From Greg

Everybody is doing great! The babies are getting bigger and bigger everyday. The are cooing, smiling, and giggling now. What a treat! We took a trip the the Pumpkin Patch for Halloween. Isabel didn't seem to enjoy it very much but she was really cute in her costume. We are starting to get a little more sleep. They are staying asleep for 4-5 hours at a time. They get up to eat in the middle of the night and go back to sleep for a few more hours.

Although Isabel has some medical issues that are still not completely diagnosed and treated, we have faith that these will be resolved with time. One of her kidneys is small. The doctors believe this is causing her high blood pressure (which is being treated). We are going for an extensive scanning procedure on Tuesday the 23rd. Immediately following the scan, we have another appointment to discuss the results. It's possible her kidney has limited or no function, we will just have to see. It is also possible that it is fully functioning and will grow to normal size. We understand that these things are in God's hands and that he will show us how to manage the situation and help Isabel to continue to progress forward regardless of the results.

The challenge, stress, and pressure of all of those sleepless nights, NICU visits, and doctor's appointments simply melt away with one smile or one giggle from either Alexander or Isabel. We are so blessed.

Thank you all for your continued love, support, kindness, and generosity.

All Is Well.

From Greg:

Well, I guess I should feel bad since we haven't posted anything in a couple of weeks. But it seems as though the feeling of guilt dissipates as the level of delirium increases, which is brought on by an increase in sleep deprivation. I have a riddle for those of you who are mathematically inclined, when does 1 + 2 + 1 + 2 not equal 6? That's right...when we are referring to hours of sleep and shortened intervals as opposed to one long stretch. Since many of you have experienced this, I do not expect a barrage of sympathies, but I thought it might bring a little laughter to your day. =) For the record, I must apologize for the delay in the postings. We have been and continue to be in "survival mode"*, which many of you understand.

Susan has been so wonderful. She has worked exceptionally hard to take care of the babies day in and day out, all hours of the night. We continue to lean on our support system, which I have to say, without it we would be in utter chaos instead of organized chaos. And yes, there is a huge difference between the two! =)

Isabel is now 7lbs 14oz and Alexander is now 9lbs 11oz (what a chunk!). They both have made dramatic strides in the NICU and now at home. What a blessing to have them both with us and so healthy. Alexander continues to be a placid child. While Isabel has been referred to as "independent, strong-willed, and outspoken". I just tell her she is a princess and princesses are allowed to get what they want, when they want it...I figure I will continue to say this for at least the next few months and then that will need to come to a discernible halt...we'll see if I am one of the rare Dad's who has the ability not to spoil his daughter. =) Great news, Isabel is holding up her head already! And, their official due date was just September 2nd. We are still working out some feeding issues with Isabel. She IS eating, but the process is more challenging that you would expect (it can take 45 minutes to an hour for each of the feeding, yikes!). Hopefully, as she gets bigger and bigger, this will become less and less of an issue. Until then, we continue to work diligently to ensure that she receives enough calories each and every day.

As always, I want to thank all of you for your continued prayer and support. Everyday we thank God for all that we have and for all of the wonderful people in our lives.

*for the uninitiated, survival mode means adhering to the following priorities - 1) take care of the babies, 2) everything else is secondary, including clean underwear, getting more than 2 hours of sleep at a time, and showering (I have had to draw the line on this one, but some days are harder than others)

Don't forget to laugh and smile everyday.

Until next time...

From Greg:

Isabel is home! We are all very excited! What a blessing!

She seems so much more peaceful and content at home versus in the NICU. She is continuing to eat very well. And, there is no mistaking when she is hungry...the shrill of her cry is unmatched. =)

I would like to thank the NICU staff, nurses, and doctors for their seemingly endless efforts. I know that Susan and I are not the easiest people to appease. While there were many bumps in the road, they remained professional, sympathetic, and supportive throughout Alexander and Isabel's entire stay. I absolutely believe there is a special place in heaven for all of those people.

Alexander is now 8 lbs. 3 ounces. What a chunk?!! =) Isabel is 6 lbs. 5 ounces and gaining everyday. What a wonderful day...

From Greg:

Well, our lack of a posting over the last few days could be attributed to a hectic schedule or a fear of jinxing Isabel's official discharge. That's right. After a couple of false starts (come on people, it's football season), she is set to come home tomorrow! We are so excited and blessed. Alexander and Isabel will be reunited once again. We will all be home together. While I am certain this will present challenges that I have yet to comprehend, to say that I am overjoyed is an understatement. Along with our family and friends, we have prayed relentlessly and our prayers have been answered. I have to go get ready for church now, but we will work diligently to keep you posted on everyone's progress.

Thank you for your continued love, support, and prayers. It's an amazing feeling to know that so many people care about all of us.

Isabel's Progress

Isabel is doing much better today than she was over the weekend. The negative effects of the immunizations have almost worn off and she is seeming more like her old self. Some of her BP readings are in the desirable range and all of them are lower than they had been. It seems the medication may be starting to work! She is also doing better with the bottle.

Greg and I have been very concerned about Isabel during her feeds. You may remember us mentioning her having bradys (low heart rate) and decreased oxygen saturation. She would turn blue in these situations. It has been very frustrating because it doesn't seem that the physicians understand what we are talking about. Greg and I are sure we don't want to have to do CPR when we get her home. A nurse over the weekend experienced this during a feed and had to give her oxygen. After talking with her, we were able to use her as a voice to the medical director. In addition, Greg spoke with the medical director who was unaware of these problems. It is finally being addressed. They think the reflux is causing her to block her airway (good choice!) and then she ends up turning blue. The plan is to fortify her milk with an elemental formula. This will allow us to increase her calories while decreasing the volume, thus helping her gain weight and help with the reflux. An elemental formula will be easier on her tummy because it is not made with cow's protein.

Let's hope this works. The poor baby has only gained 2 oz in the past 2 weeks for various reasons.

Please continue to keep her in your thoughts and prayers.

Susan

From Greg

Isabel had a tough day today. She had her vaccinations. She is continuing to get her blood pressure medicine, although so far it has not had the anticipated effect. She is struggling to take her feeds by bottle and has had to be fed by tube mostly. She continues to maintain or gain weight. That's the good news. The doctor will reassess her blood pressure and if necessary he will get another consult from a specialist on Monday to determine if a larger dose is needed (even though she is taking a fairly large dose already). The medical staff continues to reassure us that we should not be too worried about her issues, but that only slightly alleviates the worry and frustration. Susan and I continue to focus on staying strong and patient. We pray multiples times a day. We know that God is watching over Isabel and will bring her home to us when it is time. Please continue to pray for Isabel so that she can come home healthy. Alexander keeps telling me that he misses her.

Isabel

I suppose I spoke too soon regarding Isabel's homecoming. Today they did a renal ultrasound to look at the arteries that deliver blood to the Isabel's kidneys. It appears that she has been having some high blood pressure off and on. The ultrasound showed that the artery supplying her right kidney is smaller than it should be. Although the flow of blood is adequate for kidney function (according to this test), her body is receiving signals that her blood pressure needs to increase.

They are going to start her on some medication on an as needed basis to see if that helps the blood pressure. Her blood pressure is not dangerously elevated, however, it is higher than they would expect to see. We don't want to take her home before we know how she will react to the medications, so we anticipate a lengthier stay :(

This condition is something that she should outgrow. I cannot tell you how many times I have heard that! On the upside, she continues to eat well, although she has some problems with her heart rate during feedings.

Please pray that Isabel will heal quickly and that she will come home when her small body is ready. As much as Greg and I would like to have her home, we want her to be as healthy as possible first.

Love,

Susan

Plan for Isabel

We found out yesterday that Isabel is expected to be discharged on Friday! I had always felt that Isabel accomplished most milestones about a week after Alexander, and the same is true here. She has been taking all her bottles without problems. If she continues to do well with that and gain weight, we are all set for a Friday morning homecoming. :)

We just started to get things down with Alexander here at the house, so we will have to readjust all over again with Sweet Isabel being here too! Alexander continues to thrive here at home and we are loving the bonding time.

Please pray that Isabel continues to thrive and progress. We want her home and healthy!!!

Love,

Susan

Isabel's Progress

Last night Isabel took her first bottle in a week! Today she has taken several full bottles. They asked me to go ahead and bring in the car seat for the car seat test. This is where the baby is placed in the car seat on a monitor for an hour to see if they can handle to position and not desat. It won't be long now.

Susan

Visitors

From Greg: One down, one to go. We are working hard to make Alexander's transition from the NICU to home as easy as possible. As someone who attempts to plan every detail of his life, I have found that I no longer have that luxury. Babies are a lot of work! =) Nonetheless, it is so wonderful to have Alexander with us. All of my friends had told me, "you don't understand until you have kids." Well now I understand. Holding our children brings me the greatest joy I have ever experienced. We hope and pray that God decides it is Isabel's time to join us sooner rather than later.

I want to thank everyone for all of their continued prayers and support. We are so blessed.

Because of the difficulty of the transition and since Isabel is still at the NICU, at this time, we are not taking visitors. The logistics are too challenging. Also, we need to keep the home environment as close to "NICU sterile" as possible. After all, Alexander is still a premature baby, even though he does not really act like one. This is certainly not permanent and we will let everyone know once we are taking visitors. In the meantime, if you would like to help (and God bless everyone for helping so far), we can use prepared meals...it is so difficult to find the time to cook. If you want, you can simply drop them off (with a little advanced notice of course). I want everyone to know that Susan and I discussed this topic extensively. This was not an easy decision, but our children's health is the top priority. We love all of you very much and words cannot express the extent of our gratitude. We really cannot wait to have everyone over. Besides, whoever is holding the baby changes the diaper, right? =)

Alexander Home and Isabel Getting Better

Alexander is now home! We are working hard here at the Wilson household, but it is a lot of fun! Alexander is on a schedule and that has made a huge difference. I am amazed, but I have actually been able to sleep some!

Isabel had her feedings restarted on Wednesday and tolerated them well. The doctors think she has an allergy to cow milk protein and that is what caused the extra gas pressure and bleeding. She is on regular breast milk now and doing great! They did a swallow study today and Isabel is having reflux up to her nose...ouch! She is such a little trooper ;) They are going to watch this and play it by ear. Thickeners were suggested, but they want to be careful with her little belly right now.

Thanks to everyone who has been praying for us!! It was so stressful coming home with a new baby AND leaving Isabel behind especially with so many issues. You are appreciated!

Love,

Greg and Susan

Prayers for Isabel Please

Everyone please keep baby Isabel in your prayers. They were unable to resume feedings again today. She continues to have air in her tummy. Fortunately the blood is subsiding. The doctors ruled out several of the more concerning causes, but still are not positive what has caused this problem. The best guess is that she has an allergy or sensitivity to cow protein which is in the formula they had changed her to for discharge. I held her tonight and she is resting peacefully. She had been showing signs of hunger which the nurses say is a good sign. Please pray for our baby girl!

Alexander is still gaining weight and is set for discharge Thursday.

Love,

Susan and Greg

Changes

Well the echos and head scans looked good on both babies today. The plan is still for Alexander to go home Thursday. He is eating really well. The doctor decided to leave Alexander on straight breast milk versus taking a chance that he won't tolerate the supplement again. His growth curve looks good and even though he will not gain as much without the supplement, the doctor is pleased with the growth. We will continue to watch it over the next few days just to make sure.

Isabel was unable to have her swallow study. The doctor was concerned with the amount of blood in her stool and decided to hold off on putting barium in her tummy. They did and x ray and Isabel has a lot of air in her digestive tract. We had to stop all breast milk of any kind so her bowels can rest. She had an IV placed and is receiving fluids for the next couple of days. Please pray that she recovers quickly and can get back on her milk.

It seems we are being tested, but we know we can handle this with a little help from the big guy :)

Love,

Susan

Big Week!

There are a lot of things happening this week, so I will break it down by baby :)

Alexander:
I am almost afraid to type this for fear that the "plan" will change, but Alexander is scheduled to come home on Thursday! We are supposed to room in on Wednesday night and provided everything goes well, we will be taking him home. This week is filled with tests. He has a head ultrasound tomorrow which is a routine procedure. They do not expect to find any bleeding since he didn't have it before. He is also having an echo cardiogram done to look at a heart murmur. Alexander has had this since birth and it has not created a problem, but they want to see how it has progressed. I am told he should grow out of it. On Wednesday a second eye exam will be done to check for retinopathy (also routine). One nagging problem is a small amount of blood in his stool. He was started on a 22 calorie formula to add to his breast milk for when we go home. The medical team is unsure if the bleeding is caused by the formula or if it is caused by something else. He is currently not being supplemented. This means he is getting less calories per ounce, so we pray that he will continue to gain weight without the added calories. If he loses, I'm not sure what the plan is. His weight today is 6 lbs 9 oz.

Isabel:
Isabel is also struggling with possible poor tolerance of the formula added to her milk. She is on straight breast milk for now as well. Isabel will also have the same tests that Alexander is having but she will also undergo a swallow study in the morning. She has been choking on her milk and been unable to recover as quickly as we would like. She has turned blue on us several times. Isabel will have barium added to her milk and a video xray will be able to tell the speech therapist how Isabel is handling the milk. We don't want it to go in her lungs. Until the study tomorrow, we decided it was best to feed her only through the tube to avoid milk ending up in her lungs. Our hope is that it's just prematurity which she will outgrow and eventually begin to pace herself better. Isabel is not going home this week :( We hope she is not more than a week or so behind her brother. Her weight today was 5 lbs 10 oz.

We pray that all tests will turn out positively for our sweet babies. They have been through so much and we are excited to finally be getting them home, but only if they are healthy and ready!

Please pray for a positive week and also for Greg and I as we bring Alexander home. We are not used to doing this baby stuff without the nurses there to back us up!

Love,

Susan

Getting Close....

Over the last several days, Isabel has given us a couple of scares. Several times she has turned blue during her feedings. This is NOT a fun feeling. She has struggled to coordinate her swallowing with breathing and the result has been choking and holding her breath. We had been very worried about her and her progress, but a couple of nights ago she really showed interest in feeding. She really attacked that bottle! Even though she was unable to take much, we were encouraged by how much she wanted to eat and knew it was time. Yesterday she turned a big corner. That sweet baby took 1 full bottle and 90% of another. Over night she took 3 half bottles and then another full bottle this morning. It was like she just finally "got it." Her current weight is 5 lbs 2 oz.

Alexander has taken every bottle that has been offered over the last 24 hours. He is doing great. They say it won't be long now until he can come home and Isabel is close too. I hope by the end of next week we will have at least one Little Wilson home with us! His current weight is 6 lbs 2 oz.

They have weaned them off there meds except for reflux medication and some vitamins. The day is getting closer and Greg and I have been preparing the house. Wednesday we will get the car seat installation inspected. We pray they will be home soon without complications. I am too excited for words!

Love,
Susan

These pictures were taken about a week ago. Janet got these cute outfits for the twins and Regina put their names on them. Too cute!! Isabel is still growing into her hat :)

Tuesday July 20

So, today was kind of a bummer for me. Last night I turned up with a fever. NICU rules don't allow you to visit until you have been fever free for 24 hours. While I appreciate this rule, It does mean not seeing the babies today. Greg will go tonight and work on feeding both babies with a bottle.

As of yesterday Alexander was 5 pounds 7.5 oz and Isabel was 4 pounds 10 oz. These babies are growing like weeds. I spoke with the babies' nurse this morning and they both had a great night. Alexander took 2 full feedings from the bottle and Isabel took 2 partial feedings from the bottle. I am hoping that one or both of them can come home in 2-3 weeks!

Thanks to everyone who has been supporting us with thoughts, prayers, dinner meals, gifts, and visits. we are truly blessed!

Love,

Susan

Friday July 17

Last night Greg and I had a slight scare. The nurse found a little bit of blood in Alexander's feeding residuals. The nurse called the nurse practitioner and although he appeared okay, they did an abdominal x-ray on him. The x-ray did not indicate a problem, but they are keeping an eye on it. Hopefully it is just a one time incident caused by irritation from the nasal gastric tube.

The babies both had their eye exam this week. Because of their prematurity, they are at a higher risk for retinopathy. There are various stages of progression with zero being the lowest. The doctor said that most babies born when Alexander and Isabel were will at least be stage 1, but they were stage zero! So happy!

Alexander currently weighs 5 lbs 2 oz and Isabel is 4 lbs 5 oz. They are really starting to fill out :)

Susan

Both Babies Together Again!

Yesterday I held both Alexander and Isabel together for the first time! They were so content with each other :) Love it!

Sunday July 11

The babies have been doing great this week! Speech therapy began working with them this week on taking a bottle. Before either of them can go home they will have to learn how to take ALL their milk from me or from a bottle. Working the milk out of the bottle is VERY exhausting for them. It was described to us like running 5 miles without any training. They are only allowing each baby to take 2 bottles a day in order to avoid burning too many calories. Alexander did great right away and took half his feeding by mouth. After that he was so tuckered out! It was really cute. Isabel struggled more with the bottle at first and only took about 15-20% of her feeding. She likes to play with the bottle and is still not sure what to do with the milk once it is in her mouth. But, Greg worked with her yesterday and she took half of her feeding with the bottle! What a great daddy! He was so patient with her. Something tells me she is going to be a daddy's girl :)

Isabel is just ounces away from moving to her big girl bed. She is regulating her temperature inside the isolette and once she reaches 4 pounds we will be able to move her to a new bed. Her last weight was 3 pounds 13 oz. Alexander is 4 pounds 10 ounces. From a respiratory standpoint, both babies are doing great. They rarely have an apnea episode anymore.

We are reaching a challenging point in their development. They both have made such great strides, but learning to suck, swallow, and breath while also getting enough calories is vital if they are going to come home. This will take weeks for them to learn. In every other category they are like a typical baby (just smaller), so we have to be patient as they learn how to eat.

Please continue to keep them in your thoughts and prayers!

Susan