Tuesday, June 30, 2009
Boston in the tub.
Monday, May 4, 2009
It seems fitting, therefore, that we are able to celebrate his birth and dedication so near to this milestone. Boston will be dedicated next Sunday as part of our morning church service. We will be having an open house from 2-5 in the afternoon and invite everyone to stop by to see Boston and share in our happiness!
The details are:
Heartland Community Church - South Campus
15100 W. 127th St.
Olathe, KS 66062
2:00 - 5:00 p.m.
14630 W. 85th Terrace
Lenexa, KS 66125
We hope you can come!
Friday, April 3, 2009
Additionally, the genetic tests came back and were exactly the same as before he was born, which is additional reassurance that he only has one broken gene, not two, and therefore will only be a carrier of Pierson Syndrome rather than have it himself.
In addition to this wonderful news, we also celebrate that Boston is 2 months old now. We not only got to hear the great news about his labs, we also got to visit his run-of-the-mill pediatrician for his 2 month check-up. He is 14 pounds! He is in the 97th percentile, but still on the chart. He has gained the maximum amount of weight on the "normal" growth chart. It is such an answer to prayer because before he was born we were not sure if he would grow at all.
Our family of four is loving life and our time together. I did not anticipate how hectic daily life would be and how little time I would have to spend on my own pursuits, but I love my boys and would not trade time with them for anything. Hopefully, I will have more time to blog soon :)
Clark and I at the Wichita zoo looking at the cows.
Brian came home one day to find both boys asleep on my lap. We were watching Jeopardy!
Boston smiling in his sleep.
Tuesday, March 3, 2009
Boston's labs looked great. His protein level in his blood was stable again at 3.7, which is normal. All of his blood work was normal. We are waiting for the actual ratio of protein to creatinine in his urine, but the dipstick was negative for protein.
With all of this good news, Dr. Blowey said we can wait another month before having labs drawn again, and if those are normal, we will not have to go back to Children's Mercy until June.
We should get the results of the repeat genetic test back from Athena Diagnostics in a couple of weeks.
Monday, March 2, 2009
Our prayers that were listed on the right hand side of the page have been answered in the following ways:
Prayer: That Sarah will be strengthened with all of God's glorious power so she will have all of the endurance and patience she needs to finish the pregnancy with a cheerful spirit. Answered: Within a day after posting this request, Sarah felt uplifted and strengthened by God’s power. She was able to faithfully wait out the rest of the pregnancy. Sarah had an easy labor and delivery and recovered quickly.
Prayer: That Boston would be completely healed and that he will be born healthy with no complications; That Boston be healed completely; That he has a mild form of disease that does not affect his functionality.
Answered: In God’s wisdom, Boston was born with a body that compensates for an extra loss of protein in such a way that he has no other complications. Because of this, he is currently not classified as having any form of nephrotic syndrome. This is an impossible miracle that we could not have understood nor prayed for, but we are exceptionally grateful for God’s understand of the complex workings of our bodies.
Prayer: That Boston’s kidneys will continue to improve and show no sign of “texture” or “brightness” on the ultrasound.
Answered: Boston’s kidneys improved and the ultrasound after Boston was born showed no abnormalities: the kidneys were formed and function correctly, although they do not filter as expected.
Prayer: That he will grow quickly and gain weight well in order to reach transplant size.
Answered: This prayer has been answered in abundance. Boston made it to almost 39 weeks and weighed in at 8 pounds, 3 ounces. At one month he weighs 11 pounds, 7 ounces. The normal weight gain range for a breastfed baby is 5 to 8 ounces per week, so he had a target weight gain of 20 to 32 ounces. He gained 52 ounces! This weight gain is his protection against any future problems and brings him closer to a transplant weight, should he ever need one.
Prayer: That Sarah and Brian will be able to prepare for the worst without losing perspective on the big picture.
Answered: We found this to be much harder than we anticipated, especially in the first few days of Boston’s life when we were told that he was losing protein and to expect him to get sick. We know, however, that this preparation would have been impossible without the knowledge of God and our relationship with Jesus.
Prayer: That the doctors will find a cause for his ridiculously high AFP and be able to treat it accordingly.
Answered: The cause of Boston’s high AFP was the protein that he is passing into his urine. Miraculously, however, it requires no treatment at this time.
Prayer: That the level of his amniotic fluid will stay normal in order to allow his lungs to develop and to reassure us that he does not have complications.
Answered: this was answered in abundance: Boston’s amniotic fluid stayed normal until the final weeks of his gestation, allowing his lungs to fully develop.
Prayer: That he will have use of his eyes and not be blind.
Answered: Boston’s eyes are normal at this time and he is meeting all of the development markers for focus and tracking.
Prayer: That his muscles will be strong and his brain alert.
Answered: Boston has a strong vice grip in his hands. His head and neck strength are increasing every day and he is ahead of the curve on being able to support his head on his own. He is also advancing in his head and shoulder strength during his tummy time.
Prayer: That Sarah will be able to learn and understand about the disease and treatments.
Answered: Through the support and encouragement of the medical team, Sarah was able to gain all the information necessary to converse with the doctors in a knowledgeable manner about Boston’s condition. It was a compliment to her to be regarded as an “expert” on Boston’s condition.
Sunday, February 22, 2009
Tuesday, February 17, 2009
Now that we are home we have really appreciated the meals and gift cards to restaurants that have been given. It is such a blessing to not have to go to the store and prepare meals.
Play dates for Clark are also something we are looking to set up. The best times are 9-11 and 3-5. If you would be willing to have Clark over, please contact us with available days and times.
Gift cards to Babies R' Us or Wal-Mart -- for diapers, burp rags, pacifiers, breast milk storage bags, and other baby essentials that always seem to be in high demand.
Prayer -- we can never have enough. And why stop now when our prayers have been answered so abundantly?
Contact us at email@example.com if you are willing to help. Donations and gifts can be mailed to us or dropped off at 14630 W. 85th Terrace, Lenexa, KS 66215. We can't tell you how much we appreciate all of your prayer and support.
Because of Boston's miraculous stability and the fact that he has protein in his urine, but none of the other signs of congenital nephrosis, Dr. Blowey changed his diagnosis from congenital nephrosis to proteinuria (a diagnosis that means he has protein in his urine). Dr. Blowey says he looks great and we have done all that we can, so now we just watch him and keep our fingers crossed. Our next follow up appointment is in two weeks.
This is such a cause for praise in our household. I have been challenged to be completely and utterly joyful and giving of praise to God for what he is doing in Boston's life. My tendency was to be "cautiously hopeful" and to not fully embrace Boston's health as a miracle out of fear that he could take a turn for the worse. Over the past couple of days I have come to realize that God is not one who makes us "knock on wood" that he won't take our blessings away -- He doesn't punish us for being too happy with his gifts. And so we embrace Boston's health for what it is--an absolute miracle and answer to prayer. And we praise God for his goodness and mercy and for our beautiful boy!
Miraculously, Boston seems on track to match or surpass his big brother in weight gain. Boston had a bit of a leg up at birth, regained his birth weight a bit quicker, and is currently packing on the pounds. At one week, Clark weighed 7 pounds, 10 oz; Boston weighed 8 pounds, 4 oz.
Today at Boston's two week check-up we found out he weighs 9 pounds, 6 oz, a weight gain of about 18 ounces in a week! (The average baby gains 5-8 ounces per week).
This is such a blessing because often the biggest hurdle in the treatment of conditions like Boston's is getting the baby to grow. Boston's healthy appetite and his steady growth are the best indicators for his long term survival.
Clark is also very protective of Boston. At church on Sunday he actually pushed a friend of ours' hand away when she tried to touch Boston. (She was able to hold Boston later when Clark wasn't around).
It is wonderful to see how quickly Clark has adjusted to having Boston in our lives and how loving he is toward him. We are so blessed!
Wednesday, February 11, 2009
Monday, February 9, 2009
He is still showing no sign of swelling. His bilirubin was low enough that all phototherapy could be stopped. He is back in his clothes and out of the warmer and in a regular crib. He is still a champion eater and sleeper.
It is still possible that Boston's condition could worsen and so the doctors are developing our follow-up plan that will involve weekly visits to the docs and labwork. We are focusing on the fact that today he is doing great -- and not worrying about what tomorrow holds. Our doctors can't explain our little hero's miraculous recovery -- we give all the credit to God.
During our week in the hospital we have had lots of ups and downs -- we have been in the land of the plentiful and we have walked through the desert place, sometimes in the space of a few hours. Through it all we say "Lord, blessed be Your name."
Sunday, February 8, 2009
His bilirubin was down today enough that we could take him off the spotlight and just leave him on the paddle. It goes inside his blanket next to his back and we can hold him while he is on it.
He is gaining weight and is at 7 pounds 10.5 ounces, up from a low of 7 pounds 8.7 ounces a couple of days ago. The norm is for babies to regain their birth weight within two weeks and he seems on track to do that.
Boston has had the same day and night nurses over the weekend, which has been really nice to have that continuity. His day nurse, Stacy, is awesome, and we have been swapping baby stories. She has an eight month old daughter. The normal ratio of babies to nurses is 2 babies to each nurse, but there are two babies on our pod that are critical enough to need their own nurse. A new baby was admitted today after being born at only 25 weeks and was assigned to Stacy. She said she could take her because I pretty much take care of Boston by myself. It is nice that he is so easy to take care of. I just do the normal things, like feeding and changing him, but I also know how to fix his wires and alarms in case anything goes off, and I can navigate through all of the machinery to get him in and out of his bed without any help. I can't wait until it is just him without any wires or paddles or masks or foot wraps.
2) My orange bracelet that lets me go in and out of the hospital without going through security.
3) When Boston opens his eyes and looks around with his mouth in a little "o."
4) The free meal vouchers to the cafeteria - yum, chicken fingers.
5) The little half-smiles Boston makes right after he eats and has fallen back asleep.
6) The Ronald McDonald room where I get to sleep in between night feedings -- did I mention it has a sleep number bed?
7) The fact that Boston is able to sleep on his bed under the bililight without fussing.
8) Getting to go home at night for a few hours to put Clark to bed.
9) Lab updates in the morning when there is good news.
10) The support of my friends and family :)
Saturday, February 7, 2009
He had lots of good wet diapers during the night and so we no longer need to supplement him with a bottle after he is done eating.
He gained weight since yesterday -- just about 40 grams, but that is moving in the right direction. He had been down about 8% from his birth weight.
His protein in his blood is still normal. It is 3.5, which is the bottom of normal. It was 3.4 then 3.8 then 3.6 and now 3.5 -- still in the good range. If his blood protein gets too low then he will start to swell which will cause problems. Even if he has protein in his urine, if he still has a normal level of protein in his blood then he will not have the complicated side effects.
His immune system levels were good -- normal white blood cell count, etc.
The only number we are still watching is his bilirubin level. This is the number that tells us if he is still jaundiced. His number went up from yesterday and so he will be on the blanket with the light for at least another day, maybe two. His number is not awful, just high, and so they don't have to take any more drastic measures than that. It is a blessing that he is sleeping lots and doesn't mind being on the bed. We are so lucky that he is a sweet, content baby. He sleeps for three hours, eats and smiles at me, and then goes back to sleep to repeat the cycle.
It's been quiet today because I've asked people not to visit. Boston is doing great and I wouldn't mind visitors, but the Intensive Care Nursery is not a very visitor friendly place. This morning there were two emergencies with two other babies near Boston and it was like watching drama tv -- when it was all over the other members of the staff were telling baby's nurse how she had saved his life. She was visibly shaken by the ordeal. It was amazing to see how wonderful the staff is and how they are able to handle everything in a crisis situation.
We were able to get all of the ultrasounds and the eye exam today -- even though we had thought we would have to wait until Tuesday. No cyst in front of the tailbone; head ventricle still on the high side, but not concerning; and the kidneys are formed correctly, although slightly bright. Dr. Van de Voorde was not concerned with the ultrasound as it did not affect our plan of care.
Our best news of the day came with the eye exam -- Boston's eyes are normal. If he ends up being confirmed for Pierson's we will have to continue to watch them, because they could all of a sudden get worse - but it is great news that his doesn't have any blindness, retinal detachment or pinpoint pupils right now.
I am continuing to stay at the hospital so I can feed Boston every three hours. At night I have been able to find a bed in the Ronald McDonald rooms, so I can sleep for an hour and a half in between night feedings.
Boston will probably be under the lamps for another day or so depending on what his levels are on Saturday. We will continue to watch him closely over the weekend, as this time is when the other effects of losing protein, such as swelling and lack of appetite start to occur. Whether he gets worse over the next few days will tell us a lot about the plan of care we can expect.
Friday, February 6, 2009
We were transferred to Children's Mercy yesterday afternoon around 3. Thanks to everyone who called or stopped by while we were at St. Luke's. It was a whirlwind of activity as we crammed as much visitor time as we could into his first day and a half in the world. Last night I got to sleep about 5 hours, but before that I had slept maybe four hours since Monday night.
Medical news: Boston's initial urine test at St. Luke's showed that he had large amounts of protein in his urine, which was sufficient for the kidney doctors at Mercy to say "Okay, yes, there is something wrong with the way his kidneys work." Having large amounts of protein in your urine is the hallmark sign of congenital nephrosis. Our plan for testing and care has not changed -- we will still need at least a week here at Children's Mercy to get a more accurate picture of what is going on with his body -- the doctor's look at trends, not snapshots, so while we will try to be as forthcoming with the updates as possible, be prepared for us to not know anything certain for a while.
More medical news: while Boston does have a large amount of protein in his urine, and thus likely has congenital nephrosis (which would mean a kidney transplant), the other signs of "Pierson Syndrome" (which can be just congenital nephrosis or congenital nephrosis and other things) are not presenting initially. His big brown eyes do not have the "pinpoint pupils" but we are going to have a full opthamalogic exam next Tuesday. He has good muscles and reflexes. He is eating really well. All of these things could change, as this syndrome can be progressive (things not being there at first and then showing up later).
Support: we would appreciate it if people would not ask us for medical updates or about what is going to happen with Boston's condition. As far as we are concerned, he is just a normal baby. We get comments from the doctors and staff that he is a normal baby; that he "looks great" and is doing all of the normal things that normal babies do, except he has a large amount of protein in his urine. It is too early for us to speculate about what his tests could mean; it will just take time to know anything. The earlier posts in the blog have more information about congenital nephrosis and the tests that are going to be done this week. Also, while this news is not "optimal," it is what we were planning for and we are proceeding with the plan that we had set up before he was born. We are in good hands with the doctors here. We don't want people feeling sorry for us or treating us or Boston any differently.
Fun news: Boston really is awesome. He is beautiful and smells good and loves to cuddle. He knows his momma and his dadda and while he spends most of his time sleeping, he also has alert times when he just stares up at us. Yesterday he was awake and kept trying to grab Clark's shirt with his hand, but Clark was not interested. I don't think Clark has figured out that Boston belongs to us yet. I am sure that day will come. :)
Communication reminder: Children's Mercy is a blackout zone for cellphones, so if you get sent to voicemail, you can bet that we're here.
Wednesday, February 4, 2009
Thursday, January 29, 2009
Wednesday, January 28, 2009
Tomorrow morning we need prayers -- I have my regular NST at 8:30 and then at 9:00 we are going to be facing some decisions. On Monday during my office visit it was discovered that Boston had flipped from his previous head down position to a head up/face up breech position. He has so much fluid to move around in that it allows him to turn when most babies would not be able to. At 9:00 tomorrow I have what Lynn called a "position check." If he is still in breech, then Lynn said that we will "talk." This "talk" will focus on the decision of whether to try and turn him manually into a head-down position and then most likely induce right then. I'm not sure what my options will be if he is head down or if he refuses to turn. I know that if I go into labor while he is breech then I will almost definitely have to have a c-section. The risks of cord prolapse are even higher when the baby is in breech and most doctors just don't try vaginal breech delivery any more -- the risks are just to high.
We will try to update as fast as we can tomorrow -- but be expecting some news :)
Monday, January 26, 2009
Clark, Brian and I had a great time on Saturday building his bear. Clark and I had previously done a “scouting mission” just the two of us earlier in the week when it was less busy in order to make sure Clark had the necessary time to pick out what he wanted. I took each bear, dog, cat, turtle and other animal off the shelf and handed it to him. He shook his head almost every time, rejecting them one by one. I knew we had found his bear when he reached out excitedly and said “Heart, Heart.” He had chosen “Champ,” a champion fur kids. It was fitting, because part of the purchase of Champ goes towards the Bear Hugs Foundation which makes grants to causes that support children’s health.
Clark next picked out a sound for Champ. He decided on the “Roaaar.”
Clark’s favorite part was watching Champ get stuffed and getting to put the heart inside. He had hearts in both fists and wanted Mom and Dad to kiss them before they went inside.
Friday, January 23, 2009
I read in Ecclesiastes 7:8 today that “Finishing is better than starting; patience is better than pride.” It made me realize that as much as I am eager to start Boston’s life, it is better to finish this pregnancy with a strong and valiant spirit, with “cheerful and hopeful endurance.” Many verses in the Old Testament talk about waiting patiently. Psalm 40:1 says “I waited patiently for the Lord to help me and he turned to me and heard my cry.” Psalm 27:14 says “Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.”
This is definitely an area where prayer would be appreciated. I want to be filled with the calm and peaceful assurance that God has determined all the days of Boston’s life, including the day he is to born. In the first chapter of Colossians, Paul is outlining all the prayers that he has for the church in Colossae. He closes that section of the chapter with this message: “We also pray that you will be strengthened with all his glorious power so you will have all the endurance and patience you need. May you be filled with joy, always thanking the Father.” That is my prayer: that I will be strengthened with all of God’s glorious power so I will have all the endurance and patience I need.
Wednesday, January 21, 2009
This whole pregnancy has been filled with unexpected events and as much as we have tried to plan ahead of time, there are still many things that are uncertain. The traditional, typical needs of a family with a new baby will not be our needs; we will not be the family at home with a healthy baby, although we hope that someday we can get to that point. I will provide as much information as we have now, with the understanding that we will update the info as it comes available and as our needs change.
What we know we can use:
· Gas cards – we will have to make trips back and forth to St. Luke’s and Children’s Mercy several times a day and the gas will add up.
· Non-perishable food and snacks - for at least the first week we will be in the NICU, so easily portable food that we can take with us will be appreciated. Things like Progresso Soup, dried fruit and nuts, packets of instant oatmeal, etc. would be appreciated. Also, apparently Children’s Mercy has one of the best cafeterias around, so money for a hot meal there would also be appreciated.
· Frozen casseroles/dinners – we are not sure when we will be at home, but are planning on spending one meal a day (probably dinner) at home as a family. Food that can go from freezer to oven would be appreciated. We even bought a full-size freezer to put in our garage for this very purpose.
· Clark care/play dates - Brian’s parents are going to try and come up for at least part of that first week to stay with Clark, but if we have to be in the hospital for longer than a week then we could use some help in watching Clark so Brian can be at the hospital too. Also, even if we get to come home, it is likely that Boston will be more susceptible to infection and thus not able to have a lot of visitors or leave the house. I am sure Clark will not like being cooped up and so play dates would be appreciated.
· Rides to the hospital – this is a “we hope not” request, but if Sarah has to have a c-section then she will not be able to drive for a couple of weeks. Because she wants to spend a lot of time with Boston, we would appreciate having some people to call on for rides.
· Gifts – because we don’t know when we will get to use any clothes or diapers, we are asking people to hold off on these gifts for now. I looked online for ideas and several websites suggested: books to read to baby, books and music for Mom and Dad to get through long bedside vigils, toys for the older siblings, photo frames to put by baby’s warmer in the NICU, movie tickets (for a break for Mom and Dad), gift cards to Wal-Mart and Target for necessities, etc.
· Congratulations – we plan on celebrating Boston’s birth with all of our hearts and invite you to join us. He is our little boy and we are going to shower him with love and affection from the moment he is born. Cards, emails, balloons, flowers, etc., will all be appreciated as you join us in celebrating Boston’s arrival.
· Prayer - once Boston arrives I am anticipating having an abundance of prayer request and praise reports to pass along. We will keep the blog updated with the specific prayer needs that we have and would love for you to target your prayers in kind.
A few more things:
Updates – we know that you will want to know how Boston is doing and how we are dealing with things, but we do not anticipate being able to make, take, or return many phone calls, especially since cell phones are not allowed in the NICU. We will try to update the blog regularly and will rely on you to check it if you want information. Please understand that we appreciate and acknowledge your interest, but have been told we will not likely have the time to respond personally to every call or email.
Visitors – we rely on you for support and comfort. We have been told that parents are divided on the issue of visitors in the NICU. We know the NICU has strict rules on who can visit and when and that some parents are overwhelmed by visitors. When we have a better idea of what is going on we will let you know. Also, we know that anyone who visits needs to be very healthy, so keep that in mind.
Homecoming – we are hoping that our homecoming will be as soon as possible. We were told that coming home with a new baby is cause for celebration and a time for renewed interest from others, a time for gifts and dinner, visits and help.
Paranoia – we were also advised to let people know that we may be overprotective of Boston if he has to spend much time in the hospital. In case we are cautious of other people holding him, don’t get out much, or decline to attend crowded events, please understand that we are doing so with Boston’s health in mind and hopefully it will pass as he grows in strength and health.
If you are willing to help with Clark care, rides, or meals once we get home, please email us at firstname.lastname@example.org and we will contact you when we know more.
Donations and gifts can be mailed to us or dropped off at 14630 W. 85th Terrace, Lenexa, KS 66215. Please specify what you would like it to be used for, unless it is food, in which case we can figure it out on our own :).
We can't tell you how much we appreciate all of your prayer and support. It is what gets us through.
Tuesday, January 20, 2009
Monday, January 19, 2009
I am a big fan of Tom Petty and the Heartbreakers. I bought their greatest hits when I was high school and spent many a day singing along to their lyrics. Often those songs will come to mind, as one did this morning. It’s the chorus to “The Waiting” by Tom Petty (sing it with me):
The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part
That pretty much sums up how I feel right now. Boston could come at any time within the next three weeks. We don't know when, and there is no way to know. I have trouble making plans beyond today because I don't know if I will be able to keep them. We just have to wait -- take it on faith and take it to the heart.
The ultrasound revealed five noteworthy things:
1) Our prayers for Boston's growth have been answered in abundance!!! Yay God!!! If he does have any sort of congenital nephrosis, his size will give him a great head start on the growth that is needed for him to reach transplant size. Right now on the ultrasound he is measuring 8 pounds 5 ounces, give or take a pound. The fact that he is somewhere between 7 and 9 pounds makes me soooo happy! Trust me, I can feel how big he is; he is definitely taking up a lot of room in there.
Because of his size, the docs think he could come any time. He is head down and in position. They have scheduled another growth scan for three weeks, if I am still pregnant then. If during that scan he measures, say, 10, 10 and a half pounds, they are going to punch his ticket and induce. This gave me at least some measure of comfort to know that there is an end date in sight, even if it is still three weeks away.
2) Boston's amniotic fluid level is high. We have been praying "that the level of his amniotic fluid will stay normal in order to allow his lungs to develop and to reassure us that he does not have complications." That prayer was answered as his level stayed normal/high normal throughout the pregnancy; however, he has moved out of the "high normal" range into the "high" range. Normal levels are between 5 and 25; Boston's is 34.11. The sonographer called it his "swimming pool." High levels of amniotic fluid occur in about 1% of pregnancies and while it is not harmful to either Boston or I, it could indicate an underlying problem, such as a congenital defect or block in his gastrointestinal tract. High levels of fluid happen because he is producing a lot of fluid, or not swallowing enough fluid, or a combination of both. The complications I have experienced so far include discomfort for me, because he and his fluid are taking up so much space and squishing everything, and uterine contractions (ouch!). High levels of fluid also indicate that labor could happen soon -- I am basically a water balloon that could pop any time. The doc told me to expect him any time and to keep extra towels in my office and car. High levels of fluid also increase my risk for an emergency c-section, if the placenta ruptures or the cord enters the birth canal before Boston's head does.
3) The doc spotted a fluid-filled cyst in front of his tailbone. Boston has gotten so big now that it is hard to see anything clearly on the ultrasound, but the doc thought she saw something in front of his tailbone. She did a thorough check to make sure that his back and spine were closed, and she was reassured that they were, but still saw the cyst. This is not something they have seen before. We discussed the possibilities of what it could be: nothing, part of his intestine that has dropped down, or a block in his rectum. This finding doesn't change our plan for labor and delivery, but we added a pelvic sonogram to the list of tests that Boston will have once he is born. He also will not be able to eat until they can rule out a block in his rectum.
4) The ventricle in his brain was still enlarged: anything over 1 cm is large and his was 1.2. Because it has been consistently just a bit over 1 cm throughout the pregnancy, we were already planning on doing an ultrasound of his head.
5) Otherwise, Boston looked great. We got to see his chubby cheeks and all the fat he has put on, his big head of hair and his hands and feet. His kidneys looked normal, but to remind everyone, that doesn't mean he doesn't have kidney problems. Boston's AFP level was 65 times too high, and 98% of babies with an AFP over 10 are born with abnormalities. That percentage increases as the level increases. From a medical article: "the difficulty in confirming congenital nephrosis before the baby is born is the lack of ultrasound findings. Although bright and slightly enlarged kidneys have been described, in most the kidneys appear normal, the amount of amniotic fluid is normal, and a large placenta, which may occur, does not appear until late in the pregnancy." Basically, what the article says is that if you have an extremely high AFP and everything else looks fine, you can't rule out congenital nephrosis until the baby is born.
These statistics encourage me to put my faith in God. They tell me that medically, logically, it is likely that Boston will not be born okay. Because the odds are against him, and his chances by the world's standards are not good, it makes me realize how important God's intervention is. We cannot do this without Him. This is too big for us; we cannot do it on our own. God will have to heal Boston.
That's the nice thing about waiting -- it gives you more time to pray :)
Friday, January 16, 2009
St. Luke’s: I met with John Callenbach from the neonatology department and he outlined Boston’s initial plan of care. Because we do not anticipate any problems with delivery, he said I should be able to deliver in a normal room, as opposed to an operating room where there would need to be ventilators, more staff, etc. Once Boston is born, he will be immediately admitted to the NICU, although this is more of a paperwork thing than a location thing. Provided there are no imminent threats to his health, he should be able to “room in,” i.e., stay with me, any time he is not having tests done.
Pierson Syndrome is virtually impossible to diagnosis in the first couple of days because Boston’s kidneys won’t have kicked in yet and a lot of his numbers will reflect my physiology and not his. It also means that if he does have the syndrome, we are hoping to get to spend a couple of days with him before he gets seriously sick.
In the first couple of days, Dr. Callenbach anticipates monitoring his blood and urine for protein, doing an eye exam and an ultrasound of his head and watching his growth, eating patterns, and for any sign of swelling.
We do not plan on being at St. Luke’s for more than a couple of days. I hope that Boston can stay there until I am discharged from the hospital, which will be after 48 hours, or 96 hours if I have to have a C-section.
The visitation policy at St. Luke’s is extremely lenient on the mother-baby side and provided everything is going okay, the first couple of days will also be prime visitor time for those of you who want to meet Boston because once he is at Children’s Mercy, it is pretty much Baby Alcatraz and only two people can be by Boston’s side at a time and that includes parents, so if Brian and I are both there, no one else can be (more on Baby Alcatraz below).
Children’s Mercy: After our first couple of days at St. Luke’s, Boston will be transferred to Children’s Mercy for at least a week. We were hoping that if everything was going well that we would be able to go straight home from St. Luke’s with follow up at Mercy, but during my Wednesday meeting with Dr. Kilbride (neonatologist a.k.a. baby doctor) and Dr. Van de Voorde (nephrologist, a.k.a. kidney doctor), they told me that they wanted Boston to come to Mercy A.S.A.P. They said that it wasn’t safe for him to go home because even if he looked like he was absolutely perfect, he could deteriorate quickly, so it was necessary to keep him under close supervision for at least a week. They seemed kind of on-board with waiting until I got discharged from St. Luke’s, but they didn’t want a lot of testing done until he was transferred to Mercy. If he gets sent to Mercy right away, then I will have to get a day pass to go visit him there, not something I want to be doing so soon after he is born.
Once he is at Children’s Mercy, they will continue to do the same blood and urine testing and monitoring. They will also do renal function tests and likely an MRI and a test to look for other eye defects. If necessary, his treatments could include protein infusions, nutritional supplements, a drug to reduce any swelling, and antibiotics.
Our best case scenario, if he is doing absolutely perfect, is to get to go home from the hospital after a week or so. It is not uncommon for babies with mild nephrosis to stay for weeks and the more serious babies stay for months before going home, and some never go home at all.
So we are preparing for Children’s Mercy to be our “home away from home” for a while. I called it “Baby Alcatraz” because of their strict, albeit necessary, visitation policy. Only 2 visitors are allowed at the bedside, including parents, which means if I am there (and I plan to be there a lot), only one other person can be there with me. I can’t have both my parents there at the same time, and if Brian is there with me, then no one else can be there. However, I am sure I will welcome the company and be more than excited to share Boston with the world; I just want to warn everyone that this will be on a one-at-a-time basis.
The thing that upsets me the most about the visitation policy is that right now the NICU is on “Sibling Lockdown” due to flu season, which means Clark can’t visit at all. I am working through the sorrow of knowing that once Boston is admitted to Children’s Mercy and until the ban is lifted or he can go home, we will not be able to be together as a family. We will try and cram as much “family time” into the first couple of days at St. Luke’s as possible. I know that this will not be very long (if we get out in a week) but the ban may not lift until March, and if we are there long-term, then it will be very strange to not have Brian, Clark, Boston and I all together.
The NICU at Mercy is very open – the babies line the walls rather than being in their own rooms. So every few feet there is a baby with a couple of chairs in front of it. I plan on camping out in one of those chairs and becoming very well known to the staff. I can have water while I sit next to Boston, but no food. Breastfeeding moms get four meal vouchers a day to use at the cafeteria, which is directly below the NICU. They also provide “nap rooms” and showers to use during the day. Even though we are only going to be (for sure) there for about a week, I am reading about parents and the NICU, how much time to spend there, how to schedule the day, etc. I am planning on being home in the evenings with Clark from at least 5-8 pm, so we can maintain our usual schedule, and I am planning on sleeping at home, and the rest of it we will just figure out. There are no cell phones allowed in the NICU, so I will have to take regular breaks to get messages and send updates. There is a computer for parents’ use in the NICU, so I will be able to update the blog from the hospital (yay!)
I can’t wait to meet this little guy! Even though the beginning of his life will be unconventional, I feel better having a plan and knowing what to expect in the event of the unexpected. Let me know if you have questions; there is probably something I left out.
Monday, January 12, 2009
Boston wasn't reacting the way he should -- although he was moving around a lot, we weren't seeing the same good accelerations in his heart rate that we had seen in the past.
After 45 minutes on the monitor (as opposed to the usual 20), Julie took my results to be analyzed by Dr. Lu. This was a first, as they are usually clear cut enough for Julie to release me on her own. Dr. Lu gave me permission to leave, but asked about whether I was feeling the contractions and to be extra-vigilant about baby-movements.
The plan right now is for me to come back in for regularly scheduled testing on Thursday.
I received a benefit from my overzealous pursuit of information last week when I found out that Boston's kidneys had been "bright" again on his November ultrasound, a fact that the doctor's failed to tell us. I requested copies of my ultrasound reports to send to the doctor's at Children's Mercy and as I was reviewing them, I saw that on his November ultrasound, the doctor had reported that his kidneys were large and "mildly echogeneic." Echogeneic means that there are more sound waves (echos) in that area, resulting in the area looking bright. I was shocked when I read this, because I always ask lots of questions during our ultrasounds and the impression that I got from the doctor was that everything was fine during our November ultrasound.
We have had another sonogram since then, and the ultrasound report from that sonogram reported that Boston's kidneys looked normal.
The two things I took away from this experience were:
1) We have thought that Boston's kidneys looked normal since his September sonogram; now we know that is not true: they were bright in November.
2) I need to make sure that the doctors are giving me all of the information, even if that means reviewing my chart after every visit.
Wednesday, January 7, 2009
First, there is now a link on the right hand side called "Subscribe to Baby Boston's Marathon." This will allow you to add Baby Boston's Marathon to your homepage and see in an instant if there have been updates. I use this method to stay up-to-date on the blogs that I follow and can check all ten of them at once.
Second, for those who are interested, I am willing to send out an email notifying you that I have updated the blog. Send me an email at email@example.com if you would like to be added to the email notification list.
If anyone has other ideas on how to notify readers about blog updates, I would love to hear them.
Monday, January 5, 2009
This morning I also had an office visit with Lynne, the nurse practitioner. I was happy to report that I was experiencing some relief from such bad heartburn and that I had no issues to report other than the run-of-the mill pregnancy woes. She measured my abdomen and said I was right on track. She also used a portable ultrasound machine to check out Boston's position and fluid level. That was really cool. The picture on the machine was grainy, but she was able to find out essential information in just a couple of minutes, like the fact that he had plenty of fluid surrounding him and that he was almost head down, but not quite. If you painted a clock on me, with 12 at my head, he would be between 7 and 8.
I have another NST on Thursday, and two more next week, and then a growth scan on the 19th. Those are my favorite, because it is basically a 45 minute show all about Boston. I will keep everyone updated on the testing -- and hopefully there won't be too much more before Boston arrives!