Sunday, May 31, 2009
All is the same today as yesterday. Andrea lost 30 grams, most probably due to the Lasix, which is a diuretic. I think tomorrow is the last day for that. Her breathing seemed somewhat better today - she is still on 1 liter of 28% oxygen, but didn't need additional support while eating, even during nursing.
Hopefully the new rotation of doctors will have some news to share tomorrow. Also, our favorite nurse is back, which is always the best way to get information. She makes sure we know exactly what's going on.
"The grand essentials to happiness in this life are something to do, something to love and something to hope for."
Saturday, May 30, 2009
“We must accept finite disappointment, but we must never lose infinite hope.”
Martin Luther King
Friday, May 29, 2009
Thursday, May 28, 2009
A lot has happened in the 24 hours since I last posted. Andrea had her vaccines yesterday afternoon (Hepatitis, DPT, Pneumonia, Meningitis and Polio) given in three shots. Other than a mild fever (99 degrees) that lasted for only a short time, she seems to have had no ill effects. I think the ordeal wore her out, though. She spent much of today sleeping.
Also yesterday, Andrea had her hearing checked, which is standard practice before these babies go home. I was curious as to how they could check hearing in such a tiny baby - I'm sure you all remember the hearing tests we had in school. "Raise your hand if you hear the sound". The doctor put a little speaker in Andrea's ear and attached sensors to her forehead and behind her ears. The sensors measured brain wave activity when sounds were played. Andrea passed with flying colors, so we know her hearing is OK. So when she ignores us as she gets older, we know it'll be attitude, not a hearing problem.
Every night, the babies in NICU and SCN are given baths. Until yesterday, Andrea had a sponge bath. For the first time, she was given a tub bath last evening. We weren't there, unfortunately, but the nurse said she was crying until she hit the water, and then she didn't know what to make of the whole situation. The basin they use for her is about half the size of a standard kitchen dishpan!
Ken is currently at the hospital for a visit, and he will be able to bathe Andrea tonight. I left the camera for him, so hopefully I'll be able to post a bath picture when he gets home. In other news, Andrea's weight is unchanged from yesterday, and the doctors decided to go back up to the 27 calorie milk, which has both human milk fortifier and powdered baby formula added. The concern is that she is now 39 weeks gestation and still requires oxygen support. By giving her the extra calories, the doctors are hoping she'll grow faster and be able to get off the oxygen.
The doctors are considering sending Andrea home ON oxygen, since she is getting NO other support from them. She is completely bottle/breast fed and she can maintain her body temperature. She is on no medications other than vitamins and minerals. If she was off oxygen, she'd be a completely normal newborn. Of course, we will take Andrea home whenever the doctors are ready to discharge her, but it's scary to think of her being home and connected to an oxygen tank.
Andrea's primary day nurse, who spends much of her time advocating for what is best for Andrea, keeps reminding the doctors that Andrea is actually -1 week old right now. She is still a week from her due date. I think she's convinced the doctors to wait until she's actually "0", meaning at her due date, before they make a decision about the oxygen at home. So, for all of you praying for Andrea, please say a few extra prayers for her, that she grows well this week, and her lungs develop the size and strength they need to function properly.
"He conquers who endures."
Wednesday, May 27, 2009
Tuesday, May 26, 2009
Monday, May 25, 2009
Andrea's weight is up to 2085 grams (4 pounds, 9.5 ounces). She's been eating so much that the doctors are modifying "feed on demand". She still gets fed every four hours, but she's being limited to no more than 50 ml. Andrea was showing some signs of edema, so we're trying to slow her down a little.
Andrea is still on nasal cannula today. She had some breaks yesterday, but so far is not breathing well enough to be completely on her own.
The weekend was great, but I'm wiped out. My mom calls it beach fatigue. I'll try to write more tomorrow.
"The greater the difficulty the more glory in surmounting it. Skillful pilots gain their reputation from storms and tempests."
Sunday, May 24, 2009
In addition to being moved out of NICU, Andrea spent 2 hours completely off the nasal cannula - she was breathing completely on her own, with no oxygen support. Her nurse put the cannula back on before Mom fed her, just to make sure that Andrea had no desats while eating. The nurse is going to try the 4 p.m. feeding without oxygen and see what happens. Now that she's eating on demand, Andrea seems to be averaging between 60 ml (2 ounces) and 72 ml of milk at each feeding. That's pretty much what a full term baby would eat at the beginning, so she's right on track.
Andrea's weight is up to 1985 grams (4 pounds, 6 ounces). When she gets to 2000 grams (2 kilograms) she will get the vaccinations normally given to two month old babies. We expect that to be any day now.
The process for bringing Andrea home is slightly different from bringing home a full term baby. We have to bring our car seat to the SCN two days before discharge. We also have to fill any prescriptions and bring them in early as well. Andrea will need to be seen in the pediatrician's office no more than two days after she comes home. There will be a lot to coordinate, but it will be a pleasure to have her with us all the time. Even when she wakes us up in the middle of the night!
We can hardly wait to introduce Andrea to the wonderful people who brought us to this point. Please keep the prayers coming just a little bit longer!
“True friendship multiplies the good in life and divides its evils. Strive to have friends, for life without friends is like life on a desert island..to find one real friend in a lifetime is good fortune; to keep him is a blessing.”
Friday, May 22, 2009
Romans 1:11, 12.
Thursday, May 21, 2009
Wednesday, May 20, 2009
Tuesday, May 19, 2009
Monday, May 18, 2009
Where to begin today? As you can see from the title of the post, Andrea has been moved into what is called an open crib. It's actually the same bassinet (or remarkably similar - Kenny was in one when he was born) that newborn babies are put in - It's way smaller than even a portable crib. The reason this is big news is that the open crib provides no warming. Andrea is maintaining her body temperature all on her own. She was moved about 1:30 p.m. yesterday, and was still doing well when I saw her this morning. She looks bigger, because the crib is so small. She's wearing pajamas (with feet!) and is swaddled in blankets to help her stay warm.
Andrea's breathing continues to be a puzzle. She got her blood transfusion on Friday, which helped somewhat. (Thank you for the blood! It came from one of our directed donors!) Her color is much better, and she is back to her old self in terms of personality. She has the strength to give the nurses a hard time. She was providing a lot of resistance to the physical therapist today. The puzzling part is that she is still requiring more oxygen support than in the past. She is on 30% oxygen and 3 liters flow rate. When she first came off CPAP, she was only at 2 liters. Still, on x-ray her lungs are clear, and the doctors tell me they're expanding. We just don't know why she needs this much help right now. So far, the cultures from the blood and spinal tap have been negative. However, the doctors have decided to keep her on antibiotics for a few more days, just to be safe.
Andrea has reached another major milestone. She is more than quadruple her birth weight, weighing 1850 grams (4 pounds, 1.3 ounces). Whatever else is going on with her, she has maintained her interest in food. She has continued to devour her four bottles a day, and has no problem with the tube feedings, either. When I fed her today, she looked like she could keep going, if only we'd give her more milk. I think the voracious appetite is contributing to the weight gain, and we need her to grow! I hope her lung/breathing issues will work themselves out as she gets bigger.
As always, please continue to pray. We are thankful for all the prayers and support. We need to be strong and optimistic for a bit longer, and then hopefully this can all become a memory.
"Great difficulties may be surmounted by patience and perseverance."
NOTE: If anyone wants to contact me without posting publicly, I am reachable at firstname.lastname@example.org.
Sunday, May 17, 2009
Saturday, May 16, 2009
The IV needs to stay in for now - she's going to get at least three days of antibiotics. If the cultures come back negative, that'll be the end of it. If they're positive for some kind of infection, she'll get 7 to 10 days of medication. Her nurse today managed to dress her, despite the IV in her arm. It was a huge relief to us to see her in her own clothes, looking healthy. Last night, she was in the isolette, which had been heated again, and she was naked except for her diaper. We've been spoiled by seeing her dressed. She just looks better in clothes.
I spoke to the doctors today, who were also relieved that Andrea is doing better. I believe they were doing what they thought was best when they requested permission for a spinal tap. I feel terrible that Andrea had to endure that, especially since it took a few tries to get a sample. Still, I'd feel worse if we denied permission and then Andrea got really sick. The doctor in charge reassured me that they will be more proactive in deciding when to give Andrea blood - they'll do transfusions when her hematocrit is 25% or less. It was 23% yesterday. (Hematocrit is the percentage of red blood cells in the blood)
A few of Andrea's nurses follow this blog - I trust them to correct any of my inaccurate statements. I try to pay close attention, but sometimes the doctors lose me. The nurses have been wonderful about making sure we understand what's happening, and why. The doctors do the same, but we see much more of the nurses, and they're better at the explanations.
Thank you for your concern yesterday. She is really better today - although not her complete self. Her color is WAY better than it was - she's rosy pink again. Her appetite is still excellent. She has lost some weight, between the diuretic and not eating for a few meals yesterday. She'll pack it back on soon, though. We're lucky that eating has not been a problem for her.
“Take heart again; put your dismal fears away. One day, who knows? Even these hardships will be grand things to look back on.”
Thursday, May 14, 2009
Andrea gained more weight; she is now 1690 grams (3 pounds, 11.6 ounces). We're getting closer and closer to an open crib! Unfortunately, her thyroid screen came back abnormal again today, so we're waiting to hear what the endocrinologist recommends. Andrea is also going to be given Lasix, a diuretic, for three days. There is some concern that she still needs oxygen, and the Lasix will help remove fluid from her lungs, if that's what's causing the problem. We know it's also been a long time since Andrea had a transfusion, which may be contributing to her fluctuating oxygen levels. Her bone marrow is making blood cells at a good rate, but they mature very slowly, and she still looses more blood than she makes. The thyroid test alone is 4 ml of blood, and she only got 16 ml at her last transfusion. So, we won't be surprised if it happens sometime soon. However, Andrea will NOT be a happy camper to get blood... she can't be fed for 8 hours if she gets blood, and Andrea loves her food! I guarantee there will be much crying and complaining if she's denied two meals.
You can't see it in this picture, but Andrea is wearing real pajamas. They have feeties and everything. It was very cute to watch her in them. She's not used to having her feet and legs covered, and she kept trying to kick her feet free. I have to say, she's too cute for words in her PJs.
Thank you for getting us to 11 weeks. Ken has been a work horse, going to work (because someone has to pay the bills), doing the lion's share of housework, helping care for the boys, and still getting to the hospital as often as he can. So many people have reached out and helped, often just doing what needs to be done, without waiting to be asked. Our neighbor across the street mowed our lawn! Many of you have been feeding us for weeks, and keeping the boys busy. We are blessed in Andrea's good health, and blessed in our friends and family. Please continue to remember Andrea in your prayers, and pray that her lungs will grow strong and she can get rid of the oxygen.
“No matter how difficult the challenge, when we spread our wings of faith and allow the winds of God's spirit to lift us, no obstacle is too great to overcome.”
Wednesday, May 13, 2009
"With the fearful strain that is on me night and day, if I did not laugh I should die”
Tuesday, May 12, 2009
Andrea's weight remained the same from yesterday to today, and she didn't grow any longer since last week. Since she's the same size, her food isn't increasing, but the doctor authorized a move from three bottles a day to four. Every other feeding will be by bottle, as long as she can tolerate it, and doesn't lose weight. Since she's sucking down her milk in only 5 to 6 minutes, (when she can take up to 30) I don't think the weight issue is going to be a problem.
The temperature on the isolette has been dropped to 28.7 degrees (Celsius). Room temperature is 28 degrees. Once Andrea is maintaining her body temperature at 28 degrees, she can be moved to an open crib. She has been wearing her own shirts and hats, and we're going to try some pajamas tomorrow. She looks so cute!
PT is going well. The therapist is working with Andrea to help her build strength and range of motion. She is also working to help reshape Andrea's head after the effects of CPAP. It really looks dramatically better than it did, but it is still misshapen. The therapy will help it get better, faster.
Thank you for the continued prayers and support. We are at day 75 today. Each individual day seems to last a hundred years, and yet I still sometimes think this is all a dream from which I'll awaken. We are blessed in Andrea's incredibly positive recovery, and also in our family and friends who have been there every step of the way for us.
"Success is the sum of small efforts, repeated day in and day out."
Monday, May 11, 2009
Sunday, May 10, 2009
Even though it's Mother's Day, Ken was able to get to the hospital to see Andrea, and got a chance to feed her for the first time. There aren't too many pictures of Daddy on the blog, so I decided to include this one here.
Saturday, May 9, 2009
Andrea's weight today is up to 1540 grams (3 pounds, 6.3 ounces). Since she gained back all the weight she lost, her food was increased to 28 ml. 30 ml is one ounce. The isolette temperature was lower again today, as she works toward getting into an open crib. (1800 grams is the goal for that). Andrea continues to do well on nasal cannula. Her oxygen support is slightly higher right now, 30%, to allow her to concentrate on staying warm.
Sorry for the short post, but all is well, it's late, and I'm very tired. I'm off to crash now.
If you can believe, all things are possible to him who believeth.
Friday, May 8, 2009
All remained the same for Andrea today. The isolette temperature is lower than yesterday, as Andrea continues to regulate her own body temperature. She is wrapped in fewer blankets, and her temperature is monitored to make sure she's not getting too cold. She gained back some of the weight she lost yesterday, and will hopefully continue to do so. She can't have increased food until she's gained the weight back.
I was able to give Andrea one of her bottles today. She is adjusting very well to bottle feeding, consuming her 27 ml in about 15 minutes. I noticed she's letting less dribble out the sides, too, so I think she's got a better "grip" on the bottle. As well as Andrea does with the bottle, she does expend considerable energy to drink. She'll take four or five sucks, and then pause to catch her breath. After she's done eating, she goes right off to sleep. which is really the best thing for her, anyway.
"Limitations live only in our minds. But if we use our imaginations, our possibilities become limitless.”
Thursday, May 7, 2009
Wednesday, May 6, 2009
“Prayers go up and blessings come down”
Tuesday, May 5, 2009
Andrea's weight is now 1440 grams (3 pounds, 2.8 ounces). She is now what the staff refers to as "a feeder and grower". She is (knock wood) essentially healthy. She doesn't need much in the way of true medical treatment. She is being kept warm to conserve calories, and her food is supplemented for extra nutrition. She gets vitamin and mineral supplements as well. Other than that, she is being fed and allowed to grow. She actually could be moved out of NICU (neonatal intensive care unit) and into SCN (special care nursery) because she requires so little specialized treatment. Much to our relief, she's staying in NICU for now. We prefer slow and steady, with no sudden moves. Also, her four primary nurses will move to SCN with her when she goes, so her caregivers will remain consistent.
Just a note - this is National Nurses' Week. We try to thank Andrea's nurses every chance we get, but I wanted to use today's blog to publicly thank them all again. In an effort to respect their privacy, we never mention any of them by name here, but they know who they are, and we love them for the excellent job they've done, and will continue to do, to help Andrea come home. Today's quote is for all the RWJUH NICU nurses.
"To do what nobody else will do, a way that nobody else can do, in spite of all we go through; is to be a nurse." -- Rawsi Williams
Monday, May 4, 2009
Andrea spent all night at 25% oxygen, only getting bumped up to 30% for her second bottle feeding. She got her 27 ml (30 ml = 1 oz) in a bottle at her 3 o'clock feeding, and sucked the whole thing down in less than 15 minutes. After she ate and was burped, I got to hold her all swaddled up, as you can see from today's picture. Under her blankets, Andrea is actually wearing an undershirt, another momentous event. She's finally big enough for some clothing!
The bottle feeding has been ordered for once a day, as long as Andrea can tolerate it. The nurses are free to decide which feeding is best. She seems to be pretty alert in the afternoons, and she needs to be awake enough to participate. Remember, for over 9 weeks, all her meals were delivered to her via tubing, allowing her to be passive. Now she has to work for her meals!
"I asked God for all things, that I might enjoy life. God gave me life, that I might enjoy all things."
Sunday, May 3, 2009
Andrea getting burped for the first time. Unfortunately, I missed the look on her face right after the burp. She looked bewildered!
Saturday, May 2, 2009
We had a big surprise when we went to see Andrea today. She was off CPAP again, and back on nasal cannula. We really thought the doctors would give her a few days on the +5 CPAP and see how she did, but last night they decided to give it a shot. We have to admit, she looks more comfortable with the cannula, and seems to have an easier time resting. Her blood gases were good today, but we have to see what happens over the next few days. Last time, she lasted about 48 hours.
Andrea's weight is up to 1340 grams (2 pounds, 15.3 ounces). She's 10 grams away from tripling her birth weight, and 21 grams away from 3 pounds. She's had no changes in her feedings, although today she yanked out her feeding tube, so was delayed in getting her 9 a.m. meal. Of course, then she was crying because she was hungry, and didn't get fed on time.
One of my good friends, and the first blood match we had for Andrea, donated another pint of blood today. We used the one she previously donated, and are now drawing on a pint donated through Ken's job. Now, we have this one "in the bank", which should take Andrea through discharge. Her marrow is catching up to her, and the doctors have to draw considerably less blood, so she needs fewer transfusions. We are so thankful to have the blood in reserve. We may not need it, but it's a relief to know it's there.
I met a new NICU dad today, whose daughter was born on Wednesday. Parents in the NICU waiting room swap stories of how each wound up on this surreal journey with our babies. I get some kind of perverse pleasure in seeing how people react to Andrea's story. No one can believe her beginnings, and reactions range from sad to horrified to intrigued to amazed. Of course, now the reality of Andrea is so far from her beginnings, she's not even the same baby. I try to use our experience to provide encouragement to these new families. I know not everyone will have the experience we had, and some of them will have great sadness. Still, I believe that hearing about Andrea, and how well she's doing, can only make people have more confidence in the chances for success for their own babies.
“I can't change the direction of the wind, but I can adjust my sails to always reach my destination.”
Friday, May 1, 2009
Difficult things take a long time, impossible things a little longer.