Pumpkins!

The girls were so excited about their pumpkins this year. Mark was in charge of the whole pumpkin thing, as he is every year. I have no creative bone in my body. Not to mention I am not so good with a knife. Although the girls were super excited about the pumpkins, they were less excited about helping once they saw how messy the whole process was. Mark was looking forward to them getting all ooey and gooey. Apparently he has never met our children. If so much as a spec of dirt gets on my kids there is instant crying followed by screaming of "Messy! Messy!", which can only be resolved by me scrubbing them down with soap and water. Once I gave them a spoon, then they were a little more into the process.

Unfortunately, they pull out the seeds one at a time with the spoon, and Mark's patience cant handle that.

So, needless to say, Mark cleaned the pumpkins also.

Maddie was very specific that she wanted circle eyes, triangle nose and a happy face. This is what she got.

Ruthie decided she wanted triangle eyes, triangle nose and a sad face, for some reason. I am sure there are years of therapy in the future as to why she wants her pumpkin to be sad.

Getting them to both look at me and smile still proves to be impossible.

Presents

What does this look like to you?

Any normal person would say wadded up paper. I here to enlighten you. These are actually "presents" made by my children. Apparently wadding up paper into a ball makes it a present because you can open it. I will admit, most of the time there is something encased in the wadded paper; crayons, figurines, plastic food, etc. So, I have had to stop and look twice before just chucking wadded up paper into the trash can since there is usually something in there.

I am not exaggerating when I say that I received approximately 20 "presents" a day. I have come to the point that when they are not looking I just unwad the paper and give it to them to start over with. I own a stationery company for cryin' out loud. I am already personally responsible for an entire forest being killed and stored in my basement for re-sale. I can not handle the additional guilt of letting my children crumple up paper for pure entertainment with no ability to at least re-sell it!

3 Years Ago....Our Miracle Babies

The doctors informed us that the girls tested negative for all 12 metabolic disorders. Never have I been so disappointed in my children not having a disease. We still had no answers, and the fact that probably whatever they had would be rare and untreatable was not a comforting thought. All of that testing would take place in outpatient office visits since we were just basically sitting around Vanderbilt taking up two rooms.

On Sunday morning, it wasnt even a question, we were going to church. Not that God and I hadnt been talking quite a bit this week, but I just needed some time out of the hospital with Him. On Wednesday, after we received the diagnosis, I snuck into the college praise and worship that night and then went back to the hospital. I didnt want to see any one, I just needed some time to sing and pray. Sunday morning we skipped Bible class and purposely came in about 5 minutes into worship in order to just sit in the back and avoid all the questions. Not that we didnt appreciate every one checking in on us and all of the help, but we just wanted a couple minutes of not having to think about the girls. Not to mention this was my first time back to church since having the babies. I thought my first time back I would be carrying two carriers, stopping in the nursery, showing the girls to everyone etc. Instead, I was sneaking in the back with Mark and my sister.

Of course people noticed us as soon as we walked in. We sat in the last row, pretty much in a daze. Then the song leader led a song that to this day I still can not sing without crying. Talk about God speaking to you. "O For A Faith That Will Not Shrink". I sang these verses through tears streaming down my face.

O for a faith that will not shrink,
Though pressed by ev'ry foe,
That will not tremble on the brink
Of any earthly woe.

That will not murmur or complain
Beneath the chast'ning rod,
But in the hour of grief or pain,
Will lean upon its God.

A faith that shines more bright and clear
When tempests rage without;
That when in danger knows no fear,
In darkness feels no doubt!

Lord, give us such a faith as this;
And then, whate'er may come,
We'll taste e'en here the hallowed bliss
Of an eternal home.

Never had a song had such an emotional impact on me as that did then and does now. I have forbid Mark from leading it at church since I turn into a blubbering mess and people give me funny looks.

On Sunday after church we were blessed to have 9 of our 10 elders come to visit us in the hospital. One was in Africa, so he was excused! :) All 9 of them came in to pray with us. They asked us what we needed to pray for and Mark said, "That they will just be healed. That all of this will just be taken away." I was completely taken off guard. Of all the things that I had been praying for, I had not once prayed that God take it away and heal them. I had prayed for help, for strength, for patience, for understanding, for everything else but to actually heal them. I thought I was doing so well depending on God through this whole ordeal. I truly had turned EVERYTHING over to him because I knew I couldnt handle it on my own. But, I just took what the doctors told me and accepted that it was the way things were going to be and prayed that God would help me through it. I had put God in a box of limitations. Limitations that I had placed on him, not that he actually had. He is the "Great Physician" and I had not even asked him to heal my children. Talk about an eye opening moment.

I truly believe what James 5:16 says that "The prayer of a righteous man is powerful and effective." We had 9 wonderful, righteous, God-fearing men praying for our girls. So, we brought Ruthie and Maddie into the same room and me, Mark, my sister and our elders stood around and we all placed our hands on the girls. As each one prayed, one by one, I can honestly say that I could feel the presence of God in that room. I can not explain it, all I can say is that I could feel the power and comfort of God in that room with us. If nothing else, I left there feeling uplifted by that brief moment in prayer to God and the eye opening experience of not limiting what I ask God for.

Katie was wanting to stay around to talk to the doctors one more time, but they didnt make their rounds before her flight. So, I headed to the hospital to send her back home. My mom was coming back down since the girls were getting discharged and I would need help again at home. I dropped off Katie and was driving back to the hospital when Mark called me. Ruthie's follow-up MRI came back. All of the irreversible brain damage shown on the previous MRI was completely gone. The words made no sense to me. I was minutes away from the hospital so I just told Mark to hold the doctor there and I would be there as soon as possible. I sprinted from the parking lot up to Ruthie's room where her doctor showed us these new MRI images.


There were no more white spots. It looked like a completely normal 2 week old baby's brain. The radiologist said he had never seen anything like it in his entire career of radiology. He said that he had sometimes seen these results over a period of years, but not a couple of days. The neurologists could not explain it. We didnt need any explanation, we knew. God had answered our prayers. Here are the medical notes from Ruthie's second MRI.

Technique: Multi-planar multi-sequence MR imaging of the brain was
performed both prior to and following 1 cc of Magnevist.

Comparison: 10/9/07

Findings:
There is no abnormal intracranial enhancement. There has been
interval improvement restricted diffusion which involved the
subcortical white matter on the prior study. Minimal residual
restricted diffusion is still identified in the subcortical white
matter of the posterior parietal lobes. There is no mass effect or
midline shift. The ventricles are normal in size and configuration.
There is no intracranial hemorrhage. Sagittal midline structures are
unremarkable.

The paranasal sinuses and mastoid air cells are clear. The orbits
are grossly normal.

Impression:
1. No abnormal intracranial enhancement. Minimal residual
restricted effusion remaining in the subcortical white matter of the
posterior parietal lobes.



Of course they immediately wanted to do a follow up on Maddie's MRI also, and below were the results.


White spots cleared up also. We were given the CD before they were able to record the medical notes on the Maddie's last MRI, so I dont have access to them from home on her last MRI.

I truly believe that God gave us a miracle. There is no medical explanation for what happened to our girls. We never received a diagnosis except for them concluding it must have been something viral . Our girls had gone from a diagnosis of being severely delayed to having MRI's that were completely normal. We were lined up with SEVERAL medical appointments every month for follow up that we went to. The most interesting were the neurology appointments. Of course before they came in the room they would review the MRI's. After their exam they would always have this confused look on their faces as to how children that presented with the original MRI were holding their heads up, rolling over, babbling, etc. They would always comment that these were not the children they expected to see while viewing the original MRI. I would just smile and tell them that God answered alot of prayers. We were eventually discharged from neurology and taken off anti-seizure meds at 6 months. They told us if the girls presented with any abnormal symptoms again to bring them back in, but at this point they didnt see a reason to keep treating normally developing children. We had the girls in weekly physical and occupational therapy for the first year. They tested out after their first birthday since they showed no signs of delay. By one year we had been discharged from all of their specialists except for heart and eyes.

If you have ever read my blog before, of course you know that we have had a happy ending. The girls have continued to develop on target, and maybe even a little ahead on some things. No one would even know anything about their medical history by looking at them. Ruthie's opthamologist said that her seizure activity is a possible reason for her eye muscle issues, but that is currently the only lingering side effect of our entire 10 day stay at Vanderbilt. When the girls start school we may run into some other delays with education. I will take an educational delay any day over the expectations the doctors told us to originally have.

Of course we have skeptics that dont believe that God healed our children after they hear our story. The number one objection is that the MRI machines must have been broken. Maybe. But, if you look at the dates on all 4 MRI images, they are on 4 different days at 4 different times over the course of a week. That means that Vanderbilt Children's hospital was performing MRI's for almost a week on broken machines, which wasnt the reality of it. Other people think that there must not have really been anything wrong with them and they just got better. To my knowledge, they do not keep a child on a respirator for 3 days with nothing wrong with her. And, maybe they just did get better. But there wasnt a single doctor on any of their teams that had seen a brain injury like theirs disappear the way it did. To me it is so obvious that God healed my children. He answered our prayers, the prayers of our family and friends. There is no other way for me to thank him for that expect to give him all the glory and to tell any one that wants to listen of the great things he has done in our lives.

Our girls are obviously too young to understand the whole situation, but as they get older Mark and I plan to have this story drilled into their heads. They are going to know that God took care of them in a time that even Mommy and Daddy couldnt, and that they better live their lives giving glory to one that gave them the healthy life they are living.

This whole story turned into a lot longer of a blog post then I thought, but as I kept going back through emails and medical records, more and more kept coming back to me. I hope that for those that didnt know their story are maybe a little more enlightened as to where we are coming from. I hope it is a little bit of encouragement about God's amazing power and the power of prayer. It is a good reminder for me that God is active in our lives, even when bad things are happening and nothing makes sense. He will make sense of it, in his time.

3 years ago...Waiting

I didnt take any pictures when the girls were in the hospital. I remember thinking, "Who in the world would want to remember this?" I wish that I had now. Luckily, a much wiser woman, knew I would want pictures later and took a couple and saved them for me. Thank you, Barbara Fox! So we only have a couple, but I look exhausted in them!

Things actually slowed down quite a bit after we received the girls MRI results. It was a lot of waiting while they were running tests. We also had to do a personnel swap in my family. I love my mother. She is probably my best friend. She was a HUGE help with the girls after they were born, taking the night shifts with me. But, my mother does not do well with hospital situations. I called my sister and informed her that she had to come and get mom because she had boarded the "crazy train" and wasnt coming back any time soon. She had stopped eating and was freaking me out more than she was helping me. I thought that a couple days at home in Albany with my niece, Lily, who is her favorite grandchild anyways, would do her some good. Not to mention getting some sleep in her own bed, all night. So, my dad came and picked up my mother and my sister took her place.

Looking back now, I have a different appreciation for Katie coming down. At the time I just thought, "well of course she will come down". Thinking back on it now she left a 3 month old, breast feeding child at home to be down here. She left a VERY attached almost 3 year old at home. And, my wonderful brother-in-law (this is one of the few times you will see me refer to Brian in these terms, so take it all in Brian!) who allowed her to leave her two children with him. Now that some time has passed she does blame the trip for Jamison stopping breast feeding so early, but whatever. Katie and I were basically our own PICU dairy with both of us pumping at least every 3 hours. They actually gave us our own little fridge to store the milk in. Katie flew back home to Albany the following week with a cooler of breast milk. I took home 90 ozs from our entire stay at Vanderbilt. When Katie got home she realized that she had accidentally taken a bag of my frozen milk. She was still slightly convinced/paranoid my milk was poisonous (see next paragraph) so she threw it out. (A gasp is heard around the world from any mom that has pumped at the fact someone threw out 6 ozs of liquid gold!)

Soon after the MRI results we met with a genetics team (another team added). They informed us that they thought it was a genetic disorder that the girls had. There was something that their body was not able to metabolize and as a result there were these "infarctions" in their brain. Well, the only thing the girls had coming into their bodies was breastmilk, so I went through a brief freak out moment were I was convinced my breast milk was poisonous. They assured me it wasnt. Then the reality of what they said kind of sunk in. A genetic disorder. They said it was probably recessive traits that we both just happened to carry. That meant this was something that Mark and I had given to them. That was a hard pill to swallow. Then the completely selfish side of me came out. If this is something that Mark and I passed on to our children, there is no way that we are having more children because I am not going through this again. By a doctor telling us that, they had basically made the decision for us about having more kids. I was so upset about the "decision" being taken away from me. It is one thing when you decide to not have any more kids, it is another when an impossible situation is presented to you, taking that decision away.

So the testing began. Everything they tried came back negative. Finally they came to us with the fact that here were 12 metabolic disorders that were possibilities of diagnosis's for the girls. All 12 were treatable, which was great news. Unfortunately, if they did not have one of those 12 metabolic disorders, they told us that whatever it is would be rare, and probably untreatable. So, I actually began to pray, and ask others to pray, that my children have a metabolic disorder. Now there is a prayer that I never thought I would be praying. But, that was my prayer.

By this time, news had spread throughout several avenues, about the girls. We received emails, cards, facebooks posts from people from all over the country that were praying for our children. One night, one of the night nurses came into my room and asked us if Ruthie and Maddie were the kids that the facebook group "pray for ruthie and maddie" was about. It turned out that it was the number one facebook group in Nashville that day, and it popped up on her screen. When Ruthie was moved up to the regular floor on Thursday, across the hall from her sister, there were no visitor limits like in PICU. I am pretty sure that Vanderbilt wished there was by the time we left. Both the reception area in the main lobby and on our floor had pre-made "Sullivan" visitation passes since every one that came by requested one. We were flooded with visitors from church and our families. We were never without help or company. Every night people brought us meals, or came and sat with the girls so we could go out. One of the Bible classes from church collected money for us to help pay for medical bills. Every shift the nurses would comment on all of our visitors and how much support we had. All of of our visitors were such a great testimony to the support and genuine care that Christians have for one another.

On Friday the girls were doing great. If you had not just told me that there was a pretty significant chance that they could be vegetables for the rest of their lives, you would never know there was anything wrong with them. They seemed like perfectly normal babies, but we knew different. All of the teams had basically decided there was nothing else that they could do for the girls in the hospital, no matter what the results were from the metabolic disorders test. They said we would just have to follow up with several appointments, so they prepared to discharge us. Neurology requested a follow up MRI to be done on Ruthie before discharge. For some reason, unknown to me and my sister, it is IMPOSSIBLE to get an MRI and reading over the weekend at Vanderbilt. Trust me, we nagged every on. My sister actually went down to radiology to see if she could grab some on. So, we were stuck at the hospital all weekend, basically just hanging out and waiting.

A speech therapist (another team) was called into help also. When they removed the feeding tubes from the girls, they had both lost their suck reflex. So we started working with them to try to re-teach them their suck reflex and work on latching again. This eventually was the reason that I had to stop breast feeding the girls and went to bottles. Even though they re-learned how to suck, they could not get back to breast feeding the way they were before. It was taking over an hour for each baby to feed, which doesnt work well when there are two babies and only 3 hours inbetween feeds. So, I pumped for 6 months and gave the girls bottled breast milk. The 90 ozs that I had stored up from the hospital stay was a great help!

The girls were officially discharged from their infectious disease team, so they were allowed to be taken out of their room. The girls were doing so well that the nurses told us that they could stay in each others rooms, without machines during the day, but at night they had to be in their own rooms with monitors, just to make getting vital signs easier on the night staff.

So we waited until Monday to get MRI results and be discharged.

3 years ago.....D-Day

I woke up Wednesday morning on the chair/bed in Ruthie's PICU room. When I saw Ruthie, I immediately noticed that she had been taken off the ventilator, and was breathing on her own. Apparently the 4 AM try of weening her went well. I was a little mad since I had asked them to wake me up for when they tried to ween her again, but got over it pretty quickly when it finally occurred to me that she was breathing on her own again, so just be grateful. I was able to hold Ruthie for the first time since Sunday. Finally! Things were looking up. We still didnt have any answers, but as long as they were getting better, I didnt care. They were already talking about discharging Maddie in the next day or two. The next step would be to get Ruthie up to a normal room, then we would all be able to go home and back to normal.

It was still early in the morning when one of the doctors came into the room with me to discuss Ruthie's MRI. She attempted to explain to me that her MRI results were not good. She had evidence of several "infarction's". I asked what an "infarction" was and basically she described it to me as a series of attacks on parts of her brain, similar to mini-strokes. It showed evidence of her being deprived of oxygen for extended periods of time. I asked if that had to do with the apnea episodes in the ER and she stated that it would have had to been longer than her episodes in the ER. I am sure she saw the look of pure confusion on my face and asked if I wanted to see the MRI's.

These are what she pulled up.

Actually looking at them still made no sense to me. She "dumbed" it down for me to say that everywhere there are white marks on her MRI is brain damage. Those were words that made sense to me. I knew what brain damage was. What I didnt know what how my seemingly perfect 2 week old had brain damage.

I was a psychology major in college, so we had to do a little bit of anatomy in regards to the brain. I knew that different parts of the brain controlled different things. I asked her what kinds of delays we should be expecting. Was the damage primarily in her motor skills section, her verbal comprehension, her reasoning, etc. The doctor told me it was too widespread to narrow it down to one area that she would be delayed in. I also knew about "re-mapping" which is where after damage occurs to the brain, some how it learns to "re-map" around the damaged area to learn how to do that function. I asked her since all she had "learned" how to do was eat, cry and poop, couldnt she just "re-map" how to learn the other things like crawling, rolling over, talking, math, etc. It seemed like a logical answer to me. She then told me that re-mapping can only occur when there is damage in one area, not in several areas as severe as hers. She just said that we would have to take one developmental milestone at a time and deal with it. She explained to me that I should not expect her to achieve any of the expected milestones, included simple things like holding her head up.

Before we were discharged from the hospital, they gave us CD's of the all of the MRI images. On another tab on the CD I discovered their "findings" and "impressions" that they attached to the results. Any one with a medical background will probably understand more of this than I do, but I get the gist of it.

MRV AND MR OF THE HEAD WITHOUT CONTRAST, 10/09/2007:

HISTORY: Seizures with history of apnea.

TECHNIQUE: Multiplanar, multisequence MR imaging of the brain is
performed without contrast. MRV is performed using TOF technique.

FINDINGS:

There is severely abnormal diffusion sequence with restricted
diffusion involving the majority of the subcortical white matter
including the corpus callus. Findings suggest a diffuse anoxic
injury. The cerebellum is spared. The cortex is spared. No
significant edema at this point. The dural venous sinuses are
patent.

IMPRESSION:
Severely abnormal MRI with diffuse infarct involving the majority of
the cerebral white matter.
END OF IMPRESSION

I was completely numb. I have twins, which is a handful in itself, and now I have a possibly handicap child to an extent that we dont even know. I was devastated and felt a pain to my core that only a mother with a sick child can understand. I let that feeling linger for about 5 minutes. Any one that knows me knows that I am a tad bit stubborn. I remember changing my prayers at that exact moment to asking God to help me with this challenge. Help me to be patient and do everything in my power to raise a handicapped child. It was going to be one milestone at a time, and I was going to do everything in my power and use EVERY resource available to me to make sure that we attacked each milestone head on.

Maybe that sounds a little cold, but to be completely honest, Mark was losing it (and he would not disagree with that statement), so some one had to buck up. I was Mommy. Mommy-mode kicked in, and I was going to take care of my child, no matter what her condition.

They decided to do an MRI on Maddie the next day to compare. After all, they were twins. They had been exposed to the same inter-utero conditions, same at home conditions, etc. Oh! And did I mention that since it looked like Ruthie had been deprived of oxygen, they were legally required to investigate for child abuse? So both girls were taken to get full body xrays to check for any broken bones, bruising, etc. Although I am glad for the precautions that are set in place to protect children, you cant help but be a little offended when they are inspecting your children for signs of child abuse after you have literally been camping out in a tiny room with your sick children, obviously distraught over the whole situation. Obviously no evidence was found that I had smothered them with a pillow, and they moved on to some other possible causes.

Maddie's MRI came back that same day.

Same white spots. Same type of brain damage. Luckily it didnt seem as wide spread on Maddie's MRI as Ruthie's, but it was still brain damage. Here were the notes on Maddie's exam.

MRI brain, 10/11/07.

TECHNIQUE: Axial diffusion-weighted, T1-weighted, T2-weighted,
coronal T2 and FLAIR, and sagittal T1-weighted imaging were
performed.

FINDINGS:
Diffusion imaging reveals significant abnormal signal seen within the
subcortical white matter of the biparietal region and throughout the
splenium of the corpus callosum. Additionally, there is hyperintense
signal through the genu of the corpus callosum extending through the
minor forceps into the subcortical white matter of the frontal lobes.
Asymmetrically increased signal is also seen within the left centrum
semiovale. There is relative sparing of the posterior fossa and
brain stem structures.

Axial T1 imaging shows some vague scattered T1-hyperintense foci
within the bilateral centrum semiovale, left greater than right.
There is no mass effect. The ventricles are normal in configuration.
Coronal T2-weighted imaging shows no asymmetric morphology of the
temporal lobe regions.

IMPRESSION:
Significant abnormality involving the white matter as evident on the
diffusion sequence involving the periatrial white matter, corpus
callosum, deep and subcortical white matter of the bifrontal and
biparietal regions extending into the temporal lobes. There is
sparing of the brain stem and cerebellum. The findings likely
represent inborn error of metabolism, of uncertain pattern. The
pattern does appear very similar to the patient's sibling reported
separately.

Images and interpretation reviewed and verified by Dr. Wushensky.
END OF IMPRESSION

I was all of the sudden faced with the reality of having two handicapped children. That is not something that you can every truly be prepared for. Especially after a routine/boring pregnancy and un-eventful delivery. You just assume that when they tell you that they are perfect when they are born that it stays that way and that you have been through the worst of the uncertains. I had a million uncertains in front of me all of a sudden, and still no medical answers for me to hold on to. Looking back now, I think the lack of medical answers was God's way of forcing me to turn to him for answers to hold on to. He should always be the first one that I turn to, but lets face it, I am human and humans like facts and tangible things to hold on to. A diagnosis, a treatment plans. Any of those things I can hold on to and google. God knew what I needed more than what I thought I needed. He knew the end of the story already, but I was still in the storm.

3 Years Ago...Day 2 & 3

Day 2 & 3

If there is one thing that I would never wish on a new parent it is to watch your child on a ventilator. Ruthie just laid there with a tube down her throat and let the machine breathe for her. A feeding tube was in her nose to provide nutrition. My entire role as a new mother seemed null and void. What does a new mom do? Feeds her child, holds her child, changes her diaper. I could do none of that. I could just sit there and pump breastmilk. I dont remember, but my sister says that I would call her in the middle of the night and just recite to her what the monitor stats were. There are two colors on a ventilator monitor. One color shows that the patient took the breath themselves, the other color shows that the machine took the breath for them. I would call and just tell Katie, "Machine, machine, machine, machine, machine, Ruthie, machine, machine, machine, machine,machine, Ruthie, Ruthie, machine, machine...." There was nothing else I could do.

Maddie was down the hall, and Mark stayed with her. She also had a feeding tube, but luckily was not on a ventilator. It took them 3 tries to get her feeding tube placed properly. They would insert it, take her to XRAY to see if it was correct, pull it out and repeat the process. Third time was a charm. She started having a really difficult time regulating her body temperature, which was concerning to them. Since she didnt seem to be progressing like Ruthie, they decided to attempt the spinal tap. They did not get enough spinal fluid from Ruthie's original spinal tap, so they had to get her another one.

The girls were both set up with hour long EEG studies to check out any seizure activities. Maddie passed hers with no seizures, but she was also still on anti-seizure medication. Ruthie's EEG showed that she was having multiple seizures, most of which we couldn't see any physical symptoms of, despite also being anti-seizure medication. They scheduled Ruthie to have an MRI.

Being actually admitted into the hospital also brought along all of the "teams" of doctors, all with different specialties. Since Vanderbilt is a teaching hospital, each team can have any where from 5 to 10 doctors in your tiny little room at a time. We were introduced to their Infectious Disease Team (They had to rule out any types of infectious disease that could have caused fevers. They were also put on quarantine to be safe. Funny story about the time my mom came into the room in head to toe scrubs including a face mask), their neurology team (for the seizures), their endocrinology team (they found low thyroid hormone in one of the blood draws in both of the girls), a respiratory team for Ruthie, and a cardiology team for Maddie and her pre-existing congenital heart defect. More teams were added later. As a side note, these "teams" show up whenever their particular rounds are. So, it can be 2 AM and you wake up to 10 people in your room asking you questions. It can be 7 PM when they decide to show up. Not to mention with so many "teams" coming and going, you just kind of lose track of who is who. Each team requests that you repeat the story to them of how you ended up there. I seriously considered just typing it out to hand to them.

Because you have no idea when doctors are coming, if you are not in the room when they come, you miss your chance to talk to them, get updated or ask them questions. Not to mention Mark and I are trying to cover two different rooms, since our children couldnt be together due to the "infectious disease" concerns. We were so blessed to have family and church family that came to help. You could only have 2 people per room, so we were allowed a total of 4 people back there. Ladies from church would come and just sit in the rooms with the girls so we could go and shower, or go home for a few minutes, or go get something to eat. That way if some doctors came by, there was someone there to get an update. Those people that would sit with the girls were such a blessing to us. For an hour or so, we could get away and get out of the hospital and try to have a little bit of normal.

We still had no answers. They would come in as each test ruled out something it WASNT. It seemed like they were taking blood draws from the girls every time they came in the room. I am surprised the girls had any blood left.

On Tuesday they tried to start weening Ruthie off of her ventilator. They tried to put her on a CPAP, but she would only make it for about an hour before she had to be put back on a ventilator. They tried several of these tests throughout the day. By the end of the day she was only going 20 minutes before having to be put back on the machine. When I went to sleep that night they told me they were going to let her rest and do another test at 4 AM to try to ween her off again.

Maddie was moved out of PICU and into a regular room on the 7th floor. That meant Mark and I were swapping between the 5th floor PICU and the 7th floor main room. Whenever doctors would show up, we would call each other for the other to come up or down.

These three days were actually the quiet before the storm.

3 years ago...Day 1

So, the girls had a birthday on September 25th. Ready for a weird confession? Although I know their birthday is a milestone, October 7th is a more important day for me. It was 3 years ago, on the first Sunday in October, which would be today. I dont know why I have never actually written down the story of the girls being sick. I know 3 years ago I wasnt about to make any assumptions about what the end of the story would be, last year was just pure chaos, and I feel that the two children that I look at each day now make for an even more amazing ending. It is a long story, so I am going to break it into parts. So, here goes.

As far as newborns go, the girls were super easy. A little scary kind of easy. Dont get me wrong, they were newborns, up every couple of hours. But, they were both breast feeding well, sleeping as well as you can ask, etc. My mom was down here helping me out, and my dad came down on a Friday night for the day to visit. I sent my mom to get a real night sleep at the hotel with my dad and told her that Mark and I could handle the night since Mark didnt have to work on Saturday. Of course, the girls picked that night to be miserable! I figured my "normal" newborns had arrived. All day Saturday they were just a little fussy, but we got through the day. We even decided that we would take the girls to church the following morning. I went to feed them for their 9 PM feed on Saturday night and BOTH of the girls refused to latch. It was so strange. I didnt know what to do. They were only 11 days old and my sister (who had already done this with 2 kids) informed me they were too young for a hunger strike, so I was stuck. I pulled out the pre-made formula that we had swiped from our overnight Vanderbilt jaundice visit the week before and tried that. They took it. Although I was not pleased about the not breastfeeding deal, they had been so fussy all day, I gave in. First rule of twins: Survive.

They refused to latch at midnight feed also, so out came the formula. Ruthie just flat out refused to eat at the next feed. Both girls were miserable through the entire night. I actually fell asleep in our spare bedroom with Maddie on top of me and my mom fell asleep on the lazy boy with Ruthie in the nursery. We were up all night. For the 6 am feed, I woke up to my mom calling me into the nursery. Ruthie felt warm. I broke out my brand new rectal thermometer that I had no idea how to use as a new mom. 102.5 fever. Panic. I took Maddie's temperature. 102.5 fever also. More panic. Paged the pediatrician for the first time. He sent us to Vanderbilt saying we should plan on being there for the night since they hold newborns with temperatures to check for meningitis, etc.

Since we had been to Vanderbilt less than a week before that for jaundice, the staff remembered the twins. They moved us back into a holding area and put the girls in incubators and started the fluid collection. Ruthie first. Her blood draws were the worst. She was 5 pounds, and they couldnt find a vein. I felt like a horrible mother, but I had to leave. They made us leave for the spinal tap anyways. After we came back in, Maddie was sleeping in her incubator in the corner, and Ruthie was mad at the world. Mark took her little finger in his hand and tried talking to her. Mark called the nurse over. Ruthie was squeezing his finger as she started convulsing in rhythm. The doctor came in and looked at her eyes. Seizures. They gave her some anti-seizure meds through her IV and they stopped. By this time her fever had gone down, so we knew they were febrile seizures. Why is my 12 day old having seizures? Convulsing again. Another round of anti-seizure meds through the IV.

It was close to 10 AM and Ruthie was miserable about life in general. I mentioned to the nurses that she really hadnt eaten since her 2 AM feed, so I thought I should at least give it a try. I took her out of her incubator and tried to give her a bottle. No luck. Newborns are floppy anyways, but she went a little limp. I look up at her monitor and I call the nurse. " I think her oxygen monitor came off her foot. It says her her 02 is at 40%". Then the words that ring in my ears still. "She's not breathing! Bag her!". My child is grabbed from my arms and the screaming, crying mother is kindly escorted from the room. I collapsed on the floor in the hall, screaming. My mom just held me praying over and over again, "Please dont let her die, please dont let her die, please dont let her die." They get her breathing again and let me back in. What in the world is going on? No one seems to know. They decided to take Ruthie for a CT. I decide to go with them to get the CT and Mark is going to stay with Maddie. We get half way down the hall and she stops breathing again. They resuscitate her and we wait in the hall a few minutes. They try moving her again and her 02 stats drop. We are left with no other choice but to intabate her and let a machine breathe for her. She is moved up to the Pediatric ICU. We arent able to see her for a little bit while they get everything situated up in PICU, so we stay in the ER with Maddie.

They have not even began any fluid draws on Maddie. They take her blood and urine and try to put in an IV line. We know from our jaundice stay a week ago that she has hard veins to find. Not much has changed in a week, and they finally get the line into her tiny little 5 pound body. Maddie's fever has dropped also. We know a spinal tap is coming, so we are just waiting until they kick us out for that. Maddie starts convulsing. We page the nurse. Seizures. They give her some anti-seizure medication and they stop. She begins convulsing again, but on the opposite side as before. More anti-seizure medication. The doctors were concerned that breathing problems would come next, just like her sister, so they hold off on the stress of a spinal tap. Although she technically should not have been in PICU for just a fever and seizures, they were kind enough to admit her to PICU so that we could have both of our children on the same floor at least. I have a feeling they could see the stress and fear in our eyes.

As they are moving the girls up to the PICU we walk out into the waiting room of Vanderbilt Children's. An entire waiting room of our family and church family from Hillsboro Church of Christ are there waiting for us. It was around 11:30 AM, so they had come over as soon as the "Amen" was said on the closing prayer. They hugged us, they stayed and prayed with us. We had no idea what was going on. Our church family would become a huge part of this story.

That was Day 1 of 10 days.