Our daughter, Sydney,was born at 26 weeks gestation weighing 1lb 10oz at birth and was 14 inches long. This is her story complete with some random ramblings from me. The images/posts on this site are the sole property of the author. They may NOT be used in any way without written permission from the author.
Friday, November 30, 2007
31 Weeks
Your love, O LORD, reaches to the heavens, your faithfulness to the skies. - Psalm 36:5
Thursday, November 29, 2007
A Love Story In The Making
5 Weeks Old Today!!
Guess What?? Her Daddy got to hold her for an hour last night! We had hoped that he would have been able to hold her on Tuesday night but her heart rate was slightly elevated again and we didn't want to over stimulate her. It worked out for the best though because our new favourite nurse, Tonya (shh...don't tell the other nurses) was working last night and she went out of her way to accommodate us. We have LOTS of pictures today because she just insisted on taking all kinds of pics, set up in different ways. She's like Sydney's personal paparazzi! :laugh:
When we arrived, her heart rate was a little high but we decided that she needed some Daddy snuggles anyway. Of course, we got her out and her vital signs improved IMMEDIATELY. She wasn't in his arms for one minute before she settled down and she stayed that way for the entire hour. As soon as we put her back in her bed her heart rate went up a bit again. :laugh:
Anyway, stay tuned for pics!
Tuesday, November 27, 2007
All About Oxygen/Lung Support
That white thing taped to her mouth was holding the tube in place.
When she got stronger, she moved to the Continuous Positive Airway Pressure (CPAP) machine that gives her air through her nose. Nasal CPAP delivers air into your airway through a specially designed nasal mask or pillows. The mask does not breathe for you; the flow of air creates enough pressure when you inhale to keep your airway open. It is not invasive at all and does not involve putting anything into her body.
On the CPAP she looked like this:
Today they started testing her on the nasal cannula which means she's needs even less breathing support than the CPAP gives her. The cannula is just a simple tube that provides her with oxygen support without the discomfort of the CPAP on her face. She hasn't been taken off the CPAP but she did perfectly for the three hours they had her on the cannula today. This is FANTASTIC news and only means she is getting stronger and her lungs are developing.
Today she looked like this:
You can actually see her face! She's doing so well.
Here's The Thing About Kangaroo Care...
At first she was swaddled and I held her like that for about 30 minutes. They were testing her with the nasal cannula today and wanted to make sure she could handle it before we started Kangaroo Care. I know some of you guys had some difficulty understanding her whole breathing thing so there will be more on that later. When she was swaddled she was a little fidgety but very relaxed. I think she was just trying to figure out what was going. Then we started actual Kangaroo Care and I am amazed by how much she settled down and just relaxed. She just laid her little head on my chest and used both her hands to hold on to me. She never let go for the entire time I was holding her. She was absolutely the most relaxed and happy she has ever been. I cannot even describe how good it was for us both.
Anyway, I know you all want pictures and thankfully she had a fantastic nurse today who was more than happy to take a few.
:love:
Believing is Seeing
What is retinopathy of prematurity?
Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness.
Several complex factors may be responsible for the development of ROP. The eye starts to develop at about 16 weeks of pregnancy, when the blood vessels of the retina begin to form at the optic nerve in the back of the eye. The blood vessels grow gradually toward the edges of the developing retina, supplying oxygen and nutrients. During the last 12 weeks of a pregnancy, the eye develops rapidly. When a baby is born full-term, the retinal blood vessel growth is mostly complete (The retina usually finishes growing a few weeks to a month after birth). But if a baby is born prematurely, before these blood vessels have reached the edges of the retina, normal vessel growth may stop. The edges of the retina—the periphery—may not get enough oxygen and nutrients.
The great news is that she does not have ROP! Woot! Her eyes are still maturing so she will need to have them checked again in two weeks but so far, so good!
Her feedings have also increased from 15ccs to 18ccs and she's tolerating it perfectly. She even weighed a whopping 2lbs 6oz this morning! :confetti:
But Wait! There's More!
We officially start daily Kangaroo Care today! Admit it... it's the best news evah, right? We are super excited about it and know it will do us all good.
Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. - Philippians 1:6
Monday, November 26, 2007
How Sydney's Mama spends her days
The three bottom trays hold 16 bottles each and that top tray has about 48. She also has a freezer at the hospital that is stocked with bottles.
Mooo!!!!
No other changes have been made to Miss Thang today and she's having a great day! We just need her to eat and grow now. Eat and grow!
Sunday, November 25, 2007
News You Can Use!
As of today she will only have her feeding tube, her oxygen (the CPAP) and her external monitors to check heart rate, blood pressure and oxygen saturation.
Did I already say we were excited?? Soo exciting!!
Woot!
Day 31
It's funny but she looked noticeably bigger last night. She doesn't look so "breakable" anymore and I was very relaxed when I changing her diaper. The best news is that she actually cried for the very first time. Only in this world could crying be a fantastic thing! :lol: My hands were cold when I went to change her diaper and she didn't like that at all so she let out a cry. A real live cry! Before this, she was only been able to whimper like a puppy because her lungs were so immature. It was only one little cry but it really was the best sound ever. It's funny because earlier in the day Brian was saying he was looking forward to hearing her cry for the first time. Of course she did it as soon as he left the room so he missed it. ((((B))))
Weight is 2lb 4.5oz this morning. Woot!
Saturday, November 24, 2007
Day 30
She's doing well in every other way and weighs 2lb 4oz this morning! Looks like the cheesecake helped. :D
Friday, November 23, 2007
Out of the mouth of babes...
Thursday, November 22, 2007
Evening Update
They also say she's not acting sick or showing any other sign of a problem besides the heart rate. Her X-ray today was even better than the one yesterday too. She's very active, tolerating all her feeds and peeing and pooping. They're pretty stumped at this point.
I think they are going to do another EKG as well and we should get the results on those tomorrow.
It was very scary watching her heart rate go crazy when she looked absolutely fine. We'll be praying.
Thanksgiving Day - Day 28!
1. The grace, mercy and love of God.
2. Sydney is ONE MONTH OLD today!
3. Sydney weighs 2lb 3oz today!
4. The great doctors and nurses who care for our daughter.
5. The best family in the world
6. Our Phenomenal friends
7. Modern Medicine and medical equipment
8. Digital cameras. :laugh:
9. The internet!
10. Our daily bread.
Happy Thanksgiving Everybody!
Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus - 1 Thessalonians 5:16-18
Wednesday, November 21, 2007
A lot can happen in 5 days!
She handled the increased feedings well and doesn't show any sign of intolerance at all. Hopefully she can gain some weight now that she is past her infection and off the diuretics. I'm going to have to give her some cheesecake or something.
She starts kindergarten next week. :smile:
Tuesday, November 20, 2007
Extubation...Part Deux!
Cheers all around!
Monday, November 19, 2007
Day 25!!
She also has very little mucus today and that is also helping her to breathe better.
They are actually planning to try to take her off the vent again tomorrow! We thought they would wait some more but she's been doing better and better every day so they're going to try. We're praying she's strong enough to handle it now.
Thanks for all your support.
Sunday, November 18, 2007
Day 24!!
The doctor was Jamaican and he's had her a couple times before. He calls her "Shorty" or "Shawty", to be exact and he talks to her like she's 5 years old. :rofl: He says he likes her because she understands patois (Jamaican dialect) and she's feisty. He's soo good with her and is very attentive to her needs. We are so happy with the way all the doctors and nurses care for her.
Her weight remains unchanged, which is good since they expected her to lose again because they started her on diuretics again yesterday. Feedings are the same and her oxygen dependence is waning. Woot!
Saturday, November 17, 2007
Day 23!!
She's still at 14ccs for feedings and all her blood gases and X-rays are great.
Friday, November 16, 2007
So far, so good...
She's very relaxed now and not having any oxygen or heart rate issues at all and her feedings remain unchanged. They're planning to try extubation again when she's closer to 30 weeks developmentally.
What an interesting cap!
29 Weeks!
Well, the past 12 hours have been eventful, to say the least. When we got to Sydney's room last night, her nurse told us that she was doing ok being off the vent but she had moments where she really struggled. She had been ok for about an hour before we got there and then things went CRAZY. She started de-sating ( saturation dropped dangerously low), her heart rate dropped all the way down to 82 beats per minute (she's been averaging 162) and she had a major apnea episode. The apnea means that she actually stopped breathing for more than a few seconds. She had never had a major apnea episode before that. I think we stopped breathing right along with her.
Suddenly 4 neonatal doctors came racing into her room, along with a respiratory therapist. They started trying all kinds of interventions (suctioning her mouth etc) and ordered an emergency X-Ray. They also ordered a breathing treatment to reduce swelling in her throat that was caused by the ventilator. While waiting for the treatment, they gave her a pacifier and it seemed to really help her. Apparently the pacifier worked to keep her mouth closed and help her breathe better. At that point she was all the way up to 70% on the CPAP after starting at 50% right after she was extubated. The doctors were not happy with that at all so they decided to give her an hour after the treatment to see if she made any improvement. The goal is to keep her off the vent but not if it causes her distress. After an hour, she was doing muuuch better but was noticeably tired. They all consulted with each other and decided that the best thing for her was to be re-intubated for a few days and try again when she regains her strength and puts on more weight.
After being intubated she really settled down and had a very peaceful night. She still has a few days on antibiotics so they're hoping that she will do much better once she's totally past that infection.
In the meantime, we'll do the only thing we can do. Pray.
Thursday, November 15, 2007
WOOOOOOOOO HOOOOOOOOO!!!!
She's doing great with everything else.
Three Weeks Old!!
Miss Priss had a good night and was resting comfortably this morning. They are going to try to extubate (take her off the vent) today since her morning blood gases came back ok. If she handles being extubated, they will move her to the CPAP again.
She's just over 2 lbs today but she still has one more dose of the diuretic so she may lose some more water weight.
The nurse said she covered her diaper with a pretty cover and she looks extra precious today. Baby girl is about to graduate to wearing clothes! :laugh:
More later...
Wednesday, November 14, 2007
Yes!!
They haven't adjusted her feedings because their policy is to work on one thing at a time and not cause the babies undue stress. She's doing well with her food and still peeing and pooping like a champ. All her other vital signs look good and all her tests have been great.
She's having a wonderful day.
Day 20!
When we went to see Sydney last night, we noticed that she was doing muuuch better on her oxygen saturation. The nurse said the improvement began almost as soon as she started on the diuretic. Feeling better obviously made her more energetic because we arrived just in time to see the nurse re-attaching her feeding and breathing tubes. She had pulled them out for the second time that day. She also has this thing where she must always be clutching something. Her tiny hands are always holding on to something. She loves to pull and hold other people's fingers too. :laugh:
The diuretic made her pee more frequently, so she has lost an ounce since yesterday. That's totally normal and was expected. We're most happy that she's doing better with her breathing because it increases her chances of getting off the vent. When she doesn't have to expend energy to fight infections and deal with the vent, she will gain weight in a more consistent way.
When I spoke to the nurse this morning, she said Sydney had an even better night and had very few breathing episodes. Looks like she just needed to get rid of that excess fluid. Yay!
Tuesday, November 13, 2007
Day 19!
Her routine X-Ray showed a tiny amount of fluid in her lungs but the doctor says it's pretty normal for a preemie of her age. They will give her a diuretic today and that should clear it up. We'll be praying about that. She's still having issues with her oxygen saturation but nothing that the nurses or doctors are concerned about.
Let us hold unswervingly to the hope we profess, for He who promised is faithful - Hebrews 10:23
Monday, November 12, 2007
More food!
Weight is still the same and she's having a good day overall. She's very alert today but not kicking too much since they have her on her tummy. We need her to start gaining again.
All things being considered, she's doing amazingly well. We are so grateful.
Day 18
Please pray that she starts to tolerate being slowly weaned from the vent this week. They don't mind giving her the support but being on the vent greatly increases the risk of infections. The most common infection is known as a "water bug" and she's already had it and received antibiotics for it. The doctors definitely won't rush the process and they're doing everything they can to avoid her getting sick.
Saturday, November 10, 2007
'Twas a good day...
They decided to not do Kangaroo Care because they didn't want her to be in a position where it would be hard for them to grab her if she got into real trouble. I think my obvious disappointment made them decide to meet us halfway though, so they allowed me to hold her all bundled up but not really Kangaroo style. It didn't really matter...holding her was fabulous. Needless to say, her oxygen saturation stayed completely level for the entire hour that I held her. She was so calm and peaceful and the nurses were shocked. I think she loves her mama.
Pictures!
Recognize that jacket, Dar? :love:
Daddy changing his first diaper...ever! He usually just stands behind me and squirms. :laugh:
Peace that cannot be explained...
Day 16!
She had a pretty good night overall and is doing well.
We will attempt Kangaroo Care today.
Friday, November 9, 2007
She's got places to go and people to see...
Someone tell her that she needs to settle down. I don't know why she feels the need to be soo busy in there!
28 weeks!!
Bald Patch!! She lost some of her hair, which is normal. She doesn't like her limbs being restricted and her little hands are always clutching something. That's her feeding tube.
Apparently we were talking too much, so she covered her ears. The nerve! :laugh:
She ALWAYS has her feet hanging out of her bed. A lot of preemies like being swaddled and curled up as they were in utero. Not her. She's such a busy little girl.
Blood Pressure Cuff!! It really does look like an oversized bandaid.
Remember you can click on any picture to view it larger.
Thursday, November 8, 2007
Where is she putting it all??
The nurse says she's VERY active today and having a grand old time in her room. She's kicking and punching and squirming. She's such a doll.
More pictures and video tomorrow!
Two Weeks Old!!!
She had a great night and was busy stretching and flexing when I called. The nurse said she gave her a bath earlier and she was not happy about it. She said she was sulking in her room for about an hour after. :laugh: She's digested the increased amount of milk at every feeding and all her bodily functions are exactly where they want them to be.
She's had a blood pressure monitor attached since she was born and it's monitored her 24/7 since then. They will be removing that wire today because they don't think she needs it any longer. That's one less wire hanging off her little body. Yay! As of now, they will take her blood pressure like a normal person. Who knew they made blood pressure cuffs that small??
Wednesday, November 7, 2007
*Squeal*
The doctor says they are very happy with her progress and they will remove the IV in her arm today. They don't think she requires as many daily tests as they were doing especially since they were only irritating her. I'm glad because she always has that arm covering her face! :laugh: They will continue to check her blood gases daily for as long as she is on the ventilator. The doctor decided to not mess with her oxygen settings today because he thinks she's still a little weak from fighting that infection.
We are just in awe of it all.
Day 13
She had a wonderful night and is tolerating all her feedings. They will try to wean her from the ventilator again today and see how she does. They will keep attempting to reduce her dependence everyday until she no longer needs it.
Now faith is being sure of what we hope for and certain of what we do not see. - Hebrews 11:1
Tuesday, November 6, 2007
Well, look at that!
They did try to lower her oxygen dependence a bit (from 28 -20%) but she was NOT having that. Apparently, she's more concerned about eating than breathing on her own. :laugh:
Awesome.
No news is GREAT news!
The nurse said Baby Girl had an EXCELLENT night and did everything she was supposed to: poop, eat and sleep. She had no breathing or heart rate issues at all.
Did I already mention how amazed and grateful we are that she's doing so well?
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. - Jeremiah 29:11
Monday, November 5, 2007
She is her father's child...
She now weighs 1lb 12 oz but they're waiting to measure her for now.
Yay!!
Day 11!!
The nurse was getting ready to bathe, measure and weigh her so we'll get those numbers later today.
We are amazed by how well she's doing and we appreciate all your prayers.
Sunday, November 4, 2007
PICC Line has been placed!
They also adjusted her feeding tube and it seemed to have helped with the reflux. They have now increased her feedings to 4ccs and she's doing well. Her limbs look more meaty already. :laugh:
I think they will finally measure her tonight and we'll find out if she's gotten any taller since birth.
Day 10!!!
Her weight is the same and we will find out if she has gotten any taller this afternoon.
Saturday, November 3, 2007
Feedings have resumed
Thy X-Ray showed that the Picc line was not where it needed to be so they tried again and did another X-Ray. Still not fixed. They are going to try a third time and if it still doesn't work they will remove it for now and try again in 3 days or so. They're trying to not upset her too much. Normally they would keep trying but they did a test of some cultures they got from one of her tubes and it looks like she may be about to fight another infection. They don't like trying Picc placement if the babies are sick in any way. She's on antibiotics for a few days.
Besides that, the nurse said, "She's a perfect angel and is doing just great. We're the ones that keep messing with her."
Day 9!
She's still having issues with some of her feeding so they have stopped them for a few hours. The doctor will more than likely reduce the amount she has been getting since she has been digesting most but not all of it. Her weight remains the same as well.
The PICC line placement also went well and they will do an X-Ray this morning just to confirm that it's where it needs to me.
Jesus looked at them and said, "With man this is impossible, but with God all things are possible." - Matthew 19:26
Friday, November 2, 2007
27 Weeks! Yay!
They also did a routine head ultrasound during the night and we'll get the results later today. Of course, there's nothing wrong with her head.
More later
Pictures!
Thursday, November 1, 2007
Wanna hear something interesting?
Here it is: http://i57.photobucket.com/albums/g205/beeshoney/FirstWeek010.jpg
Amazing.
More FYI
Did that make any sense? :laugh:
Baby Girl loves to eat!
All your prayers are definitely making a difference.
ONE WEEK OLD!!
I just spoke with her doctor and she said she had a GREAT night and tolerated all 5 of her feedings well. They weighed her before she started the feedings and she now weights 1lb 110z!! She's now above birth weight despite missing food for 24 hours. She's been getting her IV fluids though and her vitamins. All her other tests have come back great too.
She’s one week old today and 26 weeks and 6 days. She was actually born at 25 weeks 6 days but doctors count you as having started the following week once you are on day 6. Their official record is that she was born at 26 weeks but they won’t count her as 27 weeks until tomorrow.
Tomorrow is picture day!
She's also getting her PICC line put in today:
A PICC (Peripherally Inserted Central Catheter) is a special catheter
placed in a vein through which medications, blood products and fluids can
be administered.
The PICC is a long, thin catheter (16-24 inches long) made of polyurethane. It
is inserted in a large vein in your arm (either in the basilica or cephalic vein)
near the bend of the elbow, and then advanced to the superior vena cava, a
large blood vessel that leads to your heart.
A PICC is inserted in persons requiring intravenous (IV) infusions over
an extended period of time. It prevents the need for frequent needle sticks
for IV insertion since the PICC line can stay in for up to six months.