12-4-2011
Rachel had a follow up neurology appointment this week. She now weighs 9lbs 5 oz. Her head circumference was 38.5 cm. Rachel rocked her head ultrasound- no signs or symptoms of hydrocephalus and her ventricles continue to measure like a normal non spina bifida baby. She was cleared by neurology for another 3 months. So happy to be shunt free!
Even with her preemie status she is meeting her milestones on time. She is becoming quite the talker- she frequently coos and does a very distinctive "yeah" when you talk to her. Rachel becomes very excited and smiley when her sisters and other little kids talk to her. So sweet!
During tummy time she tucks her legs under herself and moves them back and forth like she is crawling. She needs to continue working on gaining her upper body strength and then I think she may take off in time. We watched her wiggle the big toe on her right foot and the first three toes on her left foot. She does respond to stimulation of her feet and lower legs. The AFO's are still going good but I think we are close to needing new ones to fit her growing feet.
Sunday, December 4, 2011
Sunday, November 20, 2011
Tootsie Toughpants and AFOs
11-20-2011
Wow! It's been a month since I last updated Rachel's blog. Between working full time (and averaging 18-22 hrs of overtime), chasing Breanne and Alicia, taking care of Rachel, doctor appointments, Steve's school schedule and the never ending pile of laundry- I am lucky to turn my laptop on once a week (I am Starbucks' best customer- Steve too!). I can hear my knitting needles weeping in the craft room from loneliness. Some days I get home from work around 2 am, shower and get into bed by 3 am and up by 6 am to change and feed Rachel, get the girls ready for school and off to doctor appointments with Rachel, maybe eat lunch and then off to work again. One day I will look back and wonder how I did it. Running on love for my family and peppermint mochas. Enough about me . . .
Rachel is 14 wks old. I look at her and think she is so big but yet so little. Yes- we are still wearing newborn size diapers and most of her newborn size clothes still fit. I am guessing she weighs around 8 and half pounds currently. We completed 6 weeks of cast changes and she now has tiny AFOs. (picture coming soon of AFOs on her) She is to wear her AFOs for 14 hours a day. She will need to have the surgery to release the tendons in her ankles for the clubfeet. Her orthopedic doctor will need to put her under for the surgery so we have opted to wait for her to get alittle bigger- possible surgery in spring. Due to her size she is also very difficult to catheterize- we have been given the okay by her urologist to wait to start the ditropan and catheterizing until she is alittle bigger.
I have nicknamed her Tootsie Toughpants at the moment. Rachel has no problem expressing her displeasures. We are working at trying to get her to comfort herself and to fall asleep in her crib or bassinet. She loves to be held and snuggled and lets you know how displeased she is when we are not holding her. (I am running past episodes of Nanny 911 in my head- yikes! I refuse to be one of those moms that still have to hold their 5 yr old to get them to sleep)
Wow! It's been a month since I last updated Rachel's blog. Between working full time (and averaging 18-22 hrs of overtime), chasing Breanne and Alicia, taking care of Rachel, doctor appointments, Steve's school schedule and the never ending pile of laundry- I am lucky to turn my laptop on once a week (I am Starbucks' best customer- Steve too!). I can hear my knitting needles weeping in the craft room from loneliness. Some days I get home from work around 2 am, shower and get into bed by 3 am and up by 6 am to change and feed Rachel, get the girls ready for school and off to doctor appointments with Rachel, maybe eat lunch and then off to work again. One day I will look back and wonder how I did it. Running on love for my family and peppermint mochas. Enough about me . . .
Rachel is 14 wks old. I look at her and think she is so big but yet so little. Yes- we are still wearing newborn size diapers and most of her newborn size clothes still fit. I am guessing she weighs around 8 and half pounds currently. We completed 6 weeks of cast changes and she now has tiny AFOs. (picture coming soon of AFOs on her) She is to wear her AFOs for 14 hours a day. She will need to have the surgery to release the tendons in her ankles for the clubfeet. Her orthopedic doctor will need to put her under for the surgery so we have opted to wait for her to get alittle bigger- possible surgery in spring. Due to her size she is also very difficult to catheterize- we have been given the okay by her urologist to wait to start the ditropan and catheterizing until she is alittle bigger.
I have nicknamed her Tootsie Toughpants at the moment. Rachel has no problem expressing her displeasures. We are working at trying to get her to comfort herself and to fall asleep in her crib or bassinet. She loves to be held and snuggled and lets you know how displeased she is when we are not holding her. (I am running past episodes of Nanny 911 in my head- yikes! I refuse to be one of those moms that still have to hold their 5 yr old to get them to sleep)
Thursday, October 13, 2011
First Spina Bifida Clinic Day and more cast changes
10-13-2011
Rachel is now 7 lbs 1 oz and 18.75 inches long.
The images are from this week's cast changes. Rachel's feet are getting straighter with each new set. This week her feet looked slightly swollen after the casts were removed. She was very crabby during the application of the new set and was kicking her legs around. She ended up with cast plaster all over her clothing and belly. No amount of Sweet Ease on her pacifer was going to please her this week. It seemed to have been crabby baby day in the ortho clinic as the other babies were crying too. That was on Monday.
On Tuesday we had our first Spina Bifida clinic day. It wasn't too bad- we arrived at 8 am and were done by 11:30. We saw the Urologist, clinic dietician, the rehab doctor, social worker and another lady who helped us sign up for some study programs. They place you in a clinic room and all of the people come to see you which is nice.
The results of her renal ultrasound showed normal healthy appearing kidneys. Her VCUG showed no reflux. Yeah for 2 out 3 tests! The urodynamics came back with bladder pressures in the 60's range and one peak at 109. Her spincter does not relax and allow her to urinate at a normal pressure - instead it waits for the pressure to build up. Over time this will cause thickening of the bladder wall and her bladder will not grow as it should and it will also cause reflux and damage to her kidneys. She is also experiencing bladder spasms. Her Urologist would like us to begin catheterizing Rachel every 6 hours and will be starting on Ditropan BID next week. We were given this week to practice getting comfortable with catherizing Rachel before the Ditropan begins. She is so tiny we are starting off with a 5 french foley and then we have size 6 also. The size 5 is like the size of a spaghetti noodle. Even though I have cathed adults- a wiggly baby is definetely a challenge at this point. I am confident we will get a system down and it work out okay. I am curious if she is too young to be started on a cranberry supplement as the cathing is going to put her at great risk for UTIs. We have a pediatrician visit next week so I will explore that idea with her.
One of the studies I signed Rachel up for is being done at the University of Wisconsin Milwaukee campus. It is testing both babies with SB and without SB on the use of treadmills for strength training of their legs. They have shown that both babies with and without SB will move their legs on the treadmill the same way and are researching if this could be a new treatment option for SB babies developing leg muscles. I am curious about this one- it sounds interesting- my shorthand version of the brochure does not give it any justice. I will keep everyone updated on this one. I am not sure if Rachel qualifies right now with her casts on ?????
Thursday, October 6, 2011
8 weeks old and cast changes
10-6-2011
This week's images are from Monday when Rachel had her second set of casts removed and the third set applied. There was more of a noticeable difference with her clubfeet this week. We are scheduled to have a new set of casts applied every Monday for the entire month of October. I am happy to see this week's progress. She does not seem to mind the having the casts- she still kicks her legs up in the air- future Rockette dancer in the making. I continue to do CSM checks on her toes with each diaper change. I do have to agree with the other moms with kiddos getting casted for clubfeet- bring with extra clothes and wipes to clean up your little one. The dry plaster leaves a trail of dust behind - they do put a protective sheet over your little one but the dust gets everywhere. The wet plaster can get on your little one's clothes and in their diaper, on their belly and ect- good to clean off as soon as possible. For those who are not as familiar with casting- with using both fiberglass or plaster casting material the casts will get warm as the material hardens (takes less than a half hour) but afterwards will feel cold and damp until dried- usually a few hours. Also the cast saw removes the cast by vibration- it does not cut the skin- although if it is left in one place too long it can cause a burn and is noisy. Rachel usually sleeps through the cast removal and the cast spreaders seem to be about as big as she is.
Rachel had her urology testing done this morning. She had a renal ultrasound, a VCUG and urodynamics. We will not know all of the results until Tuesday when we have our first Spina Bifida clinic day. We do know from the VCUG though that there was no reflux into her kidneys and she was able to empty her bladder on her own. The results from the urodynamics will indicate her bladder pressure and if she were to need to be straight cath'd. They had to use a size 5 fr foley on her for the testing since she is so small.
We are having good results for diaper rash/open area prevention using Antimonkey Butt powder following by a layer of Antimonkey Butt cream. I have only been able to find it at Walgreen's so far. Needless to say, I bought out the shelf of it yesterday. Both are priced at $5.49 which is not too bad.
Thursday, September 29, 2011
7 weeks old
9-28-2011The first two pictures are from a few weeks ago during and after Rachel's first "baby tub" bath. She loves being in the water and is looking forward to when she can have a "baby tub" bath again.
Last week she had head and hip ultrasounds done. Her head ultrasound came back normal- her vents continue to measure normal with no signs of hydrocephalus. Yeah!!! Rachel's neurologist gave her the thumbs up and she does not need another head ultrasound until December.
The ultrasound of her hips did not contain as good of news as her head ultrasound did. Her hip dysplasia is worse than what was originally expected. Her hips are riding along the posterior edge of her pelvis. Her "german tourist" brace did not make any improvement in her dysplasia (which I kind of suspected would be the case). Her ortho doc discontinued the brace and we are going to revisit her hip issues in the future. (She is going to be following her daddy's road with hip issues) The ortho doc started Rachel with her first set of casts for her clubfeet. I think the casts almost weigh as much as she does. As heavy as they are - she still kicks her legs up in the air and holds them there. On the bright side her quads and knees appear to be quite strong. Yesterday she had the first set removed. Her ankles were more flexible than what they had been but within minutes her muscles pulled her feet back into the starting position. She slept through the application of her second set of casts. Her ortho doc is planning on four more weeks of casting and then we will evaluate her progress. She is most likely going to need to have surgery to release the tendons at some point. In the picture of Rachel in her car seat with her first baby doll, she has on a pair of aloe infused spa socks over her casts. They keep her toes warm and are so much cheaper than buying baby leg warmers- at $3 a pair (Walmart) you can't go wrong. I tuck the tops of the socks over the top of casts also to prevent rubbing and to keep any tinkles or poopsies from getting into her casts. Needless to say- she has a few pairs- right now she is wearing stripped ones that look like candy corn.
I was able to meet another mom at the casting appointment. Her very adorable baby girl Gabby also has spina bifida and was getting her clubfeet casted. They are located in a town near by our town.
Rachel is now up to 6 lbs 4 oz. She feels so big in comparison to how small she started out. She frequently makes big toothless smiles and makes noises like she is trying to laugh. I wonder what she is thinking. I think we may have another class clown in the family.
Friday, September 16, 2011
5 weeks old
9-15-2011
Rachel is doing well. She has increased her feeding amounts to 2.5-3 oz per feeding (about every 3.5-4 hours). We can tell she is gaining weight and growing. I can not get the straps to attach anymore on her German Tourist Outfit (yes- I will be calling her ortho doc for them to reevaluate the size of it- she currently has the preemie size and is probably ready for the newborn size). She is now able to fit into newborn size clothes- yes they are still alittle big but she will be able to wear then for awhile. I had a hard time trying to find a fall jacket for her to wear- everything I found was sized for 3 months and looked like it was made for a giant baby. Her cheeks are getting chubbier and she is now finally starting to grow buns (I am sure she will be mortified when she is older that I wrote that). In the middle picture that I posted- to me her facial features look similar to a picture that my mom has of me (only in mom's picture- I am about 6 months old around Christmas time). The beautiful dress Rachel is wearing was kindly knitted by our neighbor Bev and we absolutely love this dress! I will be saving it for her for when she has her own family. I have one blue knitted dress that my Grandma Scherer knitted for me when I was a baby. We can't seem to figure out her hair color- today it looks reddish, other times it looks brown and in some lights it looks blondish--hmm . . . . . Her eyes are still a dark blue but I am not sure how long it takes for a preemie's eyes to change. I remember it took Alicia almost a year before her eyes finally settled into hazel.
Wednesday, September 7, 2011
First Pediatrician appointment
9-6-2011
Rachel had her first pediatrician appointment today. She now weighs 4 lbs 10 oz and is 16 inches long. We do not know what her beginning length was but I do not imagine it was that much shorter than her current 16 inches. She checked out well at the pediatrician's. No immunization though until next month's appointment. We are to continue on with Rachel as we currently are. She is still to receive Neosure as an added supplement to the EBM until she gets alittle bigger. Her bottom looks great- I highly recommend using Triple Paste to others battling diaper rashes. You can find the Triple Paste at Walmart in the baby dept by the other diaper creams.
I am not sure if I had previously mentioned that Rachel's name was biblical and translates to sheep- which are symbolic of God's children. We feel truely blessed by how well she has done with the fetal surgery and there after. Thank you heavenly Father for laying your hand upon our daughter.
Rachel had her first pediatrician appointment today. She now weighs 4 lbs 10 oz and is 16 inches long. We do not know what her beginning length was but I do not imagine it was that much shorter than her current 16 inches. She checked out well at the pediatrician's. No immunization though until next month's appointment. We are to continue on with Rachel as we currently are. She is still to receive Neosure as an added supplement to the EBM until she gets alittle bigger. Her bottom looks great- I highly recommend using Triple Paste to others battling diaper rashes. You can find the Triple Paste at Walmart in the baby dept by the other diaper creams.
I am not sure if I had previously mentioned that Rachel's name was biblical and translates to sheep- which are symbolic of God's children. We feel truely blessed by how well she has done with the fetal surgery and there after. Thank you heavenly Father for laying your hand upon our daughter.
Monday, September 5, 2011
She's home!
9-5-2011
We were able to bring Rachel home on Saturday. She just made the 4 lb weight limit of her car seat. She is sitting on a blue foam ring to avoid pressure on her lower back during the drive. The nurses also rolled up two blankets on each side of her for extra support. It was hard to find car seats rated for 4 lbs and up in our area- we had only one to chose from at the Target in Menomonee Falls. (For others with preemies the brands Safety First and Chicco make the 4 lb car seats). She tolerated the ride home with no problems (even with Breanne and Alicia in the back seat with her).
We have a ton of doctors' appointments coming up this month and next month. I believe the first two are with Neurology and Orthopedics. She will be having an ultrasound of her head and her hips again.
All of her head ultrasounds have been normal so we are hoping to have dodged the bullet for a shunt but I know it is still early. Hopefully her hip ultrasound will show some improvement in her dysplasia.
Rachel has been feeding every 3 1/2 hours and has been taking in an average of 45-50 ml at each feeding. She rarely spits up which is a great treat for us as both Breanne and Alicia use to spit up nonstop. (We had stock in the Hoover steam vac carpet cleaner back then-lol) I think she has spit up twice so far- the first time landed on the wooden floor in front of us and had our black lab Dixie (10 yrs old) running for cover. Dixie runs for cover if Rachel cries at all. Dixie also hides under the table while Rachel gets her diaper changed too and sighs deeply like she is missing out on her sleep too. Maybe Dixie is having flashbacks of when Alicia was born??? Lucky on the other hand growls whenever Rachel cries- I am worried he is going to come bite in me in the pants when she does. (He will grab your clothing with his teeth if Breanne or Alicia squeal when you are playing with them or if you try to carry them around- very protective watch dog)
Rachel has adjusted well from her quiet hospital room to a house full of noise from her sisters, dogs and parents. She sleeps right through it all - I am hoping to push the bassinet in by my treadmill and get her use to the noise it makes. I had been running 2.5 miles when I became pregnant and am desperate to get back to running again ( I am sure with the all the bed rest and surgeries it will take me some time to get there).
Wednesday, August 31, 2011
Getting closer
8-31-2011
The first picture is from today with Rachel's NG tube gone. Yeah! She is now on ad lib feedings meaning however much she would like when she would like it. Her goal is 200ml in a 24 hour time period. I was told to bring a car seat with me tomorrow as she may discharge either tomorrow or Friday.
The second picture is of the bunny I knitted for Rachel. I started it early in my pregnancy but had strayed away from finishing until 2 wks before Rachel was born. I remember when I finished the bunny and was holding it- I thought Rachel was going to be bigger than the bunny when she was born but as you can see I was wrong. The bunny pattern is by Susan B Anderson in her Itty Bitty Toys book. She is a local (Madison WI) designer and has a great knitting blog. I love her patterns- she is by far my favorite knitting designer.
Monday, August 29, 2011
So close to coming home but yet . . .
8-29-2011
We are on a up and down roller coaster ride with Rachel's feedings. For the most part she is taking the majority of her feedings by mouth but not enough of them to come home yet. Her feedings were increased to 34 ml every 3 hours. We are getting close though and her nurse today stated they will be pulling out her NG tube tomorrow. She does better with her feedings if she is positioned on her side vs the traditional feeding position. The side position always her to control the amount she is receiving better and she does not seem as stressed out in this position. I will not complain though as this is the only real issue she has experienced since being born and it is an expected issue with preemies.
She was switched to Triple Paste for her red bottom and the Triple Paste is working better than the other creams they have tried. She is still emptying her bladder on her own.
She also continues not to mind wearing her Plavik brace (her German Tourist Outfit). I usually remove it while I am visiting to do skin checks on her, put a little lotion on and do some gentle ROM exercises on her feet before placing the brace back on. She appears to be ticklish on the backs of her upper legs- she will smile and raise up her shoulders and look like she is suppressing a giggle- too cute. Her physical therapist also works with her legs daily.
Thursday, August 25, 2011
German Tourist Outfit
8-25-2011
The first image is after her bath this past Monday. I thought it would be a good beginning picture of her club feet before casting occurs. The second picture is of her harness for the hip dysplasia. The harness is to remain on for about 4 weeks- maybe longer depending on how well her hip sockets form during the 4 weeks.
Possible weekend discharge
8-24-2011
Rachel is up to taking 90% of her feedings by mouth. She needs to be at 100% for a couple of days and then we can talk about coming home. Her doctors felt it maybe this weekend and some of the nurses are guessing next week. Either way- it is good to have some light at the end of the NICU tunnel. She had another head ultrasound yesterday and again there was no increase in her ventricles (she is still measuring like a normal baby would). She had her special harness placed on Monday for the hip dysplasia. She slept through the placement and doesn't seem to mind wearing it all. I will try to post a picture of her in it soon for other parents who may need the same harness. I like to call it her "German tourist outfit" (sorry I have watched Duece Biggalo one too many times). Her bottom is looking less red and her stool is starting to be slightly more formed. All in all she is doing great for a preemie.
Saturday, August 20, 2011
1 Week Old
8-19-2011
This week has gone by in a blur. We have been trying to balance home life with life in the NICU. Sometimes there are just not enough hours in the day to get it all done. Breanne and Alicia have been such good girls and helpers- we are very proud of them. They both have held Rachel twice and neither wants to give up holding her. It is fun to see how they all interact together -even at Rachel's young age you can tell she recognizes the girls' voices.
Rachel is doing great. The only thing holding her in the NICU is the need to feed more and gain more weight. She had gained back an ounce since she had the NG tube replaced. She likes to pull it out when the nurses are not looking- little stinker. She is doing everything appropriately for a preemie her age. She had another head ultrasound on Wednesday and everything has stayed the same- no increase in her ventricles. Her neurosurgeon is happy with her progress.
Her physical therapist showed Steve and I some gentle stretches we can do with her legs and feet. We are happy to report that she does have movement in her ankles and we saw her move one of her big toes. She loves to have the bottom of her feet stroked- it seems to calm and relax her. Orthopedics will be placing her in her harness brace on Monday for the hip dysplasia. We have see more leg movements with her as the week has gone on.
I gave her another bath today. She didn't like too much and let us all know. She did enjoy her hair washing again. I like when her hair dries and it sticks up all over the place. It took me almost a half hour to get her dressed after her bath. I think I am out of practice but that will change.
Please say prayers for the baby boy and his family across from us in the NICU. May God place his hand upon Cole and help heal his little body.
Tuesday, August 16, 2011
5 Days Old
8-16-2011
Rachel had her NG tube placed back in early this morning. She is able to coordinate her feeding skills but is still falling asleep shortly after she begins to feed. The nurses let her feed as much as she can and then the rest is given to her via her NG tube. They added a calorie supplement to the breast milk I am providing for her.
I was able to help give her a bath today. She did not like the bath but loved getting her hair washed. She rolled over twice on her own during the bath. I was able to dress her today too. She had her billirubin light turned off today- she will get rechecked in the morning and may possibly need it for another day. She will be fitted with a special harness/brace this week for the hip dysplasia and they may start casting her club feet next week.
Tomorrow Steve and I will be spending most of the day with her at the hospital. We are also taking an infant CPR class tomorrow. (too bad it wasn't my health care provider renewal- mine is due at the end of next month) The girls have been reading books to Rachel when we visit- it is fun to see her turn her head towards them like she is listening. She seems to respond a lot to Breanne's voice but Breanne did talk to her daily while I was pregnant.
Monday, August 15, 2011
Fireball
8-15-2011
Rachel has established herself as the next fireball of our family. She definitely lets the NICU staff know when she doesn't like something. She pulled out her NG tube this morning- they did not replace it. Instead they are allowing her to eat larger amounts at an extended time period. This method seems to be working so far- she will eat about 2/3 of the amount they would like, then she falls asleep and they work to stimulate her to wake up and eat more. She was upped to 20ml per feeding and eats every 3 hours. I am not sure if it is a compliment or not to have the nurses tell you- your baby girl belches like a trucker. (must take after her Papa) I was skeptical that a 3 pounder could belch loudly until she did when I was burping her- it was as loud as my 11 and 9 year old would be!!!!!
She was seen by OT, PT and the orthopedic doctor today. She did well on her evals from the therapies- she even scored some items above her gestational age and scored like a regular 40 week newborn. She will begin to have regular sessions with the therapies to strengthen her legs. The orthopedic doctor was very hopeful that she would be able to walk with AFOs. They may start casting her next week and are still thinking about the best method to help with her hip dysplasia. The neurosurgeon gave the okay for her to be on her back but she seems to prefer to be on her sides and will work to reposition herself off of her back.
Steve and I are attending an infant CPR class on Wednesday. It has been inspiring to meet some of the other parents in the NICU and learn about their babies. So many miracles happening! It was hard being discharged today and having Rachel stay. I know she is in great hands and I have nothing but compliments for the entire NICU team (and my mom/baby staff that took care of me).
On the other bright side- it appears that UMR has finally worked out a contract with Vanderbilt for the surgery.
Rachel has established herself as the next fireball of our family. She definitely lets the NICU staff know when she doesn't like something. She pulled out her NG tube this morning- they did not replace it. Instead they are allowing her to eat larger amounts at an extended time period. This method seems to be working so far- she will eat about 2/3 of the amount they would like, then she falls asleep and they work to stimulate her to wake up and eat more. She was upped to 20ml per feeding and eats every 3 hours. I am not sure if it is a compliment or not to have the nurses tell you- your baby girl belches like a trucker. (must take after her Papa) I was skeptical that a 3 pounder could belch loudly until she did when I was burping her- it was as loud as my 11 and 9 year old would be!!!!!
She was seen by OT, PT and the orthopedic doctor today. She did well on her evals from the therapies- she even scored some items above her gestational age and scored like a regular 40 week newborn. She will begin to have regular sessions with the therapies to strengthen her legs. The orthopedic doctor was very hopeful that she would be able to walk with AFOs. They may start casting her next week and are still thinking about the best method to help with her hip dysplasia. The neurosurgeon gave the okay for her to be on her back but she seems to prefer to be on her sides and will work to reposition herself off of her back.
Steve and I are attending an infant CPR class on Wednesday. It has been inspiring to meet some of the other parents in the NICU and learn about their babies. So many miracles happening! It was hard being discharged today and having Rachel stay. I know she is in great hands and I have nothing but compliments for the entire NICU team (and my mom/baby staff that took care of me).
On the other bright side- it appears that UMR has finally worked out a contract with Vanderbilt for the surgery.
Back closure from fetal surgery
8-15-2011
The images above show what Rachel's incision looks like right after birth. They were taken within 24 hours of delivery. Her fetal back closure surgery occured at 23 weeks of pregnancy.
NG Tube Placed
8-15-2011
While Rachel has been feeding on her own- she is not taking in enough calories and has been losing weight. After talking with her nurse, I requested that a NG tube be placed to supplement the extra calories she needs. Rachel's nurse spoke with her doctor and they were in agreement. She has been taking in 12 ml at each feeding and they would like her to be at 20ml. She gets tired out from working so hard to eat that she falls asleep during her feedings. The plan is to continue to let her feed and whatever the difference in ml is at that feeding will be given to her via the NG tube. I have worked with adults who have had one so it was interesting to see one meant for a preemie. Rachel's nurse placed the NG tube and then she had an x-ray to double check the placement. Everything looks good at this time with the NG tube. Rachel was quite angry during the placement (not that I blame her) but calmed down immediately after it was placed.
I may also request that she placed in an incubator instead of the open crib she currently has. It takes up a lot of energy and calories for preemies to maintain their temperature. She has been maintaining hers but if we can make it easier for her- we should.
I have been enjoying holding her at night but will not be able to do that any more as I am discharging today and our rules for visiting in the NICU change after mom is discharged. Rachel does have a great staff caring for her in the NICU- it is amazing to see and listen to all the care that goes into the babies there.
Sunday, August 14, 2011
Unexpected delivery
8-14-2011
I woke up around 5:45 am on Thursday morning. I had noticed that I had passed a dime size blood clot and had passed two other spots of blood. I called my MFM doc and they recommended that I come in to be evaluated. As my husband and I were driving to the evaluation I had commented to him that we would be back home later today and that most likely the blood was from a broken blood vessel or something similar. Both of us agreed that would most likely be the way the day would go and we would need a good nap later in the day. When we arrived to be evaluated I was already assigned a labor and delivery room (must have been an omen). I was no longer having any bleeding and was confident of my departure to back home. Given our history of having the fetal surgery the doctor on duty wanted to keep me longer to rule out any of the possible risks of having the surgery done. I was given a pelvic exam which did confirm more bleeding and a pool of fluid- which turned out to be amniotic. I was also having some right sided pain but was unsure if this was related to the position of Rachel. To make a long story short- it turned out that my water had broke at some point but we are unsure of when due to my leaky bladder issues I had been having since the fetal surgery. The doctor suspected that I had a uterine infection starting- a.k.a. the right sided pain. Normally if your water broke they would try to give you steroids for 48 hours to help prep the baby's lungs and then deliver the baby- in our case it was determined that there was not time for the steroids and a c-section needed to be done soon. Interestingly- the OB doctor on duty had recently been to San Francisco to learn more about the fetal surgery for spina bifida and he was well educated on what could be happening and what needed to be done. (Turns out Children's Hospital is considering getting the education to possibly provide this surgery in the future). Also the previous day- our case was discussed with multiple doctors to prepare for our upcoming c-section in September. Talk about timing - especially with us receiving the NICU tour two days prior. Perhaps God had his plan for Rachel in motion.
There were 2 other moms scheduled to have c-sections then it would be our turn. My husband took this opportunity to drive home and let the dogs out and make arrangements for our girls (we had dropped them off at Grandma's for my evaluation). As Murphy's law goes- we did not bring our cell phone with and the phones in our room did not allow any long distance calls to be able to notify family. As Steve was gone thinking he had 4 hours until the c-section was to be done- the staff had come in my room and bumped up my c-section time- I had no way of getting a hold of him to tell him to get back to the hospital. Fortunately as they were getting ready to walk me to the OR suite- Steve walked back in and was given his "bunny" suit to put on. The moral of this story is - never be over confident- always take the cell phone with you and make sure you have your hospital bag packed weeks in advance. No need to ask if I had a hospital bag planned out and packed because I did not (now I am at Steve's mercy for whatever he brings for me to use- yep I will be sporting Betty Boop jammies tomorrow).
For the c-section I had received a spinal epidural and opted to have an injection of Duramorph instead of a PCA for pain control after the c-section was done. The Duramorph is suppose to last around 20 hours without making you feel groggy and does not increase the length of time it takes for the spinal to wear off. For me- the Duramorph worked wonders and I highly recommend it to other moms. For the c-section they were able to reuse the same incision that was used for the fetal surgery. The c-section was an interesting feeling to me- while you do not feel any pain- you can feel your abdomen moving around like it's jello swishing side to side in a bowl. You do feel a slight amount of pressure at times but again it is not painful. During my c-section it was noted that my bladder was slighly displaced and wedged tightly under my uterus- the cause of all of my leaky issues (made me feel better to hear the doctors noting the displacement as I had already began to mentally make an urology appointment for myself- happy to report I have had no more leaky issues since the c-section-TMI!) It took about 20 minutes from the beginning of the c-section until Rachel was born at 1:36 p.m. She came out crying- what a joyous sound! The NICU team immediately took her out of the room and began evaluating her- my husband was able to follow and one of the NICU doctors explained everything to him step by step as they were evaluating. I could hear her crying out in the hall while they continued to work on me. A few moments later Steve walked back into the OR holding Rachel in his arms- I got a brief 10 second peek at her before she was escorted to the NICU. It was hard to see her- I mainly got a peek at a little forehead. I opted to have my tubes tied during the c-section as we had decided several months ago that Rachel would be our last child not only because of our age (me 35 & Steve 38) but due to the possible risk factors in future pregnancies from having the fetal surgery done. From start to finish I was in the OR for about 2 hours- I was kept very comfortable and whenever I would feel any anxiety I was given something for it immediately. I do have to give a big shout out for the entire OR team that worked on me as they were all ladies! Rock on girls! I was in the recovery room for about an hour before being moved to my room on the mom/baby floor. Steve and our girls were able to visit Rachel right away and they got to visit me while I was in the recovery room. Breanne was very excited for her baby sister and Alicia kept commenting that she didn't think her baby sister was coming that day (either did Steve and I). We had not even picked out Rachel's middle name at that point but while we were in the recovery room Steve and I let Breanne and Alicia pick out Rachel's middle name- our only criteria was that it needed to start with the letter "M" like both of their middle names. They choose Marissa.
Rachel Marissa was 3 lbs 11 oz. We do not know how long she was- with her being in a breech position for so long she had also developed hip dysplasia preventing her legs from being stretched out to measure. (Poor Steve I think his heart was broken by this as he also was born with hip dysplasia and clubbed feet and had always prayed that his girls wouldn't go through what he did) Rachel has a lot of hair- (no I didn't get my redhead but that is okay) her hair is the same shade of brown as Steve's is. For the most part she has been able to breathe on her own- needing a small amount of oxygen via nasal cannula at times for apnea she experiences during deep sleep. She started feeding yesterday at 4ml per feeding and she now has worked her way up to 12ml. She does wake up on her own near each feeding time and shows signs of rooting. I have been able to breastfeed her a few times now and am pumping every 3 hours. To check that she is receiving enough milk while breastfeeding- she gets weighed before and after the feeding. The theory is that each gram equals a ml of breast milk.She has been urinating on her own- after each void she was receiving a bladder scan and all of her scans have shown her to be on empty- she did have her kidneys evaluated also and they look great. The urologist have cleared her at this time and she does not need to catheterized. Her bladder will be re-evaluated in a couple of months. She has been passing stool frequently and it has just changed over from the sticky dark newborn stool to stool of a newborn on breast milk. We are using Aquafor (I think I spelled it wrong) as a barrier cream on her bottom to prevent skin breakdown. She is so tiny she has no buns yet! Rachel's blood type came back as A+ (looks like all 3 of my girls share the same blood type). Both of her feet are clubbed. We have not seen movement at the ankles or toes but she will kick her legs if you touch her feet. Her calves are definitely atrophied in comparison to her quads. We will be meeting with the orthopedic doctor tomorrow to discuss future bracing and casting for both the hip dysplasia and clubbed feet. I believe she will also be getting an OT & PT consult tomorrow. Her incision on her back looks great. Her vents continue to measure normal and will continue to be monitored for any changes. She is jaundice and was started on her bilirubin light blanket yesterday. She has little eye shields that are put on and look like sunglasses- too cute!!! It is hard to imagine but her little fingernails are the size of sesame seeds- I am not looking forward to when they need a trim.
I woke up around 5:45 am on Thursday morning. I had noticed that I had passed a dime size blood clot and had passed two other spots of blood. I called my MFM doc and they recommended that I come in to be evaluated. As my husband and I were driving to the evaluation I had commented to him that we would be back home later today and that most likely the blood was from a broken blood vessel or something similar. Both of us agreed that would most likely be the way the day would go and we would need a good nap later in the day. When we arrived to be evaluated I was already assigned a labor and delivery room (must have been an omen). I was no longer having any bleeding and was confident of my departure to back home. Given our history of having the fetal surgery the doctor on duty wanted to keep me longer to rule out any of the possible risks of having the surgery done. I was given a pelvic exam which did confirm more bleeding and a pool of fluid- which turned out to be amniotic. I was also having some right sided pain but was unsure if this was related to the position of Rachel. To make a long story short- it turned out that my water had broke at some point but we are unsure of when due to my leaky bladder issues I had been having since the fetal surgery. The doctor suspected that I had a uterine infection starting- a.k.a. the right sided pain. Normally if your water broke they would try to give you steroids for 48 hours to help prep the baby's lungs and then deliver the baby- in our case it was determined that there was not time for the steroids and a c-section needed to be done soon. Interestingly- the OB doctor on duty had recently been to San Francisco to learn more about the fetal surgery for spina bifida and he was well educated on what could be happening and what needed to be done. (Turns out Children's Hospital is considering getting the education to possibly provide this surgery in the future). Also the previous day- our case was discussed with multiple doctors to prepare for our upcoming c-section in September. Talk about timing - especially with us receiving the NICU tour two days prior. Perhaps God had his plan for Rachel in motion.
There were 2 other moms scheduled to have c-sections then it would be our turn. My husband took this opportunity to drive home and let the dogs out and make arrangements for our girls (we had dropped them off at Grandma's for my evaluation). As Murphy's law goes- we did not bring our cell phone with and the phones in our room did not allow any long distance calls to be able to notify family. As Steve was gone thinking he had 4 hours until the c-section was to be done- the staff had come in my room and bumped up my c-section time- I had no way of getting a hold of him to tell him to get back to the hospital. Fortunately as they were getting ready to walk me to the OR suite- Steve walked back in and was given his "bunny" suit to put on. The moral of this story is - never be over confident- always take the cell phone with you and make sure you have your hospital bag packed weeks in advance. No need to ask if I had a hospital bag planned out and packed because I did not (now I am at Steve's mercy for whatever he brings for me to use- yep I will be sporting Betty Boop jammies tomorrow).
For the c-section I had received a spinal epidural and opted to have an injection of Duramorph instead of a PCA for pain control after the c-section was done. The Duramorph is suppose to last around 20 hours without making you feel groggy and does not increase the length of time it takes for the spinal to wear off. For me- the Duramorph worked wonders and I highly recommend it to other moms. For the c-section they were able to reuse the same incision that was used for the fetal surgery. The c-section was an interesting feeling to me- while you do not feel any pain- you can feel your abdomen moving around like it's jello swishing side to side in a bowl. You do feel a slight amount of pressure at times but again it is not painful. During my c-section it was noted that my bladder was slighly displaced and wedged tightly under my uterus- the cause of all of my leaky issues (made me feel better to hear the doctors noting the displacement as I had already began to mentally make an urology appointment for myself- happy to report I have had no more leaky issues since the c-section-TMI!) It took about 20 minutes from the beginning of the c-section until Rachel was born at 1:36 p.m. She came out crying- what a joyous sound! The NICU team immediately took her out of the room and began evaluating her- my husband was able to follow and one of the NICU doctors explained everything to him step by step as they were evaluating. I could hear her crying out in the hall while they continued to work on me. A few moments later Steve walked back into the OR holding Rachel in his arms- I got a brief 10 second peek at her before she was escorted to the NICU. It was hard to see her- I mainly got a peek at a little forehead. I opted to have my tubes tied during the c-section as we had decided several months ago that Rachel would be our last child not only because of our age (me 35 & Steve 38) but due to the possible risk factors in future pregnancies from having the fetal surgery done. From start to finish I was in the OR for about 2 hours- I was kept very comfortable and whenever I would feel any anxiety I was given something for it immediately. I do have to give a big shout out for the entire OR team that worked on me as they were all ladies! Rock on girls! I was in the recovery room for about an hour before being moved to my room on the mom/baby floor. Steve and our girls were able to visit Rachel right away and they got to visit me while I was in the recovery room. Breanne was very excited for her baby sister and Alicia kept commenting that she didn't think her baby sister was coming that day (either did Steve and I). We had not even picked out Rachel's middle name at that point but while we were in the recovery room Steve and I let Breanne and Alicia pick out Rachel's middle name- our only criteria was that it needed to start with the letter "M" like both of their middle names. They choose Marissa.
Rachel Marissa was 3 lbs 11 oz. We do not know how long she was- with her being in a breech position for so long she had also developed hip dysplasia preventing her legs from being stretched out to measure. (Poor Steve I think his heart was broken by this as he also was born with hip dysplasia and clubbed feet and had always prayed that his girls wouldn't go through what he did) Rachel has a lot of hair- (no I didn't get my redhead but that is okay) her hair is the same shade of brown as Steve's is. For the most part she has been able to breathe on her own- needing a small amount of oxygen via nasal cannula at times for apnea she experiences during deep sleep. She started feeding yesterday at 4ml per feeding and she now has worked her way up to 12ml. She does wake up on her own near each feeding time and shows signs of rooting. I have been able to breastfeed her a few times now and am pumping every 3 hours. To check that she is receiving enough milk while breastfeeding- she gets weighed before and after the feeding. The theory is that each gram equals a ml of breast milk.She has been urinating on her own- after each void she was receiving a bladder scan and all of her scans have shown her to be on empty- she did have her kidneys evaluated also and they look great. The urologist have cleared her at this time and she does not need to catheterized. Her bladder will be re-evaluated in a couple of months. She has been passing stool frequently and it has just changed over from the sticky dark newborn stool to stool of a newborn on breast milk. We are using Aquafor (I think I spelled it wrong) as a barrier cream on her bottom to prevent skin breakdown. She is so tiny she has no buns yet! Rachel's blood type came back as A+ (looks like all 3 of my girls share the same blood type). Both of her feet are clubbed. We have not seen movement at the ankles or toes but she will kick her legs if you touch her feet. Her calves are definitely atrophied in comparison to her quads. We will be meeting with the orthopedic doctor tomorrow to discuss future bracing and casting for both the hip dysplasia and clubbed feet. I believe she will also be getting an OT & PT consult tomorrow. Her incision on her back looks great. Her vents continue to measure normal and will continue to be monitored for any changes. She is jaundice and was started on her bilirubin light blanket yesterday. She has little eye shields that are put on and look like sunglasses- too cute!!! It is hard to imagine but her little fingernails are the size of sesame seeds- I am not looking forward to when they need a trim.
Tuesday, August 9, 2011
Post Op Week 9 Appointment
8-9-2011
It is hard to believe that it is already 9 weeks since we had the fetal surgery done. To be honest, I didn't think we would make it to this point. Yeah for making it to 32 weeks of pregnancy!!
Rachel had the hiccups during today's ultrasound. She usually gets the hiccups about 3 times a day. She continues to be in the same breech position and likes keeping her hands and feet by her face. She was measured to be 3 lb 10 oz today. She was doing her breathing exercises but they appeared to be much smoother and even today looking like she was breathing like someone who was already born. Both ventricles stayed stable at 4mm. My amniotic fluid dipped slightly to 10.13 but it is still within normal limits- so no worries!
We toured the NICU and L&D rooms. I love how the waiting area outside the NICU is painted and decorated. The NICU rooms are divided into pods with individual rooms for each baby. The rooms are very small- I am not sure how you would fit more than the parents and nursing staff in there. I don't think this will be a problem for us though as we prefer not to have visitors until after we are home anyways.
It is hard to believe that it is already 9 weeks since we had the fetal surgery done. To be honest, I didn't think we would make it to this point. Yeah for making it to 32 weeks of pregnancy!!
Rachel had the hiccups during today's ultrasound. She usually gets the hiccups about 3 times a day. She continues to be in the same breech position and likes keeping her hands and feet by her face. She was measured to be 3 lb 10 oz today. She was doing her breathing exercises but they appeared to be much smoother and even today looking like she was breathing like someone who was already born. Both ventricles stayed stable at 4mm. My amniotic fluid dipped slightly to 10.13 but it is still within normal limits- so no worries!
We toured the NICU and L&D rooms. I love how the waiting area outside the NICU is painted and decorated. The NICU rooms are divided into pods with individual rooms for each baby. The rooms are very small- I am not sure how you would fit more than the parents and nursing staff in there. I don't think this will be a problem for us though as we prefer not to have visitors until after we are home anyways.
Tuesday, August 2, 2011
Post Op Week 8 Appointment
8-2-2011
The ultrasound image is of Rachel using the placenta as her personal fluffy pillow with her hands resting by her chin. She was asleep during this ultrasound also after being active during the drive to Children's Hospital. Her hair appeared to be longer. She was doing her breathing exercises and we saw her swallow amniotic fluid. Her bladder looked full. She continues to be in a breech position with her head by my right rib cage and her butt is tucked down low in the left side of my pelvis. Both of her ventricles stayed steady at 4mm. I believe at next week's ultrasound we will get measurements of her size but I am pretty confident in saying Rachel is alittle over 3 lbs currently. I had a dip in my amniotic fluid volume (11.3) from last week and the ultrasound tech was unable to visualize if there was a separation of membranes due to how low Rachel was sitting in my pelvis. My amniotic fluid volume is still within normal limits so we are not overly concerned at this point- if I notice any fluid leaking I will contact my MFM doc.
We took Breanne and Alicia with us to today's appointment and we met with the New Life coordinator. She helps interact with children that are about to be new big sisters/brothers. The girls were able to express how they felt about becoming big sisters and ask questions. They seem to be most concerned about where Rachel will be when she is born- the NICU. We will be taking the girls with to next week's appointment when we have tours of the NICU and other related areas. I think next week's appointment/tour will ease some of their anxiety.
Our health insurance company continues to be a "dirty" word. They are still denying our claims for the fetal surgery and after care even with evidence that "our St. Mary's network" can NOT met the needs of Rachel or me. They were suppose to be working out a contract with Vanderbilt and Froedert for our care but seem to be stalling or are just ignorant. Enough about that . . . .
Tuesday, July 26, 2011
Post Op Week 7 Appointment
7-26-2011
We had our post op week 7 appointment today. We made our 30 week goal this past Saturday. The next goal is for 32 weeks. Rachel was sleeping during this ultrasound but as soon as we rolled out of the hospital- she was active and moving around. She was doing her practice breathing exercises and had emptied her bladder for us. Her left ventricle measured at 4mm and her right ventricle was too small to measure today. She is doing great! During last week's ultrasound and again today our ultrasound tech noted artifacts at the skin level of Rachel's repair site. We believe that they are sutures from the surgery. I also have 2 sutures that have poked out of my incision- like mother like daughter. There is nothing to be done with the sutures at this point - they will be taken care of after delivery if they have not full dissolved by then. My amniotic fluid volume had increased to alittle over 15 and again there were no signs of separation of membranes or placental separation.
We had met with the pediatric neurosurgeon last week and today we had met with the lactation consultant. In two weeks we will get tours of the NICU, L&D - OR suite for the C-section and mom/baby floor. It is exciting to think we have only 7 more weeks to go but at the same time reality has set in that we are not completely prepared for Rachel. At this point I only have a few outfits for her, 2 bottles, 2 nukes, 2 blankets and a diaper bag. We will be blessed to be able to use a crib and changing table from other family members. I had purposely avoided buying baby items at the beginning of this pregnancy since I was always worried about a miscarriage occurring. In a way though, I am glad we waited to buy items since I now know we need to buy latex free items for her.
Tuesday, July 19, 2011
Post Op Week 6 Appointment
7-19-2011
Today we had our post op week 6 appointment. Rachel now has hair that you can see (if only I could tell if she was going to be a redhead like me or a blonde like her oldest sister or have brown hair like her daddy and other sister) She was opening and closing one of her eyes like she was winking at you and she was continuously moving her mouth like she was telling us something. Perhaps a good joke to go with the winking?She continued to be working on her "practice breathing" exercises. Her left ventricle decreased again to 4mm and her right ventricle stayed at 5mm. She is still in breech position with her ankles crossed- perfect for kicking my poor bladder. My fluid levels continue to be good and no signs of membrane or placental separation. We have about 8 more weeks of bedrest left. It is getting harder to get much sleep during the night- I have been having a lot of hip and knee joint pain due to pregnancy hormones and having ligament stretching pains in my sides. I can maybe tolerate laying for 30 minutes at a time before I have to reposition from the pain. Makes for a long night!
Tuesday, July 12, 2011
Post op week 5 appointment
7-12-2011We had our post op week 5 appointment today. The image on this post is of her head and brain. Her chiari looks to have reversed itself and there was no banana sign detected during the ultrasound. Her left ventricle measured 6mm and her right ventricle measured 5mm- they peaked at 7mm last week. Hopefully they will continue to decrease and stay steady. She is estimated to weigh 2 lbs 11 oz currently. Rachel continues to do her breathing exercises and likes to keep in a breech position. My amniotic fluid levels measured good again (around 12.3), no signs of membranes separating or placental separation. I am still on a modified bedrest and taking it easy.
Friday, July 8, 2011
Post op week 4 appointment
6-8-2011
We had our post op week 4 appointment this past Tuesday. No changes from last week to report. Everything is continuing to look good at this time. We met with one of the nurse practitioners from the spina bifida clinic after our OB appointment. It was nice to physically see what a shunt looks like if she were to end up needing one. We also were able to see a urinary catheter also ( I am guessing by size maybe a 5 or 6 french) The urinary catheter is not a big deal to me as I am a LPN and have catheterized numerous people over the years- my husband on the other hand looked like he was going to pass out. Dealing with the reality of most likely needing to cath her is very stressful for him. I think like most other Dads in this situation, he is afraid of hurting her or doing something wrong that ends up with her getting a UTI. It was good to know that the hospital will provide a gel pack for her lower back to place in her car seat and if needed they have a bed style car seat that we can use also. The spina bifida clinic runs twice a month and all of the specialists that your child would need to see are scheduled to be there. Over the next two appointments we will be meeting with her neurosurgeon and the neonatalogist.
Tomorrow marks the 28th week of pregnancy which is a one of the first milestones for fetal surgery. If all goes well from this point- only 9 more weeks of bedrest.
On a crappy note I received a letter yesterday from my employer regarding my health insurance coverage. After the end of August I will need to pay alittle over $1600 a month for COBRA until I can return to work- which if all goes as planned will not be until mid November. Hmmm . . . . .
On one of the comments left on our blog I was asked why my family had decided to have the fetal surgery done. I will try my best to explain our reasons. When you first hear that your baby has a birth defect and the challenges that come with that defect- spina bifida in our case- you feel powerless and defective. You run all of the events of the pregnancy through your mind- searching for something you did wrong - something to place the blame on. You think about all of the "normal" things such as walking or riding a bike that your child may never be able to do. Your heart breaks with the anticipation of the challenges your child is going to face over their lifetime. Let's face it- it can be an ignorant and cruel world out there- even for a person with no disabilities. Your protective instincts take over and you become the biggest cheerleader for your unborn child. You spend hours researching the birth defect in depth. You read about other people's experiences- what worked well for them- what didn't work for them- ways they have adapted to meet their needs. You study the results of the MOMs trial in the New England Journal of Medicine. You speak with specialists regarding the birth defect. You learn about the risks involved with fetal surgery. Having the surgery is a very individualized choice- it is not for everyone. While you can not erase or cure the birth defect, fetal surgery gives you the opportunity to help prevent further disability. Amniotic fluid is very caustic to the open spine and will continue to eat away at the nerve endings causing more damage and disability during the remainder of the pregnancy. The open spine can continue to pull down and cause further hindbrain herniation (Chiari malformation) and block the flow of CSF causing hydrocephalus to occur. You still have the possibility of hydrocephalus occurring after fetal surgery but preventing the Chiari malformation from worsening is a major deal. The Chiari malformation can cause problems with breathing and feeding which could result in the need for a trach or feeding tube. We chose to have the fetal surgery with the understanding that the surgery is not going to cure our child's spina bifida but it can help prevent further disability from occurring. We want to give Rachel a chance for the best possible outcome in her life. Fetal surgery gave us the opportunity to dissolve the feelings of being powerless and to do something positive for our unborn child.
We had our post op week 4 appointment this past Tuesday. No changes from last week to report. Everything is continuing to look good at this time. We met with one of the nurse practitioners from the spina bifida clinic after our OB appointment. It was nice to physically see what a shunt looks like if she were to end up needing one. We also were able to see a urinary catheter also ( I am guessing by size maybe a 5 or 6 french) The urinary catheter is not a big deal to me as I am a LPN and have catheterized numerous people over the years- my husband on the other hand looked like he was going to pass out. Dealing with the reality of most likely needing to cath her is very stressful for him. I think like most other Dads in this situation, he is afraid of hurting her or doing something wrong that ends up with her getting a UTI. It was good to know that the hospital will provide a gel pack for her lower back to place in her car seat and if needed they have a bed style car seat that we can use also. The spina bifida clinic runs twice a month and all of the specialists that your child would need to see are scheduled to be there. Over the next two appointments we will be meeting with her neurosurgeon and the neonatalogist.
Tomorrow marks the 28th week of pregnancy which is a one of the first milestones for fetal surgery. If all goes well from this point- only 9 more weeks of bedrest.
On a crappy note I received a letter yesterday from my employer regarding my health insurance coverage. After the end of August I will need to pay alittle over $1600 a month for COBRA until I can return to work- which if all goes as planned will not be until mid November. Hmmm . . . . .
On one of the comments left on our blog I was asked why my family had decided to have the fetal surgery done. I will try my best to explain our reasons. When you first hear that your baby has a birth defect and the challenges that come with that defect- spina bifida in our case- you feel powerless and defective. You run all of the events of the pregnancy through your mind- searching for something you did wrong - something to place the blame on. You think about all of the "normal" things such as walking or riding a bike that your child may never be able to do. Your heart breaks with the anticipation of the challenges your child is going to face over their lifetime. Let's face it- it can be an ignorant and cruel world out there- even for a person with no disabilities. Your protective instincts take over and you become the biggest cheerleader for your unborn child. You spend hours researching the birth defect in depth. You read about other people's experiences- what worked well for them- what didn't work for them- ways they have adapted to meet their needs. You study the results of the MOMs trial in the New England Journal of Medicine. You speak with specialists regarding the birth defect. You learn about the risks involved with fetal surgery. Having the surgery is a very individualized choice- it is not for everyone. While you can not erase or cure the birth defect, fetal surgery gives you the opportunity to help prevent further disability. Amniotic fluid is very caustic to the open spine and will continue to eat away at the nerve endings causing more damage and disability during the remainder of the pregnancy. The open spine can continue to pull down and cause further hindbrain herniation (Chiari malformation) and block the flow of CSF causing hydrocephalus to occur. You still have the possibility of hydrocephalus occurring after fetal surgery but preventing the Chiari malformation from worsening is a major deal. The Chiari malformation can cause problems with breathing and feeding which could result in the need for a trach or feeding tube. We chose to have the fetal surgery with the understanding that the surgery is not going to cure our child's spina bifida but it can help prevent further disability from occurring. We want to give Rachel a chance for the best possible outcome in her life. Fetal surgery gave us the opportunity to dissolve the feelings of being powerless and to do something positive for our unborn child.
Tuesday, June 28, 2011
Post Op Week 3 Appointment
6-28-2011
Our post op week 3 appointment went well today. No changes from last week. Rachel's ventricles continue to measure normal with no signs of hydrocephalus. She was doing her "breathing exercises". We were able to get a nice view of the repair done on her spine. We also got our first full view of her face - she was smiling and has chubby cheeks. Ahhhh - so sweet- I needed that view of her. She was positioned on her knees and bouncing her butt up and down at times. My amniotic fluid levels continue to be good and no signs of membranes or placenta separating. We have scheduled our C-section for September 13th at 10 a.m. if all continues to go as planned.
I had my second glucose testing done last week Thursday. It was the 3 hour test. I had the orange flavored drink- tasted like an overly sweet melted orange popsicle. I did have the side effects of a headache and nausea from the drink. It amazes how much blood they took at each interval just for testing your blood sugar levels. All of my levels were good and well under the cut off marks each time. No gestational diabetes for me!!!! Yeah!! I was worried about that one since my maternal grandmother had developed type II diabetes as an adult and my dad has been borderline on his A1C testing for a long time now.
We took the girls with us to our appointment. They were very good and enjoy looking at the ultrasound images. Alicia puked on the way home from the appointment - thank God I had my latest knitting project with and was able to give her the bag to puke in.
At next week's appointment we will be meeting with someone from the spina bifida clinic at Children's Hospital.
Tuesday, June 21, 2011
Post Op Week 2 appointment
6-21-2011
We had our first post op appointment at the Maternal Fetal Care Center at Froedtert Hospital today. It is located on the 6th floor of Children's Hospital next to Labor and Delivery. Our appointment lasted about 2 hours- we had our weekly ultrasound, met with our nurse coordinator, and 2 other doctors that will be following our case and had our pregnancy glucose testing done. I did sign up for their Moms program which allows a medical student to come with you to all of your appointments and follows your case as an extra support person. (Both my husband and I are pro-learning and think this is a great opportunity for the medical student). They were also interested in scheduling our c-section at 37 weeks which would be around Sept. 7-10th if we are able to make it that long. We are 25 wks 3 days.
Rachel's ventricles continue to measure normal with no signs of hydrocephalus. She now weighs
1 lb 12 oz. We were able to get some nice images of her back this time also which shows the closure that was done. Her heartbeat remains in the 130's. My amniotic fluid levels were good with no signs of leakage, or any signs of separation of membranes or placenta.
My glucose testing just came back on the borderline of the high side - which means I need to have another test done to rule out the possibility of gestational diabetes. Geez - what's next?
We had our first post op appointment at the Maternal Fetal Care Center at Froedtert Hospital today. It is located on the 6th floor of Children's Hospital next to Labor and Delivery. Our appointment lasted about 2 hours- we had our weekly ultrasound, met with our nurse coordinator, and 2 other doctors that will be following our case and had our pregnancy glucose testing done. I did sign up for their Moms program which allows a medical student to come with you to all of your appointments and follows your case as an extra support person. (Both my husband and I are pro-learning and think this is a great opportunity for the medical student). They were also interested in scheduling our c-section at 37 weeks which would be around Sept. 7-10th if we are able to make it that long. We are 25 wks 3 days.
Rachel's ventricles continue to measure normal with no signs of hydrocephalus. She now weighs
1 lb 12 oz. We were able to get some nice images of her back this time also which shows the closure that was done. Her heartbeat remains in the 130's. My amniotic fluid levels were good with no signs of leakage, or any signs of separation of membranes or placenta.
My glucose testing just came back on the borderline of the high side - which means I need to have another test done to rule out the possibility of gestational diabetes. Geez - what's next?
Friday, June 17, 2011
Home Sweet Home
6-17-2011
We arrived back in Wisconsin late on Wednesday night. Our departing flight from Nashville was delayed slightly for a thunderstorm that was occurring - this was okay as it made our layover in Kansas City less. Both flights went well and I didn't have very much discomfort (I am sure the percocet I took helped with that). I gained a new respect for individuals who are wheelchair bound as many of the restaurants and shops in the airports are not equipped for wheelchair users and most everything is placed above the eye level making it impossible to look at things. I am grateful for the use of the wheelchair at the airports as I would not have been able to walk the distances needed to get from place to place. For the other moms who may have the surgery - I was very nervous about flying home and scared about the take off and landing of the airplane - the flights were much easier than anticipated - I did use one hand the entire time to cradle baby Rachel and my surgical site. The bumps from take off and landing were much better than the bumps felt in the car driving to and from the airport. I think the anticipation that I was going home to my girls also helped and that you do not have that pre-surgery anxiety with you. My husband guarded me like I was a piece glass ready to shadder (which in retrospect I kind of am). When we arrived in Milwaukee my brother-in-law Dave and my father-in-law Bill also were very protective and made our homecoming very pleasant. I can not express how great it was to see and touch my girls after being away nearly 3 weeks.
Our ultrasound on Wednesday before heading home went well. Baby Rachel's ventricles were still measuring normal (less than 9mm) and her Chiari malformation remained to be very slight. She was moving all extremities- we could see her moving her hips but it was hard to tell if there was movement at the knees as she had her legs crossed. She had urine in her bladder. My amniotic fluid was measured to be a volume of 12- there was no evidence of separation of membranes or of the placenta. I had my staples removed- that was not fun. My lower staples were slightly irritated but my incision was well approximated. I recommended to Mary that the mom needs a stress ball to squeeze while having the staples removed- it definitely stings but your incision does feel much better when they are out. I have steri strips in place and they do not seem to be irritating my "sensitive redheaded skin". My rash from the surgical prep and drape is nearly gone also. I am still having occasional painful bladder spasms but am hopeful they will resolve over time.
Our insurance company UMR is still continuing to deny coverage for the surgery- stating there is not enough evidence that the surgery helps with the disability of the lower extremities. We are going to appeal their decision. My husband has been doing research of other insurance companies that have changed their policies and approved the surgery as this is considered to be the new standard of care for spina bifida. We will keep you updated on the process and results with UMR as this may also occur to other families.
We arrived back in Wisconsin late on Wednesday night. Our departing flight from Nashville was delayed slightly for a thunderstorm that was occurring - this was okay as it made our layover in Kansas City less. Both flights went well and I didn't have very much discomfort (I am sure the percocet I took helped with that). I gained a new respect for individuals who are wheelchair bound as many of the restaurants and shops in the airports are not equipped for wheelchair users and most everything is placed above the eye level making it impossible to look at things. I am grateful for the use of the wheelchair at the airports as I would not have been able to walk the distances needed to get from place to place. For the other moms who may have the surgery - I was very nervous about flying home and scared about the take off and landing of the airplane - the flights were much easier than anticipated - I did use one hand the entire time to cradle baby Rachel and my surgical site. The bumps from take off and landing were much better than the bumps felt in the car driving to and from the airport. I think the anticipation that I was going home to my girls also helped and that you do not have that pre-surgery anxiety with you. My husband guarded me like I was a piece glass ready to shadder (which in retrospect I kind of am). When we arrived in Milwaukee my brother-in-law Dave and my father-in-law Bill also were very protective and made our homecoming very pleasant. I can not express how great it was to see and touch my girls after being away nearly 3 weeks.
Our ultrasound on Wednesday before heading home went well. Baby Rachel's ventricles were still measuring normal (less than 9mm) and her Chiari malformation remained to be very slight. She was moving all extremities- we could see her moving her hips but it was hard to tell if there was movement at the knees as she had her legs crossed. She had urine in her bladder. My amniotic fluid was measured to be a volume of 12- there was no evidence of separation of membranes or of the placenta. I had my staples removed- that was not fun. My lower staples were slightly irritated but my incision was well approximated. I recommended to Mary that the mom needs a stress ball to squeeze while having the staples removed- it definitely stings but your incision does feel much better when they are out. I have steri strips in place and they do not seem to be irritating my "sensitive redheaded skin". My rash from the surgical prep and drape is nearly gone also. I am still having occasional painful bladder spasms but am hopeful they will resolve over time.
Our insurance company UMR is still continuing to deny coverage for the surgery- stating there is not enough evidence that the surgery helps with the disability of the lower extremities. We are going to appeal their decision. My husband has been doing research of other insurance companies that have changed their policies and approved the surgery as this is considered to be the new standard of care for spina bifida. We will keep you updated on the process and results with UMR as this may also occur to other families.
Monday, June 13, 2011
Discharged from Vanderbilt
6-13-2011
I was discharged this morning from Vanderbilt. I have a follow up appointment on Wednesday morning to have an in depth ultrasound and staples removed. If all goes well I will be cleared to head home. After I return home, I will need to begin to be followed by a Maternal Fetal Medicine doctor at Froedtert as St.Mary's is not equipped to deal with as high risk of a pregnancy as I current have. From what I understand I will also be one of Froedtert's first fetal surgery moms.
For the other moms that may have the surgery- the first 3 days are definitely the hardest and then it gets much better. Listen to the doctors and your nurses. Take the sleeping pill when offered during the first nights- your brain will be so active with weird thought after weird thought that it is hard to fall asleep (I talked with the anesthesiologist regarding the overly active thought process and he reassured me this is normal after general anesthesia). Take all of your breathing treatments and regularly use your incentive spirometer- keep a pillow within reach to hold against your abdomen when you need to cough (changing positions will encourage your body to cough out the junk- cough it out- keep tissue near by to spit out the junk you cough up- I imitated my grandma and kept extra tissue in the front pocket of my hospital gown). Do not hesitate to call your nurse for anything - keep up with your pain medication and anti-nausea meds- after the PCA is dc'd you need to ask for your pain medication. If you start to have heartburn or indigestion- tell your nurse- they can get an order for pepcid for you (I needed this and it made a huge difference with the first dose). I had bleeding and spotting for 3 days after the surgery. They have the "lovely stretchy panties" and pads there that you can use. Take all of the stool softners, laxatives and suppositories they offer (I know it is totally embarrassing for you but you do not want to end up with a bowel obstruction). The first time one of my nurse's strongly encouraged me to get and walk- I thought she was crazy and that I wasn't ready but it was one of the best things I did and really helped me to get my "sea legs" back under me. The care the entire staff gives you is excellent - they all genuinely care about how you and your baby are doing. Bring your own pillow from home. The chair in your room for the dads is very uncomfortable with no neck support. My husband had a lot of nervous energy the entire time- encourage your guy to bring with some type of entertainment - send him on missions to get you things. One of the things my husband enjoyed doing was walking around the grounds of the hospital and taking pictures for our girls who were unable to come with and he liked trying to get video of the helicopters taking on and off. If you bring a laptop- they have a number that you can call to get internet access (you most likely will not need to call as both of our laptops picked up the network right away) The internet is fast enough that you could watch Netflix without interruptions. There was not much on t.v. unless you enjoy watching 3-4 hours of shows about people that hoard or the weird food addictions or Nascar. Speaking of shows - Baby's First Day on TLC is/was filmed at Vanderbilt.
I was discharged this morning from Vanderbilt. I have a follow up appointment on Wednesday morning to have an in depth ultrasound and staples removed. If all goes well I will be cleared to head home. After I return home, I will need to begin to be followed by a Maternal Fetal Medicine doctor at Froedtert as St.Mary's is not equipped to deal with as high risk of a pregnancy as I current have. From what I understand I will also be one of Froedtert's first fetal surgery moms.
For the other moms that may have the surgery- the first 3 days are definitely the hardest and then it gets much better. Listen to the doctors and your nurses. Take the sleeping pill when offered during the first nights- your brain will be so active with weird thought after weird thought that it is hard to fall asleep (I talked with the anesthesiologist regarding the overly active thought process and he reassured me this is normal after general anesthesia). Take all of your breathing treatments and regularly use your incentive spirometer- keep a pillow within reach to hold against your abdomen when you need to cough (changing positions will encourage your body to cough out the junk- cough it out- keep tissue near by to spit out the junk you cough up- I imitated my grandma and kept extra tissue in the front pocket of my hospital gown). Do not hesitate to call your nurse for anything - keep up with your pain medication and anti-nausea meds- after the PCA is dc'd you need to ask for your pain medication. If you start to have heartburn or indigestion- tell your nurse- they can get an order for pepcid for you (I needed this and it made a huge difference with the first dose). I had bleeding and spotting for 3 days after the surgery. They have the "lovely stretchy panties" and pads there that you can use. Take all of the stool softners, laxatives and suppositories they offer (I know it is totally embarrassing for you but you do not want to end up with a bowel obstruction). The first time one of my nurse's strongly encouraged me to get and walk- I thought she was crazy and that I wasn't ready but it was one of the best things I did and really helped me to get my "sea legs" back under me. The care the entire staff gives you is excellent - they all genuinely care about how you and your baby are doing. Bring your own pillow from home. The chair in your room for the dads is very uncomfortable with no neck support. My husband had a lot of nervous energy the entire time- encourage your guy to bring with some type of entertainment - send him on missions to get you things. One of the things my husband enjoyed doing was walking around the grounds of the hospital and taking pictures for our girls who were unable to come with and he liked trying to get video of the helicopters taking on and off. If you bring a laptop- they have a number that you can call to get internet access (you most likely will not need to call as both of our laptops picked up the network right away) The internet is fast enough that you could watch Netflix without interruptions. There was not much on t.v. unless you enjoy watching 3-4 hours of shows about people that hoard or the weird food addictions or Nascar. Speaking of shows - Baby's First Day on TLC is/was filmed at Vanderbilt.
Saturday, June 11, 2011
Ultrasound Post Op Day 4
6-11-2011
Our ultrasound went well today. Rachel was moving all of her extremities and had the hiccups. She had fluid in her bladder and was doing her "practice breathing exercises". My amniotic fluid volume was good and had increased from Wednesday's ultrasound. There were no signs of leaking fluids, separation of membranes or separation of the placenta.
We are going to try a prescription cream on my rash from the OR prep and drape. It is starting to get itchy in areas. (Mom- if you are reading this did you have reactions from the preps used on you during your different surgeries?)
My staples are dry and intact. I have one distal staple that is gets irritated at times with movement. I think the staples come out sometime next week.
Overall, today was a much better day. I am happy with my recovery process for today and am hopeful for tomorrow. We did talk with Dr. Carrol regarding restrictions for when I go home. I will be on bedrest and able to get up for about 15 minutes each hour. No lifting more than 5 lbs-no lifting grocery bags, no picking up stuff from the floor- very limited smart activities. We want to get past 28 weeks of pregnancy if possible and hopefully get to to 34-37 weeks. Steve and I adore Dr. Carrol and wish we could take her with us. She is very good at explaining what is going on and what to expect.
Our ultrasound went well today. Rachel was moving all of her extremities and had the hiccups. She had fluid in her bladder and was doing her "practice breathing exercises". My amniotic fluid volume was good and had increased from Wednesday's ultrasound. There were no signs of leaking fluids, separation of membranes or separation of the placenta.
We are going to try a prescription cream on my rash from the OR prep and drape. It is starting to get itchy in areas. (Mom- if you are reading this did you have reactions from the preps used on you during your different surgeries?)
My staples are dry and intact. I have one distal staple that is gets irritated at times with movement. I think the staples come out sometime next week.
Overall, today was a much better day. I am happy with my recovery process for today and am hopeful for tomorrow. We did talk with Dr. Carrol regarding restrictions for when I go home. I will be on bedrest and able to get up for about 15 minutes each hour. No lifting more than 5 lbs-no lifting grocery bags, no picking up stuff from the floor- very limited smart activities. We want to get past 28 weeks of pregnancy if possible and hopefully get to to 34-37 weeks. Steve and I adore Dr. Carrol and wish we could take her with us. She is very good at explaining what is going on and what to expect.
Surgery Recovery part 2
6-11-2011
Today's recovery is starting out better than yesterday. The lower dose of percocet seems to be working out better for me. I was able to take a longer walk with my nurse past the nursery. It was nice to see the babies in there and remind myself that Rachel will be here by the end of summer. I forgot how small babies were since my girls are so big now. I took a shower today and am going to take another walk with Steve soon. The labor and delivery nurses here have all commented that they are having a baby boom right now with all the deliveries that have been occurring this week. It is nice that the nurse's work 12 hour shifts and you have the same one during that time. I do have to say all of the nurses I have had have been giving excellent nursing care. I like that we set daily goals and work towards those goals.
My room is located on the 4th floor near the helicopter pads. There are 3 helicopter pads (maybe 4) and they are constantly bringing patients in- day and night. Last night was very busy- Vanderbilt is a trauma center. They have 2 music festivals going on this weekend which means an increase in patients in the ER and other areas.
We will be doing an ultrasound of Rachel later this afternoon. I will try to update those results. She has been moving around and keeping her heartrate in the upper 130's. We are in the time period when it is expected to have low amnioic fluid so we will see. On her ultrasound on Tuesday you could see her swallowing fluid. We are also in the time period that the baby goes through their own spinal shock from being operated on and may have problems with their bladders emptying. We are 24 weeks today and praying that all continues to go well.
Today's recovery is starting out better than yesterday. The lower dose of percocet seems to be working out better for me. I was able to take a longer walk with my nurse past the nursery. It was nice to see the babies in there and remind myself that Rachel will be here by the end of summer. I forgot how small babies were since my girls are so big now. I took a shower today and am going to take another walk with Steve soon. The labor and delivery nurses here have all commented that they are having a baby boom right now with all the deliveries that have been occurring this week. It is nice that the nurse's work 12 hour shifts and you have the same one during that time. I do have to say all of the nurses I have had have been giving excellent nursing care. I like that we set daily goals and work towards those goals.
My room is located on the 4th floor near the helicopter pads. There are 3 helicopter pads (maybe 4) and they are constantly bringing patients in- day and night. Last night was very busy- Vanderbilt is a trauma center. They have 2 music festivals going on this weekend which means an increase in patients in the ER and other areas.
We will be doing an ultrasound of Rachel later this afternoon. I will try to update those results. She has been moving around and keeping her heartrate in the upper 130's. We are in the time period when it is expected to have low amnioic fluid so we will see. On her ultrasound on Tuesday you could see her swallowing fluid. We are also in the time period that the baby goes through their own spinal shock from being operated on and may have problems with their bladders emptying. We are 24 weeks today and praying that all continues to go well.
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