The last week for Grant!

Last Thursday, May 19, 2011 Grant had his swallow study and found out all this time he has been aspirating so they thickened his formula and any liquidy foods to nectar with SimplyThick. On Friday another preemie mom posted on facebook how they didn't want preemies to take SimplyThick because it was causing nec so I didn't give it to over the weekend cause I was too paranoid. Tuesday we went to his monthly appointment and we tested him for 20 minutes on room air and so she decided we can try weaning at home. Also she is sending him to an ent specialist to have them clip his tongue (the extra skin under neath the tongue) and hearing and speech for hearing test and speech therapy. Wednesday we went to his physical therapy for his torticollis and she said he was doing so good with that and he doesn't need to come back! Woohoo!! Today we woke up and took off his oxygen and he did really good till he went to take his 2 naps he would dip down to 92% and go right back up so tonight as soon as he fell asleep his oxygen level went down to 92% and then 91% so I unfornately had to turn on the oxygen and put it back on him. I than called his dr and they said to keep him on the oxygen tonight and retry tomorrow but sound like he isn't ready to come off because he has to be at 93% for atleast 24 hours. My heart is broken, I knew I shouldn't have gotten my hopes up

Since Grant has been home

Grant did come home on oxygen 1/4 of a liter and a heart/apnea monitor due to his reflux. Not much happened between the day he got home and the middle of September except for dr appts and I had to stop bfing because he was not gaining. September 20, 2010 he had an appt with the special care clinic down at childrens mercy and he was breathing 80 per min and they did an xray and realized he had a mildly enlarged heart, he was also swollen and they couldn't hear the heart murmur. They gave him a lazik and gave him a prescription of a lazik to take at home twice a day and come back the next day. Next day, same thing so they admitted him to the hospital and come to find out he not only had a pda but also had pulmonary stenosis (narrowing of the valve from the heart to the lungs) and fluid on the lungs. He was there from Tuesday September 21, to Saturday September 25. Then come Sunday September 26 I was so tired and kept asking for my husbands help and he wouldn't get up. I went to give the baby his medicine and realized I had just given him 10 times the amount he needed and so we rushed him down to the hospital and they keep him for observation for 24 hours. Needless to say we got rid of those syringes (the big ones). Fastfoward to that same Friday October 1st he was vomiting every where and I decided to take him to urgent care well its a good damn thing I did because he had fluid on his lungs again and they said the way he was breathing with in a couple hours we could have lost him. He was there till that Sunday or Monday trying to get it resolved for the last time. He has had concerns with his muscles, at one time they were hypertonic and now they are leaning more towards hypotonic. He has had trouble eating and just today found out he had been aspirating all this time and so they are thicking his liguids. Last time he was at the dr he weighed 16 lbs 1 oz. We go back next Tuesday to see if we can get him off the oxygen and I so hope so. What I wouldnt do to be able to be able to pick my baby up without having to worry about getting his oxygen and monitor. Its frustrating but yet very rewarding. It has changed my life for the better. I know now that I want to work with special needs kids and when the time is right want to adopt one since I am physically done having kids of my own. That breaks my heart everyday but God wanted it that way.

Grant's 70 days (10 weeks) in the nicu

Ok like I said before that first day he was on c-pap, June 18th they had to put him on the vent. Well again Sunday June 20 (which happen to be Fathers Day) they tried to place him back on the c-pap but not for very long. He was on the vent from June 20, 2010 till July 17, 2010 (the day he turned 1 month)! I remember seeing him for the first time, I thought he was so cute. Sierra and Nicholas came up to meet him on June 18, 2010 and they fell in love with him right away and thought he was the most beautiful baby they had ever seen even with all the wires and tubes. The first time I held him was 1 week after he was born ( I think) June 24, 2010. I was sooooo scared cause he had the vent in and when Grandma JoAnn (nurse) moved him I was afraid the vent would come out. I couldn't watch them get him out. He did have a pda (heart murmur) that supposedly closed with the help of medication. He had immature retinas but that resolved itself. He had to have like 8 blood transfusions while he was in the nicu. There was a couple times they thought they were going to have to call me with bad news but Thanks be to God they didn't. The Monday before he came home he had hernia surgery on both testicles. That was so hard seeing him being wheeled off. I did have great support there that day, my pastor, my hubby, my mom and my bff was there. When they wheeled him back up there he unfornately was still on the vent and they had to give him medicine to paralysis him because he was having problems breathing and thrashing around. It was so scary seeing him so still and seeing the vent breath for him again. But he bounced out of that and was still able to come home on Thursday August 26, 2010. That is also the day one of my best friends had her son in Bangledesh (hope I spelt it right). Love you Mahee and Abyan. August 26 is a good day for us both

Grant's birth story

I found out I was pregnant January 3, 2010. I was so scared the entire time since I had had 3 miscarriages after Sierra (who is now 8) and Nicholas (who is now 4) but with lots of prayer we made it past the scary 1st trimester. Then I started having blood pressure problems and they had talked to me about if it continues they would have to take him early. So I was on blood pressure medicine and bed rest alot during this pregnancy not only due to blood pressure but also had a hematoma behind the placenta. On Monday June 7, 2010 I had to go to l&d cause I was having contractions turns out they were being caused by my high blood pressure, we got them to stop when I laid directly on my left side. Thursday June 10, 2010 I had an appointment with a kidney specialist and I was spilling 600 mg of protein. That weekend we h a garage sale and everyone else took care of it while I was laying in the lounge chair. Come Monday June 14, 2010 I was having pain in my kidney area and so they wanted me to come in to rule out kidney infection. My mom dropped me off at l&d and they ran test but no kidney infection but my blood pressure was dangerously high. They decided to keep me and see how I was on Tuesday. Tuesday June 15, 2010 I felt absolutely horrible so they sent me to the nearby hospital with a great nicu. They immediately started me on magnisum and that shit is horrible. Remember last Thursday I was only spilling 600 mg but by Tuesday I was spilling 3,000 mg of protein. Yes you read that right 3,000. They decided to give me two steriod injections 24 hours apart and so come Thursday June 17, 2010 at 1026 Grant Nathanial was born by c-section at 27 weeks 6 days weighing in at 2 lbs 2 oz and was 14.5 inches long. It was so scary cause his heart rate went down to 0 two or three times in the delivery room. They got him stable enough to take him to the nicu. He was on the c-pap that first day.