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THE SHERIFF TWINS
Sheriff |
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UPDATE...
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Apr 22, 2008 09:25pm (EST)
I just got back from a good visit with Matthew. His Auntie AB came along and he loved seeing her. She is a nurse so she changed his bed- it is nice and cozy for him now. I am sure he appreciated it!
Matthew had a few apnea spells today but they just required a few pats on the "hiney" as Charlie would call it. I am so glad that he had a relatively good day today. They are watching him closely and they think the caffeine will help- he just got the increased dosage tonight. I am glad the doctors can remain so calm and collected- it is hard to do the same as a parent. I trust their judgement- they see this a lot, it is just sometimes hard to "ride it out" in the passenger seat.
They gave Matthew a bottle for the first time today. He only took 5 cc's but it's a start! They said I can give him one tomorrow if all goes well.
Please coninue to keep our little guy in your prayers. We definitely feel their power.
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Posted by Sheriff | Comments: (5) | Permalink
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SUPPORT
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Apr 22, 2008 12:14pm (EST)
Thanks for all of the support. They are trying to have him "ride it out on NC." I spoke with the doctor and was not thrilled by our conversation. Not because I don't trust their judgement, but more so because it is just scary stuff. He is increasing his caffeine dose to see if the extra stimulant will help with the apnea. He didn't seem too concerned with Matthew having to be "bagged" last night. I, of course, have a tougher time with this.
Matthew hasn't had a "major" episode since last night. The crazy thing is that his stats are quite high on this high flow cannula- he just crashes out of nowhere.
Luckily, one of my favorite nurses (she helped us a lot with Michael) was there and all it took was her saying, "Are you okay?" I, of course, lost it. I have been strong, but the thought of him in distress is very hard. She is a great advocate for us and is going to keep a close eye on the situation and talk to the doctors for us. She thought the breaks from the CPap were a great idea if he seems to be having a rough go on the cannula. Thank goodness for sympathetic and pro-active nurses!
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Posted by Sheriff | Comments: (4) | Permalink
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UGH...
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Apr 21, 2008 09:21pm (EST)
Matthew had a great first day on the cannula and, of course, when I got there he crashed. I was in the bathroom for most of it, but came at the tail end right after he started breathing again. The nurses acted like it is all just part of it and simply coincidental that it has happened three Monday nights in a row, but to me it is far from coincidence. They have tried the cannula for the past three Mondays after a week on CPap. He does well on the cannula for about 10 hours and then he gives out. A nurse this morning suggested that we do 4 hours on CPap and then four on cannula...I thought that was a great idea, but the doctor wasn't necessarily a fan. I am praying he does well tonight. I am going to push for that option if it looks like he is at all struggling. Please keep him in your prayers! He is up to 26 cc's of milk every three hours...aside from the breathing issues (which are major, of course), he is doing really well and is just as cute as can be!
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Posted by Sheriff | Comments: (6) | Permalink
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A NEW HOUSE...
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Apr 19, 2008 04:12pm (EST)
Jason and I just got back from the NICU. Matthew is doing well...he slept most of the day. Jason held him for about an hour and I helped the nurse set up a new isolette for him. They change his "house" once a week. It feels good to help care for him even if it is as simple as making his bed or posting photos on his new incubator. He has pictures of Charlie and Michael looking over him. Jason and I are giving him his first "real bath" tomorrow night. They said he'll love it. I know we will, too.
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Posted by Sheriff | Comments: (5) | Permalink
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EYES WIDE OPEN
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Apr 18, 2008 09:16pm (EST)
Matthew is just getting stronger by the day. He is still on CPap and his feedings have remained the same --24cc's every 3 hours. He will get weighed again on Sunday- I'm hoping he hits the 3 lb mark this week! I just came back from seeing him- he kept his little eyes open the whole time and just checked everything out. He's a little cutie pie.
I was fortunate enough to have four very good friends drive from NY and MD to come and see me today for the day. We all taught together in MD and have stayed pals for the past several years. It was great to cry and laugh with good friends. Two of them are pregnant now and are due this summer. It is brave to come hang out with a friend who has lost a child and has one in the NICU when you are carrying a little one yourself. They put themselves aside and came to support me- it meant a lot. It has been a long time since I was able to think about anything but my boys- all four of them! It's important for a mom to recharge her batteries in the comfort of loving friends. I feel very lucky to have such a supportive group of people helping us through these tough times.
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Posted by Sheriff | Comments: (2) | Permalink
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EVERY OUNCE COUNTS...
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Apr 16, 2008 10:24pm (EST)
It's weigh-in day...Matthew is 2 lbs, 9 oz! I think he'll hit 3 lbs by next week which means he can finally wear clothes!
I had a great visit with the little guy tonight. I helped weigh him and then I held him for an hour or so. He was very cooperative. He likes hanging out with his Mama. Tonight was the first time I saw him in his birthday suit- he is looking more and more like a little baby instead of a wrinkly, old man. He is adorable.
It's hard to believe but Matthew is 32 weeks today...they would have delivered the boys this week if they had not come so early. Babies in the same sac are delivered at this gestational age. This was our goal....32 weeks- they came at 26 weeks, 4 days.
There are new goals now- gaining weight, learning to breathe correctly.... goals I never really thought about until I became a parent to babies in the NICU.
A young couple came in to tour the NICU tonight...the wife is very pregnant and is most likely going to deliver any day. As they toured, they asked about the size of the baby next to Matthew; they wanted to know what to expect when their little one arrives, etc. I wanted to hug them both and tell them they'd be okay and so would their baby. The reality is, the whole journey is so unpredictable- there are so many twists and turns and there is no rule book. We learned this through the loss of our sweet Michael. The mother looked so frightened and overwhelmed- it was wild-I could see myself in her expression. I know I looked the same way when I entered the NICU for the first time. Thankfully after five and a half weeks, I have grown more accustomed to the beeps, the smells, the acronyms the nurses use to describe conditions and types of medicine. I can read the monitors. I know when the water is low in the incubators, when Matthew's feed is done, when his mask has a leak....however, no matter how much I "know", I am never fully settled. Nothing can prepare you for the experience of having a one and a half pound baby. I must say throughout the scary world of not knowing what will happen next, Jason and I force ourselves to take a deep breath and count that day's blessings.
For today it is a few ounces. At this point in the process, every ounce counts. The person who coined the phrase, "It doesn't make an ounce of a difference," was clearly never a NICU parent.
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Posted by Sheriff | Comments: (5) | Permalink
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BACK TO THE CPAP
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Apr 15, 2008 09:55am (EST)
Matthew had to move back to the CPap. He was doing quite well until his Mama arrived and then he decided to have a VERY long A/B spell that required recusitiation. No parent should have to watch and wait for their child to "come up." I was thankful when they opted to give him another week to mature on the CPap. He just was not ready yet. Please keep Matthew in your prayers. We hope that he has a very restful and uneventful week where he can grow strong. They'll attempt the cannula again on Monday....we are in no hurry.
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Posted by Sheriff | Comments: (5) | Permalink
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MASTER PLAN
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Apr 14, 2008 11:39am (EST)
Matthew went back to the nasal canula today...let's keep our fingers crossed!
I heard from one of the NICU doctors in Baltimore today who helped us with the boys' care in the initial days after they were born. He helped clarify a few things about TTTS for me. They deal with many TTTS babies in their NICU. I always thought the donor was "the weaker twin." Michael was our donor and Matthew was our recipient. He told me, however, that they often lose the recipient after birth because of the stress on his heart. The donor's fate is predetermined in utero. Whether or not he will survive is based on organ development and function.
This fact really made our boys' story even more empowering to me. Matthew's heart was not strained nearly as bad as it could have been because Michael fought so hard and created fluid for those several weeks. The doctors had never seen a donor go from having no fluid to creating so much fluid without a medical intervention. This definitely helped Matthew- he was a much stronger recipient because of his brother's hard work.
My whole pregnancy felt like a horrible medical show. Instead of decorating a nursery, I had 2-3 sonograms a week, was put on bed rest and was told about odds of survival. It was only after their birth and Michael's passing that I can see the beauty in the miracle that took place. Life is so fragile, and I am more sure than ever that God has a master plan for each of us. It is so hard to see what it is at times, but this information really made us look at things from a different perspective.
We mourn the loss of Michael every day and we only wish we could have gotten to know him better. We are so thankful to him for his strength, perseverance and love. He truly changed our lives and from the loving responses we have received, he changed the lives of many others outside of our family as well. My sister pondered the question in her eulogy, “Can you change the world in 23 days?” Before this, I would have thought twice...not anymore.
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Posted by Sheriff | Comments: (4) | Permalink
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