If Daniel does not show a gain we will then look into placing a mickey button and tube feeding him for 3-6 months.
--Please pray that Daniel will gain without having to be tube fed.
--We FINALLY recieved the results from Daniel's allergy test. Daniel is allergic to soy, milk, eggs, beef and wheat. The soy and milk allergy is the most significant. Daniel has an appointment with a Pediatric GI tomorrow at 10:45 a.m. and we will be talking with his Peditrician within the next few days to see what the "plan of care" will be.
--We have had a lot of people ask us about Daniel's test results.
--We are still waiting on the "big results" as the doctor put them...dairy, egg, fish and nut allergy. His thyroid is functioning in normal range and he is not allergic to apples or green beans. He will be seeing a GI doctor on Thursday.
--We promise we will update as soon as we know more. We are still waiting (not patiently anymore).
--I hate waiting...especially when it comes to important information concerning my child.
--I called Dr. Amis' office today to check on Daniel's lab results. His thyroid panel was normal. (I didn't realize they had even checked his thyroid.) They had not gotten the results from the allergy panel. So, now I wait...as patiently as I can...
--Daniel's 15 month well-baby check up was Monday.
--Daniel weighed 15 pounds, 15 ounces and was 26 1/2 inches long.
--Dr. Amis (Daniel's peditrician) was very pleased with Daniel's development. She was especially pleased with Daniel's social development. (Daniel was very interactive with Daddy while the doctor was talking to Mommy.)
--The only concern that Dr. Amis has is Daniel's weight gain (or lack there of). Daniel's weight has always been an issue. He has never made it on the growth chart, even with his adjusted age. We have tried several different types of "diets" to get Daniel to gain weight, none of them have really seemed to work. At Daniel's 1 year check up the doctor told us to switch him to whole milk and Pediasure. When we made the switch from formula to milk Daniel started throwing up and having diaherra. The doctor said to stop the whole milk and Pediasure and give him soy formula for a month and then try whole milk again. We did this and the throwing up and diaherra returned. The doctor decided (and we agree) that Daniel should run some test to see if there is a food allergy (or other problems) causing Daniel not to grow properly. The doctor drew some blood to test for food allergies. She is testing for milk, egg, fish and nut allergies to begin with. She is also running a test to see if Daniel has a condition (can't remember the name) that affects the digestive system and food is not "broken down" properly. If Daniel has a food allergy or his digestive system is "messed up" then we will see a Nutrionist and a specialist to create a proper diet for Daniel. If all these test come back negative Daniel will be tested for Cystic Fibrosis. The CFT (Cystic Fibrosis test) will be the last resort as it is the most invasive and the doctor feels like Daniel does not have Cystic Fibrosis.
--We should know the results of the food allergy test on Thursday. Please keep Daniel in your prayers as the doctors work to find out what is causing him to stay so small.
--We attended the 2007 NICU "Incredible Graduate" reunion today.
--Each year MTNA (Mid-Tennessee Neonatology Associates) sponsors this reunion for the "graduates" of the NICUs at Centennial, Southern Hills and Summit Medical Centers. MTNA is a group of wonderful Neonatologist that care for the precious little babies at Centennial, Southern Hills and Summit. Dr. Ismail, Dr. Campbell, Dr. Hassell, Dr. Palmer, Dr. Pearson (I'm leaving one out, I know) are heroes to us.
--Dr. Ismail was at Daniel's delievery and admitted Daniel into the NICU.
--We remember the day we met Dr. Campbell. The day after Daniel was born, she came to my room and talked to us about Daniel and discuss with us "treatments" to expect. Dr. Campbell also was Daniel's "discharging doctor". She spent several hours with us when we "roomed in" and answered all our questions and put our mind at ease about caring for a tiny, fragile baby at home.
--Dr. Palmer was the first doctor to discuss with us the possibility of Daniel going home on 02. He talked with us for a long time and eased our mind and calmed our fears. We discussed the fear we had after loosing Noah to respiratory problems (Asthma).
--Dr. Hassell was the doctor on duty when Daniel was taken off the vent.
--Dr. Pearson took such good care of Daniel as well, we just can't think of a significant even that happened when we were on duty.
--There was one more doctor that cared for Noah but we can't remember her name (sorry) and she was on duty when I (Mommy) got to do "Kangaroo Care" for the first time.
--Going to the reunion brings back so many bittersweet memories. We are forever grateful to the care that MTNA and the nurses at Southern Hills gave to Daniel and our family. (We didn't see any of our nurses yesterday but we do plan on visiting them during the holidays that are fast approaching.)
--Southern Hills is small and the majority of the time Daniel was in the NICU he was the only one there so we didn't have the chance to get to know other parents. However, a lady Marie) that we work with had a grandson that was born at 29 weeks (he was almost 1 at the time Daniel was born) and thru a friend of Jenny's parents we got in touch with Laura. Laura's daughter was born at 29 weeks and was also almost one at the time Daniel was born. We e-mailed Laura and Alisha (Marie's daughter) many times and thanks to their "connection" made it thru Daniel's life in the NICU. And to prove that the world is "small" Laura's daughter and Alishia's son were in the NICU together.
--We got to see Daniel's "preemie buddies" Tatum (Laura's daughter) and Brody (Alishia's son) yesterday.
--When I first sat down to write this entry I wasn't thinking that it would be so long but the memories just started "flowing"....
--Grandpa and Grandma, Pop-pop and Nanny, thank you so much for being wonderful grandparents and loving and caring for Daniel the way you do. You are the best grandparents in the world. We love you!
--Happy Labor Day! We hope you all have had a wonderful, relaxing weekend, free of labor.
--We left Saturday morning for a weekend at Pop-Pop and Nanny’s. The original plans were to have a joint birthday party for Emma and Daniel but the plans fell through. Bummer! We didn’t let a few changes of plans stop us and we enjoyed visiting with Pop-Pop, Nanny and Matthew. (We missed you, Mary and Emma.)
--We went to Corinth, MS (about a 30 minute drive from Savannah) on Saturday. We enjoyed lunch at a Chinese restaurant and shopped at Penney’s and K-Mart.
--Saturday night Mommy and Nanny enjoyed some “girl time”. We took a ride in the convertible and picked up cheese sticks from Pizza Hut and surprised Pam and visited with her.
--Pop-Pop was not feeling well on Sunday so Daddy stayed home with him while Mommy, Nanny and Daniel went to church. We cooked out, rode the 4-wheeler and took naps Sunday afternoon. Mommy, Daniel and Nanny went to church Sunday night and then picked supper up for everyone at Subway.
--We got up this morning, enjoyed yummy pancakes and packed up our stuff and headed home.
--Bananas --Rice --Applesauce --Toast
--We fed Daniel the B.R.A.T diet yesterday (until around 4:30 p.m.).
--Morning Drink - 6 oz. Pedialyte
--Breakfast - 1/4 c. rice cereal mixed w/apple juice, 2 tbsp. bananas
--Snack - 2 oz. Pedialyte
--Lunch - 4 oz. applesauce, 1/4 slice toast
--Snack - 6 oz. Pedialyte
--After Daniel woke up from his nap, he was pretty fussy and nothing we tried seemed to satisfy him. So we made the "parental judgement" that he was probably hungry for real food and decided we would try a couple ounces of soy formula and see how he handled it. (You are never going to know until you try.)
--Daniel drank 3 oz. of soy formula around 4:30 p.m. He did not throw up or have diarrhea. Yea!
--Supper - 1/4 c. spaghetti, 1 tbsp. garden vegetables, 3 bites of diced pears, 3 oz. of soy formula
--Daniel did not throw up or have diarrhea after supper. Another success!
--The success with spy has continued this morning--
--Morning Drink - 6 oz. soy formula
--Breakfast - 4 oz. rice cereal with apples and cinnamon, 1/4 slice toast with butter and jelly
--Daniel is taking a nap right now, we will continue to feed him his "regular diet" using soy formula instead of whole milk and we hope that he continues to tolerate it.
--We are to call the Peditrician today to let her know how he is doing and to discuss any changes that might need to be made.
--We are continuing to battle Daniel's "sick tummy".
--Monday morning we gave him Pediasure after a 24 hour "dairy break". Daniel threw up and had diarrhea after drinking about 3 ounces. We called the doctor and were given a 2 p.m. appointment. After going over everything with the Peditrician and answering a few questions we were given a couple cans of Enfamil ProSobee formula (soy based) to try. The doctor was hesitant to diagnosis him with milk allergy and said that she would prefer to try the soy for a month and then try whole milk again and then test for milk allergy.
--Daniel drank 7 ounces of the "new milk" Monday night and immediately threw up and had diarrhea. We thought maybe his tummy needed time to adjust to the change.
--Tuesday morning Daniel drank 7 more ounces of the soy based formula and he again threw up and had diarrhea. About an hour later he at breakfast (scrambled egg, puffs and pears). He handled all the food fine, no upset tummy. Daniel had another 3 ounces of formula at lunch and he threw up and had diaherra.
--We called the Peditrician and were told to stop all raw milk products for a week. She said we could give yogurt, pudding, cottage cheese, cheese toast, etc. They said to really push oatmeal and yogurt as those are foods known to help heal the tummy and kill bacteria.
--Daniel was hungry when he woke up from his nap and we decided to give him some yogurt because he has had in the past and showed no reaction to it. Daniel ate about an ounce - 2 ounces, arched his back and wiggled around and cried and threw up and had diarrhea.
--We hit the frustration point and called the Pediatrician back. We were told not to give Daniel anything to eat or drink until we heard back from them.
--The Pediatrician called back around 7 p.m. and right now she is puzzled as to what is really going on. There is many things that it could be but his symptoms make a diagnosis complicated. Since he is throwing up the soy formula that rules out a lactose intolerance. It could possibly be an infection that is only being affected by milk products, that is a rare side effect but a possiblity. Daniel could have a milk and soy allergy. There could be some kind of blockage in his GI track but that diagnosis would make more since if he was throwing up everything, not just milk products. Since the doctor is not quit sure what to diagnois him with she thought that we should give his tummy a break for 24 hours and then go from there. So, for the next 24 hours Daniel will be on the B.R.A.T diet - bananas, rice, applesauce and toast with Pedialyte, juice or water to drink. We will call the doctor back on Thursday to discuss the next step, which will probably be to s-l-o-w-l-y introduce the soy based formula.
--We began Daniel's dairy-free diet today.
--We were told to give Daniel Pediasure in place of whole milk. We gave him a cup of Pediasure last night and he threw it up. We decided to give Pediasure another try this morning and Daniel threw up again. We called the Peditrician and she said to give him Pedialyte for the next 24 hours and let him eat whatever non-dairy food he wants. We can add juice after 24 hours of no throwing up and no diarreha. If he tolerates the juice then we are suppose to try Pediasure again Sunday night or Monday morning. If the Pediasure makes him sick again we are to take him into to the Peditrician's office.
--Daniel started pulling up to a standing postion in his crib a couple of weeks ago.
--He will pull up to his knees on any other piece of furniture.
--Last night we were watching a movie and Daniel crawled over to the couch and pulled up to a standing postion. Way to go Daniel! Of course, we did not have the camera near us so we didn't capture this milestone, maybe he will do it again today and we will be ready to capture it.
(I found this on another site and thought I would share it because we can relate to so many of these.)
1.) You use strange initals (C-PAP, CCs, NICU, NG, etc.) when discussing your child's history.
--We experienced this when Daniel swallowed the dime. We were going over Daniel's medical history with the ER doctor and he stopped and said I can tell when I am dealing with a parent of a preemie because of the terms they use.
2.) You actually remember how many CCs make up an ounce.
--30 ccs equals one ounce
3.) You count his/her weight in grams.
--We don't do this but we can tell you that Daniel weighed 907 grams (2 pounds) when he was born.
4.) The skin on your hands is peeling from washing so often.
--We use really good soap and lotion so we do not have this problem.
5.) You hesitate when someone asks his/her age, but you know how much he/she weighs.
--We do hesitate at times but not because we don't know but because we know what kind of questions will follow.
6.) The answer to "How old is your baby?" is 30 minutes long.
--This is very true, once you tell the age you have to go thru all the other questions that follows.
7.) When someone asks his birthday, you reply "which one"?
--I don't know that this has ever happened to us but we have wondered it.
8.) You start to understand some of the things thay say on ER.
--We don't watch ER.
9.) You turn into Kung-Fu Mom when someone tries to touch your baby.
--It depends on who the someone is.
10.) You attempt to measure just how much spit-up he/she just had before you clean it up.
--We use to do this but Daniel doesn't spit up any more.
11.) You know how much he/she weighs before putting him/her on the scale at the doctor's office.
--We have our guesses.
12.) You cry at "Maternity Ward" and get mad at "Baby Story".
--I wouldn't say I get mad but a little jealous.
13.) You see a term newborn and say "Wow! She's so BIG!"
14.) Your baby is months old before he can go to the mall.
--I remember the first time we took Daniel to the mall. He was 5 months old and we kept the canopy on the car seat and the canopy on the stroller up the whole time.
15.) You have ever explained why your baby is on an apnea monitor.
16.) When someone says how tiny your baby is, you argue that he is humge and to demonstrate you whip out pictures of him from the NICU.
17.) You do a health check on people when they come to your house to visit.
--We don't do a health check but we do let people know that if they are sick they won't be allowed in and we won't be visiting until they are well.
18.) You make people wash their hands before going near your child.
--We don't enforce strict hand washing anymore.
19.) You want to scream when someone says that she just wants to have this baby now - at week 29, 32, or 34.
--This makes me mad. I would love to know what it is like to be 34 weeks pregnant.
20.) You are so amazed when someone actually tells you that your baby is big for his age.
--This has never happened to us. Daniel is 14 months old and the size of a 6 month old.
21.) You tried to find a place to buy newborn size diapers in bulk.
22.) You called half your relatives when your baby grew out of their first pair of pajamas.
--I do think we called half our relatives when Daniel outgrew 0-3 month clothes.
23.) You never take your child for granted.
--This is a lesson I learned after loosing Noah.
24.) You worry about RSV season and it is still weeks away.
--Daniel is on the list for Synagis shots.
25.) You know what "RSV" stands for.
--respiratory syncytial virus
26.) You donate his/her tiny clothes to the NICU and marvel that they seem so small, when they were to large at one point in time.
27.) Your son/daughter gets a simple cold and his/her doctor sees her within the hour.
28.) People say "He can't be ___ old..he's too little!".
--This happens to us all the time.
29.) It has taken them 5 months to grow into newborn clothes.
--It took Daniel about 6 months to grow into newborn clothes, he is now 14 months old and wears 3-6 months clothes.
30.) You pick up 2 pounds of ground beef and think that your baby was born at the same weight.
--I have thought this before.
31.) You buy Purell in bulk.
--We are never without hand sanitizer.
32.) You can stare at your baby for hours when he sleeps.
--I think all parents can do this.
--Daniel has an appointment with the opthamologist today at 2 p.m. to check for Strabismus (wondering eye). Daniel's right eye has been turning in. We have seen it, his EI therapist has seen it and his peditrician has seen so now it is time for the opthamologist to see it. We will update you later on Daniel's visit.
--The mystery object that appeared on Daniel's x-ray yesterday was a dime.
-- Daniel was taken into surgery around 1:15 p.m. Dr. Morrow (the surgeon) came into the waiting room around 1:40 p.m. and told us that everything went great and gave us the dime in a cup. He said he was surprised to see that it was a dime because most kids choose to swallow pennies. He also said that kids usually don't swallow coins until they reach the ach of 2. (Daniel's advanced in coin swallowing.)
--We were taken to recovery around 3 p.m. Daniel was so sweet laying there sucking his thumb and rubbing his blankie. The nurses said he was wonderful that he had not cried once.
--Daniel was discharged from recovery and we went up and packed up our belongings and headed home.
--We arrived home around 5 p.m. Daniel drank some milk and was ready to sleep.
--Daniel's recovery period should be brief and without complications. He is on a liquid only diet the rest of the day. He can eat soft foods tomorrow and we add more solids as he tolerates.
We are to take him back to the ER if he can't eat, we see any sign of bleeding, he starts running a fever of 101 or higher or the wheezing (caused from being intebated) does not go away or gets worse.
--Thank you for all your prayers.
--Daniel is mobile (crawling) and has been for about a month. He loves being mobile and being free to roam. He also likes to stop and pick up items off the floor and taste them. We are constantly jumping up and saying, "No, don't eat that.". We feel that we are quick with our response time and are very aware of what he is attempting to eat. We have "child proofed" the house as much as possible and we vacuum twice a day (morning and night) to prevent non-ediable food items from entering our child's mouth. It became apparent last night that we are not as quick and acurate as we think...
--The story actually began on Tuesday night (we think). We were all in the kitchen, Mommy and Daddy working on getting supper on the table and Daniel exploring. Mommy picked Daniel up to put him in his high chair and he coughed, gagged and spit up slimmy junk with what looked like a piece of lettuce. We discussed what had just happened and cleaned up the slimy mess off the floor. Our conclusion was that he had eaten a piece of lettuce that had fallen on the floor and it did not go down "easily". We fed him (attempted to feed him) supper. He would take a few bites and then spit the bites back ok with slimy junk. We decided that maybe his throat was irritated from the previous "incident" and we did not force him to eat. He had no other "issues" the rest of the night. He woke up Wednesday and we went about our day - diaper change, play, snack, nap, lunch, nap, snack, supper - and then our routine stopped. Daniel had spit up slimy stuff and uneaten food at every meal, supper being the worse and spots of blood was in the slimy stuff at supper. Mommy and Daddy guessed that what had happened Tuesday night (lettuce eating) had scratched Daniel's throat or maybe/possibly there was something stuck in his throat. We decided to head to the ER. Before going any farther we must fill you in on where we live and what our choices of medical treatment is...we live in a small town...we have a small ER (more like an emergency walk-in clinic)...we are 45 minutes from Nashville that is home to a lot of good ERs, especially Vanderbilt Children's...we are about 20 minutes from 2 fairly decent ERs in Clarksville (Gateway) and Springfield (Northcrest)...where to go? We haven't had too many ER visits with Daniel (considering his medical history) and the few we have had we have gone to Vanderbilt. We talked about it and decided to go to our small town ER. We had great hope that we were being overly paranoid parents and the doctor was going to look in Daniel's throat, do an x-ray and tell us he had a sore throat. Well, the doctor looked in Daniel's throat, did and x-ray and we were not being overly-paranoid parents. Since we were at a small ER we got to see the x-rays before the doctor and on the film we see a round spot that is the shape of a coin in our child's esphogas (sp?). We knew then it was going to be a LONG night. The ER we were in was not equipped to take care of this type of emergency. Daniel was transported to Vanderbilt via ambulance where we were greeted by a team of doctors that included GIs and surgeons. A repeat (better) x-ray was done and the doctors have guessed what is being seen on flim is a quarter that is stuck behind Daniel's esphogas. The treatment for this is to put the patient to sleep and do a scope to retrive the foreign object. Daniel was admitted to the hospital and the foreign object will be removed later today.
--If you made it through this long story, please keep Daniel in your prayers. This is a minor procedure but as with al procedures there is a risk of complications.
--We recieved the summary from Daniel's early intervention evaluation. The "results" are not what we were really hoping for but we have accepted them and will overcome all the "challenges".
--Vision- 12 - 24 month (he has advanced eye sight)
Things to work on - encourage Daniel to point at a picture and offer opportunties to use his eye-hand coordination to refin his pincer grasp - continue to observe eye movement for any eye turn, return to the opthamologist as needed (Daniel has an appointment on 8/20)
--Hearing - 10 - 15 months
Things to work on - continue to monitor Daniel's hearing, encouraging any communication attempts and the imitation of enviromental and animal sounds
--Gross Motor - 9 months
Things to work on - encourage Daniel to extend hands behind him, cruise furniture in a side step, bend knees to bounce in a stand, and make stepping motions while holding on to furniture or with both hands being held
--Fine Motor - 10 months
Things to work on - encourage Daniel to poke and point with his index finger
--Communication - 9 months
Things to work on - encourage Daniel to increase the number of sounds he makes and strings together, increase his number of gestures and begin use of single words to indicate wants or needs
--Cognitive- 9 months
Things to work on - encourage Daniel to look at named picture for 60 seconds, finding hidden objects, rolling a car on the floor, throwing a ball and turning a toy to find it's functional side
--Social/Emotional - 9 months
Things to work on - show increase fear or insecurity with previously accepted situations and strangers, begin testing parents at meal time or bed time (I think this has begun.), extend arm to show toy or share food when asked
--Self Help - 12 months
Things to work on - increase success with scooping food with spoon, putting on hat, indicate discomfort over soiled diaper
Noah
--Daniel had his one year pictures made yesterday. We tried so hard to get him to smile but we were not real successful, however he made a lot of faces that shows his true personality. Daniel is not a "smiler" but a very happy, outgoing baby boy.
--You can check out his pictures by going to http://www.mericrisp.com/, choosing order online and in the drop down menu choosing Daniel Lloyd. Enjoy!
--Ms. Ginger re-evaluated Daniel for Early Intervention today. The following is a "summary checklist" of milestones. Daniel's average is in the 9 - 12 month range which where he should be based on his "adjusted age". There are a few concerns with gross motor skills (pulling up, walking with assistance) and language development. We will be working on these during the following months.
--Daniel is also being recommended for PT due to his "stiff legs". When he stands he locks his knees and keeps his legs straight and tight. There are many different things that could be causing this. It could be something as simple as it being Daniel's way of feeling secure to some sort of muscle disorder. We will be finding out more in the next couple of weeks as he is evaluated.
1-2 Months
Turns head in direction that cheek is touched X
Able to suck and/or swallow easily X
Startles easily in response to loud noise X
Gaining in length and weight X
Pays attention to someone's face in direct line of sight X
3-4 Months
Makes sounds other than crying X
Holds a rattle and smiles X
Rolls from stomach to back X
Turns head toward a bright light and color X
Shows gains in height and weight X
4-6 Months
Reaches for and grasps objects X
Moves toys from hand to hand X
Smiles in response to others X
Rolls from stomach to back and back to stomach X
Shows gains in height and weight X
6-9 Months
Creeps or crawls forward on tummy by moving arms and legs X
Babbles and laughs out loud, plays pat-a-cake and peek-a-boo X
Sits independently X
Turns head to locate sounds X
Shows gains in height and weight X
9-12 Months
Pulls to stand
Picks up small objects X
Crawls on hands and knees X
Walks with both hands held
Imitates simple sounds X
Waves "bye-bye"
Able to sit on own X
12-15 Months
Says words besides "mama" and "dada"
Walks without help
Drinks from a cup or glass
Takes turns rolling a ball
15-18 Months
Looks at picture books, turns pages
Feeds self with a spoon
Likes to push, pull, and dump things X
Walks without support
Tries to talk and repeats words
Indicates needs by pointing and/or grunting X
--I was searching the web for a some preemie related information and I ran across the following story. It is a good description of how your life changes when your son or daughter is born prematurely.
--There hasn't been much going on in our life lately and we are not complaining.
--We are complaning about the weather.....IT IS HOT! We have been under a heat advisory for the past 3 days. We are staying inside as much as we can and staying cool.
--Daniel has an Early Intervention re-evaluation today at 11. We are anxious to see where he "rates". We will let all of you know how he does later tonight or tomorrow.
--We (Daniel and Mommy) just returned home after a weekend in Savannah.
--Pop-Pop had had to have a scope on Friday at Vanderbilt. We left on Thursday and spent the night with Granny 2 so we could pick up Mary from camp Friday morning. Pop-Pop's test went well and the doctor said that every thing looked good. Pop-Pop, Nanny and Emma came home Friday afternoon. We all met "uncle" Jim, "aunt" Lisa and Jeremy at Shelly's for supper. (Shelly's is a restaurant that is out in the "sticks" that serves a very nice (for Savannah) seafood buffet.) It was nice to visit everyone.
--We spent Saturday relaxing at Pop-Pop and Nanny and Daniel enjoyed getting to play with Mary and Emma. We went out to eat at Worley Bird's (Mommy's favorite place to eat in Savannah) for supper and then all the girls (and Daniel) went to Wal Mart to do a little shopping. --We enjoyed being able to attend church with Pop-Pop and Nanny on Sunday. We enjoyed seeing a lot of friends that we do not get to see often. Everyone was excited to see Daniel and was amazed at how much he had grown. Great-Great Mother and Lallie came to church in Savannah on Sunday night and all of us plus uncle Herb and aunt Tanya went to Wendy's after services. It was nice spending time with everyone. Great-Great Mother fed Daniel and Daniel kept everyone entertained.
--While we were at Wendy's we got to meet Matthew. Matthew is a preemie. He was born July 2 (2 weeks after Daniel). Matthew's Mommy and I went to school together. We were able to "reconnect" after our "early arrivals". It was nice to finally meet Matthew and see Miranda.
--Nanny had to have a scope down Monday morning so Mommy took care of the girls (and Daniel). The doctor found a polyup and removed it and sent it off for a biopsy. Nanny should get the results Thursday.
--We got up this morning and got our stuff packed and headed home. We enjoyed our visit with everyone but we are so happy to be back home with Daddy.
brush, brush, brush
almost finished
i'm finished brushing. what now?
We hope you have a wonderful birthday. We hope to see you soon. We love you!
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