Sunday, November 1, 2009
Friday, March 6, 2009
Saturday, March 1, 2008
Over the past 5 years I have been actively involved with ACS - Relay for Life. This year my focus has changed because of Will. I will be participating in March of Dimes new "March for Babies". This is the first year with the new name and I am proud to be a part of it. If you are interested in supporting me in this great cause, donate here ---> marchforbabies.org/all4will.
Monday, December 3, 2007
C/O Intensive Care Nursery
525 West Acacia Street
Stockton, CA 95203
or by phone at (209) 461-7547 or online at http://www.dameronhospital.org/donate.shtml
We are asking Dameron Hospital to use the donations they receive in his name to go toward the efforts of providing a comfortable environment for parents to do Kangaroo Care.
Kangaroo Care with Will is something that we will always treasure. This allowed us to bond with him by holding him, skin to skin, on my chest. I believe it also made him feel close to us and more comfortable. This is a huge part of treatment for premature babies. We know Will loved Kangaroo Care and we want other families to also benefit from this type of bonding.
Friday, November 30, 2007
His passing came so quickly, no one was prepared. In the end NEC or Necrotizing Enterocolitis took it's toll way more aggressively than anyone could have ever imagined.
Everyone's thoughts, prayers, comments, and emails have meant the world to us.
A very special thank you to the incredibly talented, compassionate and amazing medical staff in the Intensive Care Nursery at Dameron Hospital.
During his 8:00 am hands on assessment the nurse noticed blood in his stool when she changed his diaper. Because of this, they stopped his feedings and ordered an x-ray. His next couple diaper changes had small amounts of blood in his stool so the doctor kept him off his feedings. I am not sure what he was looking for or not looking for in the x-ray but for now, no more breastmilk. One thing they are trying to avoid is NEC or necrotizing enterocolitis, which is an infection of the intestines.
In addition this afternoon Will starting looking pale, so they ordered a blood transfusion and in the morning another round of blood tests. For the majority of the day his oxygen was good until about 5:00 pm when his oxygen dropped lower than I have ever seen it before. By the time we had to leave (cannot visit during shift change) at 6:00 pm his blood transfusion was going but his oxygen was still in the 70's and 80's, even with his O2 set at 100%. The doctor changed his rate on the ventilator from 50 to 55 (this is the breaths per minute the vent is pushing), hoping this will also help him.
Since Will had a rocky evening before we left, we will probably head back to the hospital once the shift change is over.
Will definitely needs your positive thoughts and prayers tonight...
Thursday, November 29, 2007
We have also asked the Catholic church to come to the hospital to baptize Will. This event will be happening on Saturday afternoon. Once he comes home we will have a formalized baptism but for now, just a small, simple baptism.
Will loves the time spent on his tummy. Here is a picture from this evening, holding Mommy's finger. Even though he has not gained a ton of weight yet, he is definitely changing and getting stronger... he has quite the grip!
Wednesday, November 28, 2007
No matter how grim this may sound but I need to remind you that infection is inevitable. Will has been very lucky that to this point he has not fought infection. Many times when you see the baby getting touchy or see their oxygen and heart rate fluctuate you check for infection first so that it can be nipped right away. The cultures take time to show a positive. Result can be reported after 24, 48, or 72 hours... all the way up to 5 days.
Please continue your prayers for our little guy. He is a fighter and I know he can get through this too.
Tuesday, November 27, 2007
I was able to do Kangaroo Care again today! He was so comfortable just laying on my chest and his stats were all perfect. Angela, one of the nurses that will do Kangaroo Care will be off for over a week, so I am bummed that I may not be able to hold him again for awhile.
He loves laying on his tummy... here is a picture of him this evening before we left, sleeping peacefully. You may notice that many of his pictures are dark... the lights are either off or very dim in his section of the NICU and we don't like to blind him with the flash.
Will is up to full feedings and is tolerating them well. As I have mentioned before, this is great news. Today, the nurse and RT changed out the dressing that is on his face that is holding his breathing tube in place, so for the first time I was able to see his precious little face without all the tape/dressings!
David and I go back and forth about which parts of Will take after each of us... so far, our conclusion is that he has David's crazy eyebrows, and my nose. He has David's long torso and my toes. He has David's long fingers and my frown... when he is touchy and frowns, it is definitely a facial expression he inherited from me. :-)
My co-workers started cooking for us and delivering meals to our door. How awesome is that? I work with an amazing group of people (thanks Laura for coordinating!). This weeks menu consists of enchiladas, hot chicken salad, prime rib w/salad, salmon w/veggies and rice, and cookies. Those who know me, know I do not like to cook, so this meal service is totally awesome! :-)
Thanks again to all... keep the positive thoughts and prayers going!
Monday, November 26, 2007
Today was a tough day for the little guy. He was extremely touchy and sensitive to noises, voices, touching, etc. Throughout the day his oxygen dropped quite a few times, but he was able to bring it back up on his own without needing to be bagged. Hopefully he is just having a bad day and tomorrow will be better. Because of his mood today I was not able to do Kangaroo Care with him, maybe tomorrow.
Will's feedings are still on track and increasing every 12 hours. Currently he is at 14.5 ml's every 3 hours. This is a huge jump from 1 ml every 12 hours just a week or so ago. He will be at 16 ml's by morning, which is considered a "full feeding" for his size. Our nurse is very pleased that his feedings are being tolerated... this is important to get him to gain weight. They are adding a human milk fortifier to the breastmilk, which adds calories. This could be one possibility of why he is being touchy today. The fortifier makes the breastmilk thicker and the change in consistency may be a big change to his tummy.
I got to change his diaper today! David opted not to assist, what he doesn't know is that for everyone he passes up now, will be added to his diaper duty when Will comes home! :-)
We are getting in touch with the Catholic church in Stockton to have them come to the hospital and bless Will. We will also be looking into having him baptized while he is in the hospital and once he is home we can complete the celebration with family and friends.
Again... thank you for your comments, we look forward to hearing from all of you! Keep the prayers coming!!
Sunday, November 25, 2007
One thing (out of many) they are watching closely is his creatinine, which correlates to his kidney function. This result has been slowly decreasing, which is good, but on Saturday is was back up... and that was not welcoming news. Because of this, the doctor ordered an emergency ultrasound of the kidneys... which came back normal. They also inserted a catheter and no urine passed. The only other "easy" answer they were hoping for was possible dehydration... so after the transfusion we were hoping for good urine output... and the little guy pee'd like a wild man. This was great news and tells us that, indeed, his kidneys are working and overnight his creatinine decreased.
Also during the night, Will's arterial line was removed. This line has been in since he was born and needs to be changed out. Since his veins are so little, the attempt at reinserting it into another location was not successful. The arterial line serves a couple purposes. The line was running into his left foot and in some of the pictures you may see a board taped to his little leg, this is where the line is. This line allows to draw blood and also monitors his blood pressure. The blood pressure readings have been a bit off and the wave line on the monitor has been going in and out, so it is time to remove it... as this point, since they were not able to get a new line, they are manually reading his blood pressure with a tiny little blood pressure cuff. The line needs to be replaced but will be "ok" if it is out for a day or so.
This morning during our visit I was able to do Kangaroo Care again. For some reason, I felt much more stressed this time around than the first time and I am not sure why. Of course, the time spent with him laying on my chest was awesome. According to the nurse working his case, she will be on day shift for the next couple of days and said we can do Kangaroo Care each day (thanks Angela!). Every chance we get to do this type of holding has proven to help him greatly.
Let's hope for another great week. Please keep the positive thoughts and prayers coming! He still has a long road ahead of him, and with your support, he will surprise us all!
Friday, November 23, 2007
On the monitors in the NICU, Will's oxygen, blood pressure and heart rate were all PERFECT during the hour that I was able to hold him.
Only some nurses are comfortable allowing the parents to do Kangaroo Care, so I am unsure of how often we will be able to do this, but I will ask everyday. This experience was something I will never forget. Dad's also can hold their baby and bond with Kangaroo Care.
Will received a blood transfusion and seemed to feel much better afterwards. His feedings continue to increase every 12 hours as along as his residual remains low. Last night he was increased to 5 ml's every three hours and hopefuly this morning he is up to 6.
While we were at the hospital last night, our nurse was wiping his mouth and as she did, Will started sucking on the wipe and her finger. She let me place my pinky finger into his mouth to feel his sucking. I was so amazed that at such a premature age that he knows how to suck. Of course, sucking, swallowing and breathing will still need to be learned, but this is great progress. Our nurse also brought in a pacificer for Will to try... and he seemed to really like it (thanks Angela!). Now the pacifier looks huge next to his tiny little face, but he really liked it. Here is a picture.
We also took a video clip of Will sucking on the pacifier using our camera and once we figure out how to post a video clip to blogspot, I will try to post it. All the little things that babies know, simply by instinct, are milestones for our little guy. We are so proud of him and how strong he continues to be... and as Dr. Simko said yesterday... "he is a tough kid."
Wednesday, November 21, 2007
Will is resting comfortably after 2 attempts at a PICC line today. Thankfully the procedure was a success (thanks Joan!)!!!! We pray that the line works well and serves it's purpose.
In addition to the PICC line, the doctor has increased feedings... right now Will is getting three ml's every three hours. As long as the feedings are going good and there is little or no residual remaining in his tummy, the feedings will increase by one ml every 12 hours.
To everyone who is following Will's progress... thank you for your support and prayers. Please have a wonderful Thanksgiving holiday!
Tuesday, November 20, 2007
Today was a little shaky with Will's breathing. He dipped up and down a handful of times and rode the ventilator most of the day. Yesterday he had a multitude of blood tests done and one came back positive for infection. The culture came from his ET tube or breathing tube. Pushing room air into his lungs, it is inevitable that an infection could occur. The good news is that he does not have an infection in his blood and his white blood cells are high and his bands are low. As of now, this positive test result has not triggered a course of antibiotics. The doctor wants to see what he can do on his own in regards to fighting it.
Will continues to love to lay on his tummy, which he is allowed to do as they rotate him from tummy to back every three hours. We also are more consistently seeing a "poopie" diaper! I know, I know, this sounds gross... but let me tell you, with a micro preemie as tiny as he is, pooping on his own is great news.
Continue your positive thought and prayers... little Will is thriving because of all of your support!
Monday, November 19, 2007
Will had another stable day today. They have done another big round of blood tests aside from the normal everyday tests and so far most results are within normal ranges. Two of the three tests that look for infection were normal (thank you, God!). Some things are a little high or low like calcium, creatinine, and bilirubin, but are under control with either medication or phototherapy.
Dr. Simko is back on shift and talked about making another attempt on the PICC line tonight, but it sounds like he may wait until tomorrow and just change out Will's arterial line.
Beginning last night, the night nurse, Shelly, started turning Will onto his tummy - and he LOVES IT! I also found out last night that his weekend/night nurse, Shelly, is from Patterson! I went to school with her Aunt (boy do I feel old!). In my defense, her Aunt is only 8 years older than her. :-)
Thank you again for your support - Will is hanging in there and this Thanksgiving will take on a whole new meaning for us.
Sunday, November 18, 2007
I was able to hold him again last night. He is so amazing and so tiny all at the same time. The new PICC line was providing dopamine for his blood pressure, which is basically normal and lipids to help him get nutrition. Well... while I was holding him, one of the machines that push the lipids was alarming, telling the nurse that the pressure was not able to push the appropriate amount through the PICC line. Initially the nurses thought that when they moved him into my arms that one of the tubes kinked but after looking at all the tubes, no kink was visible. Once they moved him back into his isolette, they checked his all his lines for a kink or blockage and nothing was found so they re-bandaged his leg where the PICC line enters into his vein and tried flushing the line and still, no success. So at this time they determined that the PICC line went bad. The PICC line is just slightly bigger than a human hair, so as you can imagine, it does not take much to get stopped up. They removed it and tried 2 other locations to reinsert the PICC line with no success. Today he has a regular IV in his arm, which is a temporary fix. The will try the PICC line again tomorrow or Tuesday.
Will is also on day 3 of a 5 day regimen of steriods or hydrocortisone. Once the 5 days are over he will be able to start back on his trophic feedings of breastmilk, which is very important to get his digestive system working and for him to start to gain weight.
Please continue to keep him in your thoughts and prayers as the PICC line is necessary for the long term care he will need over the next few months.
Friday, November 16, 2007
Besides this, what can I say besides... God. Is. Good. Will is much more stable than just a couple of days ago. His oxygen is at 25 - 30% and his pressure was lowered all the way down to 16. At many times during the day he was breathing on his own over what the ventilator was doing for him - and one time we even noticed that when the vent was breathing in, he was breathing out... this is huge progress and shows his strength. His blood sugar was normal all day along with his jaundice and blood pressure.
During our evening visit, the nurse had just changed his linens and snuggled him all up into his blankets. He looked so comfortable and peaceful.
Thank you to everyone for your positive thoughts and prayers, they are working! We know that he still has a long road ahead, but with support like this, we know he can do it!
Thursday, November 15, 2007
His head ultrasound results were delayed until this morning, but fantastic news... no change since he last ultrasound, which means it is normal - and there is no detectable bleeding in the brain (thank you, again, God!). Today was a much better day. His breathing was stable and he did not experience any drops in his oxygen... they lowered the percentage of oxygen and the pressure. His blood sugar level is in normal range, so no insulin today... and his blood pressure is better so his dopamine has been scaled back. They planned to try the PICC line again today but Dr. Hipolito was so busy with other "emergencies" he told us he would do it tomorrow morning. The doctor can put in the PICC line into a different area than the nurses, so cross your fingers that it is a success.
All in all, his 2 week birthday was a good day! Keep up those positive thoughts and prayers!
Wednesday, November 14, 2007
They stopped his feedings due to residual in his tummy... his blood sugar has been high, so they are giving him insulin... his oxygen has been low, so they increase the oxygen on his ventilator... his blood pressure has been low, so he is back on dopamine... and yesterday they gave him a second dose of something called curosurf that helps when he is in respiratory distress or when he has trouble breathing. This is something that gave him at birth. It is a slippery substance that helps to relax his lungs and allows for less episodes of drops in breathing.
All of this sounds so overwhelming, and trust me, it is. There is so much more that they are trying to balancing, but these are the things I can remember. Everything that is happening to date is expected with a micro preemie, what really matters is how he tolerates and handles treatment.
Please keep up your positive thoughts and prayers, we are heading into a long and difficult period and need your support now more than ever.
Tuesday, November 13, 2007
As Dr. Simko warned us last week that this will happen... they are having to increase the percentage of oxygen this week. At times he is breathing above the ventilator, which is good... but on the other hand he has a tendency to "clamp down" after taking a breath and then stops breathing. When this happens, they have to move in and "bag" him to get him to exhale. The manual process of bagging him allows them to add more pressure if needed. As horrible as this sounds, it is par for the course for babies this tiny. I was present this afternoon for one of his "episodes" when his oxygen dropped... and nothing can prepare you to have to see this happen to your child. Now that I was able to see the nurses and respiratory therapist in action I think I can handle it better if it happens again, and they say it will happen again and to be prepared.
The doctors talked about increasing his feedings from every 6 to every 3 hours, but they have not yet written the order to do so. He lost a bit of weight since he was born, again, par for the course, but has recently gained some back.
As we move into his second week, the roller coaster will really start to get a bit rough. We are trying to be strong for each other and for Will... so please continue all of your amazing and positive thoughts and prayers, so far they are working wonders.
Monday, November 12, 2007
Sunday, November 11, 2007
Please continue your prayers, he really needs to kick start his kidneys and lungs. Test results show that his kidneys are extremely immature. His breathing is supported by a ventilator but recent x-rays show that his lungs are not working as well as they could be.
Today they should be making a 2nd attempt at the PICC line and depending on his morning test maybe another blood transfusion.
Everyone's support is so important to us and we can never truly express our appreciation. This is the hardest thing we have ever experienced and having such an amazing family and friends means the world.
Friday, November 9, 2007
Yesterday I received a beautiful customized necklace that contains a charm with Will's name on it along with a cross pendant. I will always wear this so I can keep Will close to my heart even when we are not with him at the hospital, it means so much! Also, tonight when we got home from the hospital there were a few packages on the porch from my co-workers.
One department started putting together a gift basket of things for me to stay busy while I was on bed rest in Labor and Delivery, but my stay was not as long as I had hoped. My friends in the Accounting department sent over this amazing gift basket of fun stuff... which includes magazines, books, games, cards, DVD's, nail polish, some of my favorite candies, toys, etc.
And then I also received a cookie bouquet from 3 of my friends at work... now I have to say that these kind of cookies would normally be eaten by now... they are my favorite! But under the circumstances, I cannot eat them because they are so darn cute and remind me of Will every time I look at them. See how cute they are...?
Now on to the important stuff... our little miracle. Will had a tough morning with a few hiccups. Later this morning he was doing good again. One thing has been a concern... they are holding off on his feedings. After a feeding today they noticed bile was remaining in his tummy, which means he is not passing it into his intestines. This is common for his young age. They have given him something to help to pass it. This will hopefully allow him to "poop". It seems to scary to think someone so tiny has to "poop" but hopefully this will jump start this process for him and we can return to normal feedings to get him used to my milk.
Will is breathing well today, so well he was even breathing over his ventilator. This resulted in being able to lower the pressure in the ventilator. Dr. Simko made a couple of positive comments today about his current condition as well, which is very encouraging. He is starting to move around quite a bit. This is good, it shows that he has energy and is not suffering from pain... but they also do not want him to use up all his energy showing off his new dance moves.
As always, thank you for your positive thoughts and prayers. Each day is a new day and we are so thankful for him. He is now just over 8 days old and fighting strong with a WILL to live!
Thursday, November 8, 2007
Once he leveled out, it was a busy day for him. He had blood drawn, a blood transfusion (which is totally expected since they draw so much blood for tests and his little body cannot keep up producing new blood), another brain ultrasound, phototherapy for jaundice, and an attempt to put in a PICC line, which is kind of like a shunt.
Here are a couple pictures of Will under Phototherapy or the Bili Light... or his debut as the newest member of the Blue Man Crew.
Wednesday, November 7, 2007
David's sister, Lori, is in town and we all three went up to see him this evening. We arrived during his assessment and he did great.
Today we met Dr. Simko, the other Neonatalogist. He was full of overwhelming information, so for now, I will just say that today Will is stable and we still have a long road ahead of us. They are starting him on 1 ml of fresh breast milk through a feeding tube tonight at midnight and if tolerated, every 12 hours. He has already been receiving swabs of breast milk (colostrum) in his mouth so that he starts to receive the antibodies he needs. He will probably need another blood transfusion tomorrow along with a battery of other tests including another brain ultrasound. The ultrasound is a precaution to see how things are going. He has not exhibited any symptoms to think otherwise.
Please continue your thoughts and prayers, he needs them now and in the future in order to stay strong and defy the odds.
Tuesday, November 6, 2007
I just talked to the night nurse and she said Will is being such an angel tonight. Of course, I think he is an angel, too. She also told us that starting at 1:00 am they will begin to give him a drop of my breast milk or the colostrum which will greatly benefit him right now. This will provide necessary antibodies he needs to protect his mucus membranes in his throat, lungs, and intestines... and also help to coat the lining of his tummy. It will also help to protect him from harmful viruses and bacteria which is huge since he is so tiny.
Thank you for another great day!
Monday, November 5, 2007
Aside from this test, he also had his echocardiogram and those results will hopefully be in tomorrow. He had another good day today. His dose of dopamine is down, oxygen is at 25% which is really good, his blood pressure is stable... what more could we ask for? He also tolerated all of his assessments today and avoided any "episodes" of his heart rate dropping. I was really worried about how he would fair through his tests today and he was a champ!
His skin is translucent right now, so we can see underneath the skin. During his blood transfusion yesterday you could actually see the blood flowing through his veins. He looks like he has great color, but that is really just the flesh under the skin. They want to start seeing his skin wrinkle up and it is. This tells them that he is not as swollen or edemic as he was after he was born.
We are so happy with his current state. At this point, we really could not ask for better results. Our evening visit was so enjoyable. To see him making such strides is really a miracle right before our eyes.
Please continue to keep Will in your thoughts and prayers, he is counting on all of us to be strong.
Sunday, November 4, 2007
Tomorrow he will receive an echocardiogram and brain sonogram to check for any problems with is heart and brain. The result can take up to 1-2 days to receive back, this is hard news to anticipate, but these tests are so important for next steps. When we saw him tonight he looked so peaceful, resting under the blue lights (for jaundice).
Let's hope for another good day tomorrow and good results on his test.
The fluids he is taking are not all being taken in within his blood vessels, which is normal for his condition. Since this is the case, he has edema or swelling all over and when you move him, the fluid moves around and can cause trauma since he is so tiny. Now that they know this of him, they are very careful and he is beginning to tolerate it a little more.
They started him on a new medication last night that prevents bleeding on the brain. They are unsure at this point if he has any bleeding and if he does this medication will also help to halt any bleeding.
Saturday, November 3, 2007
My appointment was at 9:00 on Tuesday morning and I got there just a few minutes late. When I got in to see the doctor, I told him of my symptoms and he too said it was probably normal. Since once of my complaints was some discharge, she did a quick speculum exam... and he realized I was already dilated 2 1/2 cm. All I could think is that THIS IS NOT GOOD!
He called for an ambulance and I was transported to Dameron Hospital in Stockton where my husband and my mom met me. I was admitted in Labor and Delivery and given medication to stop contractions and a steroid to help the baby's lungs develop just in case I delivered early.
The next day was a cake walk. I felt better, no contractions. I was put on bed rest, a liquid diet and could not get up, not even to pee! I was getting ready to settle in for the winter because the word at the nurses station was that I was not going home until I delivered... and that takes us to Thursday morning.
I woke up with a bit of bleeding and called my husband. The doctor did not seemed to concerned unless it was accompanied by contractions... and not too long later, the contractions came. The next thing I know, I was completely dilated and was told that either my water was leaking or my placenta was pulling away from the uterine wall, which was the case. The contraction came with more intensity and closer together... and now, at only 24 weeks along I was finding myself pushing. My water broke and nearly flooded the doctor and her staff (sorry, Dr. Brady!) and once the pressure of the water bag was released, my dilation when down to a 6. They induced the contractions and just 20 minutes later, William David Hensley was born.
After the delivery, since the baby was so tiny, my husband and my mom went to the NICU with the baby as the nurses and doctors cleaned me up... BUT... I could not stop bleeding. At this point, my OB/GYN, Dr. Probst, had come on shift and was assisting Dr. Brady. They tried everything. To save you the gruesome details of the OR, the lack of my blood type being available at the blood bank, the kamikaze Anesthesiologist, I will just say I was rushed to surgery for an emergency D & C and blood transfusion. Waking up hours, and I mean hours later I was settled into ICU for the evening... Now mind you, I still have not seen or heard about my baby. It was not until the next morning on Thursday when I was able to see little Will.
He was tiny at 1 lb 8 oz and only 12 inches long, but he was hanging in there. His blood pressure was low, his temperature was low, his blood sugar high, but hanging in there. It was such an emotional roller coaster to see how tiny this little baby was - and how much he was fighting to live.
Later in the afternoon we were able to see him again and Suzie the NICU nurse said he was doing ok and stable. I was moved from ICU into a public room with a nice young girl and her new baby. As you can imagine, this was a terrible place for me, the mother that did not have her baby with her. Apparently the nurses agreed and moved me into a private room and this is where I am now typing from. Will is now a little over 55 hours old - and still fighting. The doctor was worried about his kidneys, but he is showing signs of improvement. He has proven that he does not enjoy having is diaper changed because this morning he coded or his heart stopped 3 different times all resulting in a successful resuscitation. This afternoon they were starting to decrease his blood pressure medication, which is great. And his kidneys are continuing to improve. We are trying to remain optimistic, because he deserves a good chance at life and we want to provide that to him. Well, I am off to the NICU for visit.