So I just spent 45 minutes writing Maddy's birth story. Then I found this post that I had not yet published. Matt is awesome and was able to find all the blog post we did as we went through the journey of the beginning of Maddy's life. I forgot he had given me this when i started writing the other post I wrote tonight. Here is the raw version for you
This is from Wes- I think the rest are either from me or Matt (they are marked with who wrote them)
Okay... I sit here in awe of the events I will have to endure today.
Most of you know what is going on. For those who don\'t, I will catch
you up to speed. Misty and I had a little girl on April 9th at 12:25
am. She weighed 7lbs 2 oz and was 21\" long. She is beautiful. Yet, she
is not perfect inside as she is out. Regrettably, I have to inform you
all that Madyson is afflicted by a VERY rare metabolic disorder call
Nonketotic Hyperglycinemia (NKH). Basically, what that means is that
she inherited an uncommon recessive gene from both Misty, (my wife),
and myself that causes her metabolic system to inefficiently breakdown
the amino acid, glcyine. These mass quantities of glycine are building
up in her brain stem and have caused extensive neurological damage.
This week, we were faced with the worst choice to be made by anyone
ever. We had to decide whether or not to remove our little angel from a
respirator and let her go or to keep her on support until another part
of her brain took over her respiratory functions. We both felt that
since this horrible disorder would for the most part, prevent her from
having no kind of funtional life whatsoever, it was best to remove
support and let her go with God. We had decided to do so at 12:25 am
Sunday. For some very odd reason however, due to legalities and
circumstances with the doctors not being there and their requiring two
signatures from different doctors, our wishes were unable to be
fulfilled. I deeply feel that every thing has happened for a reason.
Yesterday, Madyson began breathing on her own... yet not enough to
actually oxgynate her lungs... but she is trying. We are still going
ahead as planned and removing her from the ventilator at 12:25 am
Tuesday, (Tonight). We still feel, as we are certain that she would
live a life tortured by seizures increasing with intenstity as time
passes and will essentially progress no further than a vegitative
state, that we have made the best decision. If she does however breathe
sufficiently enough on her own once the vent is removed, we will begin
treatment for this horrible affliction and go from there. What happens
after tomorrow night is strictly up to her and God. Right now, I am
sitting in a room at the Holiday Inn Express waiting on Misty to get
ready. My thoughts are so scattered and feel as if my world is about to
collapse. I just don\'t understand how or why this happened to us. I
know that we are good people. I believe that we deserve the right to
have beautiful and healthy children and am angry that we were not given
that priviledge. Part of me really feels as if we are making the right
choice, but the events of the last day or so, have really made me
question that. I do believe with all of my heart however, that it is
truly up to God to determine whether or not Maddy will breathe
independently or not after tonight. I am just scared that if indeed she
doesn\'t, that I will regret this decision for the rest of my life. As
we are ready to go off to spend the day with our little angel, I am
gunna wrap this up. But before I end, I would like to thank each and
every person who has supported us through this ordeal, everyone who has
helped take care of us and most importantly, everyone who has prayed
for us and kept us in their hearts. We love you all and there are no
other words I can describe how I feel about you all. Thank you for
sharing in our joy and misery... Thats\'s what family does... and you
are all family to me.
04.22.06|Misty|I\'m not sure what everyone knows so I will start with last Saturday
(4/8). My water broke at about 5 pm. I went the hospital and wasn\'t
dialated too far, but because my water was broke I was admitted. They
started pictocin at some point (i had not idea of time by this point).
and my contractions became more regular. sometime between 11 and 12 I
moved and the fetal heart monitor fell off and they lost Madyson\'s
heart rate. When they were trying to find it agian they could not
because they couldn\'t tell if it was mine or hers because it had
dropped. They then put an internal heart monitor on and called for an
epidural. the doctor has also called the OR team to do a C section
because Madyson\'t heart rate had dropped. as they were getting ready to
move me to the operating room the doctor checked me one more time and
Madyson was ready to be here, there was not time for a c-section. she
was born at 1225 Sunday morning (on her due date). she was not
breathing when she was born but was breathing again very soon. due to
the complications they sent her to the NICU at Baptist South in
Montgomery. she appeared to be doing okay until sunday night/monday
moring at about 3 am when she quit breathing. she was put on a
resporator at that time. the doctors were really puzzled as to why she
was declining. after several test and finding out a cousin\'s child had
a rare genetic disorder she was tested for NON-KETOTIC HYPERGLYCINEMA
(NKH). (there is very little known about NKH and it is a terminal
disorder that severly affects the brain. Our bodies produce an amino
acid called Glycine. Our bodies break down the glycine as it is
produced. In Madyson\'s case, her body produces the glycine faster than
her brain is able to break it down, causing the glycine to build up on
her brain stem. The glycine build up causes severe brain impairment and
seizure activity.)
We were told on Friday that it is definitely NKH. Her levels were
really high. the blood to spinal fluid ration was 3.3 (less than 2 is
normal) and her glycine levels were over 100 (under 9 is normal). On
Saturday she appeared to be trying to breathe somewhat on her own very
sparadicly. we were already trying to decide whether or not to leave
her on the resporator or not. we finally made the decision to take her
off the resporator and see if she breathed on her own. if she did then
that was God\'s way of telling us she was going to be strong enough to
go home iwth us, if she didn\'t we were ready for her to go be with him.
we wanted it done at 1225 am on Saturday night/Sunday night because she
would have been a week old. well it turned out that there was only one
doctor there and the law requires 2 physcians signatures to remove a
resporator. we felt that this was God telling us it was not time for
her to be removed yet. This moring when we got to the hospital the
nurse told us that Mady had been breathing on her own in addition to
the resporator since about 9 am. Her breaths per minute were in the
good range, but not deep enough to be taking in oxygen. As the
neurologist that has been seeing her will be back tomorrow as well as
the peditrician, we plan to have the reporator removed tomorrow
night/Tuesday morning at 1225. we will then see what she does and go
from there.
04.22.06|Matt|Wednesday, April 19, 2006
I talked to Wes today at about noon. He said that Madyson\'s situation
had improved and that they were going to attempt to remove
her from the ventilator. Also, the results from the last tests ran on
Madyson came back showing negative for her complications
being a result of NKH. It is still unclear exacly what has cause all of
these problems for baby Madyson but the doctors\' testing
and monitoring to determine the root of her complications are still
ongoing.
Monday, April 17, 2006
I talked to Wes at about 6:00pm. Misty was in with Madyson and Wes was talking to friends and family about the latest info.
Madyson resumed her breathing at 9am this morning however, her
breathes are not adequate in supplying her with the necessary oxygen.
As a result of some unexpected results in the last test ran in attempt
to determine the root of baby Madyson�s health issues and problems
Misty and Wes have decided to postpone removing Madyson from'the
respirator until further test can be performed.
04.22.06|Misty|Since the last email
We ended up not taking her off the vent Monday night/Tuesday morning.
The spinal fluid sample that was sent to the metabolic specialist had
blood in it and she could not give a true diagnosis. She requested
another sample, so we left her on the vent until they could get the
sample and give us the results. We got the results on Tuesday that she
does NOT have NKH. The doctors are not sure what is wrong with her.
They are leaning towards HYPOXIC ISCHEMIA ENCEPHALOPATHY (HIE). We are
not exactly sure what this is, but it is caused by an injury to the
brain. In Madysons case it would be the lack of oxygen to her brain
that happened at some point just prior to birth or just after birthbest
the doctors can tell.
On Tuesday when I was holding her she opened her eyes (the only other
time was on the day she got to the NICU). This was the first time I got
to see her do this Wesley saw her that first day while I was still in
Opp. It was really exciting for us. She opened them several times and
closed them back (more like a wink). On Wednesday she opened them
through out the day and would keep them open for several minutes at a
time. Today she again opened them through out the day, but did not keep
them open as long.
They took her off the vent yesterday and she is doing wonderfully
breathing on her own. Her breaths per minute are in the normal range
(30-60). The amount of oxygen she is intaking was a bit low last night
and they had to put her on oxygen, but it is at room air (this is what
we breath). They left it in her nose to help remind her to breathe. The
doctor also reported that she pulled away some when he was doing the
spinal tap. She has been a bit more reactive the last few days. They
also started her on formula today at about 3. When they checked to see
if she had digested it before feeding her again, she had digested all
that they gave her. The nurses believe that if she does well throughout
the night, the doctor will most likely increase the amount she gets.
She had a MRI this afternoon. We will meet with the neurologist (Dr.
Sanchez) and the pediatrician (Dr. Wallin) tomorrow to discuss the
results of the MRI as well as the plan for Madyson. We remain hopeful
that she will fully recover.
04.22.06|Misty| here\'s a short update...
not much change from yesterday. we did get results from the MRI. The
neurologist that normally reads the pediatric MRI\'s is out of town
until the 27th so another neurologist read it. Her brain appeared to be
premature...we are not sure what all this means, but possibly that it
could develop more and she could make a complete recovery...we are bery
hopeful even tough the doctors are not. they still report that her long
term prognosis is poor. she will have another EEG on Monday to see if
her brain activity has improved. They started feeding her yesterday. it
is through a tube that goes directly to her stomach. She is not
completely digesting the formula between feedings so they have
increased the time between feedings from 3 hours to 6 hours to give her
more time to digest the formual as she is just learning to work her
digestive system. digesting food and then taking food from a bottle is
the next step in getting better and ready to go home. this make take a
few weeks or longer.
04.22.06|Misty|4/22 11:30 pm
Only an hour til Madyson is 2 weeks old!! She continues to suprise us everyday. They took the oxygen off today because she continued to keep her blood-oxygern level up near 100 today. She has digested her food and had none left when the nurse checked before feeding her at 3 and 9. She was also moved to an isolete from the open bed. if you are like us you would think this was a step backwards, but the nurses assured us this was less'intensive. Before moving her to the isolete they tried turning off her bed to see if she could maintain her body tempature on her own, but she got a little cold. Hopefully she will soon be able to keep herself warm and be moved to a crib. I guess that is all for today....oh yea they put her in clothes! She is adorable (as always) in her little pink outfit.
Misty
04.25.06|Misty|4/25
Not much to report for the last few days. Madyson is doing about the same. For the last few days her tempature has been going from low to high and back to low again. I think it was the nurse we have had the last two days. She has been my least favorite! She is digesting her food more regularly now. We have not talked to a doctor yet about her EEG, but Beth reports that there was a message on our answering machine at home from Dr. Wallin (peditrician) that said her EEG showed some improvement... we hope to be there when he makes rounds tomorrow to talk to him. We will post more later
-Misty
04.27.06|Misty|4/27
Again, not much to report... she is about the same. We had Laura as our nurse today (she\'s one of our favortes!) I at home for the first time since the 9th. Lauren had majorette tryouts and I came to them (she made the line and is also head majorette..yea for her!). It will be good to sleep in my own bed for a night. I will be heading back to Montgomery in the morning. Wesley got to bathe her tonight (we both did the other night but this was the first time he got to with out me)
Misty
05.02.06|Misty|5/2
Be sure to read Wesley\'s blog from yesterday.
This morning I received a call from the doctor before I got to the hospital. Madyson\'s lab work was irregular. Her white blood cell count was elevated. Dr. Wallin ordered antibotics and some other test to try to determine the casue of the elevation. He also gave her some blood. She again had not digested all of the food from the 6 am feeding. Dr. Wallin also reported that her stomach was soft
9which is good) but she had little bowel sounds when he listened to her tummy. He has stopped her formula for now to try to determine if the infection is causing her not to digest. We will continue to pray that God will see her get better and we will one day be able to take her home.
Misty
05.04.06|Misty|5/4
Just got home from the hospital. Madyson is about the same. She was moving around and had her eyes open for the majority of my visit tonight. She started getting formual again at 3 and had digested everything both times they checked. She is only getting 3cc (5cc=1 teaspoon) but they will up it every 3rd feeding if she continues to digest. We continue to pray that God will allow her to get better so that we can bring her home. She is still getting antibiotics and will for the next week, just to make sure the infection is gone. her white blood cells are back to normal levels. We continue to take it one day at a time.
On a positive note, we have met several other families whose babies have been admitted to the NICU in the last week or so. One of these babies got to go home today. The other will most likely be going home in 5-7 days. As you pray for Madyson, please also pray for Eli to continuing getting well enough so that he can go home.
05.06.06|Misty|5/6
Madyson was started back on her formual on Thursday afternoon. She is digesting it so far. Last night when I left the hospital she was up to 12cc...still not much, but it is the most she has gotten. We will continue to pray that she is able to digest the formula. Her tempature has still been somewhat up and down. It has not been as crazy in the last few days, so I hope that she is beginning to regulate it on her own. Her lab work is g'tting better. They changed her antibotic yesterday to one that the bacteria reacts better to.
She has decided that she likes to lay on her face..yes I said face. Her nurse will lay her on her stomach with her face to the side. Madyson keeps turning her head so that she is laying on her face. I do not know why she keeps doing this, but her stats are remaining high when she does this, so I guess she can still breathe. She also picked her head up and moved it when I was holding her.
We continue to see little improvements each day.
Eli is also doing better. he is off all machines and has started getting food. The doctor told his parents that they may get to go home in 5-7 days. Please keep them in your prayers too.
Misty
05.07.06|Misty|5/7
Not much to report. Madyson is doing about the same. She has an infection still and is still getting antibotics. When I asked the nurse what kind of infection she said it was bacteria with a name about this long (she held her hands out about shoulder width). She is up to 28 cc of formula and appears to be digesting it without any problems.
The nurse also mentioned looking for a crib for her...she is outgrowing the isolete that she is in.
Misty
05.10.06|Misty|5/10
So today when the doctor made his rounds, he discussed sending Madyson to Children\'s for a g-tube (feeding tube in her stomach). I figured a few days at minimum before we go, but he called and they had a bed for her today. The ambulance from Children\'s left with her at about 4:30. I talked to the nurse at Children\'s around 6:30, Madyson was there and doing fine. I asked about when they would do the surgery. The nurse said that they surgery people would most likely come around to see her tomorrow and decide then when to do it. Wesley and I are headed up there first thing in the morning and will more than likely have Madyson with us when we return home. We are not sure when this will be, but as soon as we know we will get the word out.
Misty
05.12.06|Misty|5/12
Okay so I was a little hasty saying that we would bring Madyson home with us the next time we came home. We were really not sure when they would do the surgery, but I guess I was hoping it would be within the next day or so... When we got there yesterday and talked to the doctor we were better able to understand what was going on. Because Maddy\'s surgery is not an emergency, she has to be scheduled. The surgergeons are suppose to let us know when they have her scheduled. The doctor said he felt like it will be about a week or so. We will then be about another week learning how to care for the tube and how to feed her iwth it. With all that said, we will hopefully be home in about 2-2.5 weeks.
Misty
05.15.06|Misty|5/15
We just got home from Birmingham. Madyson\'s sugery is scheduled for Wednesday, we won\'t know what time until late tomorrow or first thing Wednesday. She is still having trouble keeping her tempature regulated. It is generally too low now where it was too high in Montgomery. The NICU is a bit on the cool side, so we are hoping this may be the reason. Wesley and I also asked about trying her with a bottle. The nurse did this today (actually she has tried 3 different times). She got about 5cc down, but the nurse feels that is more her moving the bottle than Madyson actually sucking on the nipple. We will keep working with her once we get her home. Hopefully as with everything, she will eventually get this too. I think she is just going to do EVERYTHING in her own time.
Wesley is working tomorrow and then we are headed back to Birmingham. We are hoping to be home by the end of the weekend with Madyson, if not by the first of the next week.
Let us know you are reading these updates by emailing o'e of us...
Misty: twirler1979@hotmail.com
Wesley: liquid573@hotmail.com
05.17.06|Misty|Okay I will try his again..(I already typed this once and it didnt\' show up...)
We have had a very long day! We were originally told that Madyson was the first on the surgery schedule, which meant pre-op at about 7. We get to the hospital and find out she is not first, but an add on (work in). She eventually went down for sugery at about 2 (yes that meant waiting ALL day assuming she could go for surgery at any time). The sugery took about an hour and she did fine. She was then in recovery for about 1.5 hours. Wesley and I visited with her for a short while and then left to let her rest. We are not sure how long she will be her..but we have been told anything from 4 days to a week, So I guess we will be home when we get there! Her acutal tube looks kinda strange. It can be covered by her clothes, so most people won't even know she has it. Wesley did take pictures of it, but we will have to get them to Matt to get posted..we will work on that. Again, Thanks to everyone for the prayers, please continue to keep her in your prayers. On another note, we are taking volunteers to feed/watch our dogs this weekend. Our normal dog sitter (Beth) thinks she needs to have fun for her birthday and go out of town.... how dare her..j/k.. but seriously if you can help out let us know..PLEASE!
Misty
05.19.06|Misty|5/19
So they moved Madyson to a sorta room. It is a room with 3 other babies in it. It is alot quiter and less intense than the NICU. She was a little cold most of the day, but other than that is doing good. The plan is to have her up to full feeds (about 2 ounces) by Sunday. Wesley and I are going to stay with her starting Sunday night. We will learn how to feed her through her tube and how to clean the tube area. The tenative plan is to come home on Tuesday. This could change and is only tenative...depending on several different factors, including Madyson and how well she does or does not do with the feeding (she is doing great so far!)
Thanks to everyone for all the thoughts and prayers. I truely believe that is a major reason Madyson is doing so good. One of the others is God giving the doctors and nurses the knowledge they need to get her better.
Misty
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