Celebration or disappointment

A few weeks ago Abe and I went to the women's retreat. Abe had respite for most of the speaker time and had a blast playing in the hotel room with her and his discovery toys stacking cubes. The speaker discussed that she was unable to have biological children despite that God gave her a Mother's heart. It was very difficult for her to see so many friends and family members having children. She is in her 50's now so is past child bearing age. However rather than living life "being disappointed" bitter and angry of her childless life she chose to be a spiritual mother to children who did not have role models in their homes. She did admit to grieving what she longed for so much. Abe is sick right now,not really wanting to breastfeed or eat but still playful, happy, maintaining urine output and oxygen levels. Thankfully he is not in the hospital. They think it may be a peanut butter allergy and a cold. So today we went to buy some chicken soup since he loves chicken soup. Oh our drive home I found myself disappointed that he does not sit up,walk or run like the other 2 years around us. I found myself grieving a "normal child", "healthy child" Just yesterday he crawled to me when I told him to come to me because it was time for his bath. I was so delighted and proud of him because his vision teacher has been working with us for him to crawl to me when I need to pick him up, change his diaper, put on his shoes,ect. What is interesting is I did not have a toy to entice him to come. I just told him a few times and put my arms out. He is saying more words to, "yeah", "na" "more". Some times he says the words at appropriate times even. For example, when asked "do you want more food" he says "more" or "is that "yummy" "yeah". He continues to wave hi and bye, blows kisses and makes a "f" sound that he learned when I blow on his food. Sometimes he does this with cold foods as well so he needs to learn the difference between hot and cold especially with the vision impairment. His thyroid level, free T4 was elevated but this was done at Naval and I don't know if there reference range is pediatric specific or not. this week we received our 2 year LLL spoon. It is a tradition for every year you nurse you get a spoon. The first one was "external devotion", I can't remember the 2nd one but I think it something about "strength" I will need to find out and post later. He attempts to sit up now. He is no longer safe on our bed without direct supervision because the little stinker figured out how to get between the side rail and bed and lean over the top of the rails. Abe tries to crawl after the cats now too. A few weeks ago I was in the kitchen doing dishes, yes Glenn, I do clean occasionally, and Abe crawled to the wall by the kitchen and peeked over and smiled at me. It was so incredibly cute. He continues to amaze us all but I find go back and forth in the stages of grief. I am trying to do everything I can to maximize his potential. Starting next month he will be attending class at Holly Ridge without my assistance. This is a huge step for us. I am planning to home school. I hope I will continue to receive the PT, OT, ST, vision teacher and school district support if I do home school down the road for kindergarten. That's all for now since he is sick and I think I am coming down with it as well.

Decisions, decisions

Glenn is up for new orders soon. We need pray in order to make the best decisions for our family. It has been tougher than I expected having him gone this long. I have noticed several postings on face book about other military wives doing all these projects while their husbands are gone. I guess mine should be to finally unpack our house. Abe is still sick but his oxygen level was 98% on room air and heart rate was normal. I have not even taken him to the pediatrician this time. He did however see the ARNP at Children's and his ears were red but he was screaming. Any kid's ears would be red if they were screaming. If it seems he is not getting better or getting worse I will have him checked out. I forgot to mention that he was accepted into the Starlight Children's Foundation. They provide tickets to social events. We have not been able to attend any of the events yet but am looking forward to it. This would be a great way to escape the reality we face daily and connect with other special needs families and kids. This week at Naval Hospital I was there for a long time waiting to talk to a nurse about UTI symptoms. It was rather annoying to have to wait but I saw a family with a special needs kid that knew nothing about the Military Special Families Support Group. I was able to provide them information about it. What is interesting is there kid is almost 11 and they have lived in the area for 10 years now. I hope they join the group because this group of people have been awesome at advocating for our family. Also this month I want to do more with Mary Kay since it is uplifting and positive.

25 Months

Abe is 25 months old today. I had an appointment at Madigan today and it brought back memories of the unknown that we faced daily "Would he still be alive when we returned in the morning" Also "should I keep pumping breast milk for a baby that never will be able to even drink it". I remember one night Chris and Glenn drove back to Bremerton and I had Leanna drive me from the Fisher House back to the NICU in the middle of the night just so I could check on Abe. Calling the nurses just was not enough. I wanted to see my baby and see what medically was going with him. It's been a tough week, situation at my church that made me feel un-welcomed and a secretary at Madigan telling me that since I did not have anyone to watch Abe I would need to come back. Just so you know Madigan is a little over an hour away and gas is $3.47 a gallon and that is Costco gas so probably the best price. There was no way I was coming back. On that note the Madigan appointment was a preconception counseling appointment to determine if there is any medial reason for not having future pregnancies. The good news is there is no reason why I could not have future pregnancies. However it won't be without risks. The earlier a women delivers the increased risk of having another premature delivery. The shape of my uterus is not a contraindication for future pregnancies. However she was not 100% sure it is truly heart shaped since the surgical report from my c-section indicated a deviation. She said the uterus could have been contracting at that time which made it appear that way. She has seen women with heart shaped uterus deliver healthy, full term babies. She put in her note about a pelvic MRI to get a clear yes or no to about the shape of my uterus. My PCM would need to order it. However knowing this would not change the course of treatment so not sure it's worth the trouble. My recurrent UTIs would require daily antibiotics as a preventive measure. The length of the cervical canal would be measured every 2 weeks since shortening is a sign of labor. I think she said this is done only 16-22 weeks. I would not be required to have an amino or a quad screen since this won't change any treatment during pregnancy. An echocardiogram would be done on the developing baby to look for signs of birth defects. I do have PCOS and endometriosis which is not her specialty. These do have an affect on getting pregnant but were not a factor why I delivered so early. She thinks I may have had a uterine infection, like listeria that affected the uterus and not me in any way. I mentioned the cream cheese I ate at the hotel but she said that is not likely. Listeria can be from lunch meat and unpasteurized cheeses. I mentioned the cats in the back of my Jeep that had their litter box while moving from San Diego to WA but she said no signs of toxoplamosis. Plus she said I probably have antibodies against it. Research has shown that progesterone shots can help prevent premature labor and delivery so I would be a candidate for that too. There is no guarantee that there won't be any problems or that I won't deliver early. She did recommend that both Glenn and I are emotionally ready for whatever will happen. A healthy pregnancy does not guarantee a healthy child but even a child born healthy may get in accident or have cancer so you never know. I have heard that special needs kids tend to progress when they have a sibling to share their life with. I think Abe would enjoy someone to crawl around with. Now it is just a matter of when will we both be emotionally ready. Also with PCOS and endometriosis I don't even know if I can get pregnant or not miscarry. Life is too short to live in fear and we have to trust that God would never give us more than we can handle. Abe is progressing, still has significant delays but using both of his hands and trying to sit up. He currently has as a cold but he is at home and not in the hospital. The neurologist did not feel that his EEG showed evidence of seizures. Neurodevelopmental ARNP thinks Abe might be waking up during the night due to hunger or muscle spasms. If he is having muscle spasms then muscle relaxer medication would be prescribed. Abe says “yeah” and “more” sometimes too. For example when asked “is that yummy” “yeah” and sometimes he says “more” when eating. He only knows all done sign. He is working on more signs. I might let him start classes twice a week at Holly Ridge. This would be a class without me in the room unless I am the parent volunteer that day. He is going to be fitted for stander soon.

I'm 2

Abe is 2 years old, well he will be at 455am. Wow hard to believe that 2 years ago today we went to church, came home and I took a nap. Later that day we watched the movie Fireproof then a few hours after going to bed my water broke and 4 hours later our son was born 14 1/2 weeks early. We celebrated his birthday this past weekend with friends. He is trying to sit up but still needs some practicing. He is also getting braces for his feet to keep his toes from pointing downward. After he gets them he will fitted for a stander. This is a device that he can be strapped into and will allow him to play in a standing position. This will strengthen his truck muscles. He seeing neurology, dentist and the eye doctor this month. We are ruling out seizures and he will have an EEG later this month. The one in July 2009 was abnormal however this was no surprise to the neurologist given the bilateral grad IV brain bleeds. Abe is learning to eat bigger pieces of food and started drinking some cow's milk out of a sipping cup. He will hold it with his left hand and drink it himself, well he spills some too. He will do this for daddy but really for me. While in his high chair he usually just throws it. We thought about doing a night time breastfeeding wean but we both agree that he is not ready for it. I plan to continue breastfeeding longer. I know some people are probably thinking, “he is 2 years old”. He officially learned how breastfeed April 2010 so we are no hurry. We might try the night time wean when Glenn comes home in the summer or if Abe shows signs of wanting to wean. The nurse at Naval Hospital advised but that he would only receive one more synagist,protection shot for RSV. I was not satisfied with that answer so I double checked with the pulmonary doctor at Children's. She wants Abe to receive until RSV season is over. Abe has managed to stay out of the inpatient side since our Arizona trip in September. His pediatrician left the practice to be a stay at home mom. We will miss her however he sees Dr. Wilde now and will have a 24 month old check next week. While I was recovering from surgery Glenn spent time caring for Abe and unpacking our house. This made a little more room for Abe's medical equipment. I am thankful that Glenn got to come home. I had a skin reaction to the blue dye used in the surgical prep plus a bladder infection and post operative pain. I occasionally still get some pain but I am able to care for and lift Abe again. The rash is still there but significantly faded. Glenn will be returning back to his ship and will be gone until summer time. My mom is here for a few weeks. Other things in our life; our 5th wedding anniversary is the 14th, we have only been together one of the 5 and we spent that time at the NICU, we organizers at IKEA which gave us a lot more space, someone has destroyed or completely took our trash can twice in the 3 weeks Glenn was home. They run it over in their truck. We think it may have been the neighbors who were recently asked to move by their landlord. Oh well at least they did not damage our vehicles. This makes it difficult to get trash out of our house. Thankfully we have a trash compacter but it is currently reached it maxed. We would put the bag of trash out tonight but animals may tear it apart. Oh well in some countries there is no waste management to pick up the trash weekly. I am not sure if anyone even reads this blog any longer or not but I still plan to update at least monthly. Pictures can be found on Face Book. I have not updated pictures there lately but it was a busy month, with my surgery and Abe's appointments. Prayer requests: Abe's EEG goes well and he does not show evidence of seizures, the braces and stander work out for him. Also pray for my friend Janet Daniel, her daughter was in a car accident this weekend and was placed on life support. Another friend had a 2 week old baby girl that is super ill. Thanks and Happy February. Spring is almost here.

January 2011

The first thing I can think of today is when is 2011 going to be over. I am so ready for a fresh year. When will my family have no medical issues, no surgeries, no surgical complications, no hospitalizations, no doctors appointments, no pt, ot or speech appointments. Oh wait these appointment will be part of Abe's life probably for the rest of his life. I just want a normal life but as one friend described it today, my life 2 years ago was twisted upside down and sideways. We are thankful for friends and family that are supportive. We are so thankful for Abe and his progress but it is different than a "healthy" kid who only goes in to the doctor for well baby/child checks. I still to this day have no idea why I was selected to carry the burden of caring for a medically complex kid. What did I do wrong or failed to do? He does bring us joy when he giggles at the sound tube toy, tires being tighten at the tire shop or the fork lift sound at Home Depot. he says da, dad to Glenn and it is so cute. Right now he is healthy and has not required any inpatient stays since our vacation to Arizona. He is army crawling and trying to sit up but is not strong enough. He loves to eat real food but is learning to expand to other textures. My surgery went pretty good minus the pain and the contact dermatitis. I must be allergic to something they draped over my belly for the surgery. It is extremely red, bumpy, painful and itchy. I saw general surgery on Friday and went to ER today. They gave me hydrocortisone cream 1% and Benadryl. I personally think I will need a course of oral steroids like I did after the c-section. I thought that one was related to Tide laundry soap but obviously must be the skin prep, surgical sheet or adhesive. There is even redness in the shape of a piece of tape on my back. Last time they did not cover as much area or was not as red but this time it covers the entire abdomen and sides of my back. If the Benadryl I received at the ER today is ineffective then I will need to call general surgery. The next course of action would be oral steroids. Oral steroids will suppress the immune system and hinder healing and put me at high risk for infection; however may be necessary in order to heal the rash. Glenn is here but will need to be back to the ship soon. I ask for prayer that he can stay home for my recovery. Since my immune system is dealing with the allergic reaction the healing process is effective. On a positive note I won't have to deal with gallbladder attacks ever again. I had an attack the night before surgery that lasted all night long. I am thankful that Glenn was able to come home since I am not able to drive or lift Abe.

Dec 31, 2010

I skipped a Christmas letter all together this year but I do want to do a quick summary of 2010. January: had an early celebration of Abe's first birthday; we were not certain he would even make it this far. February: Glenn went left for training for 90 days, Abe hospitalized twice for respiratory infection. March: Women's retreat, Abe did great and enjoyed all the ladies. Thank you to those that helped me there. I got a break which was nice since I was still pretty sick with a cold myself. Stephanie started providing respite care. April: Grandma came to visit for Easter, Tacoma zoo and many ferry trips to Seattle. Abe finally learned to breastfeed at 14 months, 11 months adjusted age. Wow what an uphill battle that was but so worth it. May: Glenn came home for 4 weeks. He put down hard wood flooring, which we love. He did this while he was sick with a cold. We love the new flooring. June: Glenn's ship switched homeports to Diego Garcia. Abe hospitalized for respiratory infection and his surgery was canceled. July: very hot temperatures but we did enjoy the sunshine. Our favorite hang place: the mall because of the AC. We went to pick fresh raspberries in Sequim. Also went to the Lavender Festival with friends. August: Abe had surgery, did so well his admission was canceled so he got to come home that day. Abe's first airplane trip. We went to Arizona to visit my family. I selected this time of the year since I thought it was before cold and flu season. September: We got to visit with friends and family in Arizona, hospitalized for para influzena for 7 days at Phoenix Children's Hospital. San Diego trip was canceled since I also got sick. We really wanted to see all of you and get out of the Arizona heat. October: We went to our first pumpkin patch with friends. Abe was a doctor for Halloween, how fitting for a child with so many inpatient stays and medical appointments. November: Abe received his bath seat. He hated it at first but it is so much easier on the momma's back. We got snow before Thanksgiving. We added 2additional respite providers. We had Thanksgiving with friends who saw Abe his first couple of days of life. December: Abe has a respiratory infection and an ear infection but maintained his oxygen level, continued eating and drinking so he never had to be admitted. I had a few gallbladder attacks including one trip to ER before 6am. I toughed it out the first night for 6 hours but a few nights later it felt like my gallbladder was going to explode. It is super freaky when you can feel a mass in the right upper quadrant of your abdomen. I was in so much pain and I did not know why. I thought it was my gallbladder, but oh smokes, the pain is worst than kidney stones. Abe meant Santa at the EFM party, NICU party and a few other parties with friends. We spent Christmas Eve dinner with a friend and church service, Christmas morning with new friends. Glenn may get to come home for my surgery but not 100% sure. The cost of the ticket is all on us however I won't be able to lift Abe for awhile. He will be home for a short time only then back to Diego Garcia. We had planned to go to a friend’s house tonight but with the freezing temperatures and potential for icy roads we decided to stay home. So to sum it up 2010: 4 inpatient stays for Abe, Glenn was home January and May only, new flooring/ paint and a wall was knocked out, no more pumping unless Abe is sick and does not want to eat, 6 months of the deployment out of the way, started working Mary Kay again. Abe's milestones: 20 lbs 15 oz which is underweight but with 7 hospital stays in 19 months he deserves a little break, 33.3 inches tall. Army crawling, rolling, back to belly, belly to back, gets into thing he should not, he grabs stuff from the other side of the baby gate, can tolerate some regular food but not big on crackers, although he did eat some after he hang out with Logan and Nate, says momma, da, da, ding, ding, ding, hi sometimes, he claps on his on command and waves hi and bye sometimes. He is working on sitting up but is not strong enough. Unlike most 22 month, 19 month adjusted age, he does not feed, sit up or walk. He is also working on crawling with stomach off the floor but he struggles with this. He starts speech therapy in January. He loves DVD such as Veggie Tales and Baby Einstein. I really don't want him watching DVD or TV yet but it keeps him from crying while I scope the cat litter and take out the trash. He also watches a DVD of Daddy reading to him. So much for short, huh? Happy New Year 2011. We hope for no hospital admissions ever again for Abe. I will continue the blog probably month as my life is filled with many medical, dental and therapy appointments for Abraham, hopefully Glenn will put some more pictures on the blog since not everyone is on Face Book. Abe's birthday party will probably be January 30, 2011.

No fat

My surgery is scheduled for January 2011 unless an emergency arises. So far been doing fine but so difficult to follow non/low fat diet at this time of the year. The chocolate cake at the Madigan NICU party was tempting but I skipped it, not worth the pain or having to have gallbladder surgery due to an infected organ. Glenn might get to come home but not 100% official. Honestly I think his job here at home caring for a breastfed baby that won't be able to for 3 days will be more difficult than what he is currently doing. I plan to ask Abe's doctor if I would need to wait 3 days post op to resume breastfeeding. The surgeon said I would need to pump and dump. Just when I thought my pumping days were over. I will give an update on this later. I could be wrong but when Abe gets mad he bangs his head into you and it hurts plus he crys and fusses. I am just hoping and praying to remind stable until the surgery. The pain was worse than kidney stones. The gallstone is 1.7 cm so is considered to be large. The recovery should be easy but lifting and bending restrictions so I would not be able to care for Abe after surgery. We are waiting to hear more from Glenn if everything is good to go. Abe is trying to sit up but can't make it. He does not fall over though but rather slowly lowers his body to the floor. He will start speech therapy in January and will continue PT, OT and therapy class. His sleep study was completely normal. I need to start a night time breastfeeding wean but not sure the timing is right. I need energy to get ready for surgery. Please pray that I remain stable, Abe stays healthy and Glenn makes home and back safely.

Mommy

Prayer Request

All I can say is at least this did not happend while I was pregnant or when Abe has been in hospital
I have had 2 gallbladder attacks In 4 days. This included a 430am trip to ER by ambulance. The pain is currently controlled with non-fat and low-fat diet. The ultrasound revealed gallstones and a general surgery consult was placed. My appointment is today. This would be simple if Glenn were homebut the reality of military life is he is not. There is potential for emergency surgery but we are praying for it to be scheduled and a plan in place. So far I am working on a plan with the assistance of the Military Special Families Support Group, SBC and friends. I found a medical POA for Abe while I am in surgery in case he requires medical attention. Prayer request include: pain is controled with diet, gallbladder does not become infected, plan goes smoothly, Abe stays healthy and for Glenn to possibly be present to care for us. There will be diet, driving, and lifting restrictions after surgery.We get Abe's sleep study results today then my appointment. So a busy day. We probably won't be at Madigan NICU party this weekend.Thank you friends and family for caring for us

Clap your hands, 22 months

Wow Abe is 22 months old now, can you believe it? Almost 2 years ago we were faced with decisions to continue CPR and keep life support on. Now we can't keep him in one place or from dropping stuff off the counter where his highchair is. He waves hi and bye and claps his hands. He even stopped breastfeeding because I told him to clap his hands. What a mean mommy. He is still breastfeeding so the pumping days are way over except during illness and hospitalizations. His last hospital stay was in Arizona in September. We are planning to keep him out of that place. He sees pulmonary this week to get the sleep study results. He is currently on antibiotics are an ear infection and I have was sick as well. He is doing well and mantained his eating, drinking and oxygen so he stayed at home. He will be starting speech therapy in January, should have been sooner but I don't think anyone wanted to modify his ISFP. I have asked repeatly when will he start speech therapy. His birthday party will be January 30 or the day before Super Bowl Sunday 2011, the 5th I think. He still wakes up all night but I will begin a breastfeeding night time wean soon. My plan is to continue to breast feed until May or maybe even longer. After all it took him 14 months to learn and it provides immune protection for him and decreases the breast cancer risk for me. I asked for a referal to the Madigan OB/GYN (would handle high risk pregnancies or other complex GYN things) I discuss the benefits/risks/recommendations for future children. Glenn does not come back for 6 months but they recommend the earlier the better. Glenn agrees that I should begin talking to them before he returns. Not sure I can mentally, physically, emotionally or spirtuality go through went I have already went thru and continue to go thru but every pregnancy is different and now they will return my calls and listen to my concerns. No firm decisions have been made in this area. We have no idea if I can even get pregnant as easliy as I did before or if I could carry to term. We ask for prayer for guidance for this. Glenn's skype name is abrahamgoodard and mine is lilnurse98 if anyone would like to skype. Not even sure if anyone follows this blog any more or not since most pictures are posted on facebook.

Big boy 21 months

Wow Abe is making strides, leaps and bounds. Finally time to childproof the house. He is exploring everything. I ordered a gate online from One Step Ahead. Hopefully it will work. If my handy man husband was not playing salior then he could have made one to keep Abe safe. I guess the USN owns him so what more can I say. I am just thankful the new flooring was put down in the upstairs living area.He loves to eat now but we have to feed him. We need to give him something that won't stain his clothes up and let him experiment feeding himself. Sorry Abe raspberries are out, lol. He feels like he weighs 21 lbs now. His next weight check will probably be after Thanksgiving. He has a sleep study that might tell us why he still wakes up 4-6 or more times every single night. Makes for one tired mommy. I think caffiene is what keeps me going but I went a few days without it and made no difference in his sleep pattern. We added 2 additional respite providers this month. I am determined to use all 40 hours because every mom needs a break. MOPS speech was on stress last Friday. Very great speech and I had respite so I actually got to listen. Also the speech at mug n muffins really touched my heart and had me crying. We made it game night and had a blast too. Guess mommy is super tired because of all the activities we did over the last few weeks. Oh I am super excited that I have been able to do some Mary Kay again. I will try to update once we know the sleep study results. I also plan to start a night time wean of breast feeding with the hope that he will sleep all night.

Mover and Shaker

Wow is all I can say. Abe has made so much progress in the last month. He moves to find things that is not supposed to play with, typical toddler, right? His vision seems to have improved as well. He sees the eye doctor next month. He still wakes up 4-6 times at night but has been going to sleep between 1030-midnight and will stay in his own bed until I go to sleep. For some reason no matter how quite I am he knows that something is different, the light goes off so he wakes up. I don't turn the lights on when he wakes up at night. He has a sleep study next month to check for sleep apnea. I hope he does not have it because I can't see him keeping a CPAP on. He won't even keep sunglasses, hats or socks on. Yes he takes his socks off himself like his buddies do. I am concerned about the uneven flooring in my front room. Abe moved over there and hung his head over the side. I am excited to see him so active and moving but it is scary too. Since he is so mobile now colds and flus might hit his less so he does not even up in the hospital. He had a flu shot and so did I. Although I had mixed feelings about it this year. I was a little nausated for a few nights after but none of the side effects that the hype is all about. He is wanting to eat more foods. GI might take him off the GERD medication when the last bottle is empty. I will try my best to update this blog monthly. Pictures are on facebook.

20 months old

Abe and I had one heck of a trip to Arizona. The heat was difficult, carseat installation and 7 day admission to Phoenix Children's Hospital for parainfluzena type 2 and possible VP shunt failure. I heard that the heat broke records in Arizona as being one of the hottest one in awhile. Sorry we missed San Diego but I wanted to keep him close by in case he needed to be readmitted. He continued to vomit and have coarse breath sounds even after hospital discharge. I must say that Seattle Children's is awesome. Very sad about the medication overdoses. Please keep those nurses and family in your prayers. I did not hear the news directly but an event occured that resulted in a death of a young child. Abe is no longer vomiting however he lost 2 lbs while he was sick. We are waiting for referral to GI clinic for follow up reguarding vomiting and GERD. He has been vomiting on and off since late July, early August. He might be a kid that can't handle the heat too. He really liked the incubator that controls the environmental temperature. If you remember he had to be put back in it 3x before he graduated from the NICU. He crawled today completely off his play mat foam. He rolls from his back to his belly when he feels well. He moves around looking for toys or stuff that he is not supposed to get into, typical boy,lol. Now we just need to keep him healthy during cold,flu and RSV season so the hospital is not our second home. Tricare denied a brain MRI but the neurosurgery team, pediatrician and ECHO case manager helping us appeal this. Now it is up to me as a parent to print and fax in their letter and my letter. Wow I feel like I am working as RN again. Our Fall schedule is so busy with appointments, Little Tikes class, MOPS and some social events. I just ask for prayer that he stays healthy. I am a social person and I love to be around people. He seems to be social as well. He fits right in with a room of screaming, noisy kids.Which is great since some premature babies can't handle the stimulation. Not sure if anyone still follows this blog but I am trying to make an effort to update at least monthly.

Pray

Pray for Abe. He is still inpatient in Phoenix and it is horrible. Staff does not believe me when I tell them his oxygen level is low. How would they know it only alarms in the room and not outside. I think today I will keep the door open even though he has the flu and I have symptoms too. He is still vomiting,has foul smelling diarrhea which I hope is not C-diff and has lost 2lbs. Pulmonary talked like we would go home Friday. Seems like they tthink we are here because we want to be. We are supposed to be in San Diego. Which place would you rather be, a hospital or Sea World, the zoo, Cheese Cake Factory. We did not come all this way to be stuck in a hospital that barely has any hand gel. I guess Children's in Seattle has the title "World Class" for a reason. Based on our experience now we could never move to Arizona. Some nurses have a knack to work with kids and some would be better equipped to work with prision immates. Thankfully everyone has a different personality to care for patients. I wanted Abe to have Labuterol due to desats and cough but they would not give it to him because he sounded clear. They did not see or hear the desats to 86% on room air nor hear the coughing afterwards. Parents know their child better than any other person ever will. I will discuss with pulmonary today. If we were at home and his monitor kept alarming off and position changes would only help temporary and he started coughing I would give the Albuterol inhaler. Why the heck won't they give it here??? There is a doctor's order for it. One thing I don't like about admissions is I have no control over medications. Next time I think my kid needs Albuterol and it is refused to us, even with a doctor's order I am asking to speak to charge nurse. Please pray our next nurse has more patience to listen to a mom of a complex kid who also has been an RN for 11 years including peds nurse and has worked in health care since 1992.

7th admission-

Bummer that is all I can say. Abe has been vomiting, irritable and had a fever so we brought him to Phoenix Children's Hospital on Wednesday night. This hospital is way different than Seattle. He is still vomiting, treated with IV antibiotics for ear infection. they are also looking at his VP shunt, potential VP shunt failure or infection. I am waiting for the results of the abdominal ultrasound to see if a cyst has developed at the tip of the shunt. I really want the neurosurgeon here to get in touch with neurosurgery in Seattle since I trust them and they know my kid and his complexity. I will make sure to get a copy of ct films before I ever leave town again. Might have to cancel San Diego trip. I need to get back to Abe's room so I can talk to neurosurgeon. He is currently sleeping in his swing but was refusing to eat ice cream, yes my kid was refusing ice cream so you know something seriously is wrong. Pray for him and for me. The nurses last night were extra quite so we could sleep.

Surgery

Abe's surgery went so well that he got to come home instead of being admitted. We stopped by NICU and medical unit to say hi to the staff we know. The NICU doctor that admitted him at Children's last year was so happy to see him doing so well. He is 20 lbs now and 79cm. I got tearful while talking to him because I remember having a difficult conversation last year if we should stop all care. I thought he was going to be unresponsive and unaware of his environment so I questioned his quality of life. It costs millions of dollars to keep him alive in NICU. He was very professional when we had these conversations last year and advised for us to keep going and see what happens. I am so thankful that we kept going. Abe is responsive to his enviroment and is finally rolling from his back to his belly. His trunk and head control has improved. Abe truely is a blessing. He does have some needs beyond other kids but was given to the right family. A father with job security in the Navy for health insurance, income, bulid him stuff, read to him, rough house play and naptime and a mother with nursing experience to advocate for him with all the medical/surgical interventions .Based on Glenn's emails he really misses his son and loves him. I included in his care package a picture Abe colored in his class (well mommy and the teacher helped). I did not explain what it was I just sent it. Glenn emailed me to ask if Abe colored it. Daddy got his first picture from Abe, how sweet. He will take his first airplane ride soon if he continues to do well and not have any post surgical complications.

18 months old

Just 18 months ago my family faced life and death for our newborn baby, Abraham. It was awhile ago but sometimes it seems like just yesterday. I barely got to look at him from a distance, got to touch him for the first time over 12 hours later and hold him at hospital #3 two weeks after birth. I remember a Madigan doctor calling, stating while getting choked up with tears, “Do you want us to continue life saving techniques; he is fighting to not be with us any longer”. He required more than chest compressions and artificial breathing but also epinephrine a few times. What this means is that his body was oxygen deprived for so long despite artificial breathes and compressions that he needed a strong medication for his body to get the message to circulate blood. So in reality he probably did die during this time. God very well could have taken him to heaven that day. However God choose for him to live. He is stable now however his risk of infection is still very high due to low muscle tone of his core muscles and chronic lung disease or an older name for it BPD (bronchopulmonary dysplasia). Nature designed babies to be born at a certain gestational age for a reason: lungs, heart, brain and everything is fully developed and the human life is ready to handle being in the outside world. Abe’s lungs were not ready to deal with breathing which caused abnormal formation of lung tissue including inflammation and scar tissue. Some might say I am paranoid about him getting sick but it is not an abnormal fear in my book. He has been admitted to the hospital 6 times in a 16 month time frame. NICU for over 96 days, VP shunt surgery last August, H1N1 with pneumonia in November over Thanksgiving, other respiratory infections: February twice (10 days after Glenn left for training and 2 weeks after that discharge) and most recently June 2010. The CDC has some great information on guidelines for preventing the spread of infectious diseases such as the common cold and flu. A cold typically makes someone feel bad but majority are not admitted the hospital for it. Some might say, Oh she has it easy, only one kid and he does not get into things. Reality again he is developmentally delayed. Most 15 month old kids are walking, sitting up and sticking cereal in their mouths. When he is 13 years old and weighs 90 or more lbs he still might be sitting in a chair and his mom and dad will have to lift him out of his booster/car seat into his wheelchair. I did not choose to have a premature baby or one with chronic complex health needs but was rather chosen. Majority of people are not equip to care or advocate for a child like Abe. So I ask that I am not judged for protecting my child from infection, after all his surgery is scheduled in less than 2 weeks and was already rescheduled due to illness and admission. Please pray that he stays healthy enough for surgery and is able to visit Arizona. We already have a wedding reception and a birthday party to attend during our visit.

July 2010

This is the monthly update at the end of the month. Better late than never. Abe's surgery was canceled because he was admitted for a respiratory infection in June. We tried to manage it at home but he was not maintaining his oxygen saturations and was not eating. He spent 5 nights at Children's Hospital. He is doing well now, gained back the weight he lost. He was 19 lbs 12 oz at last week's appoinment. He is also getting so tall. His surgery will be in August. If everything goes smoothly then he will be taking his first airplane trip (he was on a helicopter that the day he was born) to Arizona. We also plan to drive to San Diego from Phoenix to visit our friends there. For safety reasons I am not posting actual dates in this blog. I can personally give you exact dates privately. He started parent/child swimming. The pool is cold but he seems to enjoy being in the water. The goal was to loosen his muscles but he is pretty tight in there due to the temperature. He is exhibiting normal toddler behaviors, he drops his toys and laughs, knocks the spoon out of my hand. He is currently getting his molars in, oh fun. He is eating more solids but still prefers pureed foods. We are working on more advanced foods and textures. He loves Mexican food, beans and rice with melted cheese. He has a new OT through Holly Ridge. He started his little tikes therapy class. He does okay but some times gets over stimulated with the other kids there. The class is weekly at 9am. This is difficult for us because we are both late night people. He has PT weekly, baby story time and OT 3 times per month. He says mom or momma when he needs something. His muscle control is delayed but he is getting stronger. He wants to type on my computer right now. will update after his surgery in August.

June 2010

It has been awhile since I updated here. Again I update with pictures on face book almost daily. Abe had a cold a while back and so did Glenn. Abe did not have to be admitted this time around because he continued to eat and did not require oxygen. The big oxygen tank has been removed from our home, yeah. Glenn and some people from church assisted him in puting down Oak hardwood flooring in the front room. Ideally we wanted to do the entire house, minus the bathrooms but Glenn ran out of time. He deployed with his ship this week. It has been a rough week for some strange reason. Usually deployments don't start out this bad. This is our first one, other than him being gone for 3 months for training, since Abe was born. Maybe it is more difficult because he was gone, came home for 1 month then deployed. That month went so fast. he got a lot done even with the cold. Abe might have a minor cold again and he is scheduled for surgery Monday morning at Children's Hospital. He saw his doctor today and she suggested to keep the surgery scheduled and see how he does over the weekend. He is still waking up at night which is could be the sleep apnea. The sleep study is in November. He is progressing social skills, loves to drop all of his toys, especially the big ones onto the floor to hear the crash. He giggles his head off when he does this too. Pictures were not updated on this because it requires both Glenn and my computer for some reason. Please pray that his surgery goes well. He might go home that day or be admitted. We are not sure. If he is admitted it will probably be just over night. We plan to take it easy next week after his surgery. We have been busy walking, play groups and I started doing more with my Mary Kay. I would love to start scrapbooking again. Just when to find the time???Abe only naps on the go. He will nap at home if I hold him but I gently put him down and he wakes up crying. I pat his belly and he just continues. I walk again and it gets louder. The solution is for me to walk to get exercise and he gets to nap. This does not help the house stay clean. He is getting molars in. He has tooth decay which was very disappointing to hear. I heard this is common for premature babies and babies with a history of reflux. That is it for now I need to continue preparing for Monday's surgery. I will try to update after his surgery.

15 Months old

Abe is 15 months, corrected age 12 months. Wow we really did not know if Abe would make it this far. New pictures will be updated when Glenn returns home next week. I will start head to toe like I tried to do as FNP student. Neurosurgery: VP shunt is fine no current need for new one to be surgically placed right now. He has a haste MRI scheduled for October or November then he will see neurosurgery NP to adjust the VP shunt. His hair is growing well and soon the shunt will not be as noticeable. Eyes: eye doctor at Children’s left a voice mail, they assessed that he sees 20/710 and has cortical vision loss (CVL). This is a result of damage the optic nerve and the brain’s ability to process what he sees; therefore glasses will not help the problem. I personally need to read up on it myself because I don’t remember learning about it in nursing school. He also has stage 2 ROP. He has an eye specialist from the school district coming 2x month to work on vision exercises. I have found it to be beneficial. This teacher, Pam, brought info on on-line free courses that Glenn and I can take to help with visional impairment. I will see if his respite providers can also take the classes free of charge. Also we can order books from the library for the blind. The home therapists never gave us any information about the library or the classes so I am so glad I said “YES” I want my kid to have a vision teacher and was not pressured to decline additional services. He has an eye appt. at Children’s at the end of this month. Ears: he passed the behavioral hearing test however struggled with low tones and favored looking to the right over the left. We are not sure if he has hearing loss for low tones since most babies don’t find low tones as interesting as high pitched tones. We also wonder if he liked the toy on the right over the one on the left. Nose: just growing bigger. Mouth: more teeth, more teeth and all that goes with that. I am concerned about one because it has a yellow appearance. I think he has 6-7 teeth. When Glenn left he had only 2. He passed the swallow study but was mad as mad can be during it. He caught on that barium is not a great thing to drink. Despite having an uncoordinated suck at times due to his fussiness he managed to protect his airway. They did see a delayed swallow but he was so mad during the whole exam. Chest: his lungs are good but he is still at high risk for infection due to developmental delay and lower muscle tone. Option care picked up the big oxygen tank out of own home. He has only required oxygen a few times while sick. We use the oxygen monitor occasionally at night only. He is so much more portable. He still has desaturations of oxygen during the night to 84 % which could be attributed to obstructive sleep apnea. Sleep study scheduled in November. Pulmonary feels this is why he wakes up frequently during the night. GI/Abdomen: He still suffers from GERD and we have found the compounded reflux medication we get at Children’s to work better than sol u tabs. He has an appointment with GI at Children’s to discuss the reflex per Pulmonary’s recommendation. GU: he will be having surgery to bring his testicles into his scrotum June 21st. They are not undescended testicles they are just too high canal. This will be an outpatient surgery unless complications arise or they decide to admit him. Motor: he has hyper muscle tone however I have also heard some professionals say low tone. He keeps his right hand very tight and fisted. He does keep it open occasionally and has a splint to assist with this. He is working with home OT and outpatient PT. He can sit briefly unassisted but he tends to be in the tripod position and is distracted by a toy. He has strong abdominal muscles and was able to bring himself to a sitting position while he was sideways on the boppy pillow on my lap. Development: eating more solids, he is working on different textures including apple puffs and baby teething cookies, but prefers apple sauce consistency. He drops his toys behind his back while looking at me while he laughs. He knows I hate his toys on the floor because I have to wash them. He has finally mastered breastfeeding so momma is not tied to a pump. Wow I have more time now. Amazing I could have switched to formula months ago but choose not to. Still have milk in the deep freezer too. I will probably become a lactation consultant in the future. He was 19 lbs, 2 feet 5 inches last week. Social: Glenn returns home next week briefly before deployment and new hardwood flooring will be installed. I am entering him into the Little Heroes Project. Just need to find a way to sum up his story to enter it. I participate in the Military Special Families Support Group monthly. Last month they had the Navy Secretary and a congressman come to hear family stories about the impact respite care has provided. Due to a time crunch I did not verbally participate but our story was included in a book with family photograph. Last I heard the book was delivered to President Obama. Not sure if he will actually read it but the goal is to get respite care for all military families with special needs children. Currently it is only available only in a few locations. Well Abe is waking up from a nap so guess it is time to go.