Here We Go Again

So we just got back from Johns Hopkins on Saturday night with no Trinity - although we were supposed to bring her home.

I speak to the Dr. today after rounds - and believe it or not if Tony and I pass the training for inserting a ng-tube we can take her home the end of this week.

As much as I want to go pick her up at the first possible second - I can't keep doing all this back and forth. I have missed so much work in these past 4 weeks. I can't keep missing all this work and not knowing for sure if she is going to be coming home. I know this sounds like such a "mean" and "unloving" mother, but times are tight. If there was an 100% chance she would be home, there wouldn't be a single thought about not going. But we were told she was coming home Thanksgiving, and things happened making that impossible.

So Tony has a call into Johns Hopkins to see if we can have Trinity transferred back to PRMC (which is only 2 miles away) and we can receive the tube training there and have Trinity discharged. Who knows if they will allows us to do this, but it would be so much easier to do.

I think what has me the most frustrated is - when we were at the hospital over the weekend they told us that Trinity could not come home and they were considering transferring her to either PRMC or PG county hospital for observation. Now the story is - Trinity can be discharged on Wednesday is she has no other heart rate problems, but we have to have the training first. If we don't "pass" the training for the tube then she will be transferred to another hospital to stay until her g-tube surgery happens (which right now is scheduled for 12/22). The stories have been different and changing - and this makes everything more confusing for all of us.

No More Ugly Feeding Tube!!!!!

Empty Arms Again

The trip to Johns Hopkins this holiday weekend was good.

We got there Tuesday night and returned this afternoon.

Tuesday night / Wednesday morning, Trinity's heart rate dropped into the 40's three times with no explanation. So this nixed the coming home on Thanksgiving. She is now on a Brady watch (which lasts 1 week from what I am told) to see if it happens again.

They are trying to transfer her to PG County Hospital or back to PRMC in Salisbury. PRMC would be great, PG County would be horrible. PG is still on the other side of the bridge, and would be a long drive although not as long as Baltimore. That we will deal with on Monday.

Mom and Jim came over Thursday to spend Thanksgiving day with Tony, Morganna and I. Volunteers came in and cooked a wonderful dinner for the residents of The Children's House. Mom got to sit and rock Trinity again for over an hour.

Belinda, from the HPE support group, surprised me with a visit from her and her husband, Fern. It was amazing to speak with them. I don't know if I had noticed how alone I had felt until Belinda hugged me. Almost felt like I was coming home.

Tony and I were able to take Morganna to Port Discovery, the Children's Musuem in Baltimore. She loved going there. There was so much for her to do and experience. I was amazed that I didn't get stuck in their 3-story jungle gym.

So we are all home again, and Monday I will start making the calls to find out when I can bring Trinity home and get the family ready for her homecoming.

Special Day

Time Goes By Fast

I can't believe that it has been 4 weeks already.

4 weeks ago today at 2:05 pm est Trinity Angel Rose was born.

Tony, the kids and I spent the past weekend at Johns Hopkins. We all had a really good time. We were able to spend our nights at the The Children's House . The kids loved it there. They have a couple Big, Big screen TVS, a huge play room and all 3 video game systems with lots of games.

When I went to visit Trinity on Friday evening, I found that her ng-tube had been removed. Trinity has been feeding from a special bottle, called a Pigeon. The nipple is a bit larger and the top side of the nipple is harder so that it can help her suck with the cleft palate. She is taking all of her feedings with the bottle. This is such good news. Learning how to feed Trinity makes me feel like a 1st time mom again. After breast feeding Morganna for so long, I had forgotten what a bottle was like.

On Sunday, each of the kids got to spend about 20 minutes with Trinity. This was the first time they had been able to see and touch her since she was born. MacKenzie was very emotional, and got to hold and feed Trinity. Cavin was a bit more apprehensive, and I think scared he would hurt her. Morganna was overwhelmed with the NICU, but warmed up quickly when Trinity got the hiccups and Morganna said she sounded like a mouse. I am so thankful that Johns Hopkins allows siblings to visit.

Tony and I were able to meet with Dr. Levey from the Carter Center on Sunday as well. It was nice to be able to meet with a doctor that seems to have a bit more knowledge about what is going on with Trinity.

Tony, Morganna and I are leaving tonight to spend the rest of the week at Johns Hopkins. I am hoping, and it all looks good, that Trinity may be released later this week. Two things need to be accomplished. I need to learn how to insert a ng-tube into Trinity incase she decides to stop eating and the insurance company needs to finish the order for a T-pump. The T-pump will help some in the temperature issue.

Mom will be meeting us in Baltimore on Thursday to spend Thanksgiving Day with us. The Children's House will be having a Thanksgiving Dinner for the families, so we won't be missing out on the holiday. :)

I am hoping Thanksgiving day is the day Trinity will be released.....but it is hard to say. I really don't know if I want to go home without her again. She is doing so well. Her life is still a big question mark, but the hospital really has nothing else they can do for her.

And can you believe it - a great week the whole family had, and I forgot my camera.

This back and forth from the hospital is starting to wear on me.

My Dr. Nu

Dr. Nu has been the primary care doctor for my 3 older children for the past 8 years.
She is a very good doctor, and she just continues to amaze me.

October 25th, the day after I gave birth to Trinity, there was a knock on my recovery room door. Thinking it was just another blood pressure / temperature check for me - I said "come in" and in walked Dr. Nu.

She was in to check on the babies ready to be discharged that are under her care. They had not notified Dr. Nu about Trinity as she was still under the care of the NICU. But Dr. Nu had seen my name and had taken it upon herself to check in on Trinity and looked over her hospital chart. Then she came to see me.

There was such an rush of emotion when I saw her. That she would take the time to come and speak to me. Mom was even crying when she found out who she was. In her broken English, she told me not to worry to much, that I needed to be put together for my other children, and that she knows it can be a long wait to sometimes see her but that with Trinity she would always have time for us when I needed her.

I think it was the first time that I ever hugged my family doctor (not the first time she has seen me cry though).

It is refreshing to know that I have a loving, thoughtful doctor waiting to take on the care of Trinity and my family.

Another Visit

Tony, the 3 kids and I will be leaving tomorrow afternoon to have a weekend visit at John Hopkins.
The Nicu center there, allows siblings under 18 to visit on Sundays....so we are going to take advantage of that.
MacKenzie, Cavin, and Morganna will be getting a flu shot before we leave. They aren't too happy about that, but the benefits are worth it.

When I was very early in Trinity's pregnancy (February 2005) , I caught the flu bug from my children. It was the worst. I was already having morning, noon and night sickness......and then I started throwing up every 15 minutes. Thankfully the kids were helpful and we made it through those 5 days. But I don't want to relive that again.

Dr. Dan called me last night, and informed me that they were looking to send Trinity home this weekend or next week. As soon as they could get everything arranged. There is some equipement, prescribtions, and appointments that needed to be lined up first.

So we will be there from Friday afternoon to Sunday evening....and then I am planning on returning to John Hopkins Wednesday and returning Friday (the day after Thanksgiving). This time I am planning on returning home with Trinity.

Trinity's g-tube insertion is being scheduled and will probably not be able to be done for 3 weeks. Because Trinity is so stable and thriving - they don't feel she needs to stay in the hospital - they would rather have her return when her surgery is scheduled.

I am getting nervous about Trinity coming home. Whether or not I am ready to provide her the kind of care she needs. After Trinity is released from the hospital, Tony and I are planning on staying over that night at The Children's House, just in case. That way if anything happens the first night, we are only 50 steps away from the hospital. I really don't plan on sleeping that first week she is home. I will be too nervous.

But the range of emotions does not stop at nervous - I am excited, scared, relieved, etc........so I am bouncing around.

Holoprosencephaly?!?!?!

It took me about 1 1/2 weeks to be able to correctly say the word - Ho-Lo-Pros-En-Ce-Pha-Ly
Just a big word for such a little girl.

Below is from the Carter Centers Website

What is Holoprosencephaly?
Holoprosencephaly (HPE) is a birth defect that occurs during the first few weeks of intrauterine life. HPE is a disorder in which the fetal brain does not grow forward and divide as it is supposed to during early pregnancy (incomplete cleavage of the embryonic forebrain/failure of the prosencephalon to cleave into the cerebral and lateral hemispheres).

This brain malformation can range from mild to severe and is classified into four types:
(1) Alobar (severe)--where the brain is not divided and there are severe abnormalities (there is an absence of the interhemispheric fissure, a single primitive ventricle, fused thalami, and absent third ventricle, olfactory bulbs and tracts and optic tracts).

(2) Semi-Lobar (moderate)--where the brain is partially divided and there are some moderate abnormalities; where there are two hemispheres in the rear but not the front of the brain (there are partially separated cerebral hemispheres and a single ventricular cavity).

(3) Lobar (mild)--where the brain is divided and there are some mild abnormalities (there is a well developed interhemispheric fissure however there is some fusion of structures).

(4) Middle Interhemispheric Variant (MIHV) -- where the middle of the brain (posterior frontal and parietal lobes) are not well separated.

Children diagnosed with HPE may have a small head (microcephaly), excessive fluid in the brain (hydrocephalus), variable degrees of mental retardation, epilepsy, endocrine abnormalities, or abnormalities of other organ systems such as cardiac, skeletal, genitourinary, and gastrointestinal. Mildly affected children may exhibit few symptoms and may live a normal life.

Facial deformities are often present in many children diagnosed with HPE. Mild forms of facial abnormalities may include a flat single-nostril nose (cebocephaly), close set eyes (hypotelorism), cleft lip and/or palate, or just one upper middle tooth (single maxillary central incisor). More severe facial deformities may include a single central eye (cyclopia), a nose located on the forehead (proboscis), or missing facial features.

What causes holoprosencephaly?
The cause of HPE is currently unknown. Often, no specific cause can be identified. Suggested risk factors include maternal diabetes, infections during pregnancy (syphilis, toxoplasmosis, rubella, herpes, cytomegalovirus), and various drugs taken during pregnancy (alcohol, aspirin, lithium, thorazine, anticonvulsants, hormones, retinoic acid). Women with previous pregnancy loss and first trimester bleeding are also more likely to have a child diagnosed with HPE.

Although many children with HPE have normal chromosomes, specific chromosomal abnormalities have been identified in some patients. There is evidence that in some families, HPE is inherited (autosomal dominant as well as autosomal or X-linked recessive inheritance).

Several genes have been identified that play a role in holoprosencephaly.

How common is this defect?
It is estimated that HPE affects between 1 in 5,000-10,000 live births. Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants do not survive past the first six months of life. The prognosis for a child diagnosed with HPE depends on the type of HPE and the presence of associated anomalies. The most severely affected children may live several months or years and the least affected may live a normal life span. Almost two-thirds of affected patients have alobar HPE and approximately one quarter are diagnosed with semilobar HPE.

Summary
HPE is characterized by a failure of transformation of the prosencephalon into cerebral hemispheres with separate lateral ventricles. HPE has many associated anomalies, both of the nervous system and face. HPE is also associated with malformations in other body systems, particularly when it has a chromosomal etiology. The true spectrum of HPE, its clinical manifestations, and underlying etiologies require further elucidation. Applying this knowledge to individuals and their families is of utmost importance.

Trinity has Semi-Lobar Holoprosencephaly - the moderate form.

I hope in the future to be able to receive the genetic testing to see if Trinity's genes did mutate themselves, if Tony and I passed this down, or is it was an environmental factor. The test alone to see if Trinity did it herself is $1,800 dollars. We might be able to get this testing done with just the cost of having the blood drawn. That would be great.

Welcome To Holland

Last night was probably the worst night that I have had in the 3 weeks since Trinity was born.
After having such a good day with good phone calls, when it came to go to sleep I found myself restless and unable to quiet my soul. I was angry. So I spent the night up until past midnight tossing and turning in bed. I finally got out of bed and decided to return email. In the last email that I read around 3 am - I found a short written piece that I wanted to share

Welcome to Holland
c1987 by Emily Pearl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability--to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this . . .

When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around . . . and you begin to notice that Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy . . . and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away . . . because the loss of that dream is a very, very significant loss.

But . . . if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.

I was able to sleep soon after reading it - as it placed some quiet in my heart when I finished reading it

Thankfully school was delayed 2 hours - so I was able to sleep in before getting the kids off to school.

Another Call Today

I received another call today -

This one from Dr. Rick Redett, a Pediatric Plastic Surgeon, from John Hopkins. He works in the Cleft Lip & Palate Clinic.

Anyway.....he had been in to see Trinity today to evaluate her. He stated that normally a cleft Palate goes to one side or the other, but in Trinity's case it is in the middle - which is most likely associated with her Holoprosencephaly.

Because of the severity of Trinity's cleft lip - her plastic surgery to fix her lip would be done in two stages about 2-3 months apart, and then at a later time her palate would be done. The 1st surgery could be done in the next couple of months.

Not sure about the surgery. At this mid-stage in my life, I am not such a risk take anymore. I don't know if the risks of surgery are worth the benefits of the surgery. Maybe only fixing the lip is enough and leave the palate like it is. Or Maybe none of it should be done

The Sun Is Shining Today

After all the rain and bad weather this past weekend - it is nice to have the sun shining today. Could be a bit warmer, but I will take what I can get.

Dr. Dan (as he now refers to himself to me on the phone, as I can never remember his last name) gave me a call today to update me on Trinity.

The Occupational Therapist has been working with Trinity since she has been at John Hopkins - This morning Trinity took 3/4 of her feeding by bottle. What a great accomplishment. Her previous feeding with a bottle didn't amount to much, but I am proud of her progress this morning.

Way To Go, Trinity!

I asked if she got angry about the bottle, and Dr. Dan stated no that she just got tired. Dr. Dan did consult with Dr. Levey at the Carter Center about this. Dr. Levey did advise to go ahead with the g-tube as she does have the hormone problem and this gives us the opportunity to still hydrate her if she refuses to eat.

Dr. Levey will be making another visit to Trinity this weekend, so I am planning on going up this weekend with the kids so that I can personally sit down and speak with him concerning Trinity.

View Our Family Pictures

If you click here - you can view our family pictures - I will also keep a link of it on the right hand side of this page.

Trinity Is 3 Weeks Old Today

I can't believe that she was born just 3 short weeks ago. Even more amazing what she has fought, overcome, and has had to endure during her short life.

Yesturday and today is a day of good news.

Trinity information was passed on to Carter Center located at the Kennedy Krieger Institute at John Hopkins. they will be going over today and checking in on Trinity and and her hospital chart. This brings such peace.

The Kennedy Krieger Institute deals with developmental issues in children and the Carter Center deals directly with Holoprosencephaly. I know that she will be in good hands with the Carter Center.

I had two long phone calls yesturday - one with the Carter Center and one with a Board of Director's member from Familes Of HoPE, inc. . It was nice being able to talk with length with them.

I am still left with a lot of unanswered questions. Some may never be answered until Trinity decides it is time to answer those questions, but I hung up the phone both times feeling that I had a better grasp on things.

Two things that I learned is that - There is hope for Trinity - and regardless of how long we are blessed to have her here with us she will be a teacher, a preacher, a missionary, an activist, will touch everyone she meets in a special way and will accomplish so much more than I can ever imagine.

Grandma Got To Hold Trinity Again

Tony and I were able to make it back to John Hopkins for a short visit this past weekend (November 11th - 12th). My sister Marian was able to come down and watch the kids so we could go.

It was wonderful to see and hold Trinity again. She is growing (6 pounds 5 ounces) and looking more beautiful every day.

Her sodium / hormone replacements are stable.

Her breathing and heart are strong.

Her g-tube - a tube put through her stomach wall - should be put in place this week.

She should be coming home soon after.

All such good news to hear.

There is still some "doom & gloom" coming from the doctors in the NICU.

As far as plastic surgery for Trinity - they aren't sure if it will or should be done - as the risk of the surgery might not be worth it - something that we will need to consider in the future.

I was just happy to be there, and to finally see her eyes open for a length of time. I wish I have been able to watch her grow more during these past few weeks - but I know that I will get my time with her soon.

The Children's House at John Hopkins has been just wonderful about letting us stay on such short notice. It is amazing the outreaching of hands full of support that are offered during times like these.

Grandma was able to hold and rock Trinity for a long time - she also scrunched up Trinity face and tried to open her eyes, but Trinity was having none of that and kept them shut tight. Grandma had not been able to hold Trinity since a few days after she was born. I think it was good for both of them.

On The Day We Left John Hopkins

We left Trinity in the capable hands at John Hopkins.

It was not an easy ride home. Again I was leaving the hospital with no baby in my arms, and no idea when I would be able to see or hold her again.

In The Big City

Tony, my husband, and I made it to John Hopkins the day after Trinity arrived. The drive didn't take as long as I thought it would. We went through the tunnel under the harbor to enter into Baltimore. I normally don't like tunnels and big bridges, but this time it was different. I had the window down as we entered into the tunnel. As we drove through it, there was this loud sound echoing in the tunnel from all the cars zooming through it(which I guess it why most people have the windows rolled up). At that moment it was such a relief for me.

It was all the anger and screaming of unfairness that I had wanted to do since Trinity was born. Up until then all I felt was sadness which I let out when I woke in the morning and in the shower. The rest of the time, I tried to put on the air of someone who has it all together, and is ready to face all the challenges in life. Put for those few seconds in the tunnel (which seemed like forever), my heart was screaming.

After taking some wrong turns and figuring out parking, we made it to the NICU at John Hopkins. Trinity was already settled in. Amy, our hospital social worker, was immediately at Trinity's bedside. I was wisked off to the Children's Home to check in for our short 2 night stay. After we were then free to meet with the teams of doctors and stay at her bedside.

How different this hospital operated from my local hospital. The "air" seemed a bit colder there at times, but the amount of attention that Trinity was receiving was amazing.

Trinity's trial and problems became a lot clearer in those three day / two nights
Alot of information that I wasn't ready to hear - but I took in with a logical mind and asked lots of question - and then processed and broke down in the isolation of the shower where no one could hear.

I will not bore you with lengthy explanations of her conditions - those can be easily googled for more information

From the endocrinologist - Trinity is suffering from Diabetes Insipidus and she is not able to regulate her body temperature
From the genetics fellow - this is most likely resulting from a new mutation of genes from Trinity, not passed down through the family
From the neurologist - Trinity has Semilobar Holoprosencephaly

What this means for her and us, we don't know yet. Trinity will tell us in her own time.

She is currently receiving hormone replacements for the Diabetes Insipidus twice a day and her sodium level is only being checked once a day, just two days ago she was being check every four hours with a heel stick so this is good news.

They have no survival rate information - no answers on what the future holds for Trinity - just a lot of wait and see.

Trinity turned 2 weeks on the 7th of November, 2006. I wonder if her celebrations will be in weeks or months - or if they will be in years.

Before Trinity Left For John Hopkins

How It All Changes In A Moment

On the 24th of October, 2006, at 2:05 pm my baby girl was born.

My water had broken 4 weeks early. After 8 hours of water trickling most of the evening, I went to Labor & Delivery at 2 am with my 3 other children in tow when the flood gates opened. I was induced as there were no contractions and she wasn't even in the birth canal. The labor was pretty quick, and delivery was one simple push and no tearing. My mom was with me through it all. I had tried to send my mother home with the kids, and I told her it would be no big deal as I had already done it three other times. How thankful I was that she didn't listen to me.

The doctor annouced that it was a girl (which I already knew) and that she had a "small cleft lip" (that was a surprise). As the doctor finished up on me, my baby girl was evaluated and given a score of 9/9. She weighed 5 pounds 13 ounces. The nurse seemed to want to send her off to the nursery as her temperature wasn't right, but NICU kept saying there was no reason.

It broke my heart when I finally saw and held my baby girl. A "small cleft lip" didn't explain what I saw. She looked so different. Everyone in the Delivery Room - told me how it could all be fixed and what wonders could be done today in medicine. I was asked if I had an ultrasound and knew about the cleft lip(this is the first time I would hear that question, a question asked over and over in the coming week). I had had 2 ultrasounds, neither of them picked up anything abnormal. I knew that a cleft lip would not be the end of world for her and me. It broke my heart because I know how cruel society can be, and I didn't want her to experience any of that. They asked me for a name, and I told them I didn't know yet.

The Lactation Specialist came in, but my baby girl had no interest in nursing - all she wanted to do was be held and sleep. So Mom and I took turns holding her. Mom said she looked at like a Woodlen Elf. The Lactation Specialist stated that my baby girl had a cleft lip and palette. More bad news, but nothing we couldn't handle.

The NICU finally came to take her away and evaluate her. And that was when my life went from normal (with some doctor's appointments for cosmetic surgery).....to a life of uncertain and unknown future.

It was after she left, I believe, that it hit me, my baby never cried. My other three children cried when they came out from the safety of me into the cold world - but my baby girl didn't. She just whimpered a little.

The head doctor of the NICU came into my recovery to speak with me. God, I don't know how much more I can handle today, please don't place more on my shoulders. The doctor explained that my baby girl's head size and other facial features are concerning them, and an ultrasound of her brain has shown that she has "Agenesis of the Corpus Callosum" and "Absence of the Septum Pellucidum". Which explained to me, meant she was missing the top covering of her brain that goes over the two hemispheres and another "piece" of brain deeper down that is sorta bean shaped. The ultrasound showed this, but nothing could be confirmed until an MRI is done in a few days. The MRI would also show any frontal lobe brain damage. Everything else seemed OK with her. Again I was asked if I had had an ultrasound and did I know before the birth.

I came home from the hospital on the 26th of October. That was the day she was named. With some discussion with my husband, she was given the name Trinity Angel Rose........I needed the perfect name for her.

So Trnity stayed in the NICU under an oxygen tent - which means I couldn't hold her. She spent 7 days in the NICU at my local hospital, PRMC - with minor problems - She had a nasal tube put in to feed her. I noticed one day during that week that her breathing seemed very labored. An x-ray showed that she had a hole in her right lung and had air trapped in the chest cavity - so they drained the air with a needle and later decided to insert a chest tube. The next day the tube was removed and she seemed to improving every day. Every time a new nurse came on to care for Trinity, the first question they asked me was "Did you have an ultrasound? Did you know?"

On Monday the 30th of October, I called into find out when the MRI would be preformed that day - it was then the doctor informed me that they were going to transfer her to John Hopkins in Baltimore. Trinity's sodium levels were rising (when did her sodium levels come in to play?) and he felt the reading of the MRI would be read better at Hopkins. So now my baby girl was being moved before she was a week old to a hospital 3 hours away.

John Hopkins is one of the best hospitals, and I knew she would receive the best care there. But a feeling of horror was coming over me. Trinity did have major problems, and no one was really saying what they were. I don't know if they knew what was going on with her or not, but no one seemed to really want to get down to specifics with me about Trinity. When I got off the phone with the doctor, I rushed to take a shower to get to the hospital to see and hold her again before she left.