Tuesday, August 18, 2009
1. This is me, playing with my choo choo, all ready for my big cation!
2. Typing some emails while sitting in my pack and play in the hotel. This was my first hotel stay. Nothing much to speak of. I didn't even get to touch any surfaces of the hotel!
3. Me and Mom, looking at some cows at a rest area. This was a much needed break, as I was packed in the car tight and Mom was squashed!
4. Driver's seat made changing station. Thanks Dad!
5. Hard turn to the right!
6. A good driver in the making.
7. Final destination: Grammy and Grampy's house! (The grapes were not for me.)
8. Me and Grampy reading my favorite story.
9. Me and Dad kicking back at the Bandshell, listening to a nice concert in the park. By the way, this music was totally tolerable for me, but if my Mom gets out her flute or my Aunt H gets out her violin, watch out!!
10. Me and Aunt H
11. Me playing, my cousin O eating.
12. A crazy species bred only in Sioux City...
13. I really was packed in there like another piece of luggage. Mom and Dad are lucky that I am a good sport! I didn't cry but for about 5 minutes during the whole trip!
It was sure good to see everyone at Grammy and Grampy's house! We had a really fun trip. Thank you Grammy and Grampy for helping us have such a fun time. We love you!
Tuesday, June 23, 2009
Monday, June 15, 2009
Tuesday, May 19, 2009
We took our first family vacation with Boo this past weekend - Idaho Falls! It was fun to be with family again and it was really fun to take a road trip. Boo is an exceptional car seat baby. He sat in his little seat and talked to himself and made calls on his cell phone and slept the entire time. He didn't cry even once during the trip (3 hours each way), not even when he had a major blowout! Changing him in the front seat of the car was a new experience. :) He enjoyed the family quite a bit, and we were especially glad that he got to meet Great Grandma and Grandpa T, his namesake. Unfortunately, I did not take any pictures on the trip. What can I say, I am just not a camera person. It does make for somewhat of a boring post however...sorry.
Speaking of Boo, he has made a TON of progress this past week. The Early Intervention nurse is about to come over and I can't wait for her to see! He started sitting independently, bearing a lot more weight on his legs, grabbing things out of containers (surprisingly difficult for little ones), bending over to reach for things, and I even saw him roll from back to tum once! This is a lot to have accomplished in one week! I am hopeful that things will go smoothly during and after his surgery (June 1st) so that we can get right back on track developmentally. Who knows what will happen, but I am hopeful we will not regress too far for too long.
Saturday, May 9, 2009
4. Old, broken toilet - S and H replaced our middle bathroom toilet a few weeks ago. Our new toilet is very nice. It got Home Depot's highest ratings. Apparently it is not too difficult to replace a toilet, at least not for these two! We were going to have the plumber come out and fix the problem or replace the toilet if need be, but it ended up that that would cost around 500-600 dollars at the very least! S told me that if I could wait a few days with a broken toilet, I could pick out whatever toilet I wanted and he would replace it. I couldn't resist the offer, so I picked out a somewhat higher end toilet from Home Depot with an elongated bowl (much better, by the way) and it is supposed to be able to flush 30 golf balls in one flush! (Not that we need to test out that feature!) Anyway, all this means is that our old toilet was sitting in the garage for all this time (since the beginning of April) and we have finally gotten rid of it. It fit into the Protege and was taken to the dump.
5. 2 destroyed studded tires - These were also in the Protege at the same time as the toilet. We had tried to put these tires back on for the winter, but the car place said they were worthless. We made it fine through the winter without any semblance of snow tires, so thank goodness for flat driveways! 6. A 10 ft tree - We purchased an Ash Patmore tree after some research. It is a really nice tree, and hopefully it will grow to be about 45 ft tall and 35 ft wide. We stuck it right in the middle of our front yard. We did manage to fit it in the Protege, through the sun roof. We got all kinds of funny looks and pointing fingers as we drove through the city, but we made it home in one piece, and now it is planted. Admitedly, it did look pretty funny and I laughed the whole time we were driving around with it (excluding the time I spend telling S to drive slower so the leaves wouldn't get wind-whipped). I think our transport was successful, but time will tell for sure.
7. 2 bottles of Germ-X - We never leave home without it!
8. A bunch of papers - For some reason, we can never get rid of all the papers that invade every area of our existence.
9. Diaper Bag
10. Water Bottles - I have still not given up on bottled water. You can get after me for not being "green", but I still cannot stand the taste of tap water. One of these days I will actually buy a water filter, but I have to taste that water first too. I still only like Kroger bottled water. I guess I am picky...
11. Stroller - Massive.
12. Infant Front-to-Back Carrier - Which Boo has not yet liked.
13. 5 disposable pillows - From the hospital. They should work nicely for guests, I hope.
14. First Aid Kit
15. 3 Stakes and a bag of rope - For the tree, which we have not ended up using, even though S expended a lot of strength cutting the wood with a saw at Home Depot.
16. 40 pound bag of red mulch - I really wanted the colored kind. It looks pretty bright in front of our house. Hopefully as we get some more things planted out there it will all look nice.
17. 2 oxygen tanks and a portable tank - I am so paranoid about always having enough oxygen with us. We have run out in the car more than once!
18. Feeding pump backpack - This is new, and fairly convenient, although it is much less accurate in volume delivery than when it is on an IV pole, as it is at home.
19. Oximeter - aka. Beeper
20. Chewy Chips Ahoy and grape juice
On a side note, Mother's Day was good for me this year. Looking back, last year I wasn't sure I would have another Mother's Day with little Boo. He was still less than 2 pounds then. I couldn't even imagine having him at home with us! This year was so much better. S said it was "my day", so I did not have to worry about feeding Boo. This is always the big stress in our house, as it involves thawing milk, making sure the pump has enough battery, and carrying the IV pole all around with us, wherever we take Boo in the house (up and down stairs many times, since his room is upstairs, but not any of his fun toys, which are too big for his room). I also got to sleep in.
We went to church all together, but Boo and I left after the sacrament because all I could hear was COUGHING! I am sure that mostly everyone was just clearing their throat, but coughing is not what you want to hear when you have a child who needs desperately to stay healthy. (We just got the bill from our influenza hospital stay which was 6 days long - $19,400!) Really, the money has nothing to do with why he has to stay healthy. If he gets sick, surgery will be pushed back another 4-6 weeks and he could very well need to be hospitalized again. I don't know if I could deal with that. Plus, who wants to be sick?!We also went to Temple Square for Mother's Day to see all the flowers and the temple. Boo doesn't get out much, as I have already mentioned, so this was a fun trip for us. Unfortunately, when we took him out of his stroller in the Visitor's Center, he had VERY poopy pants (boopy bants), so we had to cut our visit just a little short. We walked around once and then we skedaddled. He was a very good sport.
Anyway, today S brought some beautiful roses home for me. That was very sweet. He knows I love flowers, yet he views them as so impractical as they are short-lived. So I am glad to have them. They have completely changed the feel in the kitchen!
I just love being a mother! I am so glad to have Boo and to be able to experience life with him. And I am so grateful for my good mother who raised me and is so kind and loving and caring. And I am glad that my husband has a good mother as well who cares about us very much. Hope everyone else had a good mother's day!
P.S. Boo learned how to give "High 5" on Sunday, so we have been having a lot of fun with this. I think this is the very first thing he has learned to do, in terms of on command and knowing what he is doing. So if anyone ever needs a "High 5", you know where to go!
Sunday, May 3, 2009
Balloons bouncing off head - As I was wrapping his birthday presents, I blew up five blue balloons. He doesn't care about them at all. However, I tried handing him a balloon a couple of times. Of course, the balloons are too big for his hands, but they did hit his head, which was really funny. It seemed like they were really heavy and they pushed his head backwards. So cute.Eating Frosting off cupcake - In lieu of buying a big birthday cake (since it is only the three of us and S doesn't like cake and Boo doesn't eat, I thought this wise), I bought six cupcakes. I love cake, so I ate 3. I put one on Boo's tray and he sort of dove right in! I was SHOCKED! He ordinarily will not touch anything resembling food. Anyway, he didn't willingly eat any, but since he is a "Sucky Thumby"...
Bath - We gave him a bath right after the cupcake scenario. It was all really very fun. We didn't care about getting anything messy. In fact, I saved another cupcake to do the whole thing again tomorrow! :) Unfortunately, the frosting was dark blue...probably NOT the best choice for a baby with a heart defect...Turning Blue - We wouldn't have known if he had, because he was significantly blued with frosting! It was great to see food all over him and his high seat and especially on his face. He didn't seem to notice that there was frosting on his fingers when he sucked them, but he didn't care either, so that was encouraging.
Barbecue with family the next day - Boo's first extended family outing was to D and A's house for a barbecue. Since it was nice out, he got to stay outside in his stroller and see everyone, including the kids from a distance! Otherwise, we were going to go somewhere while S visited with the family. It was so nice to be there all together and to see most of S's siblings.
Blessing - Today was Boo's baby blessing at church! I thought this day would never come, especially since his surgery got postponed, thus lengthening the amount of time we have to seclude ourselves. (Surgery for G-tube and Nissen will be June 1st now, so we will have to keep him in until mid-June). S was nervous but he did a great job at his first baby blessing! Yeah, S!! It was a very emotional day. It didn't help that the bishopric changed in the same day. :)Tuxedo - Instead of the traditional baby boy blessing rompers that go over baby's head, we got him a baby tux. (With all his tubeys etc, it is difficult to get things over his head). The tux was SOOOO cute! I had to buy a large (12 month), which I knew would be too big, but how else should I buy clothes for a guy that is 12 months wide and 9 months long? :) It was big, but not too big. It was still somewhat of a pain to get on him, mostly because we were in a hurry and trying to rush him through it.
Blessing Blank - My mom made a blanket for his blessing that she gave to us quite awhile ago (back when we thought we might bless him as a little guy...). Anyway, it is BEAUTIFUL! I got it out yesterday, and in an effort to get him excited, I squealed "It's your BLESSING BLANK!" and I threw it on top of him. He thought this was great fun, so we played the game over and over again yesterday and today. I am sure the humor of it all will wear off soon and I will have to think of some other crazy thing to do to make him laugh, as is usually the case.
Laughing - Speaking of laughing, he just started actually giggling just within the last couple of weeks. We LOVE it! He especially laughs when he gets his neck touched (or scrubbed) softly and today he laughed as I was putting his pants on. Come to find out, he is ticklish on his side. Oh man, it is fun to see him so happy.
Wednesday, April 15, 2009
Sunday, March 29, 2009
3. Day 3: Grade 1: Brain Hemorrhage on left side. It was resolved by 30 days. They usually progress to more severe (grade 2 to 4) or can continue as is. Boo's disappeared. Grade 1's are mild.4. By the end of first week, he was transferred to the children's hospital to be able to be near the pediatric cardiologists and the operating room. After two weeks, J, one of our primary nurses, convinces the medical team to not transfer Boo back because she liked him. This allowed him to stay under close supervision of cardiology team, which proved very important.5. First full day at the children's hospital, A requests that V be one of his primary nurses. She is the cardiac specialist NICU nurse. Her last primary has just barely gone home. V's unparalleled experience and knowledge helped to properly diagnose de-saturation as either bronchospasms or basic lung prematurity. Some nurses would believe that he was undergoing a tetralogy of fallot spell but V would do other things first like listen to see if the heart murmur was the same and other techniques. J, another NICU nurse, said when a true tet spell occurs "you never forget it and you are running to the operating room." A misdiagnosis of tet spells could have encouraged the doctors to intervene sooner than was reasonable.6. Bronchospasms. Boo had these often but has since overcome them post the shunt. Something in his lungs would seize up and his oxygen levels would desaturate a lot. He frequently need to “be bagged” where the nurse would manually force oxygen and pressure in to his lungs to make him breathe.7. Subglottal stenosis: Boo is extubated (have the ventilator removed) three times but each time he needs to be reintubated because he cannot keep his blood oxygenated. The ventilator gives Boo lung disease by killing the lung cells charged with the responsibility of blood gas exchange due to the ventilator pressures needed to breathe for him. It is suspected that he has tracheal malacia, meaning that his airwaves collapse onto themselves without the ventilator tube present to keep him open. Study shows his subglottal area of the trachea to be heavily scarred and very sensitive (tracheal stenosis). A week later, when he was finally successfully extubated after his shunt surgery, another bronchoscopy showed the damaged area to be completely healed.8. Shunt: Boo had to gain 600 grams before he would even be considered for a corrective surgery. Week of June 24, Boo reached 1400 grams after two months. He had had no reserve for a few days and was on almost 100% Oxygen. Any movements would cause him to quickly drop oxygen levels. Tuesday morning A and I decide to ask our families to fast for Matthew since he was not doing well. At about 8:30, he experiences a "tet spell"where the pulmonary artery "spasms" and blood to his lungs is restricted severely. V, who has Boo at least once a week, was his nurse on this crucial day. Boo is readied for emergency heart surgery to create a shunt to allow blood to his lung and bypass the restricted pulmonary artery. Pediatric cardiovascular surgeon Dr. K consults with us that this is the only option and it is high risk because Boo is only 1.4 kilos. One item of serious concern is the question of whether Dr. K will perform the surgery with Boo on heart and lung bypass or without. The heart and lung bypass machine has the risk of brain hemorrhages (bleeds). He did decide to put him on heart and lung bypass because his oxygen was so unstable. I gave Boo a blessing with Dr. C and felt impressed to state that he would be fine. I also give A a blessing. We were very fortunate to have Dr. C as our attending physician, who was our attending neonatologist twice: when Boo needed the shunt and when we were discharged which we consider another tender mercy. Sister C stays with us during the surgery and provides the best company we could have asked for. Later we found out that Boo was the smallest infant to go on the heart and lung bypass machine at this children's hospital. At the end of the day, the surgery is deemed successful, as far as Dr. K could tell. After surgery, his oxygen saturations are stable for once! Later we confirm there were no complications from surgery. 9. Boo is finally taken off the ventilator and A can now hold him. His ability to regulate temperature stabilizes and he graduates from his isolette to a crib. 10. Boo is diagnosed with urinary tract infection. Further investigation reveals bilateral urinary reflux. There is risk that he would need some corrective urinary surgery and after six months of taking antibiotics it is resolved.11. Boo is discharged from the NICU Aug. 10. A and I notice that we can speak as loud as we want around Boo and we don’t wake him. The early intervention nurse confirms that he is deaf in his left ear. A later audiologist appointment states that it is possible that his deafness is only fluid build up. He later begins to hear and is woken up by the smallest sounds at night.
12. Boo is also diagnosed with kidney stones due to all of his diuretics/lasix. These have never bothered him and they will likely go away on their own.13. Boo’s cry is very hoarse due to being on the ventilator for 2.5 months. Even after he arrives home in Sept he still has a very soft cry. His cry eventually became a normal baby’s cry.
14. Our first cardiology visit after Boo’s NICU discharge, Dr. G tells us to turn Matthew’s oxygen down to ½ from 1.5 ltr/min. This is bold move since we have needed to keep him here in order to keep his oxygen saturations between 65 and 85%. We turn him down and within an hour he is fine on 1/16 of a liter/min.15. Oct.1, Boo undergoes full open heart surgery for his tetralogy of fallot repair. Shunts are generally good for twice the original size of the infant and now he is 3 times his original shunt weight. He is still small for a tetralogy of fallot repair. My brother, D, and I give Boo a blessing and felt to say that we wouldn’t have complications, something that I would forget but A did not ever forget. The surgery takes one to two hours longer than expected. Dr. H reported that he had never performed such a difficult tetralogy of fallot surgery in his 18 yrs of heart surgeries. Tetralogy of Fallot heart surgeries have been performed since the 1940s. Boo’s right ventricle was so thick that he could not see where to sew to patch the hole between Boo’s right and left pumping chambers. The risk is that the electrical conduction lines, which are nearby, may be severed during the sewing of the patch and require Matthew to have a pacemaker for life. Boo had already been on heart/lung bypass for a long time and every minute was putting him in a worse condition of fluid build up and bodily stress. Dr. H decides to sew the patch blindly and he said he did have to pull harder then usual to do the stitches. Dr. H reports that he accomplished everything he set in to do: take down the shunt, open up the pulmonary artery, and sew the VSD. After surgery, his heart needs to be paced with an external pacemaker. Dr. H said that he saw some evidence of his heart’s electrical recovery while still in the operating room so he says that we will wait two weeks before deciding on a permanent pacemaker and says that he has never had to put a pacemaker into a child after a tetralogy of fallot repair.16. A and I learn there is somewhat of a lifestyle impact with a pacemaker including a list of electrical devices that need to be avoided. For several days, his heart needs an external pacemaker and gets worse in fact where he is “in complete heart block” meaning both ventricles and the atria needs to be paced. Almost all of the medical team believes that Boo will need a pacemaker after the first week, but Dr. H and one random cardiologist that A spoke to once still believe it could come back. On the 11th day after surgery Boo’s heart electrical system begins functioning again.
17. After 3 three weeks, he is able to breathe without the ventilator so the lung disease is no longer getting worse, and he is able to breathe with nasal cannula, oxygen levels similar to pre surgery.18. Post surgery, one of his battles was fluid retention from being on the heart and lung bypass machine. Fluid in the lungs decreases his ability to oxygenate himself. At one point he was on five different diuretics to get him to relieve himself of the fluid, which were the most diuretics that anyone ever knew of any child needing. While in the NICU, he had received several lasix/diuretics in order to keep the fluid out of his lungs so he could maintain his oxygen saturations, which made his kidneys fairly unresponsive to the diuretics. These diuretics had side effects like unbalancing his electrolytes, and his body countered by retaining CO2 to maintain a constant pH. It also pounded his kidneys.19. After surgery they transitioned from feeding him through IV to through an NJ tube that was a constant drip feed that bypassed his stomach. They transitioned him later to an NG tube that delivered food to his stomach but brought with it the gastric reflux (spit up). He also had an oral aversion for quite awhile after surgery. When he was released from the hospital he had to receive his food via NG on a continuous drip. Since A and I had seen him pull out his NG tube during a feed and get milk in his lungs before, this was exhausting to make sure that he didn’t pull out his tube on a 24 hr basis during drip feeds. But gradually he was able to transition to a “bolus” feed where he eats once every three hours and it is not a continuous drip.20. Narcotic withdrawals in NICU and at home characterized by severe agitation, fevers, and sweating. The wean schedule on the narcotic was very slow and we were at the end of the wean by giving him only 0.05 ml of methadone when we accidently put 0.5 ml instead of 0.05 ml of narcotic. We pumped Boo’s stomach through his NG. He was upset the next day but we did not dare give him even a small dose of narcotic out of concern that he already had overdosed.21. Flat Head. His head is misshapen to the point where it is flat on the back and somewhat angled due to the time on his back. We finally decide to seek a medical helmet even though insurance wouldn’t cover it and now his head is shaped perfectly after 2 ½ months.
22. A special RSV prevention injection is given to any infant that was premature at birth, has lung disease or heart disease. Boo qualified with all three. His delicate situation required that we quarantine him from large groups of people (church & Walmart) and visitors that may be sick from November through April which is the end of RSV & rotavirus season.