Monday, October 19, 2009

Two is hard how do we do three?



Well Brody has been home for almost two weeks and doing great. We sure didn't really know his personality until now. He is kinda grumpy. Well I guess it is expected. He doesn't like to be moved or carried around, I guess he isn't use to it. He startles very easy and hates his feet touched. He sleeps pretty well normally 3-4 hours and then he is hungry. He is in our room for most of the night then one of us normally goes down stairs with him. He has had 4 doctors appointments so far and all have been great. He is currently 8 pounds 6 ounces. He is still on oxygen and we feel he doesn't really need it but it does make us feel a little more comfortable.
Drew is doing great. The same week that Brody came home Drew had his major reconnection surgery. He also has a corrective surgery to his eyes the same one that Brody had. The surgery was a little under 9 hours. He did well and came through successfully. When they went in they found an additional perforation that they had to cut out. With two different spots reconnected is a little more risk. Over half of his large intestines is cut out and he has two different reconnection spots. Long term the doctors say he shouldn't have any issues. His eye surgery also went great. He passed stool a few days later which is a great sign that things are working well. We were very happy about poop. Feeding him is risky and was put on hold to help with growing and healing. Saturday he was feed 7 cc and did great. He was feed with a bottle which is another mile stone because he has only had one bottle in his 126 days. He isn't the best at eating and is being taught how to breath, suck, and swallow. It seems that he is waking up ready to eat. This makes us really happy because we think he is hungry and never really gets that full milk drunk feeling that babies need to sleep well. Drew is amazing and we can't wait to get him home and allow him to be a baby and not a patient.
Big sister is hanging in there. She really likes it when both of us are home but has a little bit of a hard time when only one mom is here. I'm not sure that it is having Brody home or being stuck in the house all the time. She isn't use to being in the house all the time. We normally take her everywhere. Wonder what she will think when we bring Drew home?

Wednesday, October 7, 2009

Right on Time

Well after 109 days in the NICU our little B-man is home. He made it home the day before his due date. Our first night went pretty well. He is on oxygen only 1/8 of a liter flow. He slept in our room last night in the pack-n-play and he is a very loud sleeper! We would have slept better but we kept checking on him every little noise that he made. So far he seems to like his new surroundings. The oxygen equipment has taken over our house.It looks like he will be on the oxygen for a month or two depending on what the pulmonologist says when we followup with him. He had his first pediatrician appointment today and the doc was pleased with how he looks and sounds. It is definitely different bring home a preemie than it was the first time around with Coo. Speaking of big sister, Coo she is doing pretty well with him she just asks "was at" when he cries and then says hi to him. We feel incredibly lucky despite having the challenges that we have had with Brody thus far. Welcome home Brody!

Friday, October 2, 2009

Back together and competing to get the most attention.

The boys are fifteen weeks old today and finally back together. Both boys are a UCD and it is nice to have them together. We are able to spend more time with them and a little less traveling for the two of us. Don't get us wrong we do miss our MSJ. Brody came over to UCD Wednesday for his scheduled surgery on Thursday. He had a bilateral hernia surgery and was circumcised. He did better than expected. We were a little worried because last time he had a procedure (eye surgery) he had a hard time getting off the vent (breathing tube)He was out of surgery at 10:00 in the morning and by 3:00 he was extabated. He is now back on the nasal cannula on one liter flow where he was before surgery. We think the the worst part for him was the not eating. His first meal was at about 2:00 on Friday and he was hungry. He ate 75 cc really well from a bottle. He was eating 62 cc prior to surgery. We were very excited for him to do well and have this surgery, one step closer to coming home. Today (Friday) in rounds the plan is for him to come home next week. The last few tests and procedural things make it seem so close and a little scary.

Although we were very happy that Brody did so well yesterday we had quite the scare with Drew. Yesterday when Dee Dee was holding Drew he had a severe episode of apnea and bradycardia. Bradycardia is not super uncommon for the boys but they normally come back immediately if you rub their backs. Drew did not come back he completely stopped breathing and his heart dropped very very low. He did this 8-9 times yesterday in total. They had to bag him to get him to start breathing again. They did a work up in him and it looks like he has a staph infection. He also had his vaccinations on the day before these episodes. We asked if this could be related to his vaccinations the doctors don't seem to think that is the case, even though some of the nurses have said that they have seen this in the past. At any rate, he is acting more like his old self today and we were happy to see that.

Through the last 105 days we have continually struggled with celebrating the victories and trying to find the good in the most difficult times. Friends have really helped use through this difficult time. Aunties (friends) have really helped use and touched our hearts by helping with Carleigh and going out of their way to visit Drew and reading to him. In fact the only one that has held the boys besides us and hospital staff is Aunt LO. We are extremely grateful for our friends and appreciate them from the bottom of our hearts.

Tuesday, September 22, 2009

38 Weeks



Boys are two weeks away from there due date and it is hard to imagine Amber being pregnant all this time. This has to be the slowest 38 weeks ever. Well Brody is getting closer to coming home. Brody is scheduled to have his hernia surgery at UCD on October 1st. He getting bigger and bigger everyday. He is currently 6 pounds and 14 ounces. He has been nipple feeding well prior to the eye surgery but since he hasn't been doing as well. We hope that he is on full nipple feeds by the time he goes to UCD. He will be going over to UCD on the 30th and we hope that communication for his care is pretty smooth.
Drew is hanging out trying his hardest to gain weight. He is around 1925 grams and needs to be between 2000 and 2500 gram to have his surgeries. His weight goes up and down and he is just hanging out. He has had to have his stoma open to room air making it hard to have his arms and legs free. He is often very upset wanting his arms and legs free to move about. He has a couple of great primary nurses and that has made it easier for us. His primaries have been holding him and loving him when we are not there. We know that no loving is like his mommies loving but is very comforting to us that he has people that care about him visiting him and caring for him.

Monday, September 14, 2009

37 weeks

Brody is a big boy! He weighs six pounds and 3 ounces almost as much as Coo when she was born. Last week Brody had eye surgery because the blood vessels have not developed properly, common in preemies. He had a hard time coming back off the vent after his traumatic experience. Today five days after he seems to be more alert than even before the surgery. He is nipple feeding most of his feeding and doing well. We were actually able to bring in some of his clothes to wear and that was nice. Brody is doing well and we have heard a lot of talk about him coming home. He does have to go to UCD before he comes home. He has a hernia that he has had since birth. We have know about it for awhile but were not aware that he would have to have surgery on it prior to coming home. He may come home on oxygen but we are not sure at this point.
Drew is also doing well. He is off oxygen and doing great. He isn't gaining as well as we all would like but he is slowly gaining. Instead of feedings at 3-6-9-12 he is being tube feed continuously. Since the continuous feedings have started he has been gaining. He weighs 1786 grams which is about 4 pounds. They can't reconnect his intestines until he is 2000 grams. Once he is reconnected he will need a shunt then on his way home. He is doing great.

Questions or Answers

It wasn't too long ago that a mother of twins born at 24 weeks and 3 days told us that it just gets harder the closer they get to coming home. When she said that I had no idea what she meant at the time. Now I understand. The waiting and anticipation is driving us crazy. So many details! Although Amber's work is so supportive it is hard to be away this long and not know how long until she will be back. We are slowly but surely getting the boys stuff ready and putting their room together. Final touches will be put in after our shower/ welcome party.
At times we wonder what the future holds for our kids and how this journey will all play out. What will they remember? One day we will read this blog to them and I hope it gives them strength and hope. Will they ever know how strong they are and how proud we are of them? We may not have all the answers at this time but we will always be changed for the better because of the birth of our children. Brody and Drew have fought so hard to be here and although it was hard we have been honored to join their fight. Right now we use this blog as a way to keep friends and family updated on the twins journey. We also have given this blog to other mothers that are in our situation. We have heard that Brody and Drew's story have given others hope.They amaze us everyday and we are so proud that they have helped and amazed others.

Monday, August 31, 2009

Still doing well

Well quick update:
Drew is doing GREAT! He went down to one liter of oxygen last week and did great. Today he went to room air. Amazing. The doctors are very happy with his progress but concerned about his weight gain. He weights 3 pounds 6 ounces and needs to weight 4 pounds 5 ounces before they can reconnect his intestines. It is common for people with stoma's to have trouble adsorbing food because it is in the intestines long enough. It has been nice for us because we have been able to hold Drew and bond with him. He has a great little personality, so alert, attentive, and happy. He smirks a lot and smiles showing off his very cute dimples. He loves his Binky and can hold it in all by his self. For all he has gone through he is very content holding his hands together and listening to the voices of his favorite nurses. Go Poo Go!
Brody is huge. He has no problem growing at all. At 35 weeks he is 5 pounds and 6 ounces. He is eating a whole bottle when he is feed it twice a day. He has been breastfeeding and latches right on. Brody is still on one liter and doing well. Mercy is trying to get him off. Brody has weekly eye exams since he has been in the NICU. They are tracking the growth of the eye due to the prematurity and the oxygen that has been provided to assist in breathing. They will need to do eye surgery this week or next week to help the direct the blood vessels in the right areas and prevent the eyes from going blind. This is pretty routine procedure that is common in micro preemies. Brody is doing well and could be coming home in a couple of weeks and by the looks of it if Drew didn't need another surgery her would have been to. Can't wait to get them home but very scary at the sametime.

Tuesday, August 25, 2009

Baby Steps



Well both boys are making baby steps in the right direction at 34 weeks gestation and 9 weeks old. Drew has recovered from a pic line infiltration that caused a large amount of fluid to accumulate around his lungs. A chest tube was placed for a few days later he no longer needed it and it was removed. We sure could tell he felt better after all the fluid was drained. Drew is off the vent (breathing tube) and placed on a nasal cannula. We are both very happy to have him off the vent because it is a step in the right direction and we get to hold lil Poo. He is slowly getting the tubes removed because he is moving in a positive direction. Drew is being feed full feeds at 32cc and doing really well with that. The breast milk is agreeing with Drew's gut issues and he is passing stool well. Drew weighs 3 pounds and 7 ounces.
Brody is huge! Well he weighs 4 pounds 12.5 ounces. He is also on full feeds at 42cc. Brody has been drinking a bottle a couple times a day and breastfeeding. Brody graduated from the isolette to a big boy crib. Weekly the boys eyes are tested to make sure they are developing correctly. Brody may need a routine eye surgery to allow his eye vessels to develop correctly. It is really strange but on more than one occasion they have mentioned that Brody may come home in a few weeks. So weird, and really scary to think we will two of our kids at home under the same roof and one still in the hospital.
The boys make us feel like we can do anything we are very proud of how hard they have worked to be with us.

Wednesday, August 12, 2009

Brody


Well Brody has been a really good boy lately! He is twin A and the one that wanted out so bad. He really shoud have discussed this with his brother. Brody has proven that he was ready by not needing one surgery in two months. I no way is he out of the wood but we acknowloge his progress. It amazes us how different the boys roads have been.
While talking to Brody he felt that he need his own post. Brody is 3 pounds and 13 ounces. He is still on full feeds and 20 calorie added. He loves to be held and snuggled. He was just moved up to a bigger binkie. He is currently 32 weeks and in the next couple of weeks he will be getting ready to nipple feed. They will start by putting a couple of drops of milk on a binkie. He love his binkie! Very proud of BOO and how hard he has worked.

Drew Poo

We have been asked a lot lately to update the blog in regards to Drew and his status. The truth is we don't really know anything. We have been told that he doesn't have NEC and he doesn't have any strictures. UCD has irrigated his stoma a couple times and they were able to pull out rock hard stool. He seems to be feeling a little better. He has a staph infection that is being maintained. Why the stool is backing up we just don't know.

Wednesday, August 5, 2009

Back at UCD


Well we just got a call from the resident at UCD, Tuzdy (yes people that is pronouced Tues-dee). She does NOT in fact beleive that Poo has NEC, although they are still watching him with a series of x-rays and holding his feeds, and he is back on the vent. BOO! But they actually think he has an ileus. They are not sure yet and they will continue to watch him but an ileus would be more favorable diagnois than NEC. He is still not out of the woods as she put it. Our lil guy has been through so much and we are really hoping that it isn't NEC. Drew Steven, you are a a miracle and you give us all strength!

Big Sister COO








Thought that we would do a post about the boys wonderful big sister, COO. She is such a proud big sister. When the boys were in Mamma's belly she would point and say "Bebbies" and give them lots of love. Then Amber went in to the hospital for 21 days and things were very confusing for her. She would get very excited to go to the hospital to see Amber, but very mad when Amber couldn't pick her up or do anything with her. She really missed her Momma! She still asks about the babies and actually thinks that they are living in Amber's phone. (because that is where we show her pictures of her brothers) We are very proud of our Carleigh girl. She has had to be juggled around and watched by so many different people. (thank you everyone) But despite all that she is still been our happy girl. She brightens our spirits even on the worst days. I don't know how she knows but the bad days are her most loving and sweet. Her four legged brother and sisters are not so perceptive and go and roll in the dirt. We know that she will have many more adjustments when the boys come home but we don't doubt that she will be a wonderful big sister. Mamma's are very proud of our Coo, Poo and Boo. It is really hard to believe after struggling with infertility for 18 months that we now have 3 beautiful children together. We are truly blessed to have them and each other!


Tuesday, August 4, 2009

Pissed!


This picture was taken on the first day that Amber held both boys together. I certainly don't want to speak for her, but I think it is safe to say she was overwhelmed with love! Too bad this won't be happening again any time soon.
After a week of our sons being together us getting to hold both boys and being so happy we got bad new tonight. Drew has NEC again (necrotizing enterocolitis). He was tranferred back to UCD. He is on watch and may have to have surgery again we are not sure. I guess he was pretty sick today. We are so upset. This little man has been through so much and it just doesn't end. UCD is really the best place for him if he does, in fact have to have surgery again it just makes things super hard for us to juggle things around. On the bright side, he is on a regular nasal cannula and doing well. He weighs 3 lbs, 5 0z.


Brody continues to do well. He is growing and growing. He weighs just over 3 lbs. Not much to report on his end, which is good.

Tuesday, July 28, 2009

Together again

Just a quick update to say our boys our in fact, back together again and we couldn't be happier. They seem to be happy too!

Monday, July 27, 2009

O' Happy Day

Great news for today. Drew is coming back to Mercy after 4.5 weeks away at UCD. Having them back in the same hospital will make it so much easier to visit them, not to mention they get to be together! We are so excited. Here is hoping it actually happens! Drew is actually doing very well right now. He is eating 10 ml every 3 hours and is tolerating it beautifully. He is still getting the fluid from his brain tapped every other day. He weighs 2 lbs 11.7 oz. He wore his very first outfit on Saturday! We cannot believe how much he has grown and even though he has been through a lot he is doing so well. We are so very proud of him!

Brody continues to do awesome! He is off his C-pap and on to a high pressure nasal cannula. He is on full feeds (22 ml every 3 hours with added protein and calories) and continues to gain weight. He weighs 2 lbs, 9 oz. He is wearing clothes like a GQ model! Brody is very happy that his brother will be joining him, they will be celebrating tonight with shots of boobie milk!

Monday, July 20, 2009

Monday update

Brody is still doing very well. He is still off the vent for a week now, whohoo! He is on c-pap and doing very well. His feeds are up to 20 ml every three hours and he is doing great with that. He weighs 2 lbs, 3 oz and is growing and growing. He has started to wear clothing which we think is so cute! He is pretty much holding his own. We are very happy with his progress.

Drew is doing okay. His surgeons put in a reservoir in order to better access his brain to tap his fluid. They gave thought to putting in a shunt but changed their minds as he is still too small at this time. He did okay with the reservoir placement, but they have not fed him since Thursday. He has been having problems with his oxygen and Co2 so they have raised his vent settings. He has pneumonia and is being treated for that. The poor little guy has had so many things wrong with him we feel so bad. They used his new reservoir to tap him and removed 15 ml of fluid. He seemed more comfortable after that. He weighs 2 lbs, 5 oz. We have noticed that he does not really sleep he just cat naps that should make things interesting when he comes home ;)

Amber held both boys today. It has been about 2.5 weeks since the first time we held Drew. Drew did well and he hung in there for about an hour and a half. Ever since he has been at UCD he doesn't really sleep. It is really loud there and they just have him in a bed where all the noise can be heard. We can't wait until he goes back to Mercy. At Mercy the swaddle them and allow them to rest. Mercy is also much better with parents and giving updates daily.

Brody loves to be held and talked to. They are even talking about taking him off the C-pap and moving him to a nasal cannula. Big step!

Tuesday, July 14, 2009

The Tiniest Cry

Brody came off the vent again today. He is eating and his feeds are going well. They are adding 1 ml every 12 hours. As of midnight he was eating 11 ml and tolerating very well. We haven't been able to hold him again since he went back on the oscillator, but after work last night I went back to the hospital and I got to hold him and hear him cry for the very FIRST time! It was very tiny but so cute. He did very well and seemed to enjoy being held. He is also up to 2 lbs now! Lil porker!

Drew got tapped on Sunday and they removed 9 ml of fluid from his brain. They expect that they will have to do it again today (Tues). He is still not tolerating his feeds very well, but he has had lots going on. He is gaining weight also and weighs 1 lb 14 oz.

Saturday, July 11, 2009

One Step Back
















We got some news about Drew last night. He has developed hydrocephalus or fluid on his brain. It is fairly common in babies with Grade III or IV intraventricular hemorrhage. They noticed that his head circumference had increased in size so they performed an ultrasound of his brain and discovered that his bleed has improved (good news) to a grade II on the left and a grade III on the right. This is when they discovered that he had hydrocephalus (bad news). So in the next few days they will have to tap his brain. A thin needle will be inserted into the brain to extract the fluid. He will eventually have a little port put in his head in order to be able to more readily access the site. He may also eventually need to have a shunt placed. This is a step back but we were fully prepared for this as it is very, very common in children with bleeds. They continue to try his feeds and he is doing okay with that. He will likely remain at UC Davis for sometime.


Brody is still doing well. Still on the oscillator vent. But up to 6 ml every three hours on his feeds which is awesome. They may trying taking him off the vent again in a few days. He is still on antibiotics for his infection, other than that he is doing great!

Friday, July 10, 2009







Just a few pics of us holding Mr. Brody

Thursday, July 9, 2009

Brody and Drew's birth story

So I waited three weeks to do this I will try to remember as best as I can.

Amber had been in the hospital on bedrest for three weeks prior to the boys birth. On Thursday night (June 18) Amber had been having cramps and pain starting around midnight. She was told by her nurse that she was having the cramps because of a bladder infection and that she was not emptying her bladder all the way. She continued to have pain and told her nurse that she had bladder infections in the past and they did not feel like this. They put her on the monitor and no contractions were picked up. This continued all night and into the next morning. When her new nurse came on in the morning she told her the same thing. Carleigh and I were supposed to come and see her that morning but she asked us not to come because she was not feeling well. The pain and cramping continued. She was given a shot and additional meds to try to stop her labor. Finally someone called the doctor and told them they were going to check her. She was completely dilated. By this time I was already on my way to the hospital. She called me and told me they were taking her for a c-section. I arrived at hospital (before doctor I might add) and they were prepping her for a c-section. We knew the boys would be small (24 weeks, 3days). I went into the OR and she was as white as sheet from vomiting. At 3:35 pm Brody Daniel was brought into the world weighing 1 lb 12 oz, his brother, Drew Steven followed at 3:37 pm weighing 1 lb 12.5 oz. They intibated both boys in the delivery room right in front of us. The first hurdle was them making it out of the delivery room alive. They did that and although it has been a roller coaster. Drew had had two surgeries one his intestines because he perforated due to necratizing entercolitis. They removed 2 cm and he has an ostomy. He also had PDA ligation. They will be three weeks old tomorrow. It is going to be a long road but they are fighters and we follow their lead.
I decided to start a blog for the boys to keep people updated on their progress and I will also try to post recent pictures of them here.

Brody- He is doing well today. He actually went back on the oscillator due to elevated C02, but the doctors have assured us that he is doing well and they have upped his feedings to 3 cc every 3 hours. WOW, buddy. He weighs 1 lb 13 oz. or 840 grams.

Drew- Drew continues to do well. He started feeds yeterday and he is not tolerating them as well as Brody, but we are happy he is eating. He will have an x-ray of his abdomen and chest today as well as an ultrasound to check his brain bleed (as you know he has a Grade IV bleed). I will post those results soon! He weighs 820 grams or 1 pound 12 oz.

We love our little boys so much. Thank you for all the positive thoughts, well wishes and prayers. More to come soon.