Update 12/9/11

Well we are at chuck e cheese and Abby and Austin are off playing games so I thought I'd take a moment to update the blog.

Let's see...what's new? Well we got a call last week saying maddie needed a liver biopsy because her liver functions were not improving. So we scheduled the biopsy for the 8th. We already had an ID appointment on the first and were scheduled to get her hearing aids on the 2nd.  They told us she needed an ultrasound and blood drawn before getting the biopsy so we did that on the 1st as well.  Then we got a call on Monday this week with the results of her labs. They said that her liver enzymes had gone back down and her total bilirubin was around 1.5 (I can't remember the exact number).  Because of this, they cancelled the biopsy!  Yeah!  What a blessing!

The ID appointment was just a check up. We told them we had discontinued use of the valganciclovir because we felt there were just not enough studies to prove that cancer wasn't a consequence of long term use. They said that was fine and that we wouldn't need to see them anymore unless we changed our minds.

The hearing aid appointment was great!  We got Maddie's loaner hearing aids which are 2 different colors.  She said that if we wanted the same color, we would have to get a lower model aid. It didn't matter to me because when hers come in, they will be pink!  The hearing aid brand is Phonak and the model is Naida.  I have researched these and apparently they give them back 80 decibels of sound!  Maddie really seems to be responding to them!  The first time we put them in, she just cooed like crazy!  I have been praying daily for God to allow Maddie Kate to hear and what an amazing blessing we have received!

Maddie Kate listening to music

Watch "Maddie Kate with her new hearing aids" on YouTube

Update 11/29/11

Well we got snow here in Jackson yesterday and today.  I can't remember the last time we've had snow in November!  Abby enjoyed it.  We're going to have to get her some snow boots though because she's grown out of hers from last year. 

We go Thursday for an appointment with Infectious Disease.  We decided to take Maddie off the valganciclover because the drug is still relatively new and not enough studies have been done to prove that there is no cancer risk in humans.  I just don't want to take the chance.  Also Maddie has an appointment on Friday to get her hearing aids.  I am anxious to see how she does with them!  Also, we found out yesterday that she is going to have to have a liver biopsy next week because her liver enzymes are not improving.  I guess they just want to be on the safe side and make sure nothing serious is going on.

Other firsts:  Maddie Kate laughed for the first time today!  I had her sitting in her Bumbo seat and we were playing patty cake when it happened.  So cute!  I wish Austin could have been there to see it.

I guess that is all for now.

Well...

...I guess I jinxed it.  Maddie not only did not sleep through the night last night, she didn't even sleep 6 hours straight!  I think that is because she slept so much during the day yesterday.  Maddie is not usually a great napper, but she took 3 really long naps yesterday.  The last one lasted over 3 hours!  We'll try to get her to sleep through the night again tonight.   We'll see what happens.

Sleeping Through the Night!

I don't want to jinx it, but I would say that Maddie Kate is officially sleeping through the night!  Last night she went down somewhere between 8 and 9.  She woke up at 2, but I was able to give her pacifier to her and she went back to sleep until 5 am!  She ate for maybe 5 min at 5 am and then was asleep until after 7.  Hopefully we have a repeat of that tonight.  I've tried dropping her early morning feed by using her pacifier before, but it hasn't worked until now. 

Austin has been working a lot lately.  We figured out that he was only home 3 nights this past week.  One of those he went straight to bed and another 1 we used to drive to Memphis to get a buffet we found on Craigs List.  So until tonight, we have basically only had 1 night home as a family.  It has been crazy and very exhausting for both of us.  I told Austin that I have felt like a single mother this past week.  He is on vacation for the next week and we will be heading to Nashville to my dad's on Tuesday night to stay for a few days.  We originally were going to go somewhere like Hot Springs, AR or the Biltmore, but it didn't work out. We just figured it would be too soon for Maddie Kate to travel that far.  So we decided to just vacation in Nashville.  It's not much of a getaway for dad and Darlene, but at least they are off work!  We will probably plan on seeing the Christmas lights at Opryland and the new Madagascar ice exhibit.  I think dad and Austin will probably go fly fishing one day.  And we may take Abby to see The Lion King in 3D one day. 

Update 11/11/11

Hello all.  Sorry it has been two weeks since I last updated.  Madelyn's doing well.  She has her good days and her bad days.  Today has been a good day so far.  She has followed her schedule pretty much to a tee and has slept and ate well.  Tuesday was a bad day...she probably only napped for an hour or so all day.  Madelyn is still rolling over from front to back.  She did it consistently for about 4 days this past week, but she hasn't done it at all the past day or two.  Maddie also is smiling consistently now in response to faces.  She coos some too although it doesn't seem to be in response to any faces.  She has also started to bat at objects hanging near her.  You wouldn't know that she was deaf.  She acts like any other baby...she just doesn't react to sounds.

Other news, we went to the pediatrician last thursday 11/3/11 for Maddie Kate's two week checkup.  She is right on track and is around the 20th percentile for height, weight, and head circumference.  He said she looked perfect!  Maddie was not happy when we left that day because she had to have more blood drawn as well as get three shots in her legs for her immunizations.

We met with our teacher for the first time on Tuesday.  She seemed really nice, however she did not know sign language.  We were told that our teacher was supposed to teach us sign language, but how is she supposed to do that if she doesn't even know it.  She says she is supposed to take a sign language course, but I could probably learn it just as fast on my own using the internet!

Abby is doing well.  I try to make sure she has some one-on-one time with mommy every day so that she doesn't get jealous.  She likes Maddie Kate but is only interested in her some of the time.  Abby is enjoying mother's day out twice a week.  They are currently working on Christmas songs for a Christmas program they are doing this year.  I can't wait!  One of the songs they are singing is Jingle Bells which Abby calls Jima Bells.  They are also singing "We Wish You a Merry Christmas", "Away In a Manger", and "Go Tell it on the Mountain."  I can't wait!  She is going to be so cute!

Update 10/28/11

Don't believe me when I say I'm going to update the same day I guess.  Madelyn's doc appointment was fine on Wednesday.  No new news.  The doc thought her skin and eyes looked less yellow but drew more blood to verify levels.  She wants her to continue her medicine until her bilirubin levels are completely back to normal.  We don't have to have another visit with her for 2 more months.  I also asked her about the risks of taking valganciclover and she said that Madelyn should be fine.  The studies I was worried about talked about fertility and cancer issues in lab rats, but the doc said they give them an extremely high dose of the medicine, far higher than we would ever give a human.  In fact, cancer is shown in many studies of drugs on animals for that very reason.

Other than that, Madelyn is doing good.  She is only waking up once a night to eat now, finally!  She is on a pretty good schedule.  She is a touchy baby, however, and has a hard time falling to sleep if her schedule isn't followed just right.  Hopefully she will grow out of that soon.  I'm just glad to be getting some sleep in the meantime. 

Update 10/26/11

Last week Maddie Kate had two doctor appointments.  The first appointment was with infectious disease.  We decided in that appointment to continue Madelyn's treatment with ganciclover through 6 months of age.  There is an unpublished study that shows possible benefits in reducing developmental delays with prolonged treatment.  For now we are continuing the treatment but I do have a few more questions about the drug that I want to discuss at our next doctors treatment.  I just want to make sure that there are no serious side effects with long term use of the drug.

The second appointment was for a hearing aid fitting for Maddie Kate.  The hearing aids fit around the ear and then have a little mold that fits in the ear.  We chose clear molds but a pink hearing aid for her. 
She is going to be so stylish!  Because TEIS (Tennessee Early Intervention Service) is paying for the hearing aids, it could take several months for them to come in.  In the meantime, Vanderbilt will provide loaner hearing aids for Maddie.  We will probably have to come back in a couple of weeks once Maddie's molds come in and get the loaner hearing aid.  She will then have to have new impressions taken since her ears are growing so fast.  In fact she will have to have new impressions taken every time she goes in to get new molds which will be about every 3 - 4 weeks. 

Today we have an appointment with the GI doc.  I will let you know how that goes later on today hopefully.

Maddie Kate rolled over!

Just wanted to let y'all know that Maddie Kate rolled from front to back two times last night during tummy time right before her bath.  She was really unhappy about tummy time so I think she just got mad enough to roll over!  I haven't been able to get her to do it today though. 

Update 10/9/11

Hey all.  A lot of people have been wondering how we are doing and wanting an update.  We are doing well right now.  Things are relatively normal around here.  Maddie Kate acts like a very normal baby.  She has been going through a little bit of a colicky phase lately and has been very fussy in the early evening hours.  She usually calms though after her late evening feeding and sleeps very well at night.  She of course still wakes to eat, but then she goes right back to sleep.  I remember Abby going through this phase as well.  From everything I've read, it is just a phase and she will grow out of it.  Abby is actually doing really well with Maddie Kate...even when Maddie is being fussy.  It's funny because I thought Abby would be jealous if I was having to hold Madelyn a lot to get her to stop fussing, but she's not.  In fact, if Maddie Kate is crying and I'm not holding her, Abby makes sure I know that Maddie Kate is crying and I need to hold her and get her to stop.  She does not like Maddie Kate crying at all.  She will scream at Maddie Kate over her cries, "MADDIE KATE! IT'S OKAY! YOU'RE OKAY MADDIE KATE!"

We had Madelyn's blood drawn on Wednesday.  I had Austin look on the computer for the results.  Her neutrofil count was up to 3500 from where it was at 930 the week before.  That means being off the IV ganciclover has helped.  Also her bilirubin was down to 6.9 from 8.0 and her liver enzymes were also down by at least half.  This is all good news.  Madelyn is currently on three different medicines.  One is the oral ganciclover, the second is a vitamin, and the third is called ursodiol which is what is helping her liver enzymes drop. 

Friday I met with a representive from TEIS (Tennessee's Early Intervention System).  This is an early intervention system through the department of education that helps prepare at risk children for school.  Because of Madelyn's hearing impairment, she qualifies for this service.  A teacher will come out once a week and work with Maddie Kate on developmental skills, even as a baby, and will also work with Abby and I on sign language.  We are lucky to live in Jackson which has one of the only two schools for the deaf in the state of Tennessee (the other one is in Knoxville).  The teacher will submit reports to the WTSD (West Tennessee School for the Deaf) and when they feel Maddie Kate is ready, they will have her start attending classes there.  She will start there no later than age two.  Abby and I will also be able to go there to learn sign language.  Madelyn will need this service even if she gets cochlear implants because the hearing is not as good and is not the same with the implants.  She may need to do some signing still in order to communicate.  I guess that is all for now!

Maddie Kate in her swing

Abby and Maddie Kate

Update 9/29/11

Well Maddie Kate will be 4 weeks old tomorrow.  Can you believe it?  Time sure has flown by.  Well we have a lot to update today so this will be a long blog.  Bear with me.

On Tuesday 9/27 Maddie Kate had two appointments.  Her first appointment that day was with Infectious Disease (or ID).  What we found out from ID is that her neutrofil count (which is the part of her white cells that fight infections I believe) has dropped.  Her count was 1064 and they didn't want it to get below 1000.  So what they decided was to see what her neutrofil count (or ANC) was on her next set of labs to determine the next steps.  If her ANC had dropped again, they would have us discontinue the IV form of ganciclover and switch to an oral form.  The oral form is called Valganciclover and does not get absorbed into the blood as readily as does the IV form of the medication.  Because of this, her ANC should recover as her blood isn't receiving as high of a dose.  If it doesn't recover, they will stop treatment altogether until it does recover and then may or may not continue treatment.

I received a call from ID today stating that her ANC had dropped to 930 from the labs drawn yesterday and so they are going to remove her PICC line and switch her to Valganciclover (orally).  The home health nurse is going to come by at some point tomorrow with a colleague of hers to remove the PICC line and I am going to pick up my prescription for the oral medication tomorrow.  I will have to give it to her 2 times per day just like the IV form of the medicine.  She will continue on the oral form for the remaining 2 weeks of treatment and potentially longer if they feel it will help.  One of the ID doctors provided us an article on the effectiveness of treatment with Valganciclover, but I have not had a chance to read it yet.  We will follow up with ID at Vanderbilt in 3 weeks on 10/20/11.

Also on Tuesday 9/27, Maddie Kate had an appointment with opthamology.  Her exam was perfectly normal and the doctor does not need to see her again unless for some reason ID thinks she needs another eye exam.  So yeah! One less doctor to see!

On Wednesday 9/28, we had 2 more appointments.  One for audiology and the other was for the GI/liver doctor.  Her ABR exam with audiology showed that Maddie Kate cannot hear out of either ear.  Her exact diagnosis is Bilateral Profound Sensorineural Hearing Loss (google it).  She had hardly any brain response to the highest level of sound the test could do which was 95 decibals (as loud as a jackhammer).  Here is some general information I copied and pasted from a website about her hearing loss:

       Bilateral means that both ears have a hearing loss.


       Profound means that the hearing loss is 90dB or greater. This means that the child may not be able to
       hear anything softer than 90dB.

       Sensorineural means that the cochlea or auditory nerve isn't working correctly.

       A child with this much hearing loss may not be able to hear much, even with hearing aids. So he may
       not be able to learn to speak through hearing alone. He may benefit from using sign language and by
       reading lips. He may also be a candidate for a cochlear implant.

We will return to the audiology clinic in 3 weeks (also on 10/20) to have Maddie Kate fitted with hearing aids.  She will not be able to understand spoken words with this but may be able to hear some very loud sounds with it.  We plan on having her receive a cochlear implant, but she will not be able to receive one until she is 1 year of age per the FDA.  The hearing aid serves two purposes.  One is it will hopefully allow Maddie to hear some sounds so that her nerves continue firing responses to the brain and not sit idle for the next year while we wait on the implant.  And two, before insurance will pay for the cochlear implant, they require proof that the hearing aids didn't "do the trick." 

When Maddie Kate does get the implant, she will need extensive speech therapy to help her translate what she is hearing to words as well as to catch up with her peers.  I asked the audiologist if she would be able to hear normally after the implant.  Her reply was that yes she would but that it may be the low end of normal.  Many children after having the implant are mainstreamed by kindergarten meaning they are ready to join their peers like a normal child by kindergarten.  With us catching it so early and with me being able to stay home and work with her on a daily basis, we have no doubt that we can get Maddie Kate to this level by kindergarten.

Finally Maddie Kate saw the GI (gastrointerologist) doc yesterday afternoon.  The GI doc said that her bilirubin was still elevated being at 5.7 but that it was steadily going down which was a good thing.  She would like it to be around 1 (or 3 is okay while she is breastfeeding).  She expects it to return to normal levels in the next month.  Maddie's liver enzymes are also elevated which the GI doc said could remain elevated and could fluctuate over the next year or even longer as Maddie's body works on suppressing the virus.  So thus far everything looks right on track for where she expects Maddie to be right now.  We will see her again on 11/9/11.

Austin and I are handling the news just fine.  We new that hearing loss or deafness was definitely a possibility.  The news is disappointing, but is something that we can deal with.  We are very blessed to have a wonderful support group with our family and friends and to have the means for me to stay home with our children.  There are so many worse things that could have happened with a CMV infection so if hearing loss is all we have, then we are pretty lucky.  Please continue to pray for us as I'm sure this next year will be very trying.  As I look back on our lives thus far, I can see how God has helped prepare us for this time.  For example, I decided to become a teacher and taught for 5 years in inclusion classes that included students with special needs, Austin decided to become a physician, and the fact that we made the decision for me to stay home this year instead of returning to work.  I believe God led us down these paths so that we would be able to give the best care to Maddie Kate as possible. 

Jessica

9/21/11

Sorry that it's been awhile since I've posted.  Things have gotten a little busier around here lately.

Home health came out on Monday to draw blood for Madelyn's labs and do all of her measuring.  Maddie Kate now weighs 7 pounds 6 ounces and last Thursday she was 7 pounds 3 ounces.  The nurse was not able to get the blood from Maddie Kate's PICC line so she had to prick her foot.  :(  She also had to change the dressing on Maddie Kate's PICC line which she did not like at all!  After the nurse left, she called us and said that her blood had clotted on her way to the lab and that we would have to have to blood redrawn.  So I took Maddie Kate to the hospital after lunch Monday and had to have her other foot pricked for more blood.  Thankfully Maddie was asleep and hardly stirred this time when she was pricked. 

Monday afternoon and Tuesday Maddie Kate went through a growth spurt.  We couldn't figure out what was wrong with her at first.  She just seemed inconsolable and wanted to nurse nonstop.  I thought she was just wanting to nurse for comfort but finally figured out that it was a growth spurt.  She had gotten to where she was going about 4 - 4 1/2 hours between feedings at night but Monday night and last night she went 3 hours between feedings on the dot and during the day she was going about 2 hours between feedings.  Today she must be pooped out from the growth spurt because I could hardly get her to take a full feeding this morning before she fell asleep and could not get her to wake back up. 

Abby seems to be tolerating Maddie Kate's a little better.  She understands now that Maddie Kate has to have some of the attention sometimes and doesn't seem to be getting as jealous as she was.  It is nice having Austin home this week to help out with the girls.  I know that I'll have to take care of them by myself eventually, but it's nice having the help right now.

Home health is coming by again tomorrow.  Hopefully we'll know the results of Maddie Kate's labs then.  Also Maddie Kate has to go back to Vanderbilt for follow up appointments on the 27th and 28th.  She also has a more advanced hearing test on the 28th.  We still feel that she responds to some sounds, but of course don't know for sure. 

Again thank you so much for your continued prayers for Maddie Kate.  We couldn't be more blessed with such as great group of family, friends, and church.  We have not been members of our church for long, but they are treating us as if we've been members our whole life.  We are so thankful we found such a wondeful church so quickly after our move. 

We will keep you posted as soon as we find out more.

9/17/11

Hey all.  Not much to report.  It is taking some time to adjust, but overall we are doing great.  The home health nurse came by yesterday and got everything set up.  Abby seems to be getting a little more used to having Maddie Kate around.  She seems to get more upset about it when she's tired.  It's been nice having my mom here to help entertain her while I'm having to tend to Maddie Kate.  It's going to be interesting when it's just me and the girls.  I will try to upload and post some new pictures tomorrow.  That's all for now.  Going to bed while I have the chance.

Maddie Kate is home!

Hey all!  Maddie Kate, mommy, and Abby got to come home yesterday (9/14/11) after almost 2 weeks in the hospital.  Yeah!  We were discharged around 3:30 pm yesterday and arrived home around 6 pm.  We unloaded the car and staged all of Maddie Kate's meds so that we could easily access them.  Then around 8 pm, it was time to give her the meds by ourselves for the first time.  Madelyn slept and ate great last night. 

We had a busy start to our day today.  Up at 7:15, meds at 8:00, get abby ready for mother's day out (my mom is here and took her for me), and Maddie Kate's first pediatric appointment at 9:00.  We didn't make it to the appointment until 9:30 because Maddie's medicine takes an hour to pump through her body and then I had to get us ready and out the door.  I of course called the pediatrician to let them know I would be late :).  After getting home around 11:30, I was on the phone forever trying to get home health straightened out because they had scheduled us with two different companies.  Then it was on to getting the house cleaned.  Whew!  Thankfully my mom was here to watch and entertain Abby.  Austin came home for a little while this evening before he had to go back to the hospital (on call tonight).  It is so nice to be able to be here with him.  I know he was missing his girls. 

They drew more labs today.  Madelyn's platelets were up to 200k!  Her bilirubin was about the same.  The pediatrician also told us that the amount of CMV in her system is less than half what it was to begin with.  I guess that means the antiviral is working?!?

Again, Austin and I just can't begin to express in words how thankful we are to have such a wonderful group of family and friends.  The outpouring of support and prayers we have received is immeasurable.  We are and will always be eternally grateful.  We ask for continued prayers for Madelyn's development.  The pediatrician says that she looks perfect right now but the question is will she meet her development milestones and of course pass her next hearing test.  Madelyn is definitely a testament to God's power.  She is already doing so much better than expected!  We love you all!

Jessica

Update 9/13/11

More lab work back today.  Madelyn's bilirubin is down again.  Yeah!  They also had to insert a catheter today to get a urine sample.  Maddie Kate was not happy about that at all.  I think the urine culture is to quantify the amount of CMV in her body to see if it has gone down since she has been on the ganciclover. 

No word yet on when we are going home.  They said this week for sure.  They are still trying to get everything set up with home health and insurance.

Jessica

Update 9/12/11

Sorry that I did not update yesterday.  The reason being is that it was a pretty uneventful day.  No lab work, no new information.  Maddie Kate is doing great.  She is feeding well and sleeping well.  I've had pretty good sleep the past two nights.  She is pretty efficient at nursing already compared to Abby at this age which is nice.  She hates having her diaper changed and her temperature checked.  She likes to be swaddled up and have her passy. 

News today:

Maddie's platelets were up to 157 today!  They tested her neutrofils but i'm not sure what the absolute neutrofil count was (and i'm not sure if i'm spelling neutrofil right so please forgive me if i'm butchering it!).  They were going to draw blood tomorrow to test her bilirubin and liver enzyme levels and such, but they are doing it today instead.  The reason being is that they are trying to set us up with a home health agency so that we can take Maddie Kate home!  If we can find an agency in Jackson that works with pediatrics, then we can go home with Maddie and give her treatment at home.  Austin and I would adminster the antiviral and home health would come twice a week to draw her blood. They thought we might get to go home tomorrow and now it's looking more like Wednesday.  Again all this depends on if we can find an agency and get it approved through insurance.  Please keep praying that we can finally go home!

If I find out any more information today, I will post another update.

Jess

Update 9/10/11

Maddie Kate got to move to another NICU unit at Vanderbilt last night which is actually what they consider a "step down" unit.  It is for patients that are stable and don't need as intensive care.  We have a bigger room now with a bed I can sleep in so that I can nurse her at night.  We can also eat in this room and we have a bathroom in the room.  Yeah!  Last night was my first night staying with Maddie and man was she being needy.  She wouldn't hardly let me lay her down all night!  I think we both finally got to sleep a little after 4 this morning.  I guess she just needed some mommy time. 

Also, not to be too optimistic, but there were several times last night I felt that Maddie Kate responded to noise.  She seemed to startle when alarms from other babies rooms went off or if the life flight helicopter flew by.  I also noticed that while she was trying to go to sleep, her heart rate would drop just a little, but then if there was a loud noise, her heart rate would rise like it startled her awake just a bit.  It would then drop again after the noise stopped.  Again, not to be too optimistic...but I'm hopeful and still praying!

Please keep Maddie Kate in your prayers.  They are working!  Maddie Kate is definitely a strong testament to God and the power of prayer.  Keep praying for Austin as well as he had to go back to work today and will be gone the remainder of the week.

WE LOVE YOU ALL!

Update 9/9/11

Today was a day for some good news.  Nothing incredibly significant but improvement nonetheless.  All of Maddie Kate's labs have improved.  Her liver enzymes and bilirubin are down and her platelets are up to 97k (without transfusion) from 63k.  One of the bigger concerns was one of her immune cell counts called her absolute neutrophil count (ANC).  This number tells you how many cells there are to fight off infections.  If it dropped below 750 then they would have to stop the medicine until they came back up.  As of day 4 of treatment her ANC is approximately 6500.  If this stays up then that would be great news considering over 60% have this level drop (which is called neutropenia). 

We also talked with the neurologist today finally.  He seems to think that the abnormality on the MRI may not be related to the CMV infection.  He believes the imaging is more consistent with ischemia (lack of blood flow) that most likely occurred some time later in pregnancy.  There is no telling when that could have occurred but it doesn't really matter.  He also confirmed what the NICU doc said in that we won't know how this will affect her until she starts getting closer to developmental milestones.  He didn't have much to add to the fact that she failed two hearing screening tests except that they are good at detecting very small changes in hearing, but not good at telling you how much hearing loss there is (hence the word screening test).  Thus, in several weeks or months they will do an ABR hearing test that will test the reaction in her brainstem when different frequencies and intensities are used. 

So all in all a pretty good day.  Hopefully we'll have much more good news to come.  We have been in contact with many people that span the entire country and even into foreign land.  We can't explain how much it means to us to have such a wonderful, supportive immediate and extended family.  We have had all kinds of visitors from everywhere from my clinic in Jackson and our church to Bill and Betty all the way from Tuscaloosa, AL.  Just knowing how many people care and are praying for Maddie Kate helps relieve a lot of anxiety.  Jess and I firmly believe that God has his specific plan that we are still figuring out, but no matter what it is we will still think she's the most perfect girl ever born (tied with Abby of course).  Thank everyone so much, we couldn't ask for better family or friends.

Maddie Kate wide awake!

Austin is going to post an update here in a little while. Stay tuned...

Update 9/8/11

Madelyn did well last night. She ate so well that we are out of milk that was stored in their freezer so Jess will have to catch up today. Neurology is supposed to come by today and discuss in more detail the MRI results. I still have not personally seen the scan but I'm not a neurologist or radiologist so my interpretation wouldn't do much good. There really is not much else as far as news because they won't do any more labs until tomorrow. I had a rough time yesterday with the news about the MRI but I'm doing much better today. Jess has handled pretty much the whole situation very well. We continue to put our faith in God and pray that he will give us strength and courage to handle everything he has given us. We can't express how much we appreciate all the support we have received from family ane friends. Our parents have been especially supportive and we'll never be able to repay them, but THANK YOU! We have received numerous emails, calls and texts from friends and family offering support. The main thing we ask is to continue to pray every single day for Madelyn. Jess and I have come to terms with the fact that she may not be like every other kid, but she'll be the most perfect human being to us no matter what. Also, Abby already has such a caring and nurturing personality that we know she will make sure her little sister is taken care of. Thanks again to all that have given or offerred support and prayers.

Update 9/7/11

This is probably going to be the hardest post to publish.  We got back the results from Madelyn's MRI today.  The MRI of the abdomen was normal but the MRI of the brain showed injury in the temporal and parietal lobes.  In addition to this, Maddie Kate failed her second hearing screen today.  The audiologist plans on doing another screen in a couple of weeks as well as other types of hearing tests.  At this point we do not know the extent of the damage in her brain.  We think it may not be very advanced since her CT scan showed no calcifications.  However, we won't really know what's been affected until she gets older and we can see what milestones she is or is not meeting.  What we are worried about right now is obviously hearing loss, developmental delays, and learning disabilities.  Please keep Maddie Kate in your prayers.  I still believe in miracles!  Let's give God a chance to show off.

More to come...

Update 9/6/11

Here is how our day went today:
The team rounded on Madelyn this morning. There wasn't much to report except that her bilirubin levels went down again and her platelets only went down by 1000 where they have been going down by 10000 a day. Also they started ganciclover treatment last night (not sure if we posted that yet). This morning they put a PICC line in which is just an IV that can be used for a long period of time. This is what they will be using to adminster her ganciclover treatment. We have not yet received results from the lumbar puncture. Hopefully we will get those back tomorrow. Maddie Kate also had an MRI today on her abdomen and brain. Hopefully we will know those results tomorrow as well. The opthamalogist did an eye exam today and said everything looked normal which was wonderful news. The nurse just informed me that she is supposed to get her repeat hearing screen tomorrow. The results on that should be immediate. I guess that is it. Maddie has had a very busy day and is getting some much needed rest right now. Mommy and daddy haven't gotten to spend much time with her today so hopefully tomorrow will be better.
By the way. A lot of people are asking how we are holding up. We are actually probably doing better than a lot of our family. We are putting our faith and trust in God right now and that is all we can do. God doesn't give us anything we can't handle and we have to play the hand we're dealt. All in all, things could be much worse and each day that another test comes back with good results, we get more hope. 

Update 9/5/11 pm

Madelyn had her platelets transfused earlier this afternoon. Her numbers went from 31k to 92k which was expected but will most likely not remain that high. Her lumbar puncture was performed and we will be waiting on results from that.  She had her umbilical lines removed after the procedure so we are now able to hold her a lot more often.  That's it for now.

Madelyn Kate Mackens

I took this picture of our beautiful girl this morning.  She likes to be covered with a blanket and it also helps cover all the ugly cords she has hanging on her!

Madelyn Kate Mackens

Dear family and friends,

The plan is to use this blog to update you daily on what is going on with Madelyn ("Maddie Kate"). Madelyn Kate Mackens was born on September 2nd at 4:55 am at 38 weeks and 1 day of gestation. She weighed 6 pounds and 14 ounces and was 19 inches long. Labor went well with Jess only in active labor for a few hours and pushed for just over 5 minutes.

Madelyn was born looking quite healthy with APGARS of 8 and 9 at 1 minute and 5 minutes. I apologize if some of this info is jargon to you but bear with me. She was able to breast feed pretty early and did well with it. We did notice that she had some petechiae (small hemorrhages) on her face and upper chest that we believe were from normal birth trauma. She also became jaundiced very early (in the first 12 hours of life) which is not normal. The nurse in the nursery took Madelyn back for a routine hearing test (which she failed) and while there did a bilirubin check through her skin which was well above normal. Next a blood level was drawn which also was very elevated.

The docs decided to transfer Maddie Kate to the Neonatal ICU at Jackson General to watch her closer. There were plans to fully exchange all of her blood because her bilirubin was high enough to cause concern for permanent damage if it continued to rise. Just before she was to be transfused another bilirubin level came back which was a little bit lower than the first. This was most likely due to light therapy but nonetheless promising. Thus, the exchange transfusion was held to see if the lights continued to help.

Shortly after her bilirubin returned we found out that her liver enzymes were also quite elevated and her platelets were in the moderate low range. At this point we also saw that her direct bilirubin (there are 2 types) was elevated which was definitely abnormal. The other type of bilirubin is what usually rises in neonates due to breastfeeding or other issues. Direct bilirubin can rise for several reasons including infection and liver dysfunction. The NICU doc decided to run a series of tests to try and figure out what the issue was. They also performed an ultrasound which showed an enlarged liver and spleen, but no other issues in the body or head. Before all the tests could result he decided we should be transferred to Vanderbilt for better care since they had all of the other pediatric specialties.

We arrived at Vanderbilt after lunch on 9/3/11. The NICU docs immediately ordered many more tests and repeat tests. The NICU doc in Jackson (who works at Vanderbilt primarily) had the thought that Maddie had an infection with a virus called CMV. The day after we arrived to Vanderbilt the lab in Jackson called me (Austin) on my cell to inform me that the test was in fact positive for CMV (cytomegalovirus). In between arriving at Vanderbilt and the confirmatory test for CMV, a repeat ultrasound was performed which showed no structural abnormalities in the liver but also showed a very small calcification in the brain which is consistent with the CMV virus. If you read up on CMV, the virus is quite common, but is rarely ever severe in healthy adults. It is usually only a problem in immune-comprimised adults and newborns. CMV has some nasty effects on newborns including neurological issues such as developmental delay and hearing loss.

Infectious disease (ID) was consulted to see Maddie after her positive test resulted. ID recommended getting a lumbar puncture (LP), CT scan of the head and a MRI of the head as well. A lot of these tests are to determine the severity of the virus as well as to rule out any other possible things that could be coinciding with the virus. The tests also help to determine the necessity of treating Madelyn with an antiviral for CMV which is called ganciclovir. Ganciclovir has some nasty side effects including suppression of the bone marrow and suppression (i.e. the white blood cells). It also has not been widely tested. Therefore ID was consulted by NICU to make sure it was absolutely necessary to treat Madelyn with the antivirus before just blindly giving it to her.

Before the LP could be done we found that her platelets had dropped lower into the severe low range so she had to be given a transfusion of platelets on 9/5/11. After her platelets have been transfused they will recheck her level and see if it is safe to continue with the LP. After that they plan to get her MRI to better assess if the virus has caused any damage. While all of these tests are in the process of resulting, the ID doctor determined that we should go ahead and begin treatment with the antiviral. If we find out that her bone marrow or white count is suppressing, they can stop treatment long enough for the levels to come back up. Also, if they find later on the treatment would not be necessary, they can stop treatment at that time.

Some good news: Madelyn is feeding well and is acting like a normal newborn. She does not look unhealthy although she is. We found out this morning that her CT scan came back and did not show any calcifications in the brain (which would show signs of damage from the CMV). Her direct bilirubin and liver enzymes were also down.

Some news that is not so good: Her platelets were down, thus the reason for the transfusion. Also the CT showed possible signs of a bleed in her brain. It is still undetermined whether the blood is from birth trauma or due to low platelets or another etiology. There was also an area of concern in her brain that could be a sign of ischemia (low blood flow). Both issues will be better visualized with an MRI once obtained.

Results yet to come: We are still waiting for results from the LP if it can be performed and images from the MRI. We have yet to start ganciclovir, but this should happen by early tomorrow. They will continue to monitor her white blood cells and platelets during this process and adjust medicines or transfuse platelets again if necessary.

More info to come......