Monday, August 15, 2011

8 Months...In a nutshell!

I cannot believe it has been eight months since I have posted anything on this blog! Let's see if I can recap everything that has happened.
Christmas was great this year (last year?) but very soon after, I started cramping and becoming increasingly uncomfortable. I had a 30 week appointment on Wednesday, December 29th and spent most of Monday and Tuesday taking it easy and doing kick counts. I knew something wasn't right by Tuesday night. Mom went to the doctor with me and I was sent to the hospital for a 23 hour observation. Matt came to meet us and after taking all of my history and watching Miles' heart rate drop, I was moved to a room, put on IV fluids and oxygen. When the anesthesiologist came in to ask if I was ready to go, I just figured he had the wrong room. Then about six people in full scrubs came in to whisk me away. It was very fast and very scary! Miles was born at 3:24 pm on December 29, 2010. He was two and a half pounds and fifteen inches long! I did not get to see him until about 2:00am the next morning but my family was able to visit him in the NICU and bring back pictures. Thursday the 30th, I started having trouble breathing. I was sent for a CAT scan and an EKG but all came back normal.

I was feeling better and was released that Sunday. Leaving my baby at the hospital was the worst pain EVER! I was still having trouble breathing and could only sleep sitting straight up. I slowly got better until Wednesday, January 5th when I started having horrible pains in my left side. Thursday morning, after being up all night, I called my doctor and she told me to go to the emergency room. Mom picked me up and we went back to the hospital. I was diagnosed with congestive heart failure and blood clots in my lungs and in my heart. I stayed in the hospital for the next week.

Meanwhile, Miles was still in the NICU. He was on a ventilator for the first few days and then the cpap machine. He was tolerating his feeds and was slowly gaining weight. He was hooked up to a lot of monitors and was receiving antibiotics through IV just as a precaution. By the end of January he was on a nasal cannula with very little oxygen and very little flow to help remind him to breath. He was attempting to nipple feed but he was mostly getting tube fed. When Miles was four weeks old, he aspirated and got breast milk in his lungs. He went back on the ventilator for a couple of days then went to the cpap and finally back to the nasal cannula. It took him about a week to recover from aspirating. Unfortunately, because of the fluid in his lungs, he needed more assistance breathing with a higher oxygen level and a higher flow. All of this inhibited his ability to nipple feed.
February was filled with ups and downs. I would get up and go to the hospital in the morning when Matt would go to work. I would stay all day, leave at 6:00 when it closed and be back at 8:00 with Matt to feed, change, read and tuck Miles in for the night. We battled apnea and bradycardia episodes, all kinds of tests, blood work and lack of oxygen saturation. (Apnea and bradycardia episodes are where Miles would stop breathing, turn blue and drop his heart rate. He would need to be stimulated in order to breath again.) Thank God for the nurses and my friends and family that helped keep me as sane as possible. I cannot believe that we made it through.
The beginning of March still held no end in sight for Miles to be released. He was still on oxygen and was still not finishing his bottles. One random weekend doctor decided to try lasix to see if that would get the fluid out of Miles' lungs and it worked! He got off oxygen and started to finish his bottles. Matt and I roomed in with him on Sunday, March 13th and Monday, March 14th. Miles was released on Tuesday, March 15th after 77 days in the NICU. We currently hold the record for the longest stay in the Mansfield Methodist NICU. I hope no parent will every beat our record. No one should ever have to go through that!
Miles came home on an apnea monitor and kept it until he was six months old. He never had an episode at home. Thank Goodness!
April, May, June
Miles celebrated his first Easter with his Grandparents and Uncle Andy from Iowa. We celebrated my first Mother's Day and Matt's first Father's Day. We are so lucky to have such a sweet little boy.
July and August
Miles' left arm was being sluggish so Dr. Sweet sent him to physical therapy, occupational therapy, an orthopedic specialist and a neurologist. The neurologist says there is a 50/50 chance that Miles could have a mild case of cerebral palsy. His left side has increased muscle tone and he is at a higher risk because he was a preemie and had a stage two brain bleed. The orthopedic specialist says there is a high possibility that he has a brachial plexus injury that left his left side week. (A brachial plexus injury is where the bundle of nerves that work your arm has been pulled or torn.) The physical therapist says that he has severe torticollis. All of these problems can be treated by physical therapy so that is what we are doing.
The soft skull of a preemie and lack of desire for Miles to move his neck correctly has left him with a very misshaped head. He is currently wearing his STAR helmet to reshape his skull. He will most likely wear it 23 hours a day for the next three to four months.
Miles is on stage two vegetables and enjoys sweet potatoes, peas and squash the best. He is 15.5 pounds and over 25 inches tall. He is wearing six to nine month clothes and is in size two diapers. He is working on lifting himself off the ground when in tummy time (the helmet has put a kink in our tummy time but he's working through it) and he is bringing his legs under him. He rolls from tummy to back and from back to side. He is a very happy baby and thinks his daddy is hilarous!
Thankfully, I signed up for disability through my job and have been able to stay home with Miles until today. If it were not for heart failure and those blood clots, I would have had to come back to work a long time ago. Miles did great being dropped off a daycare but I think that it is about time for me to pick him up! Since I didn't really have to work today because I work Saturday, Matt and I wanted to do a practice run and I think practice is ending! I am really going to miss him! Please feel free to donate lots of money to our "Don't Put Miles In Daycare" fund!

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