Dear Sweet Girlies,
I miss you so much today. Carynne, I miss the way you suck in your bottom lip when you're getting ready to smile; I miss the way you hold onto your puppy's ear; I miss dancing with you when Ellen dances; I miss holding your hand while feeding you; I miss laying beside you on the floor and talking to you. Sydney, I miss the bubbles you blow; I miss the way you get so excited and start breathing hard when we're playing; I miss you 'lifting weights'; I miss smelling your stinky feet.
I miss hearing all of your machines. Just a month ago you were living without the assistance of oxygen and in such a short time we had to continually increase your liter flow. I'm sorry if we pushed it on you too much. I miss watching your Oximeters. I think I became addicted to checking your numbers...making sure your oxygen was at 100% and your heart wasn't beating too fast. I miss that stupid noisy suction machine. I know you hated it, but it helped you. They came and took all of your machines yesterday and at the time I was glad because I don't want to remember you being hooked up to machines, but today the house is too quiet. The phones have stopped ringing; the front door is locked; it's just me and your daddy left to pick up the pieces.
I was doing laundry this morning and you still had clothes in the dryer. Every piece I pulled out was the cutest thing you'd ever worn. Every piece brought me comfort and tears at the same time.
I am so lucky that I got to be your mommy, if just for a short time. Thank you so much for letting me get to know you and love you like I have never loved before. Thank you for the countless sleepless nights, the dirty diapers and the constant worry. Thank you for all of the firsts; I think my heart melted the first time I held you in my arms; the first time I saw you smile; the first time I heard you talking to each other over the monitors; the first time you wanted nobody but me.
It's hard not to be sad, but I'm really trying to be strong for you. I know that your bodies weren't meant for this world, but your souls are with us forever!
Love,
Mommy
Wednesday, February 25, 2009
Friday, February 20, 2009
Thursday, February 19, 2009
Bad Mom
So, I am a really horrible mom...pet mom that is. Poor Alfy has been in the bathroom since Friday just hanging out in his house on the floor. We had him in the family room but we moved the oxygen tanks in there so he had to vacate. I called my sister today and she is going to watch him for us until life has settled down. Actually, her girls, Amelia (3) and Sophia (2) are going to watch him. He stayed at their house for a month when the girls were first born and they would sit beside him and talk to him all day. He became even more spoiled than he already was. My mom and dad are coming to visit this afternoon and they are going to take him back to my sisters...they all live about 1.5 hours away. I feel bad because I have had him even longer than I've had Jake, but I think he understands what is going on right now.
This picture is when I was about 20 weeks pregnant with the girls. I was still trying to sport my regular sized t-shirts, but it obviously was in vain. He loved sitting on my belly because it was so warm :)
Wednesday, February 18, 2009
A Few Notes...
Yikes...sorry for the delayed posting! Things, of course, have been busy here :) On Sunday Sydney had an apnea spell which resulted in us taking her to the ER. Once we got there, the doctors did NOTHING for her, not even listen to her lungs or anything. We took her home and her heartrate hovered at 200 the rest of the day. I called our nursing agency and asked if we could get full-time nursing so our awesome caseworker came out and stayed with the girls overnight and we have had somebody here full-time since then. The problem is that we could hear her on the monitor when she started choking (choking on her own spit causes her to have these spells), but by the time we heard her she had worked herself up and wasn't able to settle down. So, now a nurse is on them the entire night to keep them suctioned just in case.
I didn't want to post anything on here about our nurses, but we have a rotation of about 6 people right now so nobody will know who I am talking about. We started with a new one today and I really really like her...very relaxed and down to earth. One of the day nurses that was here before her was replaced because she was not making me very happy. I won't go into detail, but let's just say that she gave Jake a 4-6 week timeline and I thought it was none of her damn business to be saying stuff like that. Before she had our case, she had never even heard of SMA1!
Both girls are on continuous morphine now so they pretty much sleep the entire day. They even sleep while they are eating. I am relieved because they seem comfortable and their oxygen and heartrate levels are good, but at the same time it really upsets me because I miss my babies and their little personalities. I haven't seen Carynne smile in about 4 days because even when she does wake up she is pretty drugged. This isn't how I want to remember them, but I'm trying to do what is best for them so it is a double-edged sword.
I didn't want to post anything on here about our nurses, but we have a rotation of about 6 people right now so nobody will know who I am talking about. We started with a new one today and I really really like her...very relaxed and down to earth. One of the day nurses that was here before her was replaced because she was not making me very happy. I won't go into detail, but let's just say that she gave Jake a 4-6 week timeline and I thought it was none of her damn business to be saying stuff like that. Before she had our case, she had never even heard of SMA1!
Both girls are on continuous morphine now so they pretty much sleep the entire day. They even sleep while they are eating. I am relieved because they seem comfortable and their oxygen and heartrate levels are good, but at the same time it really upsets me because I miss my babies and their little personalities. I haven't seen Carynne smile in about 4 days because even when she does wake up she is pretty drugged. This isn't how I want to remember them, but I'm trying to do what is best for them so it is a double-edged sword.
Friday, February 13, 2009
Poppy!
Poppy is my dad. I have called him Poppy since I learned how to talk and now his grandkids call him Poppy. Anyway, on Monday he went in for gall stones and they did a cat scan only to find suspected pancreatic and stomach cancer. He will go in for a biopsy on Thursday, but the doctors seemed pretty sure that it was cancer.
So, I guess the shit storm has decided to hover over my house.
My dad and I have always been very very close and talked about death extensively so we're both pretty at peace with what might happen. He told me he was going to be a chaperone for the girls...I told him it would probably be the other way around...hehehe :)
Tuesday, February 10, 2009
Tough Day
Today was such a rough day. We had appointments at 8 a.m. with pulmonology and as we were getting the girls into their carseats, Sydney's oxygen level started dropping pretty significantly. We rolled some blankets underneath her shoulderbones to keep her airway as open as possible and made it to Riley 30 minutes late. Dr. A. decided that even though the girls both have large amounts of saliva that are causing them to choke, he didn't want to prescribe an anti-secretion medicine. This was kind of hard for me because they can no longer swallow their own spit and we're having to continually suction them, which they hate.
After the appointment, I told our hospice nurse that I didn't think car seats were a very safe option for us and asked if we could get ambulance transport to and from appointments. She agreed so we were taken from Riley to C. North for monthly Synagis shots. It took forever, but we finally got them and got home. It is so much work transporting two girlies with all of their monitors, oxygen and machines. They are now on oxygen full-time and when we take them off even just to change diapers or clothes, they drop to the mid-80s range.
When we got home, Sydney had developed a bit of a fever from the shot so we gave her some Tylenol and they were both fussy for a good 3 hours. I know some moms might think 3 hours isn't that bad, but I used to be very lucky that they generally were not fussy babies so it is hard on me to hear them be so uncomfortable.
Dr. D. from developmental pediatrics called a bit ago to see if we would be interested in admitting the girls to Riley full-time. I'm just not sure this is the best option for us...health-wise, I don't know that it would make much of a difference for the girls. They have pretty much all of the machinery they need here. Also, I think it would definitely take a toll on them and us physically and emotionally.
Jake and I have started to notice significant deterioration in both girlies. Just 3 weeks ago when Sydney was in the hospital and on the O2 monitors, she was able to hold steady at 96-100 percent oxygen saturation, and now she can barely stay in the 90s. I'm just so sad that it is all happening so quickly...much more quickly than I expected. It's also sad because the girls are so much more tired because their bodies are working so hard. Their average heartrate while awake is between 160 and 200...it is taking such a toll on them.
After the appointment, I told our hospice nurse that I didn't think car seats were a very safe option for us and asked if we could get ambulance transport to and from appointments. She agreed so we were taken from Riley to C. North for monthly Synagis shots. It took forever, but we finally got them and got home. It is so much work transporting two girlies with all of their monitors, oxygen and machines. They are now on oxygen full-time and when we take them off even just to change diapers or clothes, they drop to the mid-80s range.
When we got home, Sydney had developed a bit of a fever from the shot so we gave her some Tylenol and they were both fussy for a good 3 hours. I know some moms might think 3 hours isn't that bad, but I used to be very lucky that they generally were not fussy babies so it is hard on me to hear them be so uncomfortable.
Dr. D. from developmental pediatrics called a bit ago to see if we would be interested in admitting the girls to Riley full-time. I'm just not sure this is the best option for us...health-wise, I don't know that it would make much of a difference for the girls. They have pretty much all of the machinery they need here. Also, I think it would definitely take a toll on them and us physically and emotionally.
Jake and I have started to notice significant deterioration in both girlies. Just 3 weeks ago when Sydney was in the hospital and on the O2 monitors, she was able to hold steady at 96-100 percent oxygen saturation, and now she can barely stay in the 90s. I'm just so sad that it is all happening so quickly...much more quickly than I expected. It's also sad because the girls are so much more tired because their bodies are working so hard. Their average heartrate while awake is between 160 and 200...it is taking such a toll on them.
Friday, February 6, 2009
Family Picture Day
Yesterday we braved the cold, ditched the tubes and took the girls out to get family pictures. Things didn't go so well in the beginning...Carynne was pretty upset that we had disturbed her slumber. But, after a while she was very willing to give smiles. I can't figure out how to get the text at the top of the page so you'll just have to guess which girl is which, but I'll give you a hint...Sydney had a bat in her cave that we didn't notice until the end of the session :)
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