April 10


Spoke with Pediatric Cardiologist and he said that Claire's heart defect, Ventricular Septal Defect (VSD) is fairly 'insignificant' at this time and that we can schedule another visit in four months to look at it again. It is a common defect in Trisomy children as well as in 'normal' children and should not be of concern since it is not usually fatal. We will get the exact measurements from him and update the page with those. We will also set up an appt to see the geneticist at the children's hospital in Gainesville.
She is drinking about 70 cc's and about 5 hours apart.
** click on this image for larger pix

April 9


We went to the hospital today to get Claire's heart looked over. She did very well, except for pushing the tech's hand out of the way a lot... eventually she had to have her hand held. The tech said that her heart has a small hole in it, about 1/8th inch big, and another one at the bottom of the heart. The hole at the bottom was small also - maybe 1/16th inch, and he said it wasn't a cause for alarm. With this type of diagnosis, there are usually two holes seen together, and like the dr had said, they will likely close on their own. So perhaps this is one more test Claire has passed, but we are awaiting the dr's diagnosis to be certain.
We stopped by the OB office on our way out to say 'hi' to the midwife who delivered Claire, she is so sweet. She is also Claire's Godmother!

April 8
4 weeks old

Claire is averaging about 50 cc's (that's just under 2 oz) during a most of her feedings - still about 3-5 hours apart. We've been letting her tell us when she's hungry, since her weight has been so good lately. She gets the hiccups about 2-3 times a day... they used to get her soooo mad, but she is getting used to them. Claire is such a good baby.
Pinch us! We can't believe she is still here - and she is such a blast!

April 7

Pediatric Cardiologist appt. at 11:00 am. Dr believes Claire may have a hole in her heart causing the murmur. We will go for a test at the hospital on Wednesday (April 9), and the results should tell us if there is a hole and if so, how big it is. Dr says that it is more likely a small hole (which could close up without surgery), since large ones are not so common. He also suggested going to Gainesville to talk to a geneticist who can give us a path to follow regarding additional testing and therapy Claire may need. We will likely set up an appt soon to go to see one. Claire was weighed and gained another 4 oz. She now weighs 4 lbs and 12 oz! I guess we should be hitting that 5 lb mark soon!
We had family and friends visit this weekend... what a blast! It is great that so many people have been able to visit Claire and meet her.

April 3

Claire was very congested last night and couldn't drink well. We put on the humidifier and she slept in her carseat (to keep her head up high so it could drain) and this morning she is back to her old self - drinking just fine, and sleeping a lot.

April 2

Pediatrician appt. Claire gained 4 1/2 more oz!! She now weighs 4lbs and 8 oz. She even looks a little bit 'chubbier'. Needless to say, the staff at the dr office was very impressed with how well she is doing. We set up an appt to look at her heart on Monday, April 7th.

April 1
3 weeks old

Claire is up to 60 cc's (that's 2 oz!) during a *most of her feedings. Now about 4-5 hours apart.

March 27

Claire is up to 60 cc's (that's 2 oz!) during a *few of her feedings. Now about 4 hours apart. She is still using cleft palate bottle and nipple, so she doesn't have to suck as hard. We aren't 'squirting' the milk into her mouth anymore, since she is drinking so well on her own now.

March 26  

Pediatrician appt. Claire gained 2 1/2 more oz!! She now weighs 4lbs and 3 1/2 oz. Dr said Claire is no longer considered 'failing to thrive'.
Hearing screening by the NICU nurse, she didn't pass, but we were told that it didn't mean she couldn't hear, only that we should go for more testing at the Audiology drs. Also told a typical appt was 2 hours long, so we may pursue that at another time.
Asked for a referral to see Pediatric Cardiologist to see the heart (ultrasound/EKG) and get an idea of what shape it is in, though we don't intend to do any surgery, more information at this time seems like it would be a good thing.

** click on this image for larger pix

March 25
2 weeks old

Claire is 2 weeks old today!!

March 24  

Claire is now:
Sucking and swallowing on her own (breathing too!).
Found her fingers to suck on.
Crying when hungry.
Using a pacifier and holding it in by putting her hand in front of the pacifier (sometimes).
Gaining good eye control (except when very tired and going to sleep).
Swatting away with her hands, like when we try to put on her bib for a feeding, or changing her diaper.

March 19
9 days old

Pediatrician appt. Claire gained 2 oz!! She weighs 4 lbs and 1 oz. Dr pointed out subtle signs of trisomy in Claire's appearance. Suggested we think about immunizations for her. Set up appt for next week for weighing, and another for the following week. Also mentioned we could do a non-invasive scans on her brain for activity and an u/s on her heart. We may consider it at some point in the future.

March 18
1 weeks old

Claire is 1 weeks old today!!

March 16
5 days old

Claire is actually sucking and swallowing. She is good for about 5-8 gulps and stops to rest. Seems to be breathing through it well, no 'dusty' color around the mouth showing loss of breath.
Claire is not on any monitors, not being tube fed or on any medication, she is just being a typical baby.

March 15
4 days old

Claire is up to 40 and 50 cc's during a few of her feedings. Still 3 hours apart.

March 14
3 days old

Pediatrician appt. Claire lost only 3 oz since birth. Dr said she had good reflexes and is drinking enough to sustain herself, but not to grow. Dr also noticed severe heart murmur.
Anyone who wants to meet her was welcome to come by our home, provided they weren't sick.
At her 1pm feeding, Claire drank 25 cc's - her daddy fed her.   :o) That's a Claire record!

March 13
2 days old
  Baby Claire is failing to thrive. She isn't eating well, and unable to suck, swallow and breathe at the same time. Her average intake per 3 hour feeding is 1/2 oz. (15cc's). She needs to be at one oz (30cc's) at least. We decided to bring her home and keep her comfortable and enjoy her with family and friends. We arranged for a hospice nurse to stop by frequently. Life expectancy is merely days.
She is eating from a bottle designed for cleft palate babies, though she doesn't have a cleft palate, the bottle allows us to 'squirt' some milk into her mouth so she can swallow it. Also the nipple on the bottle is a cross cut nipple, so the opening is wider.
March 12
1 day old
  Baby Claire had a few apnea spells, so nurses put her on oxygen. Eventually, she was doing well enough to be taken off oxygen.
March 11
  Baby Claire was born at 11:29am.
4 lbs, 2oz. 16 inches.
Delivery went smoothly. Claire came out breech and her amniotic sack fully intact (mom didn't push during labor) until the nurse broke it - as her head was being delivered. The sack allowed full dilation before delivery - a true miracle for Claire. She had meconium (the contents of the baby's bowel) in the fluid, but since she was breech, it hadn't been by her face, so she didn't aspirate it.
Once she was delivered, well, she had no heartbeat and wasn't breathing, but was revived immediately. Pictures were taken. Kids got to hold their little sister, and she was Christened. Our wonderful midwife offered to be her Godmother! Her Uncle Tom offered to be her Godfather too!
Go To Prenatal Calendar