Monday, December 29, 2008
I don't really have much of an update, which is a good thing. Abby has been breathing really well on the cannula so they tried her off of it on Saturday, but she didn't as well without so they put her back on on Sunday. She's breathing room air, which means she's doing most of the work, but the stimulation of the cannula seems to help remind her to breath. All preemies struggle with apnea, the Dr's tell us it's a maturity thing and she'll grow out of it before she goes home. Other than that she's doing fine. We're still breast feedings twice a day, when Abby was off the cannula she struggled but since she's been back on she's been feeding great. They've started dressing her since she can hold her own temp so we brought in some clothes. Gowns with elastic on the bottom are the easiest so all the cords can come out the bottom. We brought in some preemie ones and today she was dressed in one when I went to see her. Matt and I didn't realize that the gown had a lamb on it, so I took some pics for the Lamb family, it's kind of hard to see because I couldn't get her to hold still when I was holding her so I had to take one with her in the issolette. She looks pretty darn cute! (she catches flies a lot when she sleeps!)

Saturday, December 27, 2008
Hi to everyone! I hope you all had a nice holiday and Santa was good to everyone. Abby is only 3 weeks-well she's about 3 1/4, but she already is spoiled rotten. She got so many wonderful gifts-thanks to everyone!!! Ok, so here is the update. Abby is doing very well being back at Chester County. When we were at the hospital on Tuesday, we were talking to the physical therapist who saw how good Abby does with her pacifier, and she suggested trying to breast feed, or at least put Abby there and see what happens. It's very hard for preemies to eat by mouth because they have to suck, swallow and breath all at the same time. Usually it takes a while to get them to do it. Well we tried breast feeding and Abby did so well. She latched right on and went to town! So now we try breast or bottle once a shift to get her used to eating by mouth. I go in to see her in the am and once at night to breast feed and the rest of the time they try the bottle-she's not thrilled with the bottle. She is still on the feeding tube because sometimes she just isn't into either. It's very exciting because she gets more from me than she would from the feeding tube so hopefully we can fatten her up!
She is also doing very well on her cannula so they've been weening the oxygen down and might take her off today or tomorrow depending on how she does. Once they take her off the cannula they can take the feeding tube out her mouth and put in her nose which will make it easier to feed her by mouth. Once she is on regular feeds we can loose the feeding tube also, we just have to wait and see how she does.
Yesterday they finally gave Abby her blood transfusion. They've been talking about doing it for a few weeks and they decided it was time. They said she isn't gaining weight fast enough and isn't making enough blood cells on her own. So hopefully now that she has daddy's strong blood-he claims he's healthy as a horse-she'll be on the right track.
Here are some pictures of Abby during the holidays-we just had to dress her up!
She's in a preemie size here and it's still huge on her!
Her and daddy in their xmas colors.....
She is also doing very well on her cannula so they've been weening the oxygen down and might take her off today or tomorrow depending on how she does. Once they take her off the cannula they can take the feeding tube out her mouth and put in her nose which will make it easier to feed her by mouth. Once she is on regular feeds we can loose the feeding tube also, we just have to wait and see how she does.
Yesterday they finally gave Abby her blood transfusion. They've been talking about doing it for a few weeks and they decided it was time. They said she isn't gaining weight fast enough and isn't making enough blood cells on her own. So hopefully now that she has daddy's strong blood-he claims he's healthy as a horse-she'll be on the right track.
Here are some pictures of Abby during the holidays-we just had to dress her up!
She's in a preemie size here and it's still huge on her!
Sunday, December 21, 2008
Hello to everyone. Sorry it's been a while since a new post-it's been a crazy couple of days. I know a lot of you have heard bits and pieces of whats been going on and want to know the whole story, so here it is...So when it was discovered that Abby had a UTI last week, they did a routine ultrasound to make sure her kidneys were functioning correctly. On the ultrasound, the Dr's discovered something, they weren't sure what it was, but they knew something was there that shouldn't be. First they said it could be a cyst or her intestines could have doubled, but whatever it was wasn't causing Abby any problems. So Chester County sent the image to CHOP (children's hospital) for a second opinion. Because Abby's so small it was hard to see what the ultrasound was showing. So on Thursday, CHOP decided Abby needed to be transfered there for further testing that Chester County wasn't capable of. So on Thursday around dinner time, a transport team came to get Abby and strapped her in to her mobile issolete and took off for her ride to the big city.
We followed her down to CHOP and have spent the last 5 days pretty much living there, impatiently awaiting answers. On Friday, they did another ultrasound, followed by an MRI. Besides all this testing, Abby has been doing really well. She's still eating and sleeping and doing everything she should. Whatever the problem is doesn't seem to being affecting her. The nurse also told us that about a half hour before it's feeding time, Abby wakes up and gets a little cranky. The nurse told us then when preemies go home, they have a hard time eating because they have to learn to be hungry. In the hospital they get fed every three hours-right now with a feeding tube-and they don't really experience hunger. But Abby knows when it's time to eat and wakes herself up, so that's definitely a good thing--just like mommy and daddy, she's a good eater! Anyway, Saturday we finally got the results from her testing back. Abby has a growth on her liver. The growth is benign. Jess looked it up and it's basically an overgrowth of the organ containing tissue and cells. They did further blood tests on Sunday and Monday confirming it is benign; it can however turn malignant in the future, but Abby will be monitored closely.
On Saturday, the surgical team looked at Abby and her MRI and decided to just monitor her for now. The growth is large and it's possible it will get bigger so it will need to be removed. As of right now, it's not causing her any problems, and the surgery would be fairly complicated, so that's why they want to wait and just monitor her progress. So over the next six weeks, they will be checking to make sure her liver is functioning properly, and by measuring her belly that the growth isn't getting bigger. On Monday, Abby got transferred back to Chester County for the duration of her stay in the hospital. We are happy to have her back at Chester County-CHOP was a little overwhelming.
So basically, over the next six weeks, Abby will continue to grow and eat and do everything she is supposed to do. The Dr's at Chester County will be monitoring her and conferencing with CHOP. In six weeks she'll likely be sent home, then she'll come to CHOP for an appointment with the surgeon and liver specialist and they'll decide what to do next. They may say that the growth needs to come out now, and they might say it can wait another six weeks. So we just have to wait and see. After the surgery she'll be back in the NICU at CHOP while she is recovering.
Needless to say it's been pretty crazy for us the past couple of days. Thank you to everyone for their support and for offering us a place to stay, we really appreciate it!
We followed her down to CHOP and have spent the last 5 days pretty much living there, impatiently awaiting answers. On Friday, they did another ultrasound, followed by an MRI. Besides all this testing, Abby has been doing really well. She's still eating and sleeping and doing everything she should. Whatever the problem is doesn't seem to being affecting her. The nurse also told us that about a half hour before it's feeding time, Abby wakes up and gets a little cranky. The nurse told us then when preemies go home, they have a hard time eating because they have to learn to be hungry. In the hospital they get fed every three hours-right now with a feeding tube-and they don't really experience hunger. But Abby knows when it's time to eat and wakes herself up, so that's definitely a good thing--just like mommy and daddy, she's a good eater! Anyway, Saturday we finally got the results from her testing back. Abby has a growth on her liver. The growth is benign. Jess looked it up and it's basically an overgrowth of the organ containing tissue and cells. They did further blood tests on Sunday and Monday confirming it is benign; it can however turn malignant in the future, but Abby will be monitored closely.
On Saturday, the surgical team looked at Abby and her MRI and decided to just monitor her for now. The growth is large and it's possible it will get bigger so it will need to be removed. As of right now, it's not causing her any problems, and the surgery would be fairly complicated, so that's why they want to wait and just monitor her progress. So over the next six weeks, they will be checking to make sure her liver is functioning properly, and by measuring her belly that the growth isn't getting bigger. On Monday, Abby got transferred back to Chester County for the duration of her stay in the hospital. We are happy to have her back at Chester County-CHOP was a little overwhelming.
So basically, over the next six weeks, Abby will continue to grow and eat and do everything she is supposed to do. The Dr's at Chester County will be monitoring her and conferencing with CHOP. In six weeks she'll likely be sent home, then she'll come to CHOP for an appointment with the surgeon and liver specialist and they'll decide what to do next. They may say that the growth needs to come out now, and they might say it can wait another six weeks. So we just have to wait and see. After the surgery she'll be back in the NICU at CHOP while she is recovering.
Needless to say it's been pretty crazy for us the past couple of days. Thank you to everyone for their support and for offering us a place to stay, we really appreciate it!
Tuesday, December 16, 2008
I don't really have much of an update, no news is for sure good news. We went to see Abby today and were excited to see she's off the CPAP-at least for now. They took her off today and put her on a nasal cannula to see how she does. She seemed to be breathing a lot easier and as her nurse put it 'was a total rock star' today. They may alternate her between the CPAP and cannula until they can put her on the cannula for good but if she does well they'll keep her on the cannula. Abby's obviously ready to be rid of it all because at one point this morning she pulled the cannula off herself. I'd be sick of it all too! I'm just happy we got to hold her and actually see her face for a while today. Here are some pics hot off the presses!
We kept trying to get a picture with her eyes open but as soon as the flash started she closed her eyes and scrunched her face, she definitely didn't like the light! But here is Miss Abby eye balling us....
Monday, December 15, 2008
So we finally got the test results back and Abby has a urinary tract infection. I'm so thankful that it isn't meningitis! Hopefully it isn't too uncomfortable for her, because uti's are no fun! Anyway, she's been on antibiotic since Friday and she'll continue for seven days. They'll do an ultrasound of her belly today to make sure her kidneys are functioning OK and that's it. She's been doing really well otherwise. They have upped her feeds to almost a full ounce and she takes all of it. Yesterday they started fortifying her feeds-I'm not exactaly sure what they put in it but it's basically added calories. Her normal feeds were 20 calories, and now they are 24 and then up to 26. The nurse said that it's harder to digest but she's been taking them just fine.
On Friday the Dr told us Abby will probably need a blood transfusion in the next week or two because they have been taking so much blood for tests and she is becoming anemic. So Matt went over the weekend and donated to be her direct donor. He claims she just needs some of his strong blood and it'll cure everything. I don't how but the man is never sick! So the transfusion will probably be next week. That's Abby's update for now. Thanks to everyone for the nice comments, we thinks she's pretty darn cute too!
On Friday the Dr told us Abby will probably need a blood transfusion in the next week or two because they have been taking so much blood for tests and she is becoming anemic. So Matt went over the weekend and donated to be her direct donor. He claims she just needs some of his strong blood and it'll cure everything. I don't how but the man is never sick! So the transfusion will probably be next week. That's Abby's update for now. Thanks to everyone for the nice comments, we thinks she's pretty darn cute too!
Saturday, December 13, 2008
Sorry to everyone for not updating sooner. I didn't realize how fast time was going by with out an update. Abby's had an ok week. The Dr's told us there would be lots good days and plenty of bad days too, so be prepared for the ups and downs. Well she was right! On Thursday into Friday, Abby's nurses felt she was acting too tired and not responsive enough when they were in there messing with her. They think she has some sort of infection, so they started doing lots of tests. Unfortunately, they thought there was a chance she could have meningitis, so they had to give her a spinal tap-thankfully we weren't there to witness that! They sent off all her labs and immediately started her on antibiotics hoping to stop the infection before it could really get started. As of Friday am, Abby was already acting better. The Dr thinks she was much more active and awake before the antibiotic even had a chance to kick in, which is definitely a good thing. Abby's Dr also thinks that Abby isn't acting like a baby with meningitis. At this point, her Dr thinks its just an infection, it could be anything from a bladder infection to a cold. She's been getting better, she's still eating a ton-which is a really good sign-and she's been awake and active. So for now we just have to be patient and wait for the labs to come back. They meningitis takes at least 48 hours because they have to grow the culture, so we should know by tomorrow. Until then, they just keep her on her antibiotics and monitor her and hope she gets better. We went for a visit on Friday night, and we got to hold her-which we don't get to do enough-so it was good for us and I'm sure good for Abby. They also weighed her and she's 3.3 lbs, she's really packing em on!
That's a good looking proud papa!
Abby was a little upset getting weighed, but we like to see her like that too! She was flailing all over the place....
And no-she does not have the Lamb nose-the prongs for the CPAP stretch her nostrils-but we're assured it's only temporary! The Lamb(my mom's maiden name) nose is a lovely trait passed down through our family-it's basically big nostrils that get bigger as we age. When someone has a baby in our family, after the sex, weight and name are announced, the next question is...Does she have the Lamb nose!?So No she doesn't! but she'd be cute anyway!
That's a good looking proud papa!
Wednesday, December 10, 2008
Good News
I can't figure out how to get the pics at the end of the post..so here they are!
Here is Abby dead asleep last night, the stupid CPAP is on and you can barely see her cute face, but shes pretty darn cumfy!
Here is Abby dead asleep last night, the stupid CPAP is on and you can barely see her cute face, but shes pretty darn cumfy!
This is her holding daddy's giant finger...
This is her still with the vent...she doesn't have her eyes open too often-so sorry about the flash!
Here is what Abby looks like most of the time!!! Sound asleep :)

We finally heard from the dr last night that the valve/duct is officially closed! It's such a relief! Now we can concentrate on her staying healthy and getting nice and fat. Since then they have upped her feeds and she's much happier. Yesterday her nurse said she was a wild woman, probably because she was hungry, so last night when we saw her she was dead asleep. We don't get to see her like that to often because they're always messing with her-feeding her, making sure she's cumfy- but last night she was out. Today, we met with a physical therapist who tracks her progress. They teach Abby how to get used to the senses of the outside world, especially touch and sound. It's stressful for them because its quite in mommy's belly, so they help the babies get used to it and teach them how to soothe themselves. They also work on sucking and doing some excersized with their arms and legs. So I'm sure she'll be equally as tired tonight! Here a few pics of her along the way...
Tuesday, December 9, 2008
Abby
Now everyone knows how she arrived early. Here's an update on whats going on with Abby. Like I said, until delivery she was doing fine-a normal, healthy baby. But she was eight weeks early. There are lots of things to worry about now that she's here. Mainly her lungs and heart developing. There is a valve leading into babies hearts that when they are full term they are able to close themselves. In Abby's case, she was born with it open and hasn't been able to close it herself. Between Saturday and Sunday, she was given three doses of medicine to help close it for her. Sometimes it takes more than one round of treatment to close the valve. She had an ecco yesterday and we are waiting to hear if the valve is closed. If it's still open they will start another round of treatment. Other than the valve she is doing really well. She has no sign of infection, which is also a common worry with a preemie. She was on an antibiotic over the weekend but her counts are up and the Dr thinks its related to my condition and she's no longer on the med. She has a feeding tube in, so shes getting very small amounts of feeds along with IV fluid and has been handling them really well. They weighed her last night and shes an even 3lbs- her weight will fluctuate but we were happy to hear that.
Until yesterday she was on a ventilator because when she was born her lungs were stiff and the valve opening, she needed help to breathe. On Sunday the Dr's were talking about taking her off the vent because she was breathing over it and getting tired of having it in. On Monday, the tube was a little high and Abby pulled it right out! I guess she had enough of it. Now she has a CPAP. This goes over her nose and straps over her head,I hate it because I can hardly see her face! It provides constant oxygen flow to keep her lungs inflated and keep them strong.
Abby is also a little jaundice so she is under the lights. She has to wear little sunglasses and again, we can't really see her face but they take them off so we can visit.
Basically, she just hangs out all day and we visit as much as we can. We've gotten to hold her a few times and I got to change her on Sunday. She has the cutest, tiniest butt I've ever seen! Now that she's off the vent, we got to hear her cry for the first time-it was a wonderful sound! I might not be saying that six months from now, but it was really good to hear it!
They told us to expect that Abby will be in the NICU until her due date, which was Feb 3, but she could certainly come home sooner. She gets over little hurdles each day, and we're keeping it together as much as we can. We'll post updates as we get them, it'll definitely give me something to do since I'm home bound for a while.
Abigail Grace Long
As most of you know, Abby came into the world a little early. In case some of you aren't sure exactly what happened, I'll give you the short version-well maybe the long version! Basically, I woke up during the night, Sunday into Monday, with chest pain. I felt like I couldn't get a full breath in, and something just didn't feel right. So I told Matt we needed to go the Dr or the hospital or something, at this point I wasn't sure how serious it was but I knew I needed to see someone. Eventually we get to the ER. They immediately take blood, and blood pressure and start ordering tests. The Dr's at this point think I could have a blood clot in my leg that traveled up to my lung so they start a series of tests. I have x-rays, ultrasounds, and lots of waiting. The whole time my blood pressure is through the roof and I'm extremely swollen. To go back a little, I went to the Dr the Monday before Thanksgiving, and my blood pressure was high, and I was swollen but they didn't' seem too worried.
So after a long day in the ER all the tests come back normal. So the last thing they have me do is pee in a cup and find that there is protein in my urine which means my kidneys/liver could be failing. So they decide to send me up to the maternity ward for further testing. At this point, Matt and I assume I'm getting admitted and I'm going to be put on bed rest and that's all we think. He was teasing me all day that I better get used to being in bed because that was where I was going to spend the rest of the pregnancy! The whole time I was in the ER I could feel the baby moving and her heart rate was fine, so we were more worried that something was wrong with me.
It's now in the late afternoon and the maternity nurses have me on lots of monitors and the baby on them as well. They order some more blood. The OB comes in and says there is a possibility I could have to deliver early, so we think early as in a few weeks. They give me a steroid for the baby's lungs in case it has to be really early. Within a half hour, they get my labs back, everything has taken a turn for the worse, and they tell me we're delivering the baby in 15 minutes. Needless to say were really scared! We had just called out parents to tell them I was getting admitted, then we had to call them back and tell them the baby was coming! Because all my counts were so low, they had to put me under and Matt wasn't allowed in the room while I had my c-section. It was so scary going into the OR by myself-but the Dr's were so nice and the drugs they gave me calmed me down. So Matt had to wait with the rest of the family to see both myself and Abby.
So after and extremely long and very scary day, Abigail Grace Long came into the world at 746 pm on Monday Dec 1st. She weighed 2lbs 14oz and was 15inches long. We found out after that I had HELLP syndrome, which is basically high blood pressure, liver shuts down, and low platelets. They don't know what causes it, but the only option was to deliver. Up to delivery Abby was doing just fine-so was perfectly healthy. Abby went straight to the NICU and I stayed in the hospital until Friday. I was happy to come home but a little sad to leave Abby-even though we know she's where she's supposed to be. So there is our delivery story-sorry it's kinda long! I'll update you also on Abby.
We will be putting lots of pictures up of Abby, but just to warn everyone, she is hooked up to lots of wires and has lots of tubes and iv's, so be prepared.
So after a long day in the ER all the tests come back normal. So the last thing they have me do is pee in a cup and find that there is protein in my urine which means my kidneys/liver could be failing. So they decide to send me up to the maternity ward for further testing. At this point, Matt and I assume I'm getting admitted and I'm going to be put on bed rest and that's all we think. He was teasing me all day that I better get used to being in bed because that was where I was going to spend the rest of the pregnancy! The whole time I was in the ER I could feel the baby moving and her heart rate was fine, so we were more worried that something was wrong with me.
It's now in the late afternoon and the maternity nurses have me on lots of monitors and the baby on them as well. They order some more blood. The OB comes in and says there is a possibility I could have to deliver early, so we think early as in a few weeks. They give me a steroid for the baby's lungs in case it has to be really early. Within a half hour, they get my labs back, everything has taken a turn for the worse, and they tell me we're delivering the baby in 15 minutes. Needless to say were really scared! We had just called out parents to tell them I was getting admitted, then we had to call them back and tell them the baby was coming! Because all my counts were so low, they had to put me under and Matt wasn't allowed in the room while I had my c-section. It was so scary going into the OR by myself-but the Dr's were so nice and the drugs they gave me calmed me down. So Matt had to wait with the rest of the family to see both myself and Abby.
So after and extremely long and very scary day, Abigail Grace Long came into the world at 746 pm on Monday Dec 1st. She weighed 2lbs 14oz and was 15inches long. We found out after that I had HELLP syndrome, which is basically high blood pressure, liver shuts down, and low platelets. They don't know what causes it, but the only option was to deliver. Up to delivery Abby was doing just fine-so was perfectly healthy. Abby went straight to the NICU and I stayed in the hospital until Friday. I was happy to come home but a little sad to leave Abby-even though we know she's where she's supposed to be. So there is our delivery story-sorry it's kinda long! I'll update you also on Abby.
We will be putting lots of pictures up of Abby, but just to warn everyone, she is hooked up to lots of wires and has lots of tubes and iv's, so be prepared.
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