Tuesday, 22 December 2009
Friday, 18 December 2009
Tuesday, 24 November 2009
I pray that you will have a meaningful time of giving thanks for the many blessings in your life over Thanksgiving. We will try to post some more specific updates on how we are after Thanksgiving.
Sunday, 4 October 2009
... On september 14th Bailey had her pediatric opthamology appointment. During our visit the doctor performed a series of tests on Bailey in order to determine how much her vision was affected by her brain injury. Unfortunately Bailey's vision has been greatly affected and she is considered legally blind. Although this wasn't a huge suprise to Matt and I, there is still intense sorrow that goes along with this news. I have felt discouraged, hopeless, angry, and sad that my precious Bailey may never see our faces, or smiles. Bailey will probably never taste ice cream, or eat strawberries, she may never be able to tell me how she is feeling, sing "Jesus loves me," or say "MOM," she will most likely never walk, ride a bike, or dance around with her brother and sisters. However, in the midst of this grief Bailey is giving me a new perspective and is showing me what beautiful really is.
...There are a number of moments throughout my day when it is easy to become frustrated. For instance when Carter and Mckenzie track in mud for the third time that day, or when they spill their spaghetti on the floor, or voice their strong will/opinions (which are typically different from mine) in very loud and passionate ways. Because of Bailey I realize there is beauty in these moments. Carter and McKenzie are able to play in the mud, they are able to eat orally, they can eat things like spaghetti, or ice cream, or strawberries. They are also able to talk and reason and express their opinions. As frustrating as these moments as a mother can be, I would give anything for Bailey to be able to do these things.
...Thank you Bailey for teaching me to see the beauty in things, and for helping me to become a better Mom! You are truly BEAUTIFUL!!
Saturday, 26 September 2009
Monday, 24 August 2009
Bailey continues to be on a developmental trajectory that will leave her severely and multiply impaired. In addition to an ongoing lack of head growth, she is beginning to exhibit many of the postural and tonal abnormalities that are typical for children with cerebral palsy. These patterns include increasing hypertonicity or tightness through her arms and legs and hypotonicity or low muscle tone in her trunk. She also is demonstrating clonus (a spasmodic alternation of contraction and relaxation of the muscles) that results in her ankles bouncing in a jerking motion. She is also "stuck" in many of the primitive reflex patterns that are typical for infants but then must become integrated to allow development of consciously controlled movement. As a result she continues to be unable to perform purposeful motor movements. She also continues to be unable to smile or verbally interact in an intentional way. The development of additional saliva as she begins to cut teeth has resulting in increasing difficulty for Bailey in managing her secretions. She often gags and chokes on the saliva and we have begun to use a suction machine to assist her with clearing her airway when needed.
Some of the positive developments include the addition of a new medication that along with the use of a feeding pump significantly improves her comfort with feedings. This also has helped her with sleeping and even occasionally napping during the day. Overall, in the past two weeks for the first time, she has had more comfortable days than days when she was in pain. This has been a tremendous blessing.
I personally often (certainly not always) feel a deep sense of peace in this time. In part this is because the tyranny of the immediate prevents too much deep reflection. But even more than that, it is the acute and daily reminder that this situation is so clearly beyond us. There is no illusion that we can control this situation. It just is. As a result it is easier to live in the present moment without fear of the future. Thank you all for your ongoing care and concern.
Tuesday, 14 July 2009
This is such a beautiful and powerful visual picture. Although it sometimes feels like that door is locked and we are only left with the “keyhole” view, it is our prayer that the door would continue to be pushed open at least a crack. One way that we continue to gain a glimpse of the larger story is through the thoughtful words and support that we continue to receive from friends, family and even strangers. Thanks to so many of you for your willingness to enter into the messiness of life with us!
A quick prayer request. Bailey will have an upper GI tomorrow morning at 9:45 in which they place a scope through her esophagus, stomach and the opening to her small intestine to check for structural abnormalities that may be contributing to her pain with tube feedings. In preparation she will not be able to eat after going to bed tonight. Those of you with young children know how challenging a hungry infant can be so please remember her (and us). Also that we may know better how to make her comfortable during feedings.
Saturday, 11 July 2009
i asked heather if there was a day that is harder to get a meal together and she mentioned that mondays are really difficult. soOoo...that's where this next idea came about...getting a fresh meal to them on mondays would be a huge help! if you are able to do this, please contact me, jaren....at firstname.lastname@example.org . i will place you on the list to the side of this blog so that if you forget the date...you can check the blog!
this last stretch of time has been increasingly more painful for everyone...
your faithful prayers and love mean so much to them!
they are such amazing people...a m a z i n g .
Wednesday, 8 July 2009
Thursday, 25 June 2009
a p p o i n t m e n t s
tuesday, bailey was in feeding therapy with heather,
she had 2 seizures in a matter of 25 minutes.
bailey continues to struggle through these sessions.
but, they continue to go and are praying for positive results.
she is having more seizures..and, they are harder to detect-
which must be so frightening. each episode physically wipes her out!
the doctor's have increased her medications in order to be preventative...
please pray that they will be able to prescribe the correct amount-
enough to stop her seizures, but will not cause her more pain.
p a i n
with each feeding, bailey continues to be in a lot of pain.
there are 3 or 4 really hard days of feeding to 1 good day...
this alone brings much sadness and ache,
as matt and heather can do so little to relieve her pain right now.
she is scheduled to see her pediactric neurologist in 2 weeks.
t e c h n o l o g y
matt and heather's internet has been giving them some trouble.
your emails and responses to this blog mean so much to them!
comcast is going to be fixing the problem...so, they will
be up and running again soon!
Sunday, 14 June 2009
Life has been very busy with appointments lately. Bailey has feeding therapy twice a week for the next 12 weeks, and has also started her physical therapy, and occupational therapy with the Early On program. As of now, they have showed us different excercises to do with Bailey at home to help her progress, and to reach her potential. Please pray that Matt and I would have chunks of time during the day to do these different excercises with her.
We wanted to share some of our "bright" moments as well. Lexi is cooing a lot and always has a smile on her face - her middle name, JOY is so perfect for her. Bailey has also cooed a few times and I have seen her smile once, which has been such a gift. I continue to hold on to HOPE that we will have many more smiles and a lot more cooing.
In closing, I just wanted to share one statement with you that has been such a source of truth and comfort in the past few weeks. Jesus Christ is not my security against the storms of life, but He is my perfect security in the storms. He has never promised me an easy passage, only a safe landing.
Friday, 1 May 2009
Yes we have tried car rides (which sometimes helps), putting her in the car seat near or on the dryer, in the swing with various "white noise" and countless other things. Please remember us during the "prime time hours."
Monday, 6 April 2009
This week Bailey has a swallow test. This will tell us if food is going into the stomach or the lungs. Please pray that Bailey is able to swallow correctly and that we could begin feeding therapy to possibly feed her orally.
We can't begin to express our thanks to everyone for the many ways they have surrounded us during this difficult time. We are so grateful to know that we are not alone, God continues to show us love through people like you. Thank you.
Friday, 27 March 2009
Tuesday, 24 March 2009
Friday, 13 March 2009
Thursday, 12 March 2009
Wednesday, 11 March 2009
Monday, 9 March 2009
We continue to be so grateful for the prayers, kindness and generosity of so many. Bailey is recovering well from both the surgery to place the feeding tube and the procedure performed to prevent reflux. The feeding (PEG) tube is in place and she is back to receiving full feedings and medications through the PEG tube. The central IV line was removed last night. Another EEG will be done on Tuesday as the neurologists determine if she will be coming home on one or two anti-seizure medications. We hope to be able to bring Bailey home to be with the rest of the family by Wednesday of this week. I am also extremely grateful for the generosity of my employer and several co-workers that will allow me to be at home over the next two weeks as we make this transition.
Friday, 6 March 2009
Wednesday, 4 March 2009
bailey is scheduled to have surgery tomorrow morning.
they will be placing the feeding tube in her stomach.
please pray that this surgery will go well
matt and heather covet our prayers as they walk through this day.
it is matt and heather's hope
Tuesday, 3 March 2009
Sunday, 1 March 2009
Friday, 27 February 2009
thank you for your faithfulness in praying for bailey and the rest of the mekkes/mccloud family.
we will have some photos of bailey up soon - so that you can see this little sugar!
Wednesday, 25 February 2009
Thank you friends for the love and support that you have given. Heather and I wanted to update you all on how the girls are doing and to ask for your prayers:
Friday: Heather was in our doctors office on Friday (February 20th) for a routine non stress test the week before our babies were to be delivered. One of the babies started to show signs of distress with a heart rate that would periodically drop. The doctor performed an ultrasound that showed she had very little amniotic fluid and in addition had her umbilical cord wrapped around her neck three times. Although these did not require an emergency cesarean delivery it was time for us to meet our girls face to face. After months of waiting and anticipation our beautiful baby girls arrived. Alexis was born first and weighted 6 lbs. Bailey was born two minutes later and weighed 5 lbs. Bailey needed a little encouragement to begin breathing on her own but this is not uncommon and she was doing well. Both the girls got the usual care complete with their first baths, foot printing (they actually fit on the cards this time), bracelets and cuddle time on one well deserving mom. After a few hours of holding the girls, giving kisses and taking pictures we checked the girls into the nursery for a few hours of sleep.
Saturday: At four in the morning Heather and I were woken by the neo-natal doctor (Neonatologist) who told us that the nurse had observed some unusual things with Bailey and that she had been moved to the neonatal intensive care unit (NICU) because she was suffering seizures. The medications that she was given over the next several hours to control the seizures sedated her to the point that she was no longer able to breathe on her own and she was intubated. Over the next few hours she was transferred from Saint Mary’s Hospital to Spectrum Health NICU where they would be able to perform an MRI with the breathing tube in place.
Sunday: During the first day that we were in the NICU at Devos Bailey had a CT scan and an EEG which both seemed to suggest that things were going well. The EEG suggested that the medication was controlling the seizures, and the MRI suggested that if there was brain damage that it was most likely mild.
Monday: Both the girls seemed to be doing well. Heather and Alexis were discharged from Saint Mary’ Hospital. Bailey was adjusting to the medication and was able to breathe on her own so the tube was removed and Heather was able to finally come in see her for the first time since Saturday. Late on Monday night Bailey was finally taken for an MRI which would probably give us a clearer picture of the extent of the injury she had sustained.
Tuesday: A series of doctors including the pediatric neurologists reported the MRI showed that the extent of the brain damage was much more extensive than was originally thought. The neurologist believes that within the week preceding the delivery Bailey suffered a massive brain injury. This injury was primarily the result of the twin to twin transfusion syndrome that had been going which was complicated by the umbilical cord being wrapped around her neck. Bailey shows extensive damage to every part of her brain with the exception of the brain stem. As a result Bailey will most likely never walk or talk and developmentally will stay in an infantile or pre-infantile state.
While the immediate urge we feel is to pray for a miraculous healing of Bailey, and we certainly do, perhaps the miracle has already taken place. Heather and I are able to hold this beautiful baby girl who has survived so much as well as her sister. Our God is good. Not in a cliché way but in a way that allows you to breathe that next breath. Through the pain we cling to his promise not to make level paths before us, but rather to make our feet capable of standing upon the heights.
Heather and i have thought often of our wonderful friends who said that hard things can make you bitter or better, and we choose better. We have seen these same friends not only pledge to be better, but also live out this pledge. This is our desire. Today through the pain and grief that comes with the loss of the dreams of an expected future we choose better. Tomorrow we will try to choose the same. We reserve the right to choose moments, hours or even days of bitter but our God is good.
As you pray for us, please remember a few specific things. First, that Bailey would learn to suck so that she may be able to take food by mouth instead of need a feeding tube permanently. Second, that she would develop the ability to regulate her body temperature as this can be a common complication of this extensive of an injury. Third, please pray that we would have the strength and ability to live in the present instead of fearing the future. Fourth, please pray for McKenzie and Carter, that they feel loved...as much of our time in the next month will necessarily be spent caring for Bailey and Alexis.