After 5 years of marriage, Jeff and I were excited to welcome a baby into our family. At our 18 week appointment, we were shocked to discover our baby girl was diagnosed with Hydrocephalus. These are the details regarding her diagnosis and the first months and years…
May 2008 – Jeff & I are expecting our first baby girl in the coming months. I have a Step-son named Jordan who I love dearly. He spends most of his time with us and is a lively 8 year old.
At 18 weeks our Perinatalogist diagnosed the baby with hydrocephalus. The news has now sunk in, and we are moving forward.
I’ll keep our ventricle measurements here in case you are following our progress. For a frame of reference, normal vents should be between 6mm to 8mm each.
18 weeks – L-16mm, R-19mm
21 weeks – L-17mm, R-22mm (also fluid noted in 3rd ventricle)
24 weeks – L-19mm, R-28mm
27 weeks – There is so much fluid on the brain that they were not able to measure the ventricles. He said it is safe to assume that, “This is as severe as they come”. If he had to guess, he thinks they are probably between 40mm & 50mm. The head circumference is 29cm (7 weeks ahead of the gestational age). Also, the 3rd ventricle measures 10mm. Good news – she is actually head down now. We hope she stays that way!
30 weeks – The head circumference is 35cm which is 42 weeks (12 weeks ahead of the gestational age). 3rd ventricle measures 13mm. Probably going to do the c-section at 32 weeks. I’m just waiting for the date!
UPDATE – My c-section is scheduled for August 26th! Happy Birthday, Parker!
UPDATE Aug 28th – Parker Elizabeth Hendrix arrived at 8:03am on Tuesday, August 26, 2008 via c-section. She was 32 weeks, 6 days gestational age. The c-section was a bizarre experience but not nearly as scary as I had heard. Parker cried and kicked when she came out which was a welcome relief! I had received steroid shots several days prior to her birth to develop her lungs which is a big concern for preemies. In our case this was the perfect time to deliver. I was able to see her and give her a kiss for a minute before they took her to the NICU for scans, etc. Her head is extremely large (43 cm) and she does resemble an “alien” but she is my little “alien”. She weighed 5 lbs, 14 oz which is huge for an almost 33 week old baby. But, the majority of her weight is because of the fluid on her brain. As of 8pm she was down to 5 lbs.
I was able to make my way to the NICU around 12 hours after birth. My hubby, friends and family were so awesome. They took videos of her in the NICU and brought them for me to watch while I was recovering from surgery. And, they recorded my voice and played it for her. I hear she perked up when they did.
She received a vp shunt on Wednesday around 11am. The NSG said everything went perfectly and his job is done. Her fontanel is now soft which means the shunt is draining the fluid. It will probably take a good 3 months to drain all of the fluid because of the severity of her case. Slow is good when it comes to draining. We wouldn’t want to overwhelm her system.
At each stage they would tell me the best and worst case for what was going to happen. So far at each juncture the best possible outcome has occurred. She is able to breathe on her own which is very unusual even for a preemie without hydro. They only tube she has is small and is draining bile from her stomach.
She has a little personality already. She has these little grunts like she wants to communicate. She acts exactly like a normal newborn. The only thing they can find wrong is hydrocephalus at this point which is a complete blessing!!! It will be several years before the extent of the brain damage can be determined. Our best case scenario would be mild developmental delay (which could mean she would be caught up by the time she goes to school!). The worst case would be CP, mental retardation, etc. In either case she would still be a happy little girl which is the only thing that is important to me. God has decided that we are blessed with a special needs child. I couldn’t be happier.
The days ahead will be long. Her next milestone would be feeding. I’ll keep you posted on her progress.
And, we did bank her cord blood through Cord Blood Registry. I did check into Viacord but decided CBR was a better option for us. We do plan on the cord blood infusion by Dr. Kurtzberg when she is able to travel to Duke (www.fetalhydrocephalus.com).
UPDATE – Aug 29, 2008 – Today was a big day. Parker received her first milk via a feeding tube and I was able to hold her. Things continue to go well. Feeding is number one right now. And, next will be regulating her body temperature.
I will be discharged from the hospital tomorrow. I’m sure I’ll be a little sad to leave without her. But, we don’t live too far away, and I plan to camp out by her beside.
UPDATE – Aug 31 & Sept 1 – We have had a couple of bad days. On the 31st Parker had a brain bleed. They think it was related to being premature and not to the shunt or hydro. We’ll never know. They were unable to tell us how severe it was because of all the fluid on the brain. However, judging from the drop hematocrit levels, it was probably pretty severe. This would mean more brain damage for little Parker. And, on the 1st, her temperature spiked to 39 degrees C, which is quite high. She has blood drawn and a spinal tap to see if she has an infection. The initial results indicate she does not, but we are waiting for the final results in the next couple of days.
UPDATE – Sept 2nd – Today was a very good day! Parker is so alert. All of the nurses adore her and tell me how sweet she is. She knows my voice and seems to calm very easily when agitated. She does not like being moved, presumably because it is uncomfortable for her. We got to have “kangaroo time” today. That is where she lays on my chest skin to skin for about an hour. She loves it!!! It is awesome to hold her. She is my little angel. Words cannot express how much I adore her.
UPDATE – Sept 3rd – Another good day today. They are testing her to see if she can hold her body temp so she can come out from under the heater. She is able to do it for a little while and then she gets cold. Hopefully she will be able to regulate body temp soon. Also, we tried to breast feed today and yesterday. She doesn’t quite get the hang of that, but she did take 10 cc’s of milk from a bottle. I’m pumped (literally). The docs think she will probably get to go home in the next couple of weeks as long as things continue to progress. Also, we got a call from CBR (Cord Blood Registry). They were able to bank 234,000,000 cells!
UPDATE – Sept 6th – Things are going well. Parker is now able to regulate her body temperature. We are still working on eating. They have upped her feeds to 50cc’s every 3 hours. We are feeding her with a bottle about 3 times a day and using a feeding tube for the rest. She only eats 20 to 25 cc’s from the bottle, but we are progressing. They removed her uvc line into her belly button. And, they have not replaced it with a pic line. This means they do not anticipate having to supplement her feeds or give her any more antibiotics. This could change, but I am glad the docs are optimistic.
Soon we will be moving to the NICU Village. It is one step closer to going home. There are private rooms so I will be able to spend the night with her. Nurses will still monitor her feedings but I will pretty much be doing things like we were on our own. This is an exciting step. We are probably still a couple weeks from going home, but I am happy to move to the village. It will feel more relaxed there.
UPDATE – Sept 10th – We are now in the village. Parker is now in a big girl crib which gives her more room. I am pretty worn out. We did get bad news regarding her vision. They noticed her optic nerve is smaller than normal. After an invasive exam by an Ophthalmologist, he has diagnosed her with optic nerve hypoplasia. These cases can range from mild to severe. She also has nystagmus (shaking of the eyes) which indicates that her vision is significantly impaired. Eye problems are common with hydro babies and I’m not really surprised. I guess I was just wishing for the best. We also got a hearing test which she passed. I’m thankful for that!
UPDATE – Sept 19th – Wow. Things are not kicking into high gear. The village has been nice for us to grow closer as I am able to hold Parker as much as I want. We are still working on our feedings, taking approx. 40% by bottle now which is a drastic improvement from just a couple of days ago. I think we will be at 100% in no time. But, time is of the essence. We are going forward with the cord blood infusion at Duke (http://fetalhydrocephalus.com/hydro/Infusions-1.aspx). Because they find the best outcomes when the infusion occurs within a month of birth, we are being released from OU Medical Center early. Our Attending Physician has been wonderful and has weighed the possibilities of the cord blood with keeping us here until Parker is able to feed 100% from the bottle. She is bending some rules to release us before she normally would. So, we are scheduled to be discharged on Sunday (9/21). We will have a home health nurse come by our house to ensure Parker is progressing and we are able to tube feed her properly (which is an important thing b/c she could aspirate if not done correctly). Then, on Sunday (9/28) we are flying to Duke University for her cord blood infusion on Tuesday (9/30) and should return on Wed (10/1). I was a little shocked at first when I learned we were ready to be released, but now I am really excited. The coming weeks will be a challenge, but we are up for it!
UPDATE – Sept 24th – We are home. I sort of miss the hospital. It seemed that things were more organized there. But, it is a relief to have Parker home. I’m pretty sure my living room is a mini-hospital. There are supplies everywhere! I am excited about travelling to Duke on Sunday, but nervous as well. I don’t even want to think about packing all of her necessities. I’ve also received some very troubling news about my grandmother. She has an inoperable foot long cancerous tumor that is on her ovary, colon and kidney. She is 92 and a total spit-fire. I am the only grandchild and have an extremely close relationship with her. This news is devastating. So, grandma has not told my mother or I the details about the tumor. She tells us it isn’t a big deal. The doctor talked with my mom and said that Grandma may make it to Christmas. Tears are falling as I write this because I don’t think I can handle one more thing. Also, our discharging Attending Physician at OU Medical Center told us it is very likely Parker will remain an infant mentally forever. We have heard her prognosis numerous times but it was never this bleak. We are going to prove her wrong.
UPDATE – Oct 3rd – We are back from North Carolina. Parker was not at all troubled about flying. I wish I could say the same for her mother. 😉 I was pretty nervous and stared at her the entire flight. I wanted to make sure she wasn’t affected by the pressure. She slept most of the time. Also, while we were gone she seemed to eat more from the bottle. The docs at Duke joked that she likes North Carolina and she should stay there. We arrived on Sunday after getting up at 2:30am for the trip. Needless to say Sunday was a hectic day. On Monday we took Parker to Duke University Hospital for an exam. A Nurse Practitioner checked her out and we were done within an hour. We walked around the Duke campus (my hubby had to check out the basketball court – “the mecca” as he calls it). It was just beautiful. Parker’s procedure was on Tuesday. The cord blood infusion only took about 15 minutes total. They put an IV in her arm and infused the blood. They kept her for four hours thereafter to make sure everything was okay as there was a possibility of an allergic reaction to the preservatives. She had no reaction and the procedure was relatively easy. We left on Wednesday morning. We will never know if the cord blood will repair some of Parker’s brain damage, but we had to do everything we could to help our little one.
UPDATE – Oct 12th – Things are pretty quiet around here. I guess that is a blessing. Parker is my little piggy. She weighed 8 lbs, 1 oz last Monday. She gained almost a pound in two weeks! We took her feeding tube out shortly after we returned from North Carolina and haven’t looked back. She tells us every three hours that it is time to eat and does so with vigor. Our Pediatrician says that except for Parker’s head circumference she acts/looks like a perfectly normal baby. We have our next Neurosurgeon appointment in November. I’m curious to see if her brain has expanded since her shunt surgery and cord blood infusion. I read this bizarre article (http://en.wikipedia.org/wiki/Hydrocephalus under the heading Exceptional Case) about a 44 yr old French man whose brain was almost totally compressed by fluid. He led a pretty normal life and was totally unaware of the problem. Makes you wonder how many other people are walking around with this same condition and don’t even know it.
On another note, my Grandmother (GiGi to Parker) has finally come clean about her condition. She has said that she is ready to go and is at peace with the diagnosis. She feels fortunate that she was able to meet Parker as many of her friends didn’t live long enough to enjoy their great-grandchildren. She is a remarkable woman. Parker’s middle name is Elizabeth for my Grandmother. We named her well before I knew either of their prognosis. I feel that these two are connected and are strong women. It makes me ill to think that my grandmother won’t be around long enough to see Parker blossom, but I am glad they were able to meet.
UPDATE – Nov 6th – We went to the Pediatrician today. He is pleasantly surprised with Parker’s progress. With the exception of the size/shape of her head she is on target for a 2 month old. She now weighs 10 lbs, 1 oz and we can discontinue adding extra calories to my pumped milk. She is 25% in weight and 50% in height. I couldn’t ask for anything more. (Okay, maybe more sleep)
Our early intervention specialists see Parker at least once a week. We have a Nurse, Physical Therapist and Eye Specialist. They also are very shocked at her “normalcy”. Being able to lift her head is going to be a challenge but we are up for it! She has very strong neck muscles considering the size of her head. She surprises me every day.
Unfortunately I go back to work on Nov 17th. We are taking Parker to a daycare that specializes in Special Needs children. They are working with the early intervention folks and will continue her exercises thru the week. I have met with the teachers and feel very blessed to have such wonderful people taking care of Parker. Luckily my office is right around the corner from the daycare so I plan to visit as much as possible. It will be a huge transition for both of us. I’m sure it will be harder on me than her. 😉
UPDATE – Nov 17th – Well, today was my first day back to work. I had taken Parker to daycare a couple of days last week to get both of us acclimated. It seemed easy enough last week. Was I wrong. I totally had a melt down this morning. It pretty much started as soon as I jumped in the shower. It has just hit me that someone else will be hugging her more than I. Quite depressing. I know many women do it, but I’m not sure how. Oh how I wish I was independently wealthy…
We had a Neurosurgeon appointment last Thursday. It took me longer to valet my car than it did for the entire exam. He looked at her shunt and said everything looked good. He wants to do a MRI in March when Parker is 6 months old. He said we probably wouldn’t see much at this point so he wanted to wait. I am pretty antsy and want to see what is going on in that pretty little head of hers…but I can wait. They have to sedate her for the MRI and I’m not looking forward to that at all. I guess we’ll just sit back and watch her progress.
UPDATE – January 6, 2009 – It has been a crazy few months. Parker had an appointment with the Pediatric Ophthalmologist mid December. He has down-graded her Optic Nerve Hypoplasia to mild which is wonderful news. Technically, the optic nerve is not supposed to improve, but his comments were a lot more positive than they were when we were in the NICU. I have to think that the cord blood infusion has helped her vision. There are studies in China with a similar disorder that have showed promise. The US doctors aren’t quite on board yet, but maybe they will get with the program soon. In any case, Parker will be visually impaired, but the extent to which may be better than we thought. He said her vision would probably fall somewhere between 20/100 and 20/200 which seems to be a great variance. You have to be 20/80 to drive, and I wish they had glasses to show me what 20/100 looks like. Maybe they exist? I’ll have to ask.
Parker is gaining head control and doesn’t wobble nearly as much. She started to laugh two days ago. What a wonderful sound!!!! So far she is keeping up with her corrected age (due date age – Oct 15th) development. Only God knows what the future holds but everything is going well so far.
On a very sad note, my Grandmother passed away yesterday. She had been hospitalized 3 weeks ago and it was apparent she was not going to be able to go home pretty early on. Her spirit was so vivacious and it will live on with Parker. It was very difficult to watch her deteriorate recently as I always thought she was invincible. We did have several special moments just days ago and I will cherish every moment forever. She was very spunky and had a peaceful end. There will be a void in our lives, but at least Parker has the best guardian angel ever!
UPDATE – February 18, 2009 – Wow! It is hard to believe that Parker will be 6 months old next week. Things are going so well. She has already met her 8 month Sooner Start (Early Intervention) goal of being able to sit with assistance and hold her head up. She is a champ in her Bumbo. We are writing new goals more in line with her vision issue because she is almost caught up with the physical development aspects. Her head is still rather large (45 1/2 cm) and has dramatically changed shape. It used to be really wide and now it looks more like a “conehead”. She is able to roll from side to side and has rolled from tummy to back a couple of times. This may not sound like a big deal, but when you consider the size of her noggin, it really is quite an accomplishment.
We work with her daily with a light box to help stimulate her vision. At this time she relies mostly on her hearing. Since introducing the box, she is able to track objects way more than she ever did before. We are so proud of her. There is no doubt that she will be visually impaired, but she is getting so much better! Maybe she will be able to drive after all???
Our latest joy is that she is able to transfer a toy from hand to hand. (and then she puts it in her mouth) I’ve heard this is early for her especially considering she is really only supposed to be 4 months old (corrected age – due date 10/15).
Parker had a MRI last week. She had to be sedated which caused me a little angst. Her NSG just wanted to see the progress in her brain development. I told my hubby that I didn’t care what he had to say because she has been doing so well (infant forever, my ass). According to the NSG (direct quote), “The front part of her brain is NORMAL.” I was shocked, and I think he was too. There is still fluid in her Occipital Lobe. He does not think this will drain further as it is taking up space for parts of her brain that did not bounce back. The Occipital lobe handles vision. We were already aware of her vision problems so this isn’t new news. All in all we are totally pleased with the results.
UPDATE – March 4, 2009 – So I get the progress notes from the MRI and I have to share. Some of the NSG’s wording is funny…
History of Present Illness: This little girl is being followed for a shunt. She had massive hydrocephalus. A shunt was placed at birth. She is now actually developing nicely.
Physical Examination: Her head circumference is 45 cm. She has a very dolichocephalic head with a towering occiput.
Review of Studies: Her MRI shows that her ventricles are actually decompressed nicely. She has an interhemispheric area, which I think is part of her ventricles suggesting that this is schizencephaly, at least posterior, but the front part looks much better. Overall, things look better.
Assessment and Plan: I would like to see them back in six months without imaging.
And, this is the letter he sent to our Pediatrician:
Dear Dr. Albiek,
Thank you for the opportunity to see Parker. She seems to be developing nicely. Her imaging confirms that her shunt is working well, and overall I think that she is doing better than anticipated. ….
I’m not sure what I expected, but I thought there would be more formality to the notes.
FYI, a dolichocephalic head with a towering occiput means she has a cone-shaped head that protrudes really far in the back. And, Schizencephaly is a “rare developmental disorder characterized by abnormal slits or clefts in the cerebral hemispheres.” The prognosis for this condition is about the same as hydrocephalus – mental retardation, hemiparesis, quadriparesis, hypotonia, seizures and hydrocephalus (duh).
UPDATE – 4/7/09 (Parker is 7 months!!) – Things are pretty quiet around here. Parker finally started sleeping through the night last month. (Thank goodness!!) She is now able to roll over both ways and is imitating sounds. She will probably be crawling in no time. And, she is almost able to sit unassisted. So far she is keeping up with her developmental milestones for her corrected age. We couldn’t be more proud of our girl!!!
UPDATE – 6/17/09 (Parker is 9 months, 3 weeks / 8 months corrected age) – I guess my daughter is no longer visually impaired!?!?!?!?!?!? We had an appointment with the Pediatric Ophthalmologist yesterday. He says that her vision is on par with her corrected age. He does not think she needs glasses now or in the near future. I asked him about the Optic Nerve Hypoplasia. He says he would no longer give her this diagnosis. He was also shocked because he read about her Schizencephalic cysts in her Occipital lobe. He said this should cause at least Cortical Visual Impairment, but at this time, it is not the case. I had thought her vision had improved greatly but love the reassurance from the expert.
She is army crawling like a pro and very hard to contain. She has taken a couple of crawling steps but finds it faster to just army crawl about. She is pulling up on objects and can stand un-aided for as long as she wants to. So far, she is totally keeping up with development for her corrected age.
We are going back to Duke for a second cord blood infusion in August. My hubby and I discussed that we might not go back because she is doing so well. But, we figure that it can’t hurt and may give her a little development boost. So, we are off!
Here are some YouTube videos:
Parker climbing a step –
UPDATE – September 4, 2009 – We went to Duke at the beginning of August. Parker started waving the night of her infusion. I’m sure it is just coincidence, but it was a little creepy.
On August 26, 2009 we celebrated Parker’s 1st Birthday. I got emotional and was surprised by that. I’m normally a rock but I get choked up thinking about how far we have come in the last year. Even in my wildest dreams I could not have imagined how well she would be doing. It is like watching a miracle right before your very eyes. She learned to clap that night. I was a little worried because she hadn’t picked this up yet. My husband joked that maybe she just hadn’t found anything worthy of clapping about. 😉
Each week for the last year we have worked with a Nurse, PT & a Vision Specialist. Early intervention has concluded we no longer need a Nurse or Vision Specialist and are only keeping the PT on until she walks. This was another emotional day. Parker and I have become very attached to these very special people. I am extremely excited that Parker is doing so well that they are no longer needed. But, it is sad to see them go.
There is a MRI scheduled for Tuesday (9/8). There is some debate as to whether she is missing some of her corpus collasum. It doesn’t really matter to us because of how well she is doing.
I’ll leave you with some videos of our fantastic girl –
Pulling up and crawling –
Happy Birthday song (yes, I get choked up)
Love that face
UPDATE – December 6, 2009 (Parker is 15 months old / 13 months corrected age): I guess I’ll begin with the results from the MRI Parker had in September. It showed that there is less fluid in her ventricles and more brain matter than in February. It also confirmed the diagnosis of Schizencephaly. She has a large fluid filled cyst that is in her Occipital and Parietal lobes (filling up space where there was brain atrophy as a result of such severe hydro in the womb). If we listened to generally accepted medical philosophy, she should be cortically visually impaired at the least. However, her eyesight is now great! It was obvious when she was little that she was visually impaired. But, magically she is now able to see. And because of the cystic structure, her corpus callosum is not evident in the back hemisphere. So, she also has partial Agenesis of the Corpus Callosum. There may be things that she isn’t able to do down the road. But at this time there doesn’t seem to be any impairment with this issue.
Parker has always done really well with her gross motor skills. I have had no doubt that she would be able to walk etc. But, I was more concerned with her intellectual development. I am constantly amazed by her progress in this area. She is one smart cookie, if you ask me. When asked, she can point to her mouth, belly, hair and ear. She makes animal noises (chicken, dog, snake) and her latest favorite is the growl of a monster. If you ask her if she is a “Silly Goose” she will shake her head and say no. (it is really more like na, but we’ll take it) No is by far her favorite word, but she also says ya (for yes), hi, bye, mama, dada, and turtle. She tries to repeat about everything you say to her. Peek-a-boo is still a favorite and she loves to “dance.” She can clap, wave, and blow kisses. Parker is a hoot to say the least.
Now for some not so good news. Parker had her first seizure on October 26, 2009. It was not obvious at all. It was just her and I home one Monday night. She was just fine and then I noticed she was getting lethargic. She vomited and became limp. The ambulance arrived and took us to OU Children’s Hospital. We all assumed it was a shunt malfunction. But, once we arrived, the ER docs said that the symptoms don’t normally present that quickly and a CT ruled out shunt issues. Then, her right foot started tapping. The seizure crept up her right side and it became evident that she is now epileptic. We spent a couple of days in the hospital and are now on anti-convulsant medication (Trileptal). She has Complex Partial Seizures. With the Hydro diagnosis, there is about a 50% likelihood of seizures. And, Schizencephaly also has a 50% chance as well. Given that she has both conditions, our Neurologist told us long ago that seizures were almost a certainty.
We feel extremely fortunate that the medication has deterred any other seizures as well as it does not stifle her personality. We were really concerned that the drug would make her drowsy, etc. I know that she could build up a resistance to this medication and we may have problems in the future finding just the right dose/med/cocktail of meds. But, for now we have dodged a big bullet.
Miss Parker is taking a few steps now, so I’ll leave you with the latest videos:
from September – clapping and pushing her toy:
standing up by herself:
UPDATE – April 26. 2010 – Parker is 20 months old
Well, Parker is now considered “normal” by her Early Intervention therapists. She has been released from their services. She started walking in January and continues to amaze me with her cognitive abilities. She follows commands and has a vocabulary of over 60 words (growing every minute it seems). With such progress, Early Intervention felt like she was meeting milestones of babies a couple months ahead of her actual age.
She has had a couple more seizures but nothing as severe as the first. Her medication is working well which is a big blessing. But, this is just a little bump in such an overwhelming road. Her Neurosurgeon, Neurologist and Pediatrician continue to be amazed by her progress. We are so fortunate. I didn’t know it was possible to love someone as much as I love my girl. She has such a sweet disposition.
I better run, I hear Parker in the other room telling her big brother, “I’m gonna getcha!”
UPDATE – January 6, 2011 – Parker is 2 years, 4 months old
It seems like ages since I have updated. I guess that is because things are “normal”. My little munchkin is such a funny girl. She makes me smile everyday. Christmas was so much fun this year. She was so in awe of the Christmas tree and the decorations. She loved seeing Santa Claus. It was so fun watching the holidays through her eyes.
Parker had Strabismus surgery in August to correct a misalignment of her eyes. It is a very common surgery and was very easy compared to brain surgery. 😉 So, our latest report from her Ophthalmologist is that her vision is completely normal. We have also had routine visits with our Neurosurgeon and Neurologist who all comment on how amazed they are by Parker’s progress. She is our miracle.
Parker talks in complete sentences. I pretty much understand everything that she says. She is really soft spoken which is the complete opposite of her Mother. Here is a video of her “screaming” that we took during Halloween. Get ready to be scared –