Wednesday, April 29, 2009

Goodbye to the muffs, at least for one day

video

Well, Mr. Greyson had another good day today. He was actually taken off the jet ventilator today and placed on the more conventional vent. Mom and I were so excited to see this today! This is simply a trial run but we are still cheering. So for now he is ear muff free. Funny enough, he figured out how to pull those little ear muffs right off. I’d look in his incubator and see an ear muff on his foot or one on his face! I think he was trying to tell us he was ready for a break. (I explained in an earlier post that Greyson needed the ear muffs because the jet ventilator is much louder and the machine is very close to him inside his incubator.

Grey’s PICC line was removed yesterday morning because the culture was still showing a positive to the infection. He will continue to be retested and the PICC line should be replaced Friday at another site. We are hoping all goes well with this.

Mom and I attended a PRO (Parents Reaching Out) meeting today, which was very beneficial. This group provides peer counseling to families with infants in the Neonatal Intensive Care Unit. We got an hour with a very well known neonatologist at Vanderbilt. I feel like I may have consumed the full hour with Greyson questions :) Interesting enough, the Dr. explained that he has been doing this line of medicine for 30 years and finds HELLP syndrome to be one of the most frustrating disorders, frustrating because the cause is still unknown after years of research and study. He specifically asked me in the meeting if I intended on having another baby. He said it is very hard to watch a mother try over and over again and have as many as four NICU experiences- one for each child. Moreover, he was asking me to precede with much caution in future pregnancy considerations. Unfortunately, women with a history of HELLP syndrome are considered at increased risk for complications in future pregnancies. So Greyson will be the one and only miracle for Matthew and me, unless God has another plan.

Tuesday, April 28, 2009

A Womb with a View






Monday-

Greyson had a wonderful day today. When we have our good days I am able to sit and think about some positives. Today I thought about Greyson laying inside this warm plastic box and realized its much more than a plastic box… it’s a womb with a view! How fortunate am I to have the ability to see my little one grow, this is truly a miracle. Now don’t mistake my positive outlook- everyday I am pained by the realization that he’s no longer in my belly.

I was surprised to visit this morning and see that Grey’s PICC line had not been removed. According to our nurse, Greyson was doing a good job of fighting this infection and the removal of the PICC line was still pending. He was also down on his oxygen settings and did not desat once during my visit- even when I changed his diaper and cleaned his dirty bottom! This was a first. Our nurse also explained that Greyson will probably be taken off the jet ventilator and put back on the conventional vent sometime this week- big improvement! I’m always cautious posting these future plans b/c conditions change like the wind in the NICU. Right now we are all silently cheering on our little man! We don’t want him listening and then deciding to make a change

Another milestone… Greyson had his first pacifier run today! I almost cried when I saw the little pacifier sitting in his incubator. I immediately questioned the nurse and learned he had taken it a few hours earlier and the nurse further explained that it seemed to comfort him. I tried to give it to him a few hours later but didn’t have much success. This will definitely be my next picture.

Saturday, April 25, 2009

One step forward, Two steps back...

So I started out this weekend with fear. Thursday Greyson and I had a wonderful day. His oxygen level was lower than it has been in weeks and he looked great. He slept so peacefully and to be honest it was the first day I didn’t want to cry during my visit. Carlye was Greyson’s nurse and we spent a lot of time talking about his current condition. We thoroughly discussed his PDA and she printed out materials to help me understand what exactly happens if surgery is needed. Greyson does not need surgery at this time and his PDA has gotten smaller… yeah! Furthermore, Caryle definitely eased my PDA anxiety- I am very fortunate that Grey has wonderful nurses like Caryle caring for him. So again Thursday was a great day.

And then comes Friday. I walked into the NICU and immediately noticed that Grey’s cover has been removed from his isolette (incubator)- this sighting is rare. I was instantly greeted by the fellow on duty and she explained that Greyson was not doing so good this morning. She further explained that he had thrown up, had blood in his stool and his stomach looked swollen. I listened and then whispered the worst… “are these symptoms of NEC?” NEC is an intestinal infection that causes inflammation of the lining, and in rare cases, necrosis (tissue death). Though it affects less than 5% of all preemies, the disease is treated as an urgent matter because it is painful and can progress rapidly-- sometimes in just hours. The prognosis is incredibly frightening and despite 40 years of research and 4,000 cases annually, the cause, cure and prevention of NEC remain largely a mystery. The fellow put on her best face and said “this is something we are considering and we are going to continue measuring his belly girth, monitor his internal gases with x-rays and start the administration of antibiotics. Momentarily, I felt like I had turned into emotional spaghetti. My insides were spinning. I knew I couldn’t vocalize the news so I sent Matthew a text message and refrained from calling family. I sat with Greyson and prayed fervently. The first glimpse of hope came when Greyson’s doctor showed up with a smile and said “the x-ray of Greyson’s belly looks good- I’m not going to keep leaning towards NEC and start looking at other possibilities” I left Friday evening not knowing what was wrong with Greyson, yet relieved he hadn’t developed the deadly disease among preemies called NEC. Sadly, many preemies lose their battles with NEC.

Needless to say- I called the nursery several times throughout the night for check-ups and seemed to be getting positive news “Greyson is doing good and his most recent belly x-ray is reassuring.” However, the nurse practitioner called early this morning (Saturday) and let me know that Greyson’s blood work was not good and they are now thinking he has contracted Staph Epididimus. My immediate thoughts- who’s not washing their hands and how can he contract this is in such a sterile environment?! Apparently this form of staph loves plastic and Greyson is surrounded by plastic. The likely culprit is Grey’s PICC line. This is an intravenous line used to deliver much needed nutrients. This is also a very risky line because it is inserted into a vein near the heart. So our steps of action: remove the PICC line, administer more antibiotics and watch very closely. Eventually the PICC line will need to be reinserted at another site. So tonight we visited our sweet baby and hoped for better days. I’ll do my best not to research this new risk, I have to constantly remind myself that Greyson is not a statistic- he’s our loved baby and I’m not going to let anyone predict his future.

Thursday, April 23, 2009

Chill and Grow

Well, Greyson and I have been hanging out the past few days. There aren’t many changes going on but we are still monitoring Grey’s PDA. Moreover, Greyson will have another echocardiogram tomorrow and we will evaluate the opening size. I promised myself this week that we would not fret over this PDA and I must say- I’ve done a good job. I’ve calmly watched Grey “chill and grow this week.” We all laughed last weekend because one of the nurses told my mom that Grey needed to “chill and grow.” He’s made quite the impression in the NICU with his little fits. He definitely keeps those nurses busy. However, we have noticed that he is tolerating touch much better this week! This is a huge improvement and I hope he continues to chill.

Greyson is also looking a little plump this week! He is clearly filling out. The nurse practitioner explained that he might lose a few ounces here and there because he is currently taking lasix to reduce fluid retention. He actually weighs a little more than he should right now- which could indicate infection or fluid build up. I’ve been getting so excited about his weight gain and then I was quickly jerked from my high when told “too much weight gain is actually bad.” In the NICU you try to hold onto the tiniest of positives. I was thrilled on Tuesday when I noticed Greyson was wearing a bigger diaper. He is actually wearing a brand name, pampers, and isn’t wearing the specialty diapers made for tiny tots. I immediately sent Matthew a picture via phone. I have to say, it was one the highlights of my day.

Monday, April 20, 2009

The weekend

A little disheartening news, Greyson’s PDA did not close with the medication. I spoke with the nurse practitioner yesterday evening and we haven’t decided what the next step will be. Furthermore, Grey’s PDA will continued to be monitored and surgery will not be scheduled until there is a definite need. This opening allows blood to flow directly from the aorta into the pulmonary artery, which can put a strain on the heart and increase the blood pressure in the lung arteries. If an echocardiogram shows any strain on the heart or if the circulation of blood begins flowing in the wrong direction then Grey will need surgery. I’m not relieved by this news. Honestly, I can’t even think about surgery- it makes me so sick, physically and mentally. However, I have been told that Greyson’s lungs will improve if the PDA is closed. We haven’t forgotten about those tiny lungs, they are still very immature and need a lot of assistance. His chest x-rays are still unclear and showing too much fluid.

This weekend was difficult. We are definitely on one of the downward slopes of the roller coaster. Matthew and I are more than eager for some good news. Good news meaning a concrete improvement. Lately I have been feeling desperate. Everyday I talk to the nurses and doctors with pleading eyes- please tell me something good! I’m sure they are familiar with these eyes; I’m not the only mother silently begging with her eyes in the NICU. I know that our strengths will continue to be tested- some weeks are more strenuous than others. However, everyday that I look at my beautiful boy I feel a little stronger- a little less weary.

Friday, April 17, 2009

Little Precious

video

I don’t have any updated news right now. However, Matthew and I will learn tonight if the medicine closed Greyson’s open PDA. The doctor’s and nurses have been listening for a murmur, which tells them whether the PDA is still open. Yesterday the nurse explained that she heard a murmur early in the morning but also said that the nurse practitioner did not hear the murmur a few hours later- I’m not sure what to think of this information. At this point, I am attempting to mentally prepare myself for the news. There is a chance that if the PDA doesn’t close then we attempt another round of medication before surgery is scheduled. I’m sure the decision of another round of medication is dependent on whether the PDA shows any signs of improvement- meaning the opening is smaller.

I have included a short video with today’s posting. This is our precious Greyson. I think this small clip gives him so much more life than photos. I’ve watched it probably a hundred times. Maybe I’ll figure out how to rotate the next video :)

Tuesday, April 14, 2009

Tuesdays with Grey




Today Mom and I visited with Greyson for about 5 hours. Overall, he seemed to be having a good day! We are going to start the medication tonight for his PDA and this medicine will be continued for 72 hours. I’m not sure when we will know if Greyson’s PDA has closed. This is something I will ask the nurses or doctor tomorrow.

Greyson’s regular nurse was back today. Her name is Terri and she told mom today that she loves Greyson. I can’t tell you how much that means to me. I’ve struggled a bit with the rotation of nurses. I want Greyson’s nurse to actually know him- to have the ability to anticipate his needs. Most importantly, to know that the little guy doesn’t like to be touched, have his diapers changed or head rotated. I simply think that this consistency would improve the continuity of care. And this will also help console me.

We also had two special visitors today… Lilly and Jamie from Apple! I miss my Apple friends like crazy. I planned to surprise them with my little pregnant belly but my shocker moment was sorrowfully interrupted. On a happier note, these girls came with a very exciting gift- a flip camcorder!! This mini HD camcorder will capture the precious moments of Grey’s life and progress. We are so fortunate to have such wonderful, thoughtful friends!

Another positive to share… I actually reached out today and spoke with another mother in the NICU. This is something I have avoided from the beginning. Sadly, I’ve sat quietly for 15 days only speaking to Greyson, his nurse and doctor. The reason for this avoidance is fear. Fear that I will learn that Grey is the smallest baby or fear that I will learn that Grey’s condition is worse than others. However, today I did not feel fear. This mother was unbelievably informative and kind. This is her third premature baby. I let down my guard and before I knew it I was crying with a complete stranger- a stranger who not only walks in my shoes but shares the same everyday uncertainties. In the beginning I considered this a very private situation- I wanted Matthew and I and our families to be our only support. I was apprehensive of the blog- I have never been a blogger. However, this blog has opened the door to so many other families in the same situation. I have been sent numerous blog links of babies just like Grey- tiny and fighting! Kim Meeks- I thank you for sharing Mary Farris! We visit Mary Farris’ blog often. I searched her blog last night hoping to find some information about PDAs and sure enough I got my answer or should I say reassurance.

I snapped a photo tonight of Greyson with his new imuffs. We haven’t posted pictures lately because there is so much going on in his incubator right now. Several new tubes and a new machine. And yes, those little white straps serve a purpose- to comfortably restrain our wiggle worm.

Monday, April 13, 2009

Echogram

Well, we reached our first milestone today. Greyson Matthew Stokes weighs 2 pounds! My little heavy weight.

However, with good news comes bad news, right? We have been monitoring Grey’s patent ductus arteriosus since birth. Moreover, Grey’s first echogram revealed that his PDA was still open but the opening was very small. In normal newborns, the ductus arteriosus is substantially closed within 12-24 hours after birth, and is completely sealed after three weeks. However, in preemies the DA does not always close after birth. Another echogram today revealed that Greyson’s PDA opening has enlarged. The doctor thinks this is the reason for Grey’s unclear chest x-rays and the constant struggle with oxygen desaturation. So, our plan of action includes a dosage of indomethacin for 4 days. Studies show that 50% of PDAs will close with medication and 50% will require surgery. So, I am asking for more prayers. Please pray that the medication works. I can’t even fathom the idea of Grey having surgery- he is so fragile.

I wonder when these reports will not be so exhausting. As soon as the doctor pulls a chair to Grey’s bedside… I not only start sweating but I immediately feel drained. Sometimes I can’t even find the energy to complete thoughts or ask questions that make sense. I have to ask the names of medications like 4 times and I find myself trying to repeat what the doctor has said… this is always difficult. Later I attempt to reiterate the information to Matthew when he arrives only to find that none of it makes sense. Tonight I will include Matthew in my prayers. His strength appears to be crumbling a bit. He was so disappointed by tonight’s report.

Tomorrow is another day… another reason to be grateful.

Saturday, April 11, 2009

Breathe

Breathe.

I’m not sure if I am asking Greyson to take confident breaths or if I am talking to myself.

I didn’t update the blog yesterday because we didn’t have a very good day. Moreover, I arrived at the hospital with my dad and immediately noticed that Grey was distressed. His tiny arms were frailing around and he had a look of suffering on his face. This face was new and I immediately felt nausea. Sometimes I think I am actually going to vomit on the floor of the NICU when I see something I don’t like or hear something unnerving. I know I will not let this happen but it doesn’t make the strong sensation go away.

Dr. Jones let me know that something had happened to trigger this distress but the diagnosis was unknown. X-ray was on the way to snap a photo of Grey’s chest to confirm all his tubing was in place. Besides his anguished disposition, all his numbers were reading high. His heart rate was significantly elevated and his oxygen level was set at 80% (this is usually between 35-40%). Grey was letting the vent do all the breathing. Again, helplessness… I wanted to scream- something is wrong! I also wanted to call Matthew but I didn’t want to upset him and I couldn’t decide if I was overreacting. After reviewing the x-ray images Dr. Jones explained that everything looked right. The solution was to sedate Greyson. Was it possible he was simply having a bad day? Besides the bad day idea- Dr. Jones explained that Grey’s chest x-ray from earlier that morning did not look good. His lungs are still inflamed- meaning either lung disease, infection or too much fluid- we don’t want any of these. Furthermore, the doctors have decided to try a new medicine. This is the same form of respiration medicine that was given to Grey when he was first born. A baby born at 25 ½ weeks or 26 weeks has not produced surfactant, a chemical that helps keep the lungs inflated. So Greyson is receiving an artificial form of surfactant. I took this information and felt a tiny sense of hope. Hope- looking forward with reasonable confidence. I have learned that with a clear action plan, I have a stronger sense of hope. I sat quietly in the NICU rocking chair with enough hope to calmly pray. Greyson’s nurse, Carlye, attempted small talk and I decided to give in. We chatted and I immediately liked her. I like and appreciate all Grey’s nurses but there are always a few I feel a closer connection with- meaning these women create a sense of reassurance and have the ability to instill confidence- Carlye is one of these nurses. Matthew and I hope to see her again soon. Speaking of Matthew, when he arrived after work he was also concerned- I didn’t even have to say a word. He flipped back Greyson’s incubator blanket and immediately said “he looks different- what’s wrong?” At this time, Grey looked different in another way- this was a look of sedation. I explained the sequence of events and he too had a few questions for Caryle. We left the NICU that night talking about the new medicine and hopeful that tomorrow would be a better day.

Update Today

Matthew and I visited Grey today and his mood was better. He still looked a little sedated but I’ll take a dazed expression over anguish any day! His numbers were reading better too. We haven’t received an update on his chest x-ray images but I’m thinking there isn’t an update yet- the medicine probably needs time to work. I don’t want to include every single detail of our visit b/c I have written too much thus far. However, we left the hospital peaceful. Matthew wanted to stop by the mall, where he purchased a zebra toy for Grey from pottery barn kids. He had already researched this toy online. I love the idea of him browsing baby websites and taking notes.

Thursday, April 9, 2009

A New Machine

A new machine.

Well, the doctor’s have decided to try a new ventilator machine with Greyson. This machine gives him more tiny breaths of air. We are trying to prevent him from desating so often. In the past three days we’ve had to go up significantly on his oxygen settings and what we want to do is go down. Dr. Reese explained yesterday that Greyson is going to be on the vent for sometime. Moreover, his chest x-ray is still showing inflamed lungs so he is currently taking antibiotics just in case he is fighting an infection.

Yesterday I spent most of my day with Grey. I left and went to lunch with Meghann and Stephanie, which was nice to spend some time with friends. When I came back from lunch, Greyson had bed head. I could not stop smiling! I swear it was the cutest thing ever. He had a patch of hair sticking straight up. We’ve recently noticed that Grey loves to clutch things. Anything within reach his little hand will grasp. The nurse actually had to remove his hand from his ventilator tube last night. It looked liked he was trying to pull it out of his mouth. I’m sure he is tired of those tubes being in his mouth. Oh and speaking of tubes- he had his feeding tube placed back. We are starting over with 1 cc and going to check for any residual breast milk. There’s also a possibility that Greyson may have a tiny hole in his esophagus but we don’t want to speculate right now. If he continues to have undigested milk in his belly then we will test for this disorder next. So right now we are focusing on the lungs. I pray everyday for those tiny lungs!

I also had my staples removed yesterday! While at the women's clinic I spoke with one of my doctors that was monitoring me when I was first admitted into the hospital. We had a nice conversation. More importantly, she explained that I was still a hot topic among my group of doctors. She said she hoped that she didn't offend me but "my condition was definitely intriguing to them." She said that I simply did not fit the condition. Moreover, they can not link anything to why this occurred and why it occurred so early. She also explained that the reason they brought several resident groups into my room was to explain to them the oddity of preeclampsia and HELLP syndrome. I wondered why I would wake up to 6 intriguing faces in white coats :) She also asked to see my legs and ankles- she wondered what they really looked like. I too almost forgot that I have ankle bones and my legs were thin. As of today, all the swelling is gone and I pretty much look like my old self again. Unknowing of my situation- the nurse removing my staples said "wow, you look amazing" I smiled and politely let her know that my baby was very early. I was sad for a moment the other day when I realized that I do not have any pregnancy pictures. Now how will I prove to Grey that he is mine :)

So I’ve been wondering lately when I am going to be able to hold my precious baby; I haven’t had the courage to ask Grey’s doctor because I fear the answer. So for now I will wonder in silence and pray that it will be soon.

I am going to have Matthew take some more pictures either tomorrow or this weekend. With his new machine, Greyson wears yellow ear muffs because the new machine is considerably louder and we don’t want anything to disturb our little man. So Matthew will take some pictures of Grey with his new imuffs.

Aunt Ellen- we noticed that you joined the blog- good job!!

Tuesday, April 7, 2009

Two Tickets Please

Two tickets please… for the roller coaster ride.

So I am slowly learning that Matthew and I are going to have continuous ups and downs with Greyson. The nurse practitioner said today that “we are definitely on a roller coaster ride.” Moreover, the roller coaster ride is to be expected with preemies.

So Greyson is still having episodes and he continues to desat. Matthew and I are still doing very little touching- we do not want to agitate our little man. The first few days I really enjoyed being there during Grey’s care time but now my anxiety level raises during this time because I know it is going to upset him and the possibility of desating is high.

I received a call early this morning that Grey’s feeding tube has to be temporarily removed because he had too much undigested breast milk in this belly and a chest x-ray showed the possibility of fluid- meaning some breast milk may have gotten in his lungs. Dr. Reese would like for Grey’s chest x-ray to be clearer. So today I will pray all day long for his lung development and a better chest x-ray. And I would also like to see his feeding tube placed back- he needs his momma’s nutrients so he can continue his weight gain.

Mom and I visited with Greyson for several hours this morning. He had one little episode with his breathing but it was nothing like the other night. However, I still worry. Sometimes I find myself wanting to make unreasonable request like… can I have a nurse just sit next to Greyson’s incubator all day? I hope the nurses and doctors don’t think Matthew and I are annoying. We have some many questions and now that I am familiar with all the machinery and numbers I question his settings. I find myself saying “do you think his oxygen level needs to be turned down- it has been reading high for the past 15 minutes and I don’t want it to hurt his eyes” Too much oxygen can hurt babies eyes. These nurses are wonderful and definitely don’t need assistance with their job :). I just want the best for Greyson- like any mother.

I went to work this evening and added Greyson to my insurance. I have received two letters urging me to do this as quickly as possible due to the urgent critical matter. It was really nice seeing my friends. I am still weak and many times the pain is still strong so I didn’t actually make it upstairs to visit with everyone. Tomorrow I go for a check-up and I might get my stables removed!

Well, tomorrow is another day and I pray for a better report. Thank you all for your prayers.

Monday, April 6, 2009

A Quiet Evening


I visited with Greyson tonight for several hours. My dad dropped me off around 3pm and he stayed and visited for about an hour. The nurse warned me upon arrival that “he had a spell earlier” Spell meaning he became so agitated that his oxygen level has to be bumped up. So, Grey and I had a quite evening. I quietly spoke to him and simply rocked in a chair and watched him. I didn’t disturb him until his care time- if I am there during this time, which occurs every three hours then I change his diaper and sometimes I feed him. He was actually amusing me a little tonight. Anytime we adjusted the light visibility or spoke loudly he opened one eye for an evaluation. He would look all around and I just imagined him looking for something to be agitated about. As soon as Matthew arrived at 6pm he opened his eye to re-evaluate the new voice- I hope he knows that is Daddy’s voice. Matthew talked to the doctor tonight about last night’s episode and the doctor confirmed that the behavior is to be expected from preemies. I understand that Greyson doesn’t breathe on his own but I don’t want to see him turn blue and for the nurse to scramble to “bag him” I also have it in my head that the alarms on his machine weren’t sounding- however, I don’t know if this happened or not. I was so zoned in on what was happening that I’m not sure if I heard anything. Regardless of the exact events, I am thankful. Thankful for the nurses and thankful that Greyson is a fighter.

Greyson is up to 3 cc’s of breast milk and hopefully he is able to digest the amount and he can continue with the increases. He is still weighing in at 1 pound 11 ounces and I dream of the day that he will weigh 2 pounds! This will be a milestone for me.

Greyson also got to visit with Grandpa Stokes today. Matthew’s parents are wonderful and closer than us right now so they check on him constantly. We are fortunate to have the support of such loving families.

Good Days, Bad Days



Let’s see, how does the ole saying go? There will be good days and there will be bad.

Yesterday Matthew and I visited with Grey for three hours. During these three hours, we also decided that the previous day we had done too much touching. I had my hands in his little incubator a lot. I just want to touch him so bad and comfort him and I want him to know that Mommy and Daddy are there. The nurses are very encouraging and want me to touch Greyson but they also let me know that “touching him agitates him” This agitation causes his heart rate to speed up and then it always seems soon after that his machine reads “desat” which means desaturation in oxygen. Greyson’s baseline is around 80% and the machine goes off when his oxygen level falls under that percent.

I assisted yesterday with his care. I changed his diaper and fed him through his feeding tube. Yes, he is up to eating 2 cc’s a day! With that amount, I think I am safe with my breast milk supply for awhile. Grandma from IN and Aunt D stopped by on their way back from the airport to meet Mr. Greyson. I could easily read the shocked looked in Grandma’s eyes. She said he was beautiful and looked like a doll. I think it hurt her just looking at him.

After his visitors left, Grey decided to give Matthew and I a good scare. I’m still not sure exactly what happened but apparently he has the ability to position his neck in a certain way, which blocks his ventilator tube. Matthew immediately noticed that his breathing was off- he was taking quick shallow breaths and we thought that maybe he had the hiccups. Matthew called the nurse over and she obviously realized he wasn’t getting enough oxygen. Well, the simple remedy of increasing his volume on the machine didn’t work and before we knew it our little man was blue. I watched in horror as his skin changed color and the nurse worked quickly to “bag him” They use the term bag him, which means she manually pumped oxygen into his little body. I’m sure the whole event lasted seconds but it felt like a lifetime! You know, I’ve never really used the word helplessness before but now it is a very common adjective in my storytelling. Helplessness, lacking protection or support, marked by the inability to act or react. Yep, that pretty much sums it up. I don’t have the ability to protect my little angel and it kills me. Literally, it feels like my heart is being ripped out.

And this where I am told that there will be good days and bad days. Yesterday was definitely a bad day. However, I will take the good with the bad. This isn’t going to be an easy ride and everyday will not be good. But, I am still learning. Learning to deal with these overpowering emotions and attempting to properly place them. Matthew is wonderful and lets me cry all the time- he simply holds my hand and we quietly get through it. He went back to work this morning and of course I cried- I feel like someone has taken my security blanket away. Each day will get easier.

Saturday, April 4, 2009

Late Night



Matthew and I just returned from the hospital. Our little man is doing good. Greyson was awake at least 30 minutes of our visit. I definitely noticed tonight that Grey has Matthew's nose, which is okay- Matthew has a nice nose :) We arrived as the nurse was doing Grey's care- care meaning feeding, diaper change and simple vitals. Matthew and I were excited to learn that he gained an ounce! Greyson is weighing in today at 1 pound 11 ounces. We will continue to pray that the weight gain continues. It is common for the weight of preemies to fluctuate. As of today, Grey is consuming 2 cc's of breast milk.

Grey's skin looks better with each day- it is amazing the difference in just 4 simple days. The first couple days he looked like a little lizard ( a cute lizard) because his skin was covered in aquaphor. His skin is no longer greasy and looks very natural.

Today I can say that my emotions are stabilizing. I no longer sit through my visit with the stress induced lump in throat. I've also realized that it's okay to cry. Something about the tubes being in Grey's mouth makes me want to sob. I want him to be comfortable. My arms are aching to hold him. I would love to just sit with him on my chest for an hour. When he's bigger- I swear I am going to make this request.

Well, it is 1am here in TN and I should probably get some sleep. I'll update again on tomorrow's visit. Grandma from IN and Auntie from MI will be here tomorrow to meet Grey.

A Prayer for Grey...


God bless the little child behind the plastic wall For all he knows is the ringing of the bells and the blurred images around him. He has been taken from my womb without warning and I long to hold him in my arms.

Lord, I ask in your name that my child be healed. I am willing to accept your decision no matter what it will be. I am willing to take on the responsibilities for caring for this child. I am willing to give this child love and understanding no matter the cost.

Please Lord help me to accept reality and what has happened without explanation or warning. Help me face the fact that this is not my fault and that I was given a special task to complete here on Earth.

God give my child the strength to make it through another second, minute, hour and day as each moment is a blessing and a triumph from heaven.

God, may you give the strength and compassion to the caregivers and nurses that take care of my child May you keep my child protected and free from all injury and pain.

Please take away the guilt and burden from my heart dear Lord. It is heavy and I feel it is all my fault. Take it away dear Lord. Sweet Jesus allow me the strength and understanding I need to communicate with the Doctors and Nurses.

As you see dear Lord, I am at your mercy for the life of my child. Please leave him here on Earth and know that I will provide all the love and understanding that this child needs. I accept the challenge and will be your humble servant dear Lord.

Friday, April 3, 2009

The scale reads 26 ounces but what we feel; is the weight of the world.


Greyson Matthew Stokes was born on March 30, 2009. According to our doctor "He came feet first jumping into this world." He weighed one pound 10 ounces and was 13 inches long. It is estimated that Greyson was born at 25 1/2 weeks.

Matthew and I expected the arrival of our on little man on July 11th 2009.

Below I'll outline the events that triggered such an early delivery:

At 5 1/2 months I noticed a sudden increase in swelling. The swelling was never mild, which all my baby material said to expect. Before I knew it, my fat little feet and "cankles" became the topic of conversation among my co-workers. I must pause for a moment and say that I have some very wonderful female co-workers (Nannette, Julie, Kara, Joyce, Gabi) who took immediate concern with the swelling and never once brushed it off as "what to expect when expecting" These women checked in daily and definitely spiked my determination to find out what was happening with my body. Julie's advice was "go straight into the clinic and prop those feet on the counter and say now what!"

Once the swelling settled in so did the headaches and high blood pressure. I had never experienced high blood pressure until 24 weeks. On Friday March 20th I visited the Women's Clinic due to high blood pressure. Once the high blood pressure was confirmed my urine was tested for protein and labs were ordered. I was notified later that evening by my doctor that my labs (blood test) were good but I should continue monitoring my blood pressure. On March 23rd I called my doctor again and left a message explaining that my blood pressure was still reading high (150/90). On March 24th my doctor called early that morning and explained that she would like to see me same day. I again visited the clinic and repeated the same process as on March 20th- however the results were much different: protein was found in my urine and my labs were not reading the same numbers. Furthermore, I left the clinic and was admitted into labor and delivery at the main hospital. I was told that I would be monitored for "3 to 4 hours and then could go home." At this time, I calmly called my parents and husband and let them know that I was going to be monitored for a few hours and would be home.


Well, the calm immediately vanished once the first nurse mentioned a "catheter and IV." Before long the medical team was explaining that I had preeclampsia http://en.wikipedia.org/wiki/Pre-eclampsia My doctor explained that the concern was early-onset. Preeclampsia usually doesn't appear until 30 weeks. Matthew and I were shocked hours later when we were visited by a high risk pregnancy doctor and he explained that we were "going to shoot for 2 weeks" Meaning, we were going try and keep Greyson inside for 2 weeks. The thought of delivering my precious baby boy in 2 weeks was incomprehensible. Literally, my brain felt numb to the data/facts. Thankfully, my amazing husband is strong in faith and immediately pulled me from the doom. Matthew and I prayed and confidently decided that we would shoot for 5 weeks!

I was given magnesium sulfate via IV for the first few days in hopes of delaying the need for delivery. Once my labs were proven stable I was taken off the mag and I reentered the real world- magnesium sulfate is very interesting, I didn't have the ability to move my legs/arms or think clearly. However, I was immediately hopeful when I was moved out of the labor and delivery room and into a standard room a few halls down- who cares that I couldn't walk or even remember my last visitor- things were looking good.

Matthew and I continued our stay for another 4 days- these days consisted of constant vital check-ins. My blood pressure and temp was taken every hour and blood work was taken twice daily. We received a lab report each day from one of the doctors, which explained if we were in the "safe zone" still. Sadly on March 29th 2009 Matthew and I were informed that my liver enzymes were elevated and a new diagnosis was being used at this time, HELLP syndrome. http://en.wikipedia.org/wiki/HELLP_syndrome. The doctor suggested delivery but allowed Matthew and I to make the decision to wait. We could wait but my blood work would be taken every three hours to ensure my health was stable. Matthew and I decided to wait. I had already decided that I would do whatever it took to protect my Greyson from delivery.

Matthew and I managed to buy another day. However, our emotions were shaken early on the 30th when we learned that my platelet count was dropping. We had been warned from the very beginning that delivery was a must if my platelet count dropped. I had fallen under 90,000- which then puts you at risk for surgery. In an adult, a normal count is about 150,000 to 450,000 platelets per microliter (x 10–6/Liter) of blood. The delivery would not be delayed and I was next in line for a cesarean section, actually, I was bumped to the head of the line for delivery that morning. Magnesium sulfate was re-administered via IV ( I think this was in hopes of preventing a heart attack or stroke b/c my blood pressure was also extremely high that morning). I don't like to remember the c-section because the fear was overwhelming- however, I do know that I was assured all was going well. Grey was here at 10:39 am and handed off to a NICU team of 6. I briefly glimpsed my tiny miracle before he was whisked away.

And here is where we begin... Our life with Greyson. Matthew and I plan to use this blog so family and friends can follow along with Greyson's progress- Our little fighter.